Mima's doings

Sorry to Everyone

2009-01-22T17:20:00.002Z

I am so sorry that I haven't been posting, or managing to keep up with comments that people have been leaving. I am fine, real life has just been getting in the way, and I just can't keep up with everything, so a break was in order, but I should have put something up here - it just kind of got away from me.

Christmas was wonderful, I was together with my family in Wales, and Granny came to stay, which was just lovely, it was so nice to get some time with her, and I was really glad that she wasn't on her own the first Christmas after Grampa died. Sheena was caring for me for 5 weeks over the whole period, so everything went so smoothly, and it was great to be with her - I remember how hard it is to be away from your family at Christmas from when I was living in Grand Cayman (I really enjoyed it but there were times when you would get pangs of homesickness).

Healthwise, I have been pottering along, and that basically means that nothing major has happened, but that things aren't great either. My pain levels seem to have been up which means more painkillers, and when you take them more often, they don't work as well which is just one of those things, but all under control. I also don't do as well in the cold, so it has been lots of hot water bottles and blankets. Cold for us is nothing like what some of you get as we rarely see snow, so when we do it is quite exciting!!

Christmas Soon

2008-11-27T11:44:00.002Z

Its amazing how quickly the year moves on, suddenly I find myself catalogue & internet shopping for "just the right things", wrapping presents and trying to resort my Christmas card address list. And all at once, and suddenly you realise how close Christmas actually is. When Sheena left to go to another client it seemed like months until she was coming back, and it was, and yet here we are with only another couple of weeks to go.

I think I have managed to finish my Christmas shopping, and most things are wrapped, but as for the Christmas card list, it is up on my screen, and I am avoiding doing it by doing a post, but it will need to have been finished by the end of the week if I am not going to wipe myself out having to write them all in too short a space of time.

I have just had my birthday which was great. I had a wonderfully full day with loads of visitors and tons of cards which I still have up around my room over a week later! Next to me is a helium balloon, which Mummy gave me, and it is on its very last legs, but having it around has been great fun and so letting go just isn't an option right now. I have discovered the fine art of making it balance on the hoist ceiling track, and the wonderful boing sound it used to make bouncing off the ceiling. It doesn't do that anymore, it goes puht and doesn't bounce at all. Soon it is going to have to go in the bin. But it does have this wonderful smiley face, that is reassuringly happy, so maybe it won't mind.

End of that burst of energy, and Rach is coming this afternoon, so time for a rest & recuperate, which means no Christmas card list today, maybe tomorrow!!

Award

2008-10-24T16:32:00.004+01:00

I am just starting to work my way back through some of my comments, I never open them in my inbox until I am ready to go visiting and say something back, that way I never forget anyone. Its a system that works really well until the computer goes bananas and you have to reinstall everything. I have only got inbox messages from the 1st September and I know that there were still some older than that that I had not got to, I suppose that I will have to draw a line in the sand and hope that everyone forgives me.

Anyway Mae has very kindly given me this lovely award

I have to name 6 things that make me happy:- my family, friends, my beautiful cat Zena, the kindness shown to me by my carers, my lovely garden that I watch through the window, and the birds that come and visit my feeders. Oh and there is one more which is cheating because it makes it seven, but oh well, my TV, and all the wonderful hours of entertainment that it gives me keeping me company when I feel unwell. I have to pass this onto 6 blogs, so I am passing it onto the first 6 that come to visit, and it is a very pretty award!

Cheshire Wife has also given me an award

she has recently moved to my neck of the woods and is doing up a cottage, and it has been great fun to follow her progress! This award then goes to the next 7 people that visit if I get that many - sorry to everyone for the counting that is having to take place!

I have just been given another award as well - what a lucky girl, this time from Rach who has become a really good friend in real life as well as through blogging - something that I think has changed both of our lives in a really good way. This award though I am going to keep for myself. You are supposed to give it to four people in the same country as you, but I really couldn't do that - I hate giving out awards as I always feel that I leave people out. Anyway this time I am going to keep it!

The other thing that I forgot to let you know about last post is that I am safe financially. The part of the bank I was working for has been bought by another bank, so at least my care is safe which is such a huge relief. I can't tell you how many sleepless nights I have had worrying about what was going to happen, and wondering if I was going to be forced into a home - awful. Anyway things are safe now, so onto the next thing!!

Trearddur Trip

2008-10-21T15:07:00.004+01:00

I have just got back from a sneaky couple of days away (no husbands or children) with Rach and Sue. I haven't blogged for ages as I haven't been feeling great, so after a week back on the injections again a few days away was just what the doctor ordered. Sheena got back on Wednesday, we were already packed, and we set off on Thursday morning for the bay.

Rach and Sue arrived down shortly afterwards, and apart from an interruption when Tesco's delivered the food we chattered for most of the next couple of days. They were both really understanding when I needed breaks, and a couple of times they provided a great opportunity for Rach & Sue to go on photo safaris, so they now have some great shots to show for the trip. It was just wonderful, so nice to all be together for more than a couple of hours, and lovely to learn so much more about each other. If you want to see a couple of good photos of me, you will have to check out Rach's blog as she has put hers up already!! Here they are though, my best shots from the weekend, and all taken from bed through the veranda door!

As you can see cameras were very much in evidence, and I know that Rach has some truly awful ones of all of us in Christmas hats - yes we know it isn't Christmas yet, but Sue brought along some crackers which were greeted with great hilarity by all of us, I'm not sure that the photos should ever see the light of day though!! There was one shot which Sheena wants to put up on Facebook, so I think a request to Rach might be in order!!

Back now, and coming down off the stemetil again, so starting to feel the effects kicking in. My new computer is settling in and seems to be mainly sorted - the old one packed up, but thankfully was still under warantee and I have always been a good girl about my back ups, so it has been a rebuilding job with no major losses.

Ouch

2008-09-24T18:19:00.002+01:00

Well, this is the longest bad patch I have had in a while, and I am still not out the other side. And my wonderful Rose is having a much needed holiday! Last week a family friend and my Mum covered the breaks between them, and this week I have managed to find an agency to cover. There have been two different girls, both of whom are lovely, so it has all worked out very well in the end, but I am really looking forward to having Rose back on Monday!!

There is a real co-incidence involved in this as well, one of the carers, Casey, is the granddaughter of Beryl & Dick, a lovely couple who live on the close, just a few doors away from me!!

I also have a new Christes carer this week. She arrived on Sunday and has had an extended handover with Elly who left today. She seems to be settling in very well, but is still learning which means lots of questions, something I don't do very well with when I am not feeling to great. Not her fault though, and that's something that I have to remind myself of. When I am in a lot of pain, quite often I just want everything to go away & just to have peace and quiet with no distractions.

I have also been caught up in the news in a totally different way from anything I have known before, as Lehmans is the company that I used to work for, and to cut a long story short what happens to them effects me financially. I have my fingers crossed that everything is going to work out, but it has been a huge worry for me. Stress is a trigger with both the ME & the MS, so it really hasn't helped the bad patch at all. Oh to have been one of the financial whizz kids and have loads of money stashed in the bank! Sadly not the case for me!! Still I have been very lucky up until now not to have to totally depend on benefits, so right now it is fingers crossed.

Long Absence

2008-08-30T14:48:00.003+01:00

The first thing that I ought to say is sorry. I am here and in one piece, so a big sorry that I haven't blogged sooner, and a big thank you to those of you who have been checking up on me. I have been away for a couple of weeks with my family to Trearddur, which was just wonderful, so nice to all be able to spend time together with no pressures, and with some great visits from friends as well.

I haven't felt like blogging, I didn't know how to share all the mix of emotions as everything was happening. Trearddur was happy and sad. Grampa should have been there, and he was sorely missed but rarely mentioned, everyone seems to be trying to put a brave face on it and get on with it. It was lovely though to see cousins, aunts and uncles and to spend some time with Granny. And we had some really special news as my cousin Naomi got engaged while we were all up there to a lovely guy called Jamie. One of the photos from that evenings celebrations shows Granny laughing, and she actually looks like she means it which is really special. I wasn't able to go as there was no way of getting me and my wheelchair up to their house. Here are Granny and Naomi - not my photo this one, but taken by Rach my cousin and "borrowed" from Facebook!

And that is another of the sads - everyone is doing stuff around me while I am stuck in bed. There was one party that we were going to try and get me to, a friends 40th birthday, but I had a really bad day pain wise so there was no way that it was going to be possible even after all the planning.

One of the really good things though was getting to spend lots of time with Bel, my sister who I totally adore. She is a real character with an amazing sense of humour, wonderful personality and beautiful too - and yes I know that I am biased, but believe me it is true! Another was things like meeting my cousin's new baby Finn, and here is a pic of Mummy with him - he is adorable!

The new Judy came with us as my carer, and did a wonderful job, she fitted right into the family, and was great about being there when she was needed, and disappearing when guests turned up. Bel, Judy and I played a lot of cards as it rained for most of the holiday, and I think that we have got her totally hooked on the game.

While I have been away the painters have been in giving the bungalow an overhaul, so for the first time in years there are no wheelchair marks along all the walls!! I just wanted it nice and simple so magnolia walls with white ceilings and paintwork throughout. It looks lovely, and there are also now no nicotine stains in the corners of my room!! It has been very nearly 4 months now since I gave up, and I still get the odd craving, but I have stayed strong, even though I have been around other people smoking for the first time - ooohh the temptation though!!

Sheena has arrived back from her trip back home to South Africa, and it is great to see her. I know that the first few days are always hard for her as she gets used to being away from her family again, but she says that she is pleased to see me - I am very lucky to have such a great carer in her and in Rose. Rose is going to be taking a holiday in a couple of weeks as her daughter is coming over, so my relief carer will be changing, Cathy will hopefully be covering some of the days as she has been before, but there will be at least one new carer too. And a new Christies carer at the same time - it is going to be interesting to say the least.

Anyway there it is, I am ok, still a little sad, not feeling brilliant, but just awol and daunted by doing a new post when I still haven't managed to catch up with everyone else. I'm not gone though!!

Awards

2008-08-10T17:36:00.008+01:00

Firstly and most importantly I would like to say a big thank you to everyone who has given me so much support over the last few weeks, it has really helped to know that people cared and were praying for me and for my family. Everyone is remembering Grampa with everything that they do, but doing their best to carry on with life. I have gotten terribly behind with everyone's blogs, and am going up to Trearddur on Friday to join the rest of my family for a couple of weeks, so will end up even further behind as I am not going to have a chance to catch up before I go let alone anything more that might be needed. It has been stopping me blogging though, and I think that that is a really bad thing, so I am going to blog today anyway, and ask for everyone's patience. What I think I am going to do is start again with a clean slate when I get back, and not even try to catch up as it is just going to be overwhelming. I'm sorry to all my friends, but I'm just not going to manage it any other way.

The actual day of the services went really well, we started at the crematorium with just part of the family, my Granny, her children, my sister, and one of my cousins. The service was short but lovely, and along with the memorial was taken by a vicar that Grampa knew very well who is actually retired, but came back to do this for Grampa. The memorial was beautiful, that is the only way to describe it. Both were obviously very sad with many tears being shed, but the eulogy was well spoken with great pride by my uncle and a couple of my cousins did readings. The church was absolutely packed with people who had come to pay their respects to Grampa, and from all different areas of his life - Trearddur and sailing, his art, his church work, the village, his bridge, and the list goes on, all with wonderful happy memories to share. After the service we went on to the village hall for the wake, but by this point I was just exhausted, and had consumed rather a lot of painkillers and anti-spasm drugs, so it was time to get me home, but I heard later that people had stayed for ages talking of Grampa and sharing memories, before the rest of the family had headed to Grannys to have fish & chips. As I said a beautiful day.

Since then I have felt much better about Grampa, but lost otherwise. The service helped me to say goodbye to him, and he had led a long and full life, but a part of me really feels that it should have been me going not him. This illness has had me in its clutches since 2001 (with several major problems in the years before that), but 2001 was when my life as I knew it was over, and I had to relearn what life was about. But it hasn't taken me, and I have been left in limbo, not dead, but not living either. Something that I really struggle with. I asked my local vicar Lesley to come out and give me communion this week, and we had a long talk about several things which has really helped.

While I have been awol, several people have very kindly honoured me with awards. These came from Jules who has very kindly given me two! Jules along with most of my other blogging friends has also been really kind to me during the last few weeks which have been horrible. And it has been much appreciated.

San at A Life With a View has also very kindly given me an award she thinks that I'm just plain fun to read, a huge compliment especially when everything has been so miserable recently!

Sandi at Holding Patterns has given me sharing the love! Something that I totally believe in, we can never have enough support and love, every little bit that gets passed on is precious.

Crazy Cath has awarded me too, with I've got a friend in you, a sentiment that is happily returned to her!

Neereandear has also given me an award, a very beautiful one called the Wylde Woman award, and I need to link back to Tammy Vitale, who is the artist who created it. I have to admit the one person that this award made me think of is San, who as another artist would really appreciate it.

These awards are for everyone, you have all be so kind and supportive, and I don't know how to thank you, so sharing these will have to be it! Please help yourself to one or many that you don't have.

Grampa

2008-07-30T15:24:00.002+01:00

I have tried to write about this several times in the last few days, it makes me reach for a cigarette (which I don't give in to), then I just don't know what to say. Grampa died on Thursday late afternoon.

Until Tuesday he was spending most of his time sleeping, but still managing to get downstairs to sit in his chair in the sitting room, and in very little pain. He collapsed downstairs on Tuesday, his legs just gave way and wouldn't hold him anymore, so an ambulance had to be called to get him back up stairs to bed. Things moved very quickly from there, and he had to be sedated to stop him falling out of bed (some idiot had decided that it would be a health and safety risk for the hospital bed to have bed sides - don't even mention that one to me). Mummy and Granny were both with him on Thursday, sitting either side of him as he passed away. So there are many good things to be said about his death as it could have been worse in so many ways, and he had lived a long and wonderful 86 years. Doesn't stop me missing him though, or stop the pain for Mummy, Granny, the rest of the family and his friends.

He was an amazing man, he signed up (WWII) for the Navy straight from school rather than go to Cambridge University which was where he was headed, and was captured by the Nazi's during the St. Nazaire raid. He was lucky to survive this at all as so many died, but he was terribly wounded, and lived with not only shrapnel scars all over his body, but bits of shrapnel still in him, which meant no MRI's when they were trying to look for the cancer. As a POW his wounds were barely treated, and from my understanding it was those that lived that were then transferred to the camps. He was still only 19. He spent 3 years in those camps, and never talked about it to any of us afterwards, so we can only imagine how bad it must have been.

After the raid it was months before anyone knew that Grampa was alive, in fact a relative in Canada spotted him in a photo, and sent it back to his family and Granny. After the war he went on to marry Granny, and then had four children, my Mum being the eldest. He was the strongest, most amazing man that I have ever had the privilege of knowing, and it will be an honour to be at the service on Friday. Just writing this has got me crying, but I needed to put it on paper, and explain why I have been gone for so long. I've not got to blogs, I can't quite manage to be in anyone else's lives at the moment, so I'm sorry to everyone, but I'm sure that you understand.

Coping, and not coping!

2008-07-12T16:54:00.002+01:00

I'm behind, with just about everything right now. I am not feeling so well, and am sleeping most of the time. As a result I just can't keep up with what I am supposed to be doing on a day to day basis, let alone everyone's blogs that I normally read, so I am really sorry to everyone who has been getting neglected. I am having a few hours in the afternoon when I feel reasonable, and it is a real balancing act working out what needs to get done, or using it for what I would like to do! Yesterday I chose what I wanted and Rach came to visit. It was just lovely, a wonderful highlight to my day. Lynn and her daughter Robyn popped in for 1/2 hour this morning so it was great to catch up with them before they go off on holiday. Other than Mummy that's it for visitors this week, which has actually been very lucky considering the state I am in! We are not sure what has caused this, but it might be a bladder infection again.

The other important thing is that Grampa is holding on. He is still getting downstairs some days which is great to hear, but it is all a bit unpredictable. Mummy has been over lots and they seem to be coping very well, and she said the atmosphere was very peaceful which is really nice to hear.

We have handover next week, with a brand new carer arriving on Monday. There is going to be an extended handover (a really good thing) where she is here shadowing Des for a few days before Des goes on Wednesday and Ellie the new carer officially takes over. She doesn't have any experience and is a bit younger than the carers that normally come here at 29, so it's fingers crossed time again. I don't find it too bad to cope with when I am ok, but when I am feeling poorly a bad handover can really set me back even further. Once again it is fingers crossed time and we just have to hope that she is lovely.

Visiting in and out

2008-07-04T17:46:00.002+01:00

Today I really want to blog, but am not sure quite how to go about it. I started on the injections on Monday not knowing if it was going to be possible to visit Grampa or not, but wanting to make sure that if it was, I was going to be there. On Wednesday evening Granny said that it would be ok, and today (Friday) was decided upon as the best day. Then yesterday I got a phone call from Mummy to say that Grampa had fallen and was not so good, so it might not be possible, but that Granny would ring this morning. So its been a week of suspense. Granny rang this morning to say that we were on, so I kicked everything into final gear here, only to find that the District Nurses were dealing with an emergency and not sure when they were going to get here to give me my injection, I had a conflab with Mummy and decided not to call Granny until we knew for certain what was going on.

Then Granny called to say that their District Nurses hadn't arrived, and that it might not be possible to visit after all. The phone calls carried on, and my nurses arrived to give me my injection around 10 am so not too late, so I phoned Granny back to let her know that all was OK my end, and she said that a carer had arrived and was giving Grampa his bed bath, so she would call me if it was going to be ok to visit. Eventually I decided to get everything ready anyway, and took my pre-car meds, and phoned Rose (for the third time that morning!) and arranged for her to come at 11.30. Then Granny phoned back to say all was ok at their end, and how quickly could we get there as Grampa was up and awake! So we got me dressed, packed the emergency bag, and waited for Rose to arrive.

It was so lovely to see Grampa and spend some time with him, I was there for about 3/4 of an hour, and he was awake and talking to me as well which was just lovely. But it is all terribly sad as well, he is getting worse quite fast, and this was almost certainly the last time that I will see him. My mind just wont process it, I keep coming close to tears, then stopping again. Grampa just wants happy chat visits, so it means that you don't get the opportunity to tell him just how much he means to you, and how much you are going to miss him, but I think he knows that. In fact I'm sure that he does.

On the way home from Granny and Grampa's we stopped off at Mummy's house to say hi, and see what they have been doing with the garden which is being landscaped at the moment (and in order to have a really big hug). Then back home where I spent the next couple of hours holding Rose's hand and not really knowing what to say. I still don't. I can tell you what happened, but how I feel about it is a totally different matter. I just don't seem to be able to get beyond feeling numb right now, although I'm sure that I will, maybe just not yet.

Onto other news! Uncle Neilo (my Dad's brother) came for a cup of tea yesterday, and was bemused to have to have his picture taken for the blog, but was on fantastic form, so he had me laughing and left me in the most fantastic mood. And here he is

He and his wife are currently in the middle of a huge project to turn a barn in the Alps into a house, which will then be able to be split into two flats if they want to, so they can let it out when they are not using it. Wow what a project, Neilo had the photos with him and it looks amazing. They are very nearly done now, and are back in the UK for a quick visit before heading off once again!

I have also been given another award, this time from Lavinia Ladyslipper of the Bird Bath Chronicles. She has created this award, and unlike other awards it is not mean't for passing on, just a recognition of people that try and live in a bird friendly way and most especially those with bird baths! So a big thank you to her.

I'm officially dirty!

2008-07-01T17:16:00.000+01:00

Debs from The Lehners in France has very kindly given me this award which makes me a very lucky girl. There don't seem to be any rules attached to this one, so I am going to give it to my three favourite reads of the moment (a situation which does change frequently!)

So this award goes to Rach at What Now, OvaGirl at L'eggs up and Laughing, and Aims at the Big Blue Barn West.

The other big bit of news is that Nina at Around the Writers Block has turned me into a character in her latest novel called Arranging Love. Word of warning to those that haven't read her work before - its erotic, but if you want to find out just how naughty Nina thinks I am then here is a link to buy the novel as it is published today. An email dropped into my inbox today with my copy, so I am looking forward to a good but dirty read!

I have to admit that I have cheated with this post, and written it over several days, but there is one more thing that I have to add in before I send it out into the world, and that is a little bit about the lovely afternoon that I have just spent with Rach and Sue. What is so wonderful is that because we all read each others blogs, we know each other in a way that it would be very difficult to know in a new friend, and therefore we are not afraid of sharing the things that scare us and we would otherwise find hard to share. It makes for a really strong bond between us, and just a wonderful way to spend up my days energy. Now I am dead to the world, and payback is just descending upon me! Well worth it.

And a really late addition, GoneBackSouth has just given me this award

which due to lack of spoons left in my tired hands I am awarding to the 3rd, 7th and 9th people that comment - there that should be random enough to confuse you, and sorry for making you count!!

Arkle Clan

2008-06-28T18:52:00.003+01:00

On Thursday James and Suzannah came to visit, and then they have been again today with Michael and Soph for a catch up on their way to see Granny and Grampa. Great to see them all, but I'm more squeamish than I thought as Soph was explaining how she had pierced her ear herself - not something that I could ever manage to do, she must have a much higher pain threshold than I have!!

Bel has also been today, she arrived up yesterday and saw Granny and Grampa then, before with Mummy visiting here this morning, going home for lunch, then coming back after the Arkle clan had been this afternoon and we all watched the Murray tennis match together. Mummy decided that she was tired and jumped into bed with me which was lovely. And comfy as the new mattress finally arrived yesterday after 2 1/2 months. Bel is heading back to London tomorrow morning ready to start her new contract on Monday. This one is for 6 months with Cobham, who are something to do with defence, but I am ashamed to admit that I haven't heard of them, so I am going to have to look them up on the internet and find out a bit about them! Its just not getting my mouth watering in the same way as Cadburys did!!

I've also had visits from Annie Midwood and my counsellor this week, alongside handover, and generally not feeling brilliant, so yet again I am falling behind with everything! Still tomorrow will be catch up day, before we head into the new week. Handover went very well this week, Judy finished up her three weeks, and Des came back for the next three. Judy and I didn't have the best first few days, and I really wasn't sure how I was going to cope for three weeks. She like many other of the live-in carers had not done care work before, and it took a while to adjust, but by the end of her time here I was really enjoying her company, and if it works out I will look forward to having her back. I know that she is currently booked up for the next short while, then going away for a couple of months travelling, so maybe when she gets back. As I had the camera out today I thought I would take some shots of Des so you could all see what she looks like!

The news from Granny and Grampa is mixed, Grampa is getting much weaker, but is still getting up to see visitors which is good news. I am going back on the injections starting Monday, and hoping to go over and see him either on Thursday or Friday, but it is all going to be dependent on how he is, so I have my fingers crossed.

My little Oasis

2008-06-24T18:22:00.005+01:00

Grampa is still hanging on, but we have definitely moved into a new stage of his illness, twice now the doctor has been out and said not long, and twice now he has rallied, and this afternoon he was sitting in his chair downstairs watching Wimbledon. He is still having good patches, and is still fighting, but you don't know what the next hour is going to bring. He is sleeping most of the time (and when I say watching Wimbledon, you can probably put that in quotes!). Mummy is staying with them for the next couple of days which is great, and from what I understand the person from Social Services is finally going tomorrow. Luckily the nurses have been much better organised and have been helping get Grampa to the bathroom and things like that. He really is an old soldier and is fighting this with every once. Mummy says that its peaceful there though which is a good thing. I am just so torn up not knowing what is going on. I am getting some snippets second hand from Bel, and some from Mummy, but it just isn't enough, as I lie here thinking about them all. A bit like with the smoking in bed there is no distraction from it. Anyway onto happier things.

This post has been inspired in part by Near and Dear and by Crystal Jigsaw who have both recently taken us on tours of their surroundings, so I thought I would take some happy snaps of my garden which is what I look out onto from bed. We tucked me into the wheelchair, and parked me first at the back door where I took these

And then down the little path to give you a better view of the roses

And then straight back to be for a rest!

Grampa - turn for the worse

2008-06-21T17:23:00.002+01:00

Its been a bit of an odd day here as Grampa has taken a turn for the worse, and Mummy is over there providing what support she can. Last night he had something called rigor, which is when you feel cold and shivery, but your temperature is up. I looked it up on the internet (what did we do without it), and apparently it normally happens with an infection. He is feeling better than he was thank goodness, so it probably isn't that, and is now sitting up in bed, and has eaten some croissants. It just brings things ever closer, and leaves you with that awful feeling, is this just a set back, or is it the start of the next stage. Mummy is staying the night with them tonight, and as the doctor was called out last night all the systems seem to have kicked into gear and the district nurses are now calling regularly which is great news.

Luckily Rose was here when Mummy called (which she shouldn’t be with it being the weekend, but she had agreed to do an extra couple of hours), and she is such a huge support. It was the first time in ages that I really felt that I needed a cigarette – resisted though thank goodness. I hate that I can’t do anything to help, and feel really useless sat here. Trying to keep busy so I don't think about it, but I know that I might have had my last trip over to see him. Fingers crossed that is not the case, but I am trying (as always) to be realistic. I hope for his sake that this stage is not long and drawn out, because it must be awful to go through, but it is so difficult to say goodbye to someone and accept that they are going. My head knows it is happening, and each time I have seen him he has looked worse, but I don't want it to be yet, I want just one more hug with him. But I think I will always feel that way.

It is so different from when Granny Trindle died, I was able to be at the hospital nearly every day, and sat holding her hand, making sure that she was ok and that the nurses were looking after her. It isn't my place to do that with Grampa as Granny and Mummy are there, so even if I were able it wouldn't be right for me to be doing it. And if I feel bad, I can't even imagine how Granny and Mummy must feel right now. And Mummy will have to be strong for Granny. Barry is going to be taking her over some night things later, so she will have a chance for someone to look out for her which is good. When she phoned Granny was up sat with Grampa (who has slept most of the day) as he was awake, so Mummy must have been sat by herself downstairs, and all alone. Awful.

Car Journeys

2008-06-16T17:48:00.004+01:00

What a lovely couple of days, Mummy came over on yesterday morning, and then extra special, Bel came for a flying visit in the afternoon on her way back from a weekend in Trearddur with a friend. It was wonderful to see her, but I'm afraid that I forgot to get the camera out!

I didn't forget today though! Rach has been over for a visit, and we have both had our cameras out, Rach has been trying out my macro lens as she is wondering if she should get one for her camera (obviously the answer is yes, but she now has to convince her other half!).

Today also had a downside though. When Rose arrived for work she said that she had something that she wanted to talk to me about, and it turns out that her Dyson is being delivered tomorrow morning. Normally not a problem as she works in the afternoon, but tomorrow she was supposed to be taking me to the hospital for another doctors visit. Judy the current live-in carer is new and hasn't been in the car with me at all, so if I had to she could have driven, but luckily I have managed to get hold of Mummy this evening and she is going to drive. I hate asking her though. I am supposed to be independent, and she has enough on her plate with doing all of Granny and Grampas shopping and things like that without having to take me on as well. I think what I mostly feel though is disappointed. Rose has never let me down before, and she has been here for over three years, so that is quite something to say, but I do still feel let down by her. If Mummy had been doing something I would have been asking her to cancel it, as it is she is going to the dentist, and can come straight from there, but it is still leaving a bitter taste in my mouth. I think that I don't like to think that a vacuum cleaner is more important than me. Rose did say that if there was no other way that she would do it, but I was feeling under a lot of pressure to say it was ok. I hate that.

This is largely me though, I have got to learn to trust new people driving me in the car when they don't know the way. Its fine as long as I am ok, but if I have had spasms and am drugged up, then they are on their own, and an hour away from home, and have to care for me at the same time. Its a really big ask of someone. But I am being a selfish child and have to learn to let go of control sometimes.

Better late than never

2008-06-13T17:46:00.004+01:00

Finally, a post, this week has got away from me! I had another good day after the post box, and got to sit in the garden for a bit, but that was it before we had a return to what seems to be settling in as a usual level. There have been good things this week though. Firstly Jamsie my uncle came to visit with my Mum on Saturday.

He lives in Australia with his wife Suzannah, and is over on a visit, so very exciting to see him. The trip was planned, but he came over early because of Grampa, so Suzannah will be here next weekend, and I am really looking forward to seeing her too!

I went back on the injections Tuesday, and didn't get the pick up I expected, but they did enable me to get to Granny & Grampa's yesterday which was after all why I was on them. Granny and Grampa were both on really good form, although Grampa didn't look as good, but he was definitely in better spirits than when I saw him a couple of weeks ago which was really nice. They have decided that they would like some help with getting Grampa in and out of the shower as he fell a few days ago, but social services have told them that they are going on a waiting list which is terrible. How can they do that when someone needs the help? They are going to see if they can find a local private agency as they need the help now, not when social services finally decide that they can have it. I am so lucky with my social worker as she has been very supportive of me, but it doesn't seem to be the same everywhere.

I made it to the Post Box

2008-06-05T16:50:00.002+01:00

What an achievement, I went to the Post Box in the wheelchair this afternoon - so I was up without having had the injections, it is the first time I have managed that in a very long time, probably months! So I am feeling very tired, but very pleased with myself. It has been a busy day as well. This morning the physio was here to train the brand new carer - Judy - on how to do the daily exercises, and I ended up having spasms. But we got through it all in the end - it was caused by trying to help with circling both feet at the same time - totally daft reason and very unexpected!

Then this afternoon Rach has been for a visit - she was originally going to be coming, then yesterday she found out she was going to have to work late, so it got cancelled, and then they let her out early. What a treat, we had a good giggle and a catch up, but sadly we got cut short when one of her boys phoned from school with a flat tyre, and she had to go pick him up!

I still can't get over going to the Post Box though, it suddenly opens up all sorts of possibilities again if I am going to be a bit better, including doing some gardening, and even better some photography - its that what if stage. I have to try not to get too excited, as in all likelihood it means a crash tomorrow as I have done too much today, but just that element of possibilities and achievements makes it exciting for today. I am now exhausted, but just elated.

Award & Winning Competitions

2008-06-02T15:57:00.000+01:00

Firstly, the trip to see Grampa went well, he was on good form although obviously not feeling well, but it was just fantastic to see him and get to spend some time with him. I felt a little awkward at first, I wasn't quite sure what to say, but it was only momentary and then everything was ok again. Grampa has always been quiet, he listens intently to everything that is going on with a conversation and every now and then, just when you think he's not listening, he pipes up with a very salient point, or a pertinent question. He just listened with his eyes shut for part of the time, but it was still lovely to be there with him.

I had a very peaceful weekend, but slightly up and down. Yesterday was pretty rocky, but today has been better - lucky really as the new carer arrived for an extended handover. At the moment I have barely said more than hello to her as she has been doing handover stuff with Des, but hopefully tomorrow I will get to chat to her a bit. She is from NZ, and called Judy - which bodes well as the last Judy to be here was lovely!

Nina has very kindly given me an award. She is a wonderful author whose books are great, but a word of warning as they have an over 18 content! And here it is, I'm a blog with purpose!

Not only have I recieved an award from Nina, but it seems I have also won the competition that she has been running, so I will be featuring in one of her upcoming books - very exciting - we will have to wait and see how naughty my character is!

I really hate having to pick 5 blogs as I never know who to choose, so I am officially awarding this to the first 5 people who comment!

Nearly forgot, the non-smoking is 2 months today, an anniversary!

Still Here!

2008-05-28T17:20:00.003+01:00

This is just a quick one to say that I am still here, and apologies to everyone as I haven't been visiting, replying to emails, or basically any other social interaction at all! I had a bad patch, then I have been down to Trearddur for the bank holiday weekend with my family, and got back home yesterday to no phones, no internet, no email (separate problem) and a computer making funny noises. Just what I needed! I had a really lovely time with the family, and most of the problems are sorted after a major push today. I am going over to see Grampa tomorrow, I can't decide if I am really excited, or scared, but I do know it will be wonderful to see him, just a bit of a shock seeing how he is now. I went on the injections starting a week ahead of going away (that is how we normally do it), and even they didn't seem to be picking things up, but they did eventually get there!!

I promise to try and get life back on track after that and get back to some of the many people whose blogs I normally read, and all the people who have been kind enough to comment on mine.

I've just finished typing this and sat down to watch a DVD repeat - my default relax thing, and the DVD player isn't working either - the gremlins have been in while I have been away.

Starlings

2008-05-19T18:48:00.001+01:00

A couple of days ago Rose had a root through the shed to see what we had in the way of bird food, as it was time for a change (different birds come for the different foods!) We have had niger seed out for a while which the gold finches love, and decided on some suet - in various shapes, and popped a large ball, a block, and some small balls out to see what we could attract. It has led to some of the best bird watching that I think we have had in amusement terms, as all the starlings are feeding their babies at the moment, and they have been flocking to get to the suet with little babies in tow. The babies really hassle the mums, and chase them staying as close as possible, and making a real din. Its a feeling many mum's know - as you can see, I think she just wants a break!

My favourite moment came though when a mum landed on the bird bath, one of her babies duly followed her up, and watched as she took a drink. She disappeared off, and the baby stayed and tried to mimic her, and got the shock of its life - he actually jumped backwards and nearly fell off the edge. He obviously hadn't stuck his beak in water before. He was brave enough to have another go, and soon got the hang of drinking. He then went in and had a wash - a real surprise to me as he hadn't seen mum do it, so there must be some sort of natural instinct there!

I have been feeling rough, payback from the trip to Trearddur, so it has been such a treat to have all the fledglings to watch.

Trearddur Phase II

2008-05-19T17:33:00.005+01:00

Here as promised are the best of the Trearddur photos, and I started onto the injections again today as we are going up as a family for the bank holiday weekend. So I am really looking forward to feeling a little better! It was the three of us for a girly weekend, and I got the camera out on Saturday afternoon - where I am in them I didn't take the photo, but they have all been touched up and re-cropped etc.

Trearddur

2008-05-14T18:17:00.003+01:00

The weekend went really well, and everything worked out brilliantly. Sheena drove us down on Friday, after Rose had helped us to pack up me and the car, and we had a smooth journey. The weather has been beautiful in the UK, and Wales didn't fail us, although we had patches of sea haze, mostly it was glorious sunshine. Our food delivery arrived as planned from Tescos Friday evening, and all went to plan as well with the Welsh District Nursing team who gave me my twice daily injections while I was down there. As we have now been doing this for several years it was wonderful catching up with some of familiar faces!!

Lynn drove down and joined us on Saturday morning, and we managed to get me out into the sun on the patio for an hour which was wonderful.

Sunday also dawned beautiful, we managed to get me up again for an hour and we had a very peaceful soup lunch in the sunshine, before Lynn left to go home again. Both afternoons Carol came in to cover for Sheena's time off and it was lovely to see her again. We drove back Monday, and were met by Rose to help get us all sorted. All in all a fantastic trip. We did take some photos while we were on the patio which will have to follow in the next post.

The non-smoking is going well, first big test was at the weekend, with being around a smoker! I wasn't tempted though which shows how well it is going. The next big test is today as I have changed patches to the next strength down. And I have been getting cravings again. But I haven't given in, as I haven't got this far through to fail!

I spoke to Grampa today on the phone, and Granny's cataract operation seems to have been a great success, they saw the specialist yesterday, and he was really pleased with the progress she has made - she has even exceeded expectations. Grampa sees the Oncologist tomorrow, and it sounds as if they are about to start the radiotherapy. Yesterday was a bit of a haze of painkillers for me, today has been a bit better, but I am still feeling numb, I can't believe that it is really happening, and that I may never get to see him again.

2008-05-08T09:33:00.003+01:00

The decision was taken last night that I am not going to see Grampa today - after all the waiting to see if Granny was going to be ok after the operation, it turns out that they have something going on, and I completely understand the principal that one thing a day is enough when you have limited energy. It's very disappointing, but Granny is ok after her cataract operation and that is great news. We will just have to try again!

Bel came for the afternoon & early evening on Monday - it was so nice to spend some relaxed time with her, just really chilled out with some gossiping, and some cards! Rach and Sue came yesterday, which was great, and a welcome relief from what has not been a very good few days. And I should be feeling much better as I started the Stemetil injections on Tuesday getting ready for going to Trearddur at the weekend. But I haven't, I have been feeling rubbish!! So sorry for the lack of posts, and lack of comments as well, I will do my best to catch up today, but I will end up getting behind again over the weekend as I will be off the internet!! I'm so looking forward to seeing the sea again, and hopefully this lovely weather will last and we can open the patio door and let in that lovely sea air, and maybe, just maybe I will be well enough to sit out on the patio for a bit. Fingers crossed.

Just been to visit Crazy Cath's blog who is also giving up smoking, and forgot to say that all is still going well on that front. I have days when I don't feel the urge at all, then days (like today) when the pain is up, or something stressful happens and I really want one. But I am resisting. I haven't got this far to give in!

Bad News

2008-05-01T18:31:00.003+01:00

I don't even know where to start today. Grampa saw the Oncologist on Tuesday, and the cancer has spread to both his liver and lungs, so the plan is to do radiotherapy to make him more comfortable, but there is nothing else they can do, and it doesn't sound as if he has got very long.

I am supposed to be going to Trearddur next weekend with Lynn for a girly weekend, so have organised to go back on the injections, starting on Tuesday. I think I am going to blow the energy reserves and try and go over to see him Thursday and to hell with the consequences. (Just as a quick aside, the better days last week didn't last, and from Friday onwards I have been back in painkiller land.) Mummy is going to bring the red manual wheelchair back from Trearddur (they are going up today for the weekend), and we will have to walk me for the bits we can't do in the chair. I can't bear the thought of not getting over there, and I want to see him before he gets any worse. I talked to Mummy about cancelling the weekend and going to see Granny & Grampa, but she said that it would upset them if I changed my plans like that.

Mummy went over this morning, and then came for tea this afternoon, and was very upset. He has already drawn into himself, and she thinks that he is in a lot of pain - she said it was like talking to me when I am really not feeling very well, and not a lot gets through. I really hope that someone is going to sort out pain relief for him, but I'm not sure that they will ask the doctor for help. Grampa is still refusing to have anyone else help them. Granny goes in for her cataract operation next Tuesday, and even though he was not well enough to get up and greet Mummy today, he thinks he will be able to cook supper for her when she gets home. Mummy offered to come and get something sorted for them, but the answer from Grampa was no. It seems that Granny is realising that they may need help, but Grampa won't play along.

Its not only Grampa suffering, Granny is as well, not only from losing the person she has spent her whole life with, but isolation as well. If Grampa shuts everyone out, then there is no-one to support Granny when she needs it. There is not a lot I can do other than try and support Mummy the best I can as she is being torn in two by wanting to help, and being shut out.

Rose is going through the mill as well, her mother-in-law lost her battle with cancer on Tuesday, so today after Mummy left we just sat together in a comfortable silence holding each others hands. Oh for the power to change things.

Celebrations and Worries

2008-04-24T18:09:00.003+01:00

The last two days have been just fantastic after the most horrible of weeks. I have been feeling dreadful and having to take loads of painkillers, and yesterday I turned a corner, and woke feeling much better, so only one set of painkillers needed all day, and so far today I haven't had any. Not only that but some one cancelled something with Mummy yesterday and she was able to come for a long visit which was wonderful. We had a really chatty, vibrant afternoon, what a treat for both of us. I have been playing scrabble with my cousin Naomi on Facebook for a bit, and I haven't confessed to her yet, but when Mummy comes over she and I have a go together!! I was really careful though not to overdo it and crash again, so no getting out of bed, and no shower.

However, today I woke up feeling better as well, so after spending the first part of the afternoon with my counsellor, then some time sorting out paperwork I took the risk, and I have just been under the beautiful, rushing water for a shower. So clean hair. I can't tell you how horrid it is reaching the point where all you want to do is itch your head - euch. I have had really long bad patches in the past so I know for a fact that it does eventually pass, but it takes a while - anyway I'm clean now, and most of my jobs are done, so let's keep our fingers crossed that I haven't done too much and that I wake up ok tomorrow. I have to confess that today as I was getting out of bed to go in the shower we took a quick detour and went to have a look at the greenhouse where the first batch of onions are starting to sprout!

The only bad thing today is that when I spoke to Grampa today he really didn't sound very well. When I first called he was upstairs resting, and I had a lovely long chat with Granny, and Grampa woke up while I was on the phone. Granny passed me over, and he sounded dreadful, not really following the conversation and complaining about feeling cold. He sees the oncologist next week for the results of his scan, and I am really scared about what they are going to say as he just doesn't seem well at the moment. He is due to start radiotherapy every day fairly soon, and is planning on using hospital transport to go backwards and forwards on his own, but what if he isn't well enough, or if something happens with his bag while he is there. He can't sort his bag out on his own as he can't see well enough, Granny normally does it for him. We have all asked if they need more help, but they keep telling us that they are OK, and that we mustn't worry - but how do you stop?

Ouch!

2008-04-19T17:58:00.006+01:00

The last few days have been truly dreadful, and for no apparent reason, my Mum thinks that possibly I have got a bug, but whatever it is, I'm not enjoying it too much, and this has been going on since Wednesday, so sorry for the lack of posts.

Rach came for a visit on Wednesday, and was a real sweetie as I wasn't feeling great, and managed to get a bad attack of vertigo as well. She coped with everything as though it wasn't happening, and we had a really lovely visit, even if she had to do most of the talking!

Yesterday Lynn came to give me a massage - heaven, we have finally managed to find a way to stop me talking as I even managed to talk through a face mask at one point much to Lynn's amusement. Mummy popped in with Debbie my godmother for a very quick hello as they were on their way back from a memorial service & I wasn't on great form.

I have also been given an award by CrazyCath, a new blogging friend, she has a wonderful sense of humour and is well worth a visit.

I am passing this on to the first 5 visitors to the site! Happy Saturday to you all though!!

Edit: Day 19 and I still haven't had a cigarette since that first week, even with all the pain, which is normally when I smoke the most, so very pleased with myself!

How to overdo it!

2008-04-12T17:26:00.003+01:00

Its easy, make sure you cram in about twice as much as you know that you can cope with! Exactly what I did on Wednesday and Thursday, but there were just things that I didn't want to miss out on! Thursday was not as busy as Wednesday, but both my counsellor and my Mum came which is quite a lot for me. Then yesterday I crashed, big time and had a really horrible day where I couldn't get the pain under control even with the huge amount of painkillers that I have on standby. Today has been better thank goodness, although it has still been a "take it easy" kind of day. I still love to make the most of it when people want to come and visit, especially as everyone seems to end up coming at once! I haven't seen anyone in the last couple of days, and have nothing in my diary until next Wednesday, although I'm sure that my Mum will be coming before that. Oh if life was easy to pace, but I will not say no! I enjoy visits too much, and one moment you think you have it sorted, you have the balance, and the next you roller coaster for no good reason anyway.

The sun has been out this afternoon, and the beautiful pair of collared doves have been here most of the time, so Zena and I have been watching them out of the window. She has never caught birds, so I know not to worry, but the birds are normally pretty cautious when she is outside!! Rose very kindly came in for some extra hours today (and is going to do the same tomorrow) so we have been playing cards, and teaching Des too! She is a total novice but seems to be getting the hang of it.

Smoking: Day 11. I don't think I ever thought I would get that far, so what an achievement. I also haven't had a cigarette since Tuesday which is brilliant. I spoke to the Practice Nurse on Thursday as planned, and I gather that if I had spoken to the other nurse I would be in big trouble as if you have had a cigarette they stop prescribing the patches, but as she understands the situation that I am in, where it is really difficult in terms of distractions etc, she forgave me. But what an incentive to make sure that I stay off. It seems to have worked anyway.

Yesterday I barely had any cravings, but today has been a different story, and I seem to have been clenching my jaw a lot as a result - talk about the tension coming out in other ways!

Something that I read today really set me thinking just how lucky we all are, we have roofs over our heads, lighting at a touch, running water, enough food, let alone the computers that we are all using to communicate. And yet some days it is really hard to keep that in mind, and you want. You want all sorts of things, people, places, things, a boyfriend, children, no pain(!) and heaven knows what else. And when you are wanting it would be really good to be able to remember that and for it to have an impact, but you can't. I think it goes back to being a child when you were being told that you had to finish your plate because there were starving children in the world, and the only answer you can come up with is "Well send it to them then"! Some days you grump. Right now I am going to get Des to open the window for me and get some of that lovely fresh air in. Even though we had huge hail this morning, and a downpour, the sun is shining brightly and I want to make the most of it. And that is a want that I can have!!

2008-04-09T17:34:00.002+01:00

Up until today it has been a very quiet week, in some ways a very good thing as I get recovery time forced upon me, but in other ways a very bad thing as I miss seeing people, and also end up very bored on the better days!! And there have been a mix, Monday was horrid and I was feeling really rough, but luckily today has been a much better day as it was visitors central here.

This morning I had my ex-aunt and cousin for a cup of coffee - sounds more complicated than it is, she used to be married to my uncle and they are now divorced. Soph (my cousin) is applying to Manchester Uni, and had come up for the open day today. They stayed with Mummy and Barry last night and popped in to see Granny and Grampa yesterday afternoon. I gather that they were on good form which is great news. Soph and Sara were also on great form so I heard all about everything that has been going on. They were sadly caught in the floods last year, but are hoping to be back in their house by the end of May, and it sounds as if the decisions are rushing in for curtains, carpets and kitchen bits. I think they are so close now to moving back, and are relieved that it is nearly over.

This afternoon Rach has been for a cup of tea (well I should say for a diet coke as neither of us drinks tea!). We had a really good catch up, and put the world to rights in all the best possible ways. Lynn also popped quickly in with little Robyn on their way back from the school bus to drop a couple of things off. So a really busy day. It always seems to work that way as other than my counsellor coming there is nothing happening now until next week!

Today has also been handover day. As Sheena was going onto another job and Des was coming from off, she arrived yesterday, then Sheena caught the train this morning. Sadly Des was dropping Sheena off at exactly the same time as Sara and Soph were on their way over here. Mummy was supposed to have called before they left and forgot, so in the end she had to come dashing after them so that they could get in! It all worked out in the end though, but that was our little drama for the day! Des is now here for three weeks.

It is amazing how different all the carers are, and it makes a huge difference to everything including the atmosphere in the house. It always takes a couple of days to get used to the changes, and is slightly unsettling even when it is carers that you know coming back. Judy is very boisterous, and the house always feels as if it is buzzing when she is here. Sheena is quieter, more peaceful, and creates a very warm relaxed atmosphere. Des is quieter still and much more formal, so things tend to be much more restrained. Each of them works in their own individual way, even though they are doing much the same thing, and each atmosphere is good to be in, just very different. The really good thing is that each of them now knows what is going on, and there isn't that constant worry that things are not getting done, or wondering what on earth someone is up to which happens with new carers. I know I can trust all of them, so I am much more relaxed overall! At the moment I am booked up until June, when there are three weeks that aren't filled. That will be with one or more new carers, and that will be fingers crossed time again, but it is way off at the moment.

On the smoking, Day 8 today. I have slipped up a couple of times over the past few days, with two yesterday and one the day before. I am consoling myself that it is far better than the 20 - 30 that I was smoking before. Tomorrow is D-day though, and I speak to the practice nurse, so I will find out then how well/badly she thinks I am doing. I have surprised myself though, the problem I am having is not with the habit cigarettes, but is with dealing with the cravings, which are awful. I really though that it would be the habit cigarettes that were difficult (but I also thought that the patches were supposed to stop the cravings, so what did I know!).

Another award and SNOW

2008-04-06T16:15:00.006+01:00

We woke up this morning to a snowy glistening world and a bright blue sky. So pretty. Sadly it didn't last long and soon melted away except in the shadows, but our first snow of the winter, and we got it in spring! We did get me outside to grab a couple of shots, but my fav was this one of a collared dove which I got through the window:

Yesterday I had a surprise visit from Laura, who I hadn't seen for ages, it was great just like old times. We have known each other since we were about 12, and she is now living in Somerset married to Jonnie (who did the cowrie picture for me) and two little ones. So lots to catch up on!

I have also been given another award, this time from San at A Life with a View, so I am feeling really spoilt. She has a wonderful blog often with pictures that she has done for us all to see before they go into the gallery. A must visit blog!

The blog that San had received it from gave it only to the first few people who visited rather than giving it to everyone which is a great idea. (I hate picking out who to give awards to as I always feel that I am leaving someone out.) So this time the award goes to the first 5 people to visit my blog.

I'm back in here editing this, I completely forgot to say: Day 5, and I had half a cig today, but none yesterday, so still doing well, but not as well as I could!

Awards and Oh dear!

2008-04-04T18:18:00.000+01:00

Day 3. Things were going nicely with the no smoking until today when I gave into the cravings and had one. It was horrid, and I ended up having to do my teeth, and I could still smell it. It even made my lungs hurt. I supposed in some ways it is a good thing as my resolve is now stronger than ever. Doing that does make you wonder how you ever got started in the first place. What is very disappointing is that the cravings are still there. How can I possibly be craving something that I really don't want to have. Anyway I won't be giving in again any time in the immediate future!

Lynn came today to de-hair me, so I am once again looking beautiful. I didn't want to do my nails though as I was worried about sitting there not being able to do anything, I thought I might end up smoking - see how that turned out, I could have had then done as I still ended up giving in! Still it was lovely to see her. We are planning a weekend away in Trearddur next month which is very exciting, it will be Lynn, Robyn her daughter, Sheena and me which should be great fun. Craig her husband sadly can't come as he is going to have to work. I am quite nervous as it will be the first time I have been up without my Mum being there to sort everything out since I got ill, so things might be quite chaotic! Like trying to remember where something is in the kitchen when I have barely even entered the room in years .... We will have to wait and see how it goes!!!

I'm a very lucky girl, and Michelle at In the Life of a Child has given me two awards - I feel very special! She is an amazing lady who looks after her two children with amazing courage. Jacqui has medical problems, but is a little angel, if you haven't been to Michelle's blog it is well worth a visit!

I told you I was a lucky girl, Sandi at Holding Patterns has also honoured me with one! She is a retired police woman with a wonderful sense of humour, a loving husband, and a whole load of cats that she looks after and calls her family. Another person well worthy of a visit.

This time I am going to share them with all the people that visit my blog - so yes that's you. I have been offered so much support from all my blogging friends, and I can't tell you how much it means to me, and the strength that it gives me.

Here we go

2008-04-02T18:12:00.003+01:00

This is Day One. I had my last cigarette this morning, and then I put on my patch, and so far I have managed to resist temptation which is great news. I have had a few arguments with myself in my head, but currently common sense is winning, that and a picture of Mummy's face when I tell her!

I had a long conversation with Grampa this morning which was lovely, the bad news is that it seems that his cancer is back, he is going to be going for radiotherapy (I think that is what its called) but they want to do another scan first to see if it has spread or not. As Grampa said it is good news as Granny thought at 87 they would just tell him that they couldn't do anything. I'm really pleased that is not the case, but worried about them both all the same (which they hate, they just want to be able to get on with it themselves). I know at some stage they are not going to be able to cope, and will need help, but they want their independence as long as possible, and have said that they will ask when they need it. It was great to have a chat with him though. So I'm fingers crossed. I always wish on eye lashes, and at the moment they are going to Grampa that he will get better quickly.

This afternoon has been split into two parts, we (Sheena, Rose and I) have been playing cards, and then the rest of the afternoon has been spent learning how to knit. Rose is an excellent knitter, and has started me off with a scarf. Sheena went yesterday to the sewing shop and I had asked for red wool, and she has found some, and it is a lovely red, so that's the plan. I am really enjoying it as well - bonus! Other than that the last few days has been lots of painkillers, but when I am feeling well enough I can do painkillers and knit!

Post stemetil drop off

2008-03-29T10:34:00.002Z

OK, so the stemetil has worn off, that means that I am back to exactly where I was before, stuck in bed with pain levels rising and basically really not feeling so good. Once you have been doing it for a while it becomes normal, and life sort of carries on, but there is this grim patch in-between where I go from being on great form with loads of people around, stuff going on and generally really enjoying it, to the pain/painkiller balancing act, sometimes aching loneliness, and same four walls surrounding me. I will get used to it again, because I always do, but it is like a seriously exaggerated version of the post-holiday blues. Euch. Bel gave me a lovely snuggly red cardigan for Christmas, and I have got it on as a comforter! I always miss Bel, but somehow it is so much worse when I have been able to spend as much time with her as I did over the weekend.

My poor bottom is also covered in lumps that are left behind from the injections, and with this thin mattress I keep catching them under me - ouch! I did make a decision about the mattress this weekend, and that is that I'm getting one, so I have started the range of phone calls, and lets see how long it takes!

The dentist has been this week, and my teeth are all in good order with nothing needing doing, so that's another off the list for a while. Mummy and Barry have been in London for a couple of days to go and see Sarah's show which I gather that they really enjoyed, and Mummy is due to come and visit today which will be great.

Sheena is here at the moment which is great, she is very peaceful and easy going, and we get on like a house on fire which helps as well. It makes such a difference to the whole feeling of the house. One of her sons came over with her when she came back to the UK this time, and had a job organised in London. Sadly it has fallen through and he has returned to South Africa. He is safe, but she is missing him!

The other big decision is that I am going to try and give up smoking. I spoke to the practice nurse and patches are the place to start, she has put them on a prescription, so now a strange wait while I still smoke even though I intend to give up! The bit that is going to be most difficult is not the actual addiction, but the habit, what do I do with my hands instead? Any suggestions are most welcome!

Holidays

2008-03-26T19:09:00.001Z

I have now made it back home after the most wonderful time. The stemetil injections really worked their magic and I was on great form, so able to cope with much more than usual! People around almost all day, and I only had spasms once by overdoing it!! I spent ages with lots of very special people, and really enjoyed it. While I was there I had visits, firstly from Tim, Nicky, Liv & Gwil - well Gwil slept right through - but it was great to see them all. Matthew, Gin, Gus & Daisy also popped in to see me, and I hadn't seen them for ages so had a really good catch up before they went over to the cousins for tea. Said cousins, Louise, Guy, Molly & Alice also came in a couple of times, the one thing that I didn't manage was to actually get the camera out at the relevant times - I was too busy chatting!

We managed to get me out of bed a couple of times, I had lunch with everyone one day, and was up to be around supper being got ready another day. On one of my trips up I remembered to get the camera out - you would think I would know better by now that I should always have it round my neck, but I'm getting there! We wrapped me up and I went out onto the terrace to get the view

It was blowing hard, so the waves were crashing onto the rocks

I got a great one of Sheena in the wind with the sun starting to set

And then on pain of Rose's wrath if I didn't have any photos to show for the trip I managed to get Mummy, Barry (the birthday boy) and Bel to have their photo taken too!

My computer skills were also called into question with both Bel & Mummy. Bel had broken the screen of her mobile phone, so she got another one, then I had to transfer all her numbers off one and onto another, as neither of us was quite sure what we were doing it took about 2 hours! But we did get there in the end. Mummy's computer question was far easier, she just needed some software installing onto her laptop, so that took no time at all.

A lot of the rest of the weekend was taken up with chatting and masses of cards. Bel, Sheena and I played a lot, and it turns out that Bel is quite a card shark, something I had managed to forget, although how that could have slipped my mind I am not quite sure!

Unlike the rest of the UK we were quite lucky with the weather, we did have some rain and hail, but a lot of the time the sun was out even though it was bitterly cold.

I am still slightly feeling the effects of the stemetil, and have had a shower today, and been out of bed for a bit playing cards with Rose and Sheena. Even better I won - which has really helped get me out of the post-holiday blues! Zena sulked when I first got back, and is now spending quite a lot of her day sitting with me making sure that I don't go anywhere!

Sea Air

2008-03-21T10:44:00.002Z

I have made it safely down to Trearddur, and am tucked up in bed looking out at the sea, and watching the white horses as it is blowing a hooly. We have had some sunshine this morning, and I can still see patches of blue sky, but we are due for some more rain today I believe. The sea is beautiful either way though! The journey went well with no spasms, so a huge relief for Sheena who was driving, but I was in a lot of pain by the time that we got here, and pretty worn out. Just as an indication of how bad I was I slept through most of House and didn't even attempt Grey's Anatomy two of my favourite programmes - hopeless.

Sheena seems to be fitting in very well to the chaotic family environment which is so different from being at home, she is very laid back which helps immensely! She has just gone out for a walk to explore down the coast a little, so I am keeping my fingers crossed for her that the rain holds off, we don't want her getting soaked on her first day here - not the right impression of Wales!

It was Barry's (my step-Dad) 70th birthday yesterday, and it was so nice to be here to celebrate with him, they were all supposed to be coming to have a drink with me before supper, but I had fallen asleep, so that had to be postponed!

All Change

2008-03-19T14:01:00.005Z

Its handover today, Judy is off, and Sheena has just arrived. We are all packed up and off to Trearddur tomorrow, so please excuse me if I get a bit behind with my comments! I have finally taken photos of both the card that Sue made for me

and of the cowrie picture that Jonnie made for me - this doesn't work as a photo at all, as it is big, and the thing that makes it amazing is the detail that he has managed to put into it using just charcoal, but at least you then know what I am looking at.

I had a lovely visit from Lynn on Sunday morning - a good chance to catch up on the goings on over the weekend, and brilliant break in the weekend which can get very boring with nothing happening, and not even Rose coming in. And Rach came yesterday. It was great to hear all about her new job, along with various bits of giggling about all and nothing. Other than that things have been quiet. I started back on the injections on Monday, so am feeling a bit better which is nice, but still not quite out of bed - very nearly though, so hopefully while I am away - but I have got my fingers crossed that I am not going to plateau at this stage just before I am able to get out of bed. It is so close now that I can nearly taste it!

Can't wait for tomorrow and my first whiff of sea air. I will be in my wheelchair for the journey, so in an upright position. I don't do particularly well like this, so we will have to drug me up before we go to prevent spasms. I am so excited at the moment, I just need a bed to bed transporter of some kind so we don't need to take me in the car!

My Turn!

2008-03-16T09:51:00.003Z

Zena was keeping her beady eye on us to make sure that we didn't cheat yesterday ....

Superglue and fingers, bad combo!

2008-03-14T15:34:00.003Z

Yesterday I came very close to superglueing my fingers together - silly, silly mistake, and really I ought to know better! When Sue came, she gave me a beautiful card with an extra spoon for me (all to do with the Spoon Theory, see links on the right). It was all handmade in black and white, and she had obviously thought really hard about it, just wonderful and very special. It had been knocked and wasn't quite straight, so I decided in my wisdom that I would straighten it (which involves dangling out of the end of the bed), didn't go as well as I could have hoped, and the card ended up on the floor, with one of the pretty silver studs knocked off. So I went to stick it back on again, and they are little things, and my fingers are too big, so first the bead got stuck to my finger, and then my fingers together. I did eventually manage to get myself loose, but then had to sit with my hands in the air while the glue on my fingers and thumbs set so I didn't get stuck to anything else! The card is now safely back and straight.

I am off to Trearddur next week for a holiday with the family over Easter, and can't wait. We have done the bulk of the packing, so it is nice to have that off the list. Our biggest problem is always the red manual wheelchair. The doorways in Trearddur are normal sized which means it is very difficult to manoeuvre with my proper wheelchair, so when I go to the kitchen for example, we normally do it in the red one. But it wont fit in the car with me and all the clutter that I need to take, so Mummy normally ends up taking it in her car. As she is playing golf in the next few days she doesn't want it yet, but I am worried that we will forget to give it to her on Tuesday, we have written a reminder in the diary, normally a good system, so fingers crossed that it works!

The new cream for my bottom has arrived which is good news, but it is scented which is not. I react really badly to almost all smelly things by going into full body spasms (looks a bit like an epileptic fit). We tried it out this morning and it seems to be ok, I got a bit ticky, but no spasms. How well this works out may depend on how I am doing as I react worse to things when I am not so well. The pharmacist has suggested that we just use the new cream until the bad patch has healed and then go back to the Cavilon, so hopefully it shouldn't be for too long.

I'm still besotted with the beautiful cowrie picture that Jonnie did for me (it just caught my eye again). I wish there was some way to share it with you, I suppose I could try taking a photo, but it just wouldn't show it to its true glory.

Camping out

2008-03-12T15:51:00.003Z

The lovely Rach came to visit on Monday afternoon, just before she started her new job on Tuesday - last afternoon of official freedom. It was great to see her, and we shared Cokes and chatter - she had the Real Thing, and I had the fake stuff! I gather that her first day went well which is great news. Bel has also started her new job at Cadbury's and all the reports are good on that front too, so time now for them both to bed in and get used to new routines and responsibilities!

I spent yesterday afternoon camped out in the sitting room - thanks to Judy you can have a look and see me on the camp bed mattress on the sofa with some of the masses of clutter that came out of my room. (We also had the card table up aka the ironing board!)

A few weeks ago we had an accident, not of the harm to persons type, but of the harm to carpet type! The District Nurse was here, and we were going through the routine as per usual, the old catheter bag came off, and went to be disposed of, the bladder wash went in through my tube, the new bag was fitted, and normally that's it - this time though the company had changed the design of the bag without notice, and the new tap system arrives open (so impractical) so the bladder wash ended up on the floor. Luckily it is only salty water, so we mopped it up and thought nothing more about it, until we realised that it had left a mark! So yesterday the cleaners came in, and we had to empty the room for them to do their magic, which me me, and all my stuff being spread round the bungalow where ever we could find space! The shower chair from the bathroom ended up getting washed by the rain in the garden as we needed the bathroom for my electric wheelchair!!!

My bottom is still the same, no change either way which is I suppose good news, but the District Nurse suggested that we try some different cream (we have a special cream that has to be put on every day which is supposed to prevent pressure sores), so we are waiting for that to arrive at the moment, and hopefully that will help.

Lynn in home clothes and more mattress talk

2008-03-10T11:19:00.001Z

Lynn came for a cup of tea yesterday, which was just great fun, and on top of that she agreed to let me take a few photos as well, and this one was the best.

Now she looks like an angel in the photo, but part of the reason that we get on so well is that she is another Scorpio, and we share a naughty sense of humour. We had a catch up on all the time we had been apart (I hadn't seen her since Friday!!) and set the world to rights. Normally when she is here she is in her work clothes, and yesterday she looked really beautiful in her home clothes - I should have changed lens and taken one of her full length, but it didn't cross my mind until now, so a bit late!

Really big thanks to everyone for the suggestions about my mattress, and I can promise that I have taken it all under advisement. Before I was put on the air mattress last time I had a proper memory foam mattress, so with egg shells and everything! When they wanted me to go onto the air mattress, we never thought it would be anything but for good, and I live in a tiny bungalow without a garage, so nowhere to store a mattress, not that we thought we needed to.

So, when it was decided that I no longer needed the air mattress I didn't have a mattress at all, and the District Nurses supplied me with one of the foam ones that they use in hospital (covered in plastic). The bed I have is a profile bed - a hospital type bed that bends to sit me up, so an ordinary mattress would not work. I am really reluctant to buy another memory foam mattress when I started on pressure sores with those as well. Thus far we have managed to stay ahead of the curve, and my skin hasn't broken, but if things don't improve then it is definitely time to get my savings out and just go the whole hog. Much safer that way than waiting to get a really bad one.

Air Mattress

2008-03-09T08:48:00.002Z

I heard back from the District Nurses, and prevention is no longer the order of the day with the NHS. You now have to already have a serious pressure sore before you get an air mattress, so that is not going to happen. What do I do next??? I am going to wait and see what happens with these vitamin B12 injections, I am already feeling better than I was, I am not needing painkillers everyday, so things are looking up, and I may carry on improving and not need to be in bed the whole time. That's the fingers crossed option as then pressure sores are not going to be a problem. If not and I am mainly stuck in bed then I think it might be time to raid my savings - I do not want to get pressure sores, they are the last thing that I need to top it all off, and I intend to do everything I can to prevent them. But equally I have spent most of the last few days lying on my side so as to relieve the pressure on my sacrum (its basically where your spine ends and your bottom begins, so a difficult area to avoid sitting on! And I really don't want to spent my entire life on my side (it makes typing very difficult among other things!!!).

On a much more positive note, Sandi has given me this lovely award.

Now I'm not very good with awards, and Sandi has only given it to 3 people, but I couldn't restrict myself that far, so here are my 5 (does that just make me greedy!):

Rach at What Now

OvaGirl at L'eggs up and laughing

Sue at I need to take a fancy picture

Nina at Around the Writers Block

and last but not least Casdok at Mother of Shrek

Yesterday I didn't feel so good, but this was made up for by Barry (my step-dad) and Sarah (my step-sister) coming to visit. It was really nice to see them both, and made even happier by the fact that I will see everyone again in less than two weeks for Easter. They were both on great form, and Sarah, like Bel is contracting. She is currently working on marketing for the Ideal Home Show which goes live really soon, so it was fascinating to hear all about what they were up to.

2008-03-07T09:58:00.002Z

The good news is that the pressure sore is now looking better, what a relief. I have spent most of the last few days sitting on my side, but it does seem to have worked. I have asked the District Nurses about an air mattress, but that will be a wait and see, and I don't have my hopes up.

My internet is also fixed, the new box arrived, and the lovely lady from Orange helped me to get it all set up and working, so we are once again wireless with everything back to normal. Health wise things have been up and down, but at least I have been having the ups. Wednesday was a fantastic day, and I had a shower and sat up in the sitting room for a while, but yesterday I paid the price for overdoing it and felt really rubbish.

The one thing that I keep forgetting to say is that the beautiful cowrie picture that Jonnie did for me has now arrived back from the framers, and has taken pride of place at the end of my bed. It is just increadible what talent he has, it is all done in charcoal, and yet he has captured every tiny detail. As I sit in bed my eyes are constantly drawn to it. I am one very lucky girl! You can see other examples of his work here at the Houldsworth Gallery and here at the Rex Irwin Gallery. What you just can't see from the pictures is the scale - everything that he does is life size or bigger, they are just fantastic!

The are several things that I am tussling with at the moment, and one is living with carers. Judy is with me at the moment, and she is someone that I really like, but it doesn't matter how well you get on with someone when you are living in such an enclosed space, and so dependant on someone things start to get on your nerves. It really is just the little things - believe me if she wasn't up to doing the job then she wouldn't be here, and she has been coming for a year now. But I have no escape from it, and the only time when I am truly alone is for 15 minutes on a Saturday morning when the carer goes down to get the paper. Other than that there is someone here. And yet I often feel lonely! I know that my carers care about how I am, especially Rose who has become more like family, but at the end of the day they are paid to be here. Its just a really weird situation. Every aspect of my life (my pee, my bowel movements, when I get my period etc) is discussed daily by the carers at handover - this is what they need to do, but it means that I have almost no privacy. Most of the time it doesn't even cross my mind as it has become so normal to me, but every now and then it makes me sit up and think!

And for the next one .....

2008-03-04T14:16:00.004Z

It seems that I have the beginning of what might be a pressure sore, which is not good news, so I currently have a large padded sticky plaster on my bum which is causing me no end of amusement! A while ago I started with one, but was moved to an air mattress which seemed to work, but as I was up and about so much the District Nurses decided that I didn't need one, which makes total sense. That is until the last few months when things have got worse again, and I'm stuck back in bed. It seems that the whole process is repeating itself! I will get checked again on Friday, so it is fingers crossed that it has improved as I gather that if they get worse and the skin breaks they can be really hard to get rid of.

In other news, Bel came again yesterday, and I tried to get a photo of her, but she wasn't co-operating. I thought I would post the results anyway!!

Timmy came to visit today which was great, I forgot to get the camera out, so he has escaped unharmed! Next time though!! He is in the process of developing a pub in Trearddur, so it was fascinating to hear about what is going on. Can't wait to be able to go visit properly, but I will get to see it from the outside when I go up for Easter.

I had an inspiration yesterday about the wireless connection, and we have now managed to get me hooked up, just with wires everywhere. Not very safe, but at least it is working. The new box has arrived, I just have to get it set up, the lovely Chantel from Orange is going to talk me though it tomorrow.

Photos

2008-03-02T15:48:00.004Z

As promised the photos from last Wednesday, from Nicky, Liv & Gwil's visit. First up is one of Liv playing with my wheelchair controls. It was turned off at this point, but she did manage to turn it on at one stage, so we had to explain that she could use the joystick, but not press the buttons!!

Then one of the family group, I have edited both of these, but just had to say that Gwil isn't dirty or anything like that. He had chicken pox and I have managed to remove most of the spots, but wasn't up to getting rid of the calamine lotion!

This one Judy took of me giving Gwil his bottle which was a real treat. He is such a little sweetie - they both are - when we removed his bottle for the photo he didn't complain at all and just started back up feeding once the photo was over!!

And here is another of Judy's, this time its the invalid internet cafe. Luckily I am still feeling ok, so coming in here has not been a problem.

Bel (my little sis!) came for a short visit this morning, and popped in last night when she arrived. I think she is coming tomorrow as well before heading off into Manchester to see Claire. It has been such a treat having the time with her and hearing about her latest exploits!

Internet Problems

2008-03-01T12:14:00.004Z

I am currently propped up very precariously on the sofa in the sitting room having moved my desk into here (it is on wheels, so not as bad as it sounds!) as my wireless network has gone down, meaning no internet for me in bed. We have managed this today, but it may or may not be possible in the days to come depending on how well I am, so I may not be able to get to everyone's blogs to comment - please forgive me if that is the case! It looks as if it will be about a week before "normal service is resumed". I had a very frustrating time to start with getting it sorted out, but my second call had a very different result, a lovely lady who quickly got to the root of the problem, and couldn't have been more helpful if she tried. It is just a reminder of just how good customer service can be if you get the right person. So its big hoorays to Chantel at Orange from me!

I have had a lovely couple of days, Nicky came with Liv & Gwil on Wednesday to visit, and it was great to see them all. I did take some photos, but they are still on the camera, so if they are any good they will hopefully make the next post! Other than that Wednesday didn't go quite as smoothly as planned, I was due a catheter change on Wednesday am, but the poor district nurse couldn't get it out, so Thursday was spent going to the hospital to get it sorted out there, now all done and sorted thank goodness.

Then yesterday Rach and Sue came. It's odd as we all met through the blog world, and have become friends, yet we all share so much in common, when I first started blogging I had no idea that it would lead to friendships like this. It was a really fun afternoon with lots of chatting and a variety of diet cokes and diet colas! All of us have health problems in the immediate family and it was so nice to be able to compare war stories with others that understood what I was talking about, and I think for all of us it was very reassuring to know that people could just "get it". Sometimes it is really hard share the tough times, whilst the easy times are well just plain easy to share! Oh a clarification that came up yesterday and had caused some confusion, my catheter goes in through my tummy which is why I sometimes have problems with the change - the hole itself heals up too much which makes it difficult to get the tube in and out!

Health wise the last few days have been real cheats - on Weds we thought I would be going straight into the hospital for the change, so I had a Stemetil injection, and I didn't, which mean't I was on great form for Nicky's visit, and then Thurs I had to have one because I was going into the hospital. The effects seem to last for a little while, or maybe they have just given me the boost that I needed to get to the next level, as I seem to be having fewer pain killer days, and more of feeling slightly better. The next step is not to overdo it and crash, so my time in the sitting room is going to have to be really limited, but no internet is a just plain awful thought! Wish me luck with the balancing act!!!!!

And last but by no means least, Bel is on her way up today for a couple of days, which will be just wonderful. She finished her job with ICI yesterday, and starts with Cadburys for a three month contract next Monday - as we are a family of chocoholics I think that this one will suit her down to the ground! Can't wait to see her, although her early start to come up has been rather hampered by a very large, very late night, so she is now due here early evening rather than afternoon!!!!

Better day

2008-02-26T10:37:00.002Z

Just a very quick post to say that yesterday turned out to be a better day. Not only was I feeling a little better (no pain killers all day), but I had a lovely visit from Rach as well. I was well enough to really enjoy it, and hopefully it will all prove to be the start of an improved week.

2008-02-25T11:49:00.002Z

I have started to blog several times this morning, and then deleted it all. So far the B12 injections don't seem to be having any effect which is disappointing, but the nurses did say they could take several weeks to have an effect, so second injection was this morning and I will continue to keep my fingers crossed. But at the moment I am not feeling so good, and that's why I keep deleting because everything I write just ends up sounding miserable.

My Mum and Step-Dad have just been down to London to visit my sister and step-sister, so they spent the last few days together as a family, but with me missing. I know that they have missed me being there, and I wouldn't begrudge them the time for anything, I am so pleased that I have a close family and that they all want to spend time together, but I really missed being with them all.

The good news is that my sister is changing jobs, and will hopefully have a little time in-between, and will be able to come up and see me, which really gives me something to look forward to.

Wonderful Weekend

2008-02-18T19:12:00.003Z

What a magical and wonderful weekend, but it seems that I am now paying the price! I woke up on Friday feeling a little better, so cause for celebration, and a shower as well - meaning that I would be able to greet all my guests over the weekend with clean hair, always a bonus as I didn't think that this would be possible.

Saturday started bright and sunny and with a surprise - Dave called. Although I had given him my number about a month ago he had lost it, so had spent ages working his way through all the J Dixon's in Cheshire trying to find me!! It was lovely to speak to him even if it was a bit weird to start with - he sounds exactly the same, and it must be nearly 10 years since we have last been in phone contact. It was great to hear about what he had been up to, and some really lovely stories about his kids (who he is rightly very proud of!).

In the afternoon Claire came to visit, and we spent hours catching up on all the details of life and generally putting the world to rights, our conversations always dart around all over the place as we get distracted by something else that one of us has to share, so it must sound like utter chaos if someone had been listening. She was on great form and still wonderfully happy with Matt.

Its been a full weekend of catch up with old friends as Sarah and her family came to visit on Sunday. Originally they had planned to come up from London Friday night, but that all changed and they drove up on Sunday morning and came straight here on their way to Manchester. Sheena very kindly did a run to the supermarket to get supplies and made sandwiches for them all. She had also been doing some baking in preparation this week. The boys are mad about our Chocolate Biscuit Cake, and so we had made some for them to have here, and as always a package for them to take home with them afterwards. Everyone was on brilliant form, and we had a great gas about everything that had been happening in our lives. I really enjoy seeing them all, although haven't quite managed to perfect that parent technique of being able to have two conversations and keep an eye on a child at the same time yet!! With the MS I can only cope with one thing at a time, and totally lose track of everything else, so stopping to watch Sam or hear something that Louis has to share is fatal for my conversational skills!! It is such a treat to see them all.

I have had a very peaceful catch up day today but am back onto the painkillers having managed without them for the last few days. Hopefully with a couple of days rest I might pick up again, but I will have to wait and see how that one goes, at least I was lucky enough to be on good form for the weekend.

The B12 injections arrived this morning, and Lisa one of the District Nurses came out to give me the first one this afternoon. I gather that it may take several weeks to feel any difference, but at least we are started. The injection all went well, and I don't seem to have any side-effects which is great news.

Quickie

2008-02-17T09:45:00.003Z

This is just a very quick post to say thank you to Mother of Shrek who has awarded me a Mwah!

I am passing this onto the following:
Rach
L'eggs Up and Laughing
Sue
Around the Writers Block
Trek 4 Fun
Jules Stones
Now What Happens
David, Mr Authorblog himself
Celebration of Life
And last but not least by any way Sandi!

I am having a better couple of days, and just loving it, but will post in full after the weekend, hopefully with some photos!

Finally caught up

2008-02-11T15:56:00.000Z

I have finally nearly caught up with everything, except the paperwork, which can wait another couple of days if it needs to. I just wish that things would improve a little. I had a burst of energy yesterday afternoon, and along with Judy made some flapjack that I really fancied, but am paying the price today with a heap load of pain and feeling awful.

I am really banking on the spring idea from my pain doc, that nearly everyone feels worse over the winter, but improves in the spring. We have had a couple of sunny days, but it is still really cold with hot water bottles in order. The other thing that has been going through my head in the last couple of days is if the new B12 injection is going to make a difference. As I was on the verge of being anaemic, I don't know if that would be affecting me or not, but if it does help, that would be fantastic. As things stand at the moment I am back onto the hour by hour route, and balancing the painkillers. If I take them, the pain is better but I feel spaced out - very, so at the moment I am due for another dose, the pain is up, but I am able to blog and catch up on a few things. In a minute I am going to take them, it will be a relief to feel better, but you then loose the next few hours. This all sounds like a real moan, and I suppose that it is, but I do get fed up with being stuck in what seems like a revolving door.

As regular as ever Switzerland is rearing its ever so peaceful release of a head again. I am still not ready to go that route, but as ever my preparedness gene is kicking in, and I think that I am ready to get things a bit more sorted so that if I do want to go it is much easier. My next problem is going to be a letter from the doctor. I have to have a letter that states my condition and prognosis, which is not something that the doctor is going to be happy to do without an explanation, but how do I explain without sounding as if I am seriously depressed and in need of committing to some institution? Half of me says that he would understand, and half of me says that he may well just refuse if I tell him why.

Almost forgot to give you the good news, I have been given some awards! These came from Sue:

Although todays post is not going to cheer anyone up! And this came from OvaGirl:

Quick update

2008-02-07T13:34:00.000Z

First of all a sorry, for all the unanswered emails, no posts, and lack of comments, I have had a really bad few days, but will hopefully be able to try and catch up with everything over the next few days (as long as things get better!).

Today with the help of a stemetil injection has been a trip to see the gastro consultant. It seems that my vitamin B12 levels are very low and seem to be falling leaving me on the verge of anaemia, so the consultant is putting me onto 3 monthly injections which seems like a nice easy answer! He has taken some more blood tests and is going to monitor the situation to see what happens, and doesn't think it is worth doing cameras unless things don't stabilize. There are various things that could be the cause, but it appears that I am not absorbing it properly. At the moment he is not too worried about finding which it is as it has not got too bad, so I am very reassured by that.

Some people really ought to know better

2008-01-31T19:32:00.000Z

About a month ago I got a letter letting me know that it was time for my smear again, something I like most women have to endue on a regular, but thankfully not frequent basis, in the UK for my age group it is once every three years. Last time it came up I investigated the whole thing as it is difficult for me to get anywhere! It turns out that the District Nurses who visit me regularly are not insured, so they can't do it, and the Practice Nurses who are insured to do it are not insured to do it outside the practice. So no way round it. Last time I went to the surgery, couldn't get my wheelchair through the door, so we had to manipulate me to the couch, and all in all although not ideal, we got it done.

This time the situation was a little different as I have been having a particularly bad spell. A new surgery has been built recently so I had great hopes that the whole thing would be a lot smoother as it is fully adapted. I phoned in to get an appointment and was told Monday 28th at 6.30 pm - not a good time for me, but not a lot I could do about it. I spoke to the nurses and arranged for them to come in and give me an injection in the morning to give me the best possible chance of being on form, talked to Rose who kindly agreed to stay late to take me, had the most peaceful day possible to conserve energy, and took a dose of diazepam, which is what I use to stop the spams, and in cases like this to try and prevent them. So everything practically possible done ahead of time.

When we arrived it was to a full reception room, and it turned out that it was the Family Planning Clinic where the smears were done, so not an appointment at all, merely a starting time, but onwards and upwards as they say. As we sat there perfume assaulted me from every direction. Regular readers will know that perfume no longer agrees with me, and fairly shortly afterwards I started to have spasms, and Rose duly went into action, putting the drugs into my mouth, and holding up a drink with a straw so that I could swallow them. Its one of those situations where you know without looking that every single eye is on you, and they are wondering what the freak in the corner is up to, but nothing could be done, we had got this far, and the only option was to sit it out.

Fairly shortly afterwards I was thankfully called. When I am having spasms if I try and move at all, it sets more off, and we really are talking about legs and arms jerking around (looks a bit like an epileptic fit), so Rose took over the driving and we were off to the exam room.

Just a side note here, my understanding of cervical cancer is that you are at a higher risk if you have had sex, as you may have been exposed to the virus that triggers it, and prior to getting ill I had a normal life, so yes, I have had sex, and over the 30 odd years of life with more than one partner.

Anyway we get in there and the doctor turns around and says "I don't think it will really be necessary to do this will it?" I was somewhere between stunned and furious, she had taken one look at me and judged. I wasn't someone who was at risk as I obviously had never had sex.

Now I get it when Joe Public judges and for example the cashier talks to my carer not me, but not a medical professional who should know better. And after all the ridiculous amount of effort that we as a team had put in just to get me there. Anyway it is now done, and I have three years to recover before I have to go through it again!

A Human Being

2008-01-30T17:09:00.000Z

Finally a day where I am feeling more human again after another bad few days. There have been highlights, on Friday Lynn came and gave me a lovely back massage which was a real treat, and a gift from Ronnie my Godmum for Christmas - lucky me. It really helped when I wasn't feeling too good. Lynn also popped in for a cup of tea and a catch up on Saturday which was an added bonus!

The whole family are now away in Antigua, with Mummy and Barry having left last week, and Bel this week, so it feels a bit weird that they are so far away, but there have been no panics and everything is running smoothly (I am touching wood as I type this!).

I have just had a lovely and long overdue shower, so right now I feel just lovely with clean hair and a big smile on my face. The rest of the afternoon has been taken up with a rest and playing cards with Rose and Judy - I even managed to win a few games to top it off.

Busy Afternoon

2008-01-23T10:50:00.000Z

Just a quick post this morning with photos from yesterday, when I managed to seriously overdo it, but it was great fun! Sue and Rach came for a visit, it was great fun to meet Sue, and lovely to catch up with Rach. They both came bearing gifts (totally unnecessary, but very kind), Sue brought me a lovely photography magazine, and Rach brought some of her homemade tomato soup which I am going to have for lunch today, as well as some DVD's for me to borrow - at the moment we are both acting as each others libraries! All in all a lovely visit which was really chatty, and hopefully to be repeated!

Then I got a phone call, and Annie came to visit which was great. She was on really good form and it was great to hear all about what she had been up to. I love the expression on her face in this photo as she is looking down at Tulla her beautiful Dacshound, but it is such a pity about the shadow.

As you can see I totally overdid it, so I am paying the price, but it was totally worth it.

2008-01-22T12:19:00.000Z

OvaGirl sent me this link to cheer me up, and it is brilliant so I thought I had better share it with everyone. This is the first time that I have put up a YouTube video, so I hope that it works!

I am very excited today as Rach and Sue are coming to visit this afternoon. It will be the first time that I have met Sue, although Rach has been before. I met them both through this blog, so it is amazing what can happen when you don't expect it! Luckily today I don't seem to be feeling too bad, and I have started on the caffeine to give myself the best chance of being on form!

Bad Week

2008-01-20T12:34:00.000Z

There doesn't seem to be any reason, I don't have an infection or anything, but the last few days have been awful, feeling really poorly, so sorry for the lack of posts, and the shortness of this one.

Nice things are still happening though, I had a web call from my uncle in Australia this morning, it was great to see him and to have a chat, but afterwards I needed to have a bit of a sleep, which shows where my energy levels are at right now! I have also been given another award this week, this time from Jules. It seems to be an online version of Chinese Whispers as this time you are supposed to give it to 10 people, rather than the two of Shannons! As I have already passed it on I won't this time! But it is very gratefully received.

Mummy and Barry have gone to Antigua for two weeks, things are always really odd when they are away, I miss speaking to my Mum every day, and obviously all her visits, so it always seems really quiet. Bel is going over too next week, and this will be the first time that all my family has been away at the same time. Quite scary, but Julie my aunt has very kindly said that if there is a problem she is there and can step in which is great. I always need to have a back-up plan, last time Mummy was away was when I had the breast lump scare, Ronnie had very kindly agreed to be back-up that time and was wonderful as it all happened. Fingers crossed there won't be any dramas this time though!

What a day!

2008-01-14T16:18:00.000Z

Well a very busy day for me today, not just one post but two! The reason for the second post is that I have been tagged, which means that I am supposed to tell you all my secrets. This is all thanks to Kara/Nina. She has two names as she writes novels under two different names, and is a fellow MS sufferer!

The rules are:

* List seven things about yourself

* Link to the blog of the person who tagged you (see highlighted name above).

* Tag seven new unsuspecting victims, um… friends and list their links on your blog.

* No tag backs, which Kara/Nina added!

I'm going to do this slightly differently though as I know that most of the people who I blog with have already been tagged. I'll do my time, and tell you secret things, but won't tag on unless someone would like me to - if you would let me know in the comments, and I will tag you and link you in my next post. Ok onto the secrets.

1. I was a bad girl at school and nearly got myself expelled (it was for smoking though which isn't too bad!).

2. When I lived in Cayman I used to work as a Pirate Wench on a replica pirate ship. I loved this, it was great fun serving drinks and keeping the punters happy. Just as Kara/Nina is, I am sun bunny who loves the water, so Cayman was wonderful anyway!

3. Last week all my tubing came unplugged (only the second time ever that this has happened), and I woke up to a wet bed. This was horrid, and I felt like a little girl that had wet the bed.

4. I collect shells - in fact I collect a particular type of shell called a cowrie. This is something that I got from my Mum who is also an avid shell collector.

5. As a child, my fav place to be was tucked up somewhere in a quiet corner with a book - I still love reading when I am up to it, but my concentration doesn't always co-operate.

6. I am a smoker, but am not enjoying them like I used to, and am secretly thinking about giving up - not quite sure how I am going to manage this as I can't use most of the techniques that they teach, but as I have managed to drop the Diet Cokes it must be possible.

7. I am a serious organiser. Whatever is going on in my life I like to have a plan, and am really hopeless if I don't have one - this also means I am a list maker surprise, surprise!

That made me think, but was also fun, so let me know if you want to join in with the game and I will tag you!

Award

2008-01-14T10:01:00.000Z

Shannon has very kindly given me an award, which is very exciting as it is my first ever! Now I just have to figure out how to make it appear on here, which has been taxing my brain a bit, but I think I have finally go it, so here it is:

I get to pass it on to two other people, so the first one that I am choosing is Rach, who has introduced me to a whole new world of web friends, and who takes the most beautiful pictures. The second person that I am passing it onto is OvaGirl for her really beautiful writing about some really hard subjects which always makes me laugh, and brightens up my days.

I had a better day again yesterday, so things might be on the turn - no painkillers at all - first time in weeks, and I have woken up today with the sun out and a smile on my face. My big aim for the day today is a shower, bed baths are all very well, but I want to feel the water rushing across my face again, and more importantly to have clean hair (which you can't manage with a bed bath!).

Rollercoaster

2008-01-12T17:27:00.000Z

This week has been another of very up and down, I have had some better days, but crashed afterwards, but the better days are there which they weren't for a bit so that is good news, and now I just have to build on that by not doing too much. The problem is that I am not good at that, I just want to enjoy feeling better and being able to do stuff, but I have been a good girl today and had a very peaceful time!

I wasn't such a good girl yesterday, Lynn was here on a beauty visit, so I have been thoroughly dehaired (which is a good thing as it makes me feel girly again), touched up, and had lots of chatter, a brilliant afternoon. So its real go slow today in return, but it is now late afternoon and no painkillers yet, so all steps in the right direction even if I have to take some later. Often the pain gets worse as I get more tired (probably just can't cope as well with it!).

We had carer handover on Wednesday which went very smoothly, so Glynis has gone off to her next client, and Des has arrived back for three weeks. As I have not been feeling too good, this week has been mainly about TV! Daytime TV is as awful as ever, so CSI it has been. As I have seen them all before (and some several times), they are actually very relaxing and good for me on the not overdoing it front, but I am reaching the end of the line with them, so I might have a break and watch some Bones or House!!

Doing Better

2008-01-08T18:55:00.000Z

The last couple of days things have been gradually improving, and I am down to painkillers once a day which is great. I had a very special day today with a visit from Rach and some lovely chatter, followed by a visit from my Mum, and the good news is that although I am tired, I am ok, so things must be improving - hopefully there won't be too much of a payback tomorrow.

2008-01-03T17:45:00.000Z

Ok, so this week hasn't been going very well. I have been feeling pretty ropey, which means pain, which means painkillers, and then feeling more out of it. Last night I was having a great deal of difficulty even following repeats on TV - which is normally my main occupation when I am not good with painkillers. Sometimes I just have the pain, and taking them means I can then have a normalish patch - playing cards with Rose for example, but the last couple of days have been just plain rough - tough having conversations, and exhausted afterwards. No fun at all. Today has been better than yesterday on the plus side, and a good thing too as Mummy visited at lunchtime, then Sally my counsellor has just been. As I haven't blogged for a bit I thought I would just pop in and say hello before I took the next lot of painkillers, and then wasn't up to it.

Updates on the various ongoing things: Still no real diet coke, and I am only drinking a couple of the non-aspartame ones a day, mainly I am drinking fizzy water, so that is good. No handover this week - Glynis was here for a 4 week booking over the whole Christmas period, and although I have handover again next week, Des is coming back, and I know who is coming for the next several months which is heavenly. Dave and I have been emailing backwards and forwards, generally catching up on the last 10 years (yes it has really been that long), and getting to know each other again at this new stage in both of our lives. It is great to be back in contact with him. So much has changed for both of us, but I think that a strong friendship is developing. Needless to say it has been throwing up a lot of things again about where my life has ended up, but they do all come up periodically, and it is obviously just time to revisit!! Thank goodness for Sally!

Right, that's all my energy used up, and its time for some more painkillers, fingers crossed for some more improvement again tomorrow. Oh and some really good news, another of my photos has made flickr's Intrestingness which is unbelieveable. It was my tips of a fork, taken back in June, but people seem to really like it which is nice. Its the third of my images that has made it so I am really proud!

Almost forgot to put this up - Grampa on Christmas Day - and a portrait shot that I am reasonably pleased with!

New TV

2007-12-30T17:41:00.000Z

The TV in the sitting room gained a very appealing orange tint in the summer, and has been on my list of things to do ever since. Today we drugged me up and took me to Currys to hit the Christmas sales to sort it out, and success! We also bought a DVD player, but sadly the assistant seems to have picked out a different one from the one that we chose, so we have a lead now that doesn't fit. The TV is up and running and tomorrow Glynis will go to Argos to get the right lead! A very successful day!!

Back Home

2007-12-29T12:08:00.000Z

Glynis and I came back home yesterday, Mummy has been a real superstar about all of this, as she drove in front of us on the way down, and led us home yesterday, only to turn around and drive back. It was really kind, but the journey is just too much for someone who has only been driving on English roads for a couple of weeks otherwise. We had a good journey back, and did it in just under 2 1/4 hours. It seems strange to be back, I keep expecting to see Mummy pop her head around the door! I will have to wait a bit for that one as they are not back until after New Year!

Zena is well, and obviously missed me, she keeps stopping in the doorway just to check that I am still around, and is currently parked up next to me in bed getting a cuddle!

I did take some pics over Christmas before my battery ran out, but they are currently still on the camera, there seems to be a pile of things to do - and I am currently avoiding them by doing this - hopeless!

Happy Christmas

2007-12-26T11:45:00.000Z

I hope that everyone had as happier Christmas as we did, we all opened stockings together in my room in the morning, and then we got me up for a little bit for presents with Mummy, Barry, Bel, Glynis and Granny and Grampa. It was really special. I had made a book up with my pictures from this year for each of them as a surprise, and it seemed to go down really well.

Boxing day now, and we have all been sitting watching The Holiday together, and have nearly finished - they are all heading out to walk to the White Eagle, a pub about 3/4 hour walk to go and have lunch, so we will watch the end when they get back!

All in all, happy family times, enjoying being together, and enjoying each others company.

Trip OUT

2007-12-21T10:35:00.000Z

Yup we did it - I cheated on Wednesday and had an injection and we went out to Wyevale to have a look at the Christmas decorations. The nurses were here anyway as my catheter tubing is changed every few weeks, the bit that actually goes into my body gets pulled out and a new one put in. We have been having a few problems with it over the last few months, but this was one of the best in ages and it went like a dream.

We had decided to try and do a trip out for two reasons, firstly to get me out of the house before the big trip on Sunday, and secondly so that poor old Glynis had a chance to drive me in the car before the trip and get used to all the straps, how the car drives with me in it, and all that jazz. It went off like a dream. We drugged me up beforehand with Diazepam, which we have to do to prevent spasms, and although we were only there for about 1/2 an hour it was such a treat to be out and about.

I did have a payback day yesterday and was feeling pretty awful, but that is the price that you pay for some fun!

The injections proper started this morning, so I am on them now twice a day until after we get back from Wales, so things should start to pick up. Already I am feeling better - it is mid-morning and I am here blogging so that is a really good start!

Dave and I have been emailing (Hi Dave!!) and it is really lovely to be back in touch, and to find out what he has been up to all this time, it always felt weird to have been so close to someone, and then to have absolutely no contact, and no idea about what he was up to. Unfinished business is the best way I can describe it, a sort of niggle as I often thought about him, and now my mind is at rest - he is OK and happy.

Bel arrived up in Cheshire last night and is working from home at Mummy's today, so looking forward to seeing her - yesterday she was interviewing in Hull, and had a flat tyre right at the beginning of her long journey home, and had to call out the troops. Could have been a disaster, but luckily they were very quick and she was back on the road again in under an hour.

I'm all ready to go to Trearddur now, so just have to wait - very excited though, and can't wait to see the sea and all be together, its going to be magic.

Ready, set ... go

2007-12-18T10:49:00.000Z

Preparations are going into full swing for Christmas, and I am starting to get very excited about going down to Trearddur and so looking forward to getting to spend some time as a family all together. We started the packing yesterday, I made a list when we went down in the Summer, and put it on the computer, so it is all feeling much easier than I remember as we are able to work from that!

I had a lovely weekend, with lots going on. That's unusual for me, normally we have stuff going on during the week, and quiet weekends! Lynn came on Saturday, so I have been waxed, and both my toe nails and finger nails are looking beautiful - I went for a French again on my fingers, I think I am getting boring, so I might have to go for something different next time on principal! She had Robyn with her - her daughter who is 7 and really cute, so it was lovely to see them both before she went away - they are flying today off to the sun for a couple of weeks - very nice!

Sarah came with William and the boys on Sunday for a flying visit as she was up for the weekend seeing all the family before they head off to Paris for Christmas - great to see them all. Louis the eldest at 6 managed to completely throw me by asking what my tubing and bag were - I explained that they were medicine to help me pee which seemed to satisfy him, but it is so difficult knowing what to say to something like that - I really didn't want to scare him or make it too complicated. He is a really wonderful child - they all are, and it was so nice to have the time with them all. I really miss seeing as much of them as I did when they were living up here, but as Williams job is in London there is not much that can be done about that!!

Yesterday I had a really mixed day, real highs and real lows energy wise, I had a really successful afternoon with Rose wrapping and packing, and got loads done, but I think I did too much as I crashed quite badly later on, but no spasms which is a blessing.

And on the caffeine and aspartame - its 4 weeks today! I made it!! I am definitely going to stay away from the aspartame, as everyone seems to be so worried about it there is no point, and I have got used to the Sainsburys stuff now, so I will stay with that. On the caffeine front I will cut down from what I was drinking before, but I am sitting at the moment with my first can, and it has meant that I am up to doing the blog, and looking forward to doing the post which has just arrived rather than barely able to move. So a result on some fronts.

2007-12-14T18:44:00.000Z

I got the most amazing thing through the post yesterday - a picture! Its all a bit complicated to explain, but I have a lovely very old friend called Laura (who is an illustrator), and her husband Jonnie is a fantastic artist who works in pencil & charcoal. He draws from life in incredible detail, and has covered many beautiful subjects like birds nests, flowers and even life sized bulls! I have collected shells, especially cowries for many years, and asked Jonnie if I could commission a picture, he said that he would do it, but not a commission which was just so kind of him. Anyway it has arrived, and is really beautiful, so my mission for early next year is to get it framed and up on the wall.

And today has been lovely as well with a visit from Rach. We had a really good chatter, and as I still have some real Diet Cokes left I was able to give her one of those rather than a pretend one!

My 4 week caffeine reducing and aspartame free trial is nearly at an end, and I have to admit that I have felt worse for most of it than I have in a long while! I think I will probably increase the caffeine again, but as I have got used to the fake cokes I will stick with those just in case it makes a difference. I have been timing my caffeine consumption so as to have the best from the afternoons, but have needed loads of painkillers almost every day which is no good at all, and I won't know if that is the caffeine until I increase it again, hopefully it is or I have got worse again!! In my head I just keep going back to the conversation with the pain consultant.

Me: I'm trying to cut down on my caffeine
Him: Why?

At the end of the day if caffeine means I am better, then caffeine it is!!!

Blast from the past

2007-12-12T18:11:00.000Z

Sorry to post twice in one day, but it has been an extraordinary day - Dave has got in contact through Facebook. For those of you that don't know I met Dave who is Canadian in Cayman and we got engaged, then things went a bit wrong and I ended up calling off the wedding, one of the hardest things that I have ever done. It all has a happy ending though, he is now happily married with two beautiful children, the youngest of which is just 7 weeks, so a tiny little thing! But what a surprise.

When something like this happens it really makes you think about the past, about happier times - Cayman was undoubtedly the best period of my life, I had a brilliant time and loved living in the sunshine near the water. It also stirs up what might have been which is a bit more difficult, but something that rears its ugly head every now and then for all sorts of reasons. I am really glad for Dave that he has got his life sorted out, and most especially glad that he is now a family man as I am certain that he is going to make an excellent father.

Handover day

2007-12-12T10:06:00.001Z

I can't believe that it is handover day already, Glynis has just arrived, and she and Des are tucked away in the kitchen going through everything before Des goes. This handover means that Christmas is here though, as Glynis is now with us until the 9th January!

Monday wasn't so good, but thankfully yesterday was a bit better, we had a lovely surprise last night, a visit from Santa, yup really. Our local Rotary Club was collecting and they had Santa in a sleigh playing Christmas music being pulled along by a van - it was wonderful fun to see with all the flashing lights - we hauled me out of bed, and I got to see it, but sadly ended up having spasms afterwards, just my leg so not too bad, but serves me right as I had been quite busy. I started the wrapping yesterday, so am really pleased with myself for that one, but there is still a lot to do. I also had a lovely visit with Mummy who has just got back from her holiday, so we had a good catch up.

I am feeling a bit daunted by what needs to be done right now, the rest of the wrapping, and then the packing as we are going up to Trearddur for Christmas itself. Packing for me is a nightmare - its a bit like trying to move anywhere with a baby and a toddler, there is so much kit, and all the medications etc, etc!! Wrapping first though.

Christmas Trees

2007-12-09T17:17:00.001Z

Another good day, so a shower today which makes a nice change from baby wipes, and I have lovely clean hair which is brilliant. As promised I have done some happy snaps of the Christmas Trees. Firstly the miniture one that sits in my bedroom - it has been really difficult to do decorations for this as everything is out of scale. Mummy found some little Father Christmas pegs, and I have threaded some little bells onto wires.

This is the main tree, I am so boring with my decorations as I use mostly the same ones every year, but I really love them. The little fir cones were picked up on the drive at Monarchy one Summer after a big storm had knocked them down, and the cranberry hearts are also home made - they are based on something that I saw in a magazine. And as you already know, we made the popcorn strings yesterday!

And Zena has a new favourite place to sleep, she has taken to lying under the tree pretending that she is a present!

And Sue, I have had two diet cokes and some painkillers today - seems to be a good combo, and they were the being good cokes with no aspartame in them, I am getting used to the taste now!

Looking up

2007-12-08T18:27:00.000Z

After a really rough couple of days, today I have had a vastly better day. This morning didn't start well, and I had to take painkillers at lunchtime, but with the pain gone I have had a lovely afternoon putting up and decorating the Christmas Tree. We made popcorn strings which I really love. The new popcorn maker (the old one broke a while back) is not quite as good at getting the popcorn into the bowl, so Rose and I were left picking up popcorn from all over! Des joined us to make the strings, then I watched as Des and Rose put the tree together, all with Christmas music playing - wonderful. I also have a little tree for my room - I promise that if I am up to it I will try and take some photos of everything tomorrow.

I think that part of the lesson of today is that I need to take the painkillers earlier, and then make the most of the pain free time!! What a lovely day.

2007-12-05T19:05:00.000Z

I have had a busy couple of days, yesterday we had to make a very early trek to Ellsmere Port to see one of the consultants, he used to be in Chester at the Countess which is my hospital, but for some reason they moved his clinic! He is the Pain Management guy, and I have a great deal of respect for him, he not only talks a lot of sense, but he listens as well - what more can you ask for! I said that I had not been feeling as well (current downturn started after August), and he said that was the case for most of his patients, and the best thing to do was to wait until Feb - the days start getting lighter and things will pick up again! I did try a light box a couple of years ago so I told him about that, he was really interested, but it didn't really help me. He did have some good advice though about my meds. My current painkillers have been helping, but as I am worse they haven't quite been doing the job, he suggested taking paracetamol (a weak painkiller) at the same time as apparently it boosts the effect of the stronger ones - this wasn't something I had heard of before, but having tried it out I was much more comfortable yesterday afternoon than I had any reason to expect to be! What with getting me up in the morning and my not so good state I ended up having spasms at the hospital - it is more embarrassing than anything else as I have to put the harness on so I don't fall out of the chair, and then poor old Rose has to drive the chair which is really difficult and she hates doing it! It took us ages to manage to get through the doorway and into Dr Logan's room, but we did manage it in the end! We drugged me before we started out, and had to re-drug me when the spasms started, so by the time we were on the way home I was higher than a kite and feeling no pain - we made the most of the opportunity and stopped at the Hollies (which is an amazing farm shop/deli/yummy food place). I got some stocking bits, and had my first taste of everything dressed up for Christmas which was lovely. By the time we got me home I was dead to the world, so had a bit of a sleep then peaceful time, and trying out the new painkilling regime, which worked really well.

Today I have had a real treat, Lynn came and gave me a back massage - and we had a really good goss too - not the traditional way to have a massage but it worked for me! I have started to pay for yesterday, but in all likely hood it will hit tomorrow, so gentle quiet time is in order for the next few days.

Rose has come up with a wonderful new interpretation on how to play cards in bed. We (at her suggestion) have been using the ironing board for cards for ages in the sitting room (I don't have a table at all!), but the bedroom is very small and quite full with the desk, let alone anything else. We had been playing with a tray, which was very uncomfortable for me as I had to crane around sideways to play - the ironing board though now goes over the bed - well done to Rose - a bit like a hospital table, which means we can both be comfortable and have a decent surface to play on. The only disadvantage is that there is only space for me and Rose, so we have not been able to play three ways with Des - hopefully I will be able to get up out of bed for a bit again soon though and then we can take her on as well.

I had ordered a new cover for it in the middle of last month and phoned up on Monday to see why it hadn't arrived, it turns out that they are on back-order but that no-one had let me know - I do think that is rude, I don't mind waiting as long as I know, but please at least let me know!! So sometime after Christmas the ironing board gets a new cover, and we won't be playing over burns any more!

(Just in case you hadn't guessed I have had a diet cola & a cup of tea!!!) Naughty, naughty.

To cheat or not to cheat

2007-12-02T10:35:00.001Z

I'm only half awake this morning as I had a bad night with an upset tummy, but I have to admit that I am getting fed up with feeling exhausted with the no caffeine thing, and starting to get tempted to give up, but I know that I haven't given it long enough to for my body to really get used to it. I have cheated this morning and had a diet coke which is how I am managing to post.

With the added energy I have just spent a lovely hour on flickr just browsing around and finding some really lovely photos - it just makes me want to be out there with my camera, the sun is up right now and the light is just lovely. I have barely been able to get me out of bed while I have been trying this out, let alone be able to really do stuff. I now know for certain that I can do the no aspartame thing - although the Sainsburys coke doesn't taste as nice as the real stuff, I can go with it for the sake of not having the dreaded stuff. Is it strength I need right now, or is it nearly time to accept that life is just so much better when another chemical is added in. I know that life is better with the amphetamine I take every day, and with the painkillers that I take, and I wouldn't want to be without them, but I know that I need to give it a bit longer before I give in. Strength needed!!!!

E-card

2007-11-28T13:06:00.000Z

The photo that was selected by the Open University as one of its Christmas Cards is now live and here is the link. So if any of you out there like to send e-cards, now is your chance - isn't that exciting.

Not much news to report other than that, still not feeling brilliant, still not drinking any Diet Coke, and still only having 1 or 2 caffine drinks a day! I tell a lie, my bowels are definitely working again, that is good news, so no nasty enemas. It is really hard being totally stuck in bed again, I am getting dizzy standing up, and needing an arm to lean on to walk more than a couple of steps. Its amazing to think only a couple of weeks ago I was walking up and down the hall every day.

A long week

2007-11-25T10:51:00.000Z

The good thing about this week is that I have been trying not to drink Diet Coke. Mummy and Claire have (amongst other people) both been very determined about this as it contains an additive called aspartame that has been deemed by people to be A VERY BAD THING. I'm not sure that there is any scientific evidence for this, but being an obviously very pliant person (not that I have been ignoring them about it for years!) I have decided to give it a go. Maybe not the best week to choose, but there is never a good time for things like this is there! I have started sleeping during the day for the first time in many years, and have been barely functioning without the caffine in my system. I also don't feel any different, but am going along with it for the time being.

Now I have to take stimulants - legal prescribed ones - to keep me going so that I am awake and functioning, so loosing the ability to actually even watch TV or open my post for any more than a couple of hours a day is not going to be a long term runner.

Mummy has come up with a possible solution - Sainsburys do an own brand which doesn't contain the nasty additive that is so hated, so she has brought me some of those, they taste really strange! I am hoping that given a bit of time I will get used to them, but am doing without any caffine at the moment - a detox time.

The reason that it might not have been the best week to choose is that I am in payback for all my fun last week, so I have had day after day of having to take extra painkillers, and have also had spasms several times. Spasms are no fun at all - they look a bit like I am having an epileptic fit, and I can't do anything without setting off another wave, so a carer has to put the drugs into my mouth, and then hold up a drink with a straw to let me swallow. They are uncomfortable, but don't hurt, but they are completely exhausting. I am starting to improve a little, but no where near being on form.

This week has also had a bit of the getting back from Trearddur feel to it - a week of having fun, seeing people, and generally enjoying life, followed by a slump. I have had a visitor this week as Granny and Grampa came - lovely to see them but I was on awful form - I don't mind with most people but I felt really bad for them, I don't like them seeing me that way.

We have also had a carer change over this week and Des is back with me for three weeks. Things went well with Glynis, and she will be coming back over Christmas, so I know what is going on which is a huge relief, and takes a massive weight off my mind.

Painkillers

2007-11-19T12:42:00.000Z

Quick catch up to start with - supper on my birthday was lovely, and really nice to have Mummy and Barry here. We all ate far too much though! On Friday Rach came for a visit which was great fun and very gassy, lovely to have a catch up.

Tim and Nicky came with Liv & Gwill on Saturday, and it was great to see them all. I had forgotten to get my camera out before they came, which they thought was a huge relief, so no photos I'm afraid.

Since then I have been on quiet time, with a visit from Mummy, but mainly I have been paying the price for a busy week, with spasms and pain which is no fun at all, but the pleasure was worth the price. Sally (my counsellor) has just been and we have been talking about the pros and cons of the painkillers and anti-spasm medication. I can feel when I am on the edge of spasms, it is like tiny electric currents that run through my legs, and means if I am not careful here they come (sometimes they just come anyway!). But I hate taking all the drugs. I worry that I will get addicted, I don't like feeling all spaced out, but sometimes I just think that the pain is too much and have to take them. Often people remind me that it is kinder to myself to take them before the pain gets that bad, but I tend to fight that preferring to be able to sit and do this to being out of it! Anyway today I am going to be kind, so once I have finished this I am off to take the damn things and let my body have a rest from the fight.

2007-11-15T16:57:00.000Z

Quick update and some photos. Annie Midwood and Mummy both came for a cup of tea on Tuesday, so great to see them, and an old friend from London days came yesterday - Zara. She, Hugh her husband and Rosie their 18 month old have been on holiday in Cumbria, and broke the journey on the way back to Devon. Its been ages since we saw each other, and we had a good catch up along with some birthday cake - mine is today, and Z's is tomorrow! None of the photos of the whole family were great, but here they are so everyone can see how they are doing:

I did get a couple of cute ones of Rosie (even though I ended up cursing orange indoor lights and the flash with the colour):

Rosie isn't wincing at the cake even though it looks that way, she's pulling faces at me and the camera! We all sat and chatted for a bit, then Rosie had some supper, followed by a quick bath in the kitchen sink (I only have a shower which would have been too complicated!). Then she came and sat next to me for her bottle before being put to bed in the car and off they went. All in all a lovely afternoon!

I have had lots of phone calls today, along with a visit from Lynn and Rach dropped in quickly too!

Visitors

2007-11-12T18:02:00.000Z

It was brilliant to see Sarah and have a catch up. She brought Sam with her (the youngest of her three), who is nearly two, another one with a birthday this week! Managed to get a reasonable photo of Sam,

but not impressed with the one of Sarah, better luck next time eh! I do still have a big smile on my face from seeing her, time with your bf is precious isn't it!!

The bird bath froze over this morning, and with some help from Sheena (who ended up with very cold fingers) I managed to get this shot of the wonderful patterns on the ice, and the pattern it was leaving as the sun shone through it - not quite a reflection, but I can't think of the right word. Now if I have got this right, you will be able to click on this photo and it will take you to the flickr page where you can see a bigger version. Fingers crossed!

The bad news from today is that Bel and I have been outbid once again on ebay trying to buy my Mum her 60th present, luck isn't going our way on that one. I guess that means we will have to spend the next few weeks browsing & hopefully find another nice one.

Grown-up

2007-11-12T10:40:00.001Z

I got through yesterday with no painkillers, so things are looking up again, although I have a sneaky suspicion that I might have picked up another bladder infection - typical!

My big week starts today with a visit from my best friend Sarah, she has been my bf since school, and now lives in London so a visit is a real treat. So looking forward to it. We also have a new carer arriving today called Glynis (sounds Welsh, but actually South African!), and she is due in about half an hour. Always a scary prospect, but especially so today as if she works out she is coming back for Christmas, and if she doesn't we have a new carer just before Christmas and no idea about what is going on for Christmas, so fingers crossed. Sheena is just getting ready to go pick her up, and that means a really rare occurrence - I am being left on my own for 10 mins while she goes to the station. Although it is really nice, it is also scary. We have to be always alert for spasms, if I have them I really need a carer there straight away to keep me safe and give me medication as I can't take it on my own. I am fine right now so everything should be ok, but there is always that risk. But it is really nice to have the house to myself even if it is only for a few mins, and also I get to feel like a grown-up, able to look after myself!!

I had a lovely visit with Mummy yesterday, I have been teaching her to use ebay (a case of the blind leading the blind), and she is really enjoying it. Her 60th birthday was in June, and she asked for a silver dressing table hand mirror, and although we have looked at an antique fair we still haven't managed to get one. So ebay it is. We have lost one that went for an astronomical price, but have another in our sights, so keep your fingers crossed. We are so far behind with this - and Christmas is just around the corner, talk about late!!

Nails

2007-11-10T13:41:00.000Z

As per Lynsey's request a photo of my pretty nails! You only get one hand as the other was holding the camera!!

Another day of painkillers today, it seems to have been that way most of this week, I can still function, but am a bit fuzzy around the edges, but it all depends on how bad the pain is. Today everything is aching, I did try and get out of bed for a bit to play cards with Sheena, but I am not quite up to it, maybe tomorrow. I have a really special week coming up next week, so I am keeping my fingers crossed that I improve a bit so I can really enjoy it.

Busy week

2007-11-09T18:54:00.000Z

I have had a busy week for me, on Tuesday Dave Wright came and put up my picture of the girl which is sitting now at the end of my bed for me to look at and admire. I have had visits from Annie Midwood and Tim (both great fun), Lynn came and painted my nails, and just to top it off a trip to the hospital for a doctors appointment, something happening nearly every day which is great.

The doctor in question has been very polite and civil, but has no idea that I harbour a secret loathing of him, and I have been very polite and civil back. Several years ago when the MS symptoms first started I ended up in hospital and under the care of the same doctor (there are no neurologists on staff so you are under whoever is admitting). He asked what the problem was, and I explained that I had lost feeling across my midsection and down one leg, and that I had a history of ME. He promptly told me that there was no such thing as ME, did a rectal exam and discharged me. Luckily I had gone in on a Friday, so I didn't see the consultant until Monday when he returned to work, and the more junior doctor had already done an MRI and lumber puncture, because when I saw my neurologist later that week, both showed signs of MS. The one thing that you don't do though is go up against a doctor, and I am very lucky as all the other doctors that I have been in contact with have been very supportive - except this one!

Case Notes

2007-11-07T15:29:00.000Z

Someone asked how to listen to the Case Notes programme which concentrates on ME in teens and the therapy called Graded Exercise Therapy (GET). It is available only for this week. This is a link to the main Radio 4 web page. Go to listen live, then scroll down on the main page to Case Notes, but it will only be up until next Tuesday (13th November).

ME & Pacing

2007-11-07T10:47:00.000Z

Radio 4 has been doing a series of pieces on ME which is great news, and the treatment has on the whole been very good. There was a very interesting programme called Case Notes on last night which we turned off the TV to listen too, with a couple of ideas I hadn't come across before. The main way that people with ME control their lives is through a method called Pacing. It is a system of energy management where you try and work out what you are capable of, where your limits are and then stick to them. If you want to know more there is a very good leaflet on the AfME's website. It basically stops you going into the boom & bust cycle where you do too much and end up crashing. I have got fairly good at listening to my body now although I still get it wrong sometimes, and sometimes I push it too far for something special knowing that I will pay the price.

This is the You and Yours website where you can listen to the programmes that have already been broadcast. And You and Yours is featuring ME all this week. It is on at 12 o'clock midday.

It is lovely to finally hear ME being recognised, I have had some awful experiences with doctors (as have so many other people) where they just plain say to you that it doesn't exist, or that it is all in your head. It is so demoralising when that happens, and then the medical problem that you are having is totally ignored. My MS diagnosis was a blessing as people take it seriously, and suddenly you get help, and people listen. For all that my MS affects my everyday life, the ME causes more trouble by far. Yesterday morning I spent some time on the computer - a couple of hours - and it was too much, I was exhausted. I had overdone it once again without meaning too. And by doing something that is just so easy for everyone else. Emotionally though I am moving forwards again which is great. Now as ever after a long post I need to go and have a rest, and re-charge my batteries.

Thank you

2007-11-05T10:42:00.001Z

Thanks everyone for the messages of support, they really help, and its good to know that people aren't just going to turn away because I am having a hard time which is something that I fear, and often comes up in my counselling sessions.

I am always happy to talk to anyone about ME or MS if I am able to help, it is really nice to actually think that even like this I may be able to help someone as that is not something that is very easy for me to do now.

As for macros, I love them. They open up a new world that is easy to miss, my biggest difficulty is that with the MS I get shaky, and still is something that you really need for macro, so I end up with loads of shots that I have to bin as they are too blurred!

I had a long chat with Bel last night which was great, and really talked about some of the feelings stuff, which is very hard for her. I am so lucky to have an amazing loving family, I don't know how I would deal with all of this if it wasn't for them and friends old and new.

I can still pull it off

2007-11-04T13:26:00.000Z

I woke this morning to really heavy fog, and as it has cleared slightly there were spiders webs everywhere covered in dew. This was taken by one of my topiary spirals where it was strung to the ivy. Nature at its best.

It has been cropped but otherwise untouched by human hands, so no photoshopping!

I have spent most of the morning browsing round flickr, I had forgotten how much fun it could be. If you would like to see what other people have got to say about the photo here is a link to the pic on flickr - its also bigger! I think that this one is good, but probably not quite enough to get it onto flickr's intrestingness which is a page that is always worth having a browse around.

Time to get that camera out again

2007-11-03T17:15:00.001Z

Rach's Uniqu-ards and Lynsey's Simply irresistible have inspired me to get my camera out again, so earlier I went out into the garden to see what caught me eye. It was quite a challenge as it is cold and wet, so to take some macros we got out the plastic tablecloth for me to lie on, and I had a go ending up with my fav shot being with my main lens of the wheelchair (my Daimler as Rose calls it!), so not a macro at all.

And my second fav shot being a birds eye view of one of the feeders where you can see straight through. Its not a great photo, I have lost the colours etc, but it is, I think, interesting.

So poor old Sheena has a clean up job to do on the tablecloth for no reason - still I had great fun trying it out, and the sun came out momentarily for me as well.

The other thing worthy of note is that I had a lovely visit from my Mum. Sometimes when she comes she gets into bed with me and we have a cuddle. It makes it very special for me as I so rarely get that sense of closeness. I am always worried about my tube, or my hole, or that my bottom is showing, but with her it is ok, and I feel totally safe. Even though my carers touch me daily, that is very functional, and without emotion, and that is the way that it should be. It would be awful if I thought too much about the fact that they put cream on my bottom, or before when I was having regular enemas they had to clean me up, you have to totally disconnect from it or it would be unbearable. So a hug with my Mum is something to be savoured and cherished as a wonderful place to be. My camera was still out, and she bought a great new belt buckle this week, so here it is for everyone to admire:

As for how I am feeling at the moment, well its mixed. I am not ready to give up and admit defeat, yet I am struggling with how to move forward. There are real rays of light such as getting in touch with Lyndsey who also did the OU Photography course, and visits, but I know that tomorrow will be a really long day. When I don't have someone coming to visit, or something going on there is very little to do. And very little I can do. This last week I have been shutting out any thinking by watching DVD repeats of things like Bones, CSI, and watching movies. While I am doing something I don't think, so all the struggles go away. But there are only so many repeats that you can watch, especially as you already know the story! I contacted the charity in Switzerland last week via email, and have had an email back. I have read it, but nothing more. I'm just not ready to take anymore steps in that direction, there is more living in me, its just finding a way. Most people would really like to have a day in bed, I would really like to have a day where I am run off my feet busy! Couldn't do it though. It is a release writing about it though. Having it all shut up in and running around in your head is hard, and sharing makes it easier, so thanks for being there and reading it.

Schmap ...

2007-11-03T09:35:00.000Z

sent an email saying that they have selected both photos of Delamere Forest for the site, its a bit weird though as they seem to have selected them both for the same spot - very strange, anyway here is a link to one of them for you to have a look at.

The post in the garden

2007-11-02T17:15:00.000Z

The post in the garden that has been sitting there for months since the original tree died has finally been removed, and my beautiful topiary tree from Mummy is up in its place.

I think that it looks great, but I have to admit that I am biased on the subject! Otherwise it has been a really quiet couple of days, but I am looking forward to a visit from Mummy tomorrow. Rach was going to be coming today but caught a cold, we did have a long chat on the phone which was lovely.

Happy Halloween

2007-10-31T18:33:00.000Z

I overdid it yesterday, so not feeling great today, but I got out of bed for a bit to create something special for Halloween. I cut out shapes from black card, and then put white tissue paper behind it, and blue tacked everything to the window. It was great fun, and we have had a steady stream of trick or treaters all evening - brilliant - and yes sometimes I am still a child at heart, after all who wants to be a grown-up!

Photos

2007-10-31T15:03:00.000Z

Even though I haven't been able to take any photos for a while it seems that other people are still looking at the ones I have already taken, and I have had two lovely surprises this week, firstly the website schmap have shortlisted two of my Delamere Forest photos to use when they redo their Liverpool section (I am guessing having had a look around that it will be for the days out section, and secondly I was contacted by the OU today to see if my River Weaver Dandelion could be used for a Christmas e-card! And both will credit me, I have a huge smile on my face!

2007-10-29T16:40:00.001Z

Quick update - there was a confusion about the bookings, but all is fine and Des is still due to come back, what a relief!

2007-10-29T10:53:00.000Z

What a brilliant weekend, then back to reality with a bit of a crash this morning. Saturday I met Mummy, Barry and Bel at Northgate Arena and went to the Antiques Fair to look for Mummy's 60th present (a silver hand mirror) which is now seriously late, we didn't sadly find anything but it was a lovely trip out, then later Bel came over for a visit. Sunday I went to Mummy & Barry's for lunch with Bel and Granny & Grampa. (Well I joined them for a little bit after lunch!). We have finally figured out how to get me there in my big chair, which means that it is safe however I am feeling. They have bought some pieces of ply-board to go down over the drive, so I can make it to the front door. The drive is made up of little slate pieces (shale?), so although the house was wheelchair accessible I couldn't get that far! It all worked really well and it was great to see Granny and Grampa. Grampa hasn't been well enough to come and visit here, and for the last few weeks I haven't been well enough to get to them - the house has steps and narrow doorways, so I have to be able to walk. The danger comes if there is a chance of spasms, as there would be no way to get me somewhere safe (the big wheelchair is safe as it holds me still with a harness if I start). There would also be no way of getting to the car to get me home again. So we have been in a bit of a stalemate situation. So it was just lovely to see not only Bel, but them as well. Grampa was looking much better than last time I saw him. He is going back in for a test before he sees the surgeon in a couple of weeks about the reversal. He has all his hopes pinned on this going ahead, so fingers crossed for the test, and that the surgeon thinks that he is well enough for the operation. He definitely looked better yesterday than last time that I saw him, which was great.

Then this morning through the post I have had a cancellation of Des's next booking! I have no idea why and am trying to get hold of Chris at Christies to find out, but have a nasty feeling that maybe she has decided that caring is not for her. Either way it leaves us right back where we started, with no carers booked in between Sheena finishing in a couple of weeks and the end of January. Yikes. Just to top it off, I spoke to my booking co-ordinator about bookings for early next year on Friday, and he must have already known as the letter arrived this morning - why not just tell me?

What a difference a day makes

2007-10-26T17:04:00.001+01:00

I felt really relieved after writing yesterday, and am feeling much better, with a lovely day today. Timmy came to visit this afternoon which was a treat, not only did I get to hear all about the little ones, but he also took with him a pile of books that were waiting in the hall, so that looks tidy too!! Joking apart I really enjoyed myself and it was great to hear about what he has been up to.

I also had a phone call from Zara today, a close friend from London days who lives in Devon, who is going to be visiting in a couple of weeks as she is going to be travelling almost straight past here, so that will be a treat too.

Mummy and Bel have spent the last couple of days at a Spa in Leicestershire, and right now Bel is in her car on her way up to stay for the weekend with Mummy and Barry, and tomorrow I will get to see her - wonderful. Just to top off a good day I also beat Rose and Sheena at cards!!

Reality Check

2007-10-25T17:52:00.000+01:00

Sometimes I don't write because I'm not well enough, sometimes because there is nothing to say, and sometimes like now I don't write because I just don't know what to say. Its been a bit of an odd week. Normally I am very upbeat, and it takes quite a lot to knock me off my game but for some unknown reason this week I have been feeling miserable. Things are ok health wise, I had a call from Dr Fallon and I am finally infection free, so I should be on top of the world, instead I have been feeling really down. I'm hating being stuck here in bed, and not really well enough to be going out, and the bungalow starts to feel a bit like a prison that I am trapped in. I came across an amazing web site this week called Post Secret where people send anonymous postcards with their biggest secrets, and I realised that whilst I write this blog about some of the stuff that is going on in my life, I never write about the bad bits.

I tried going over to Mummy's on Monday although I knew deep down that I wasn't feeling well enough and I ended up having spasms. Partly because I should have been listening to my body, and partly because I was crying - emotions effect everything too. Although crying is an emotional release, physically I always end up hurting more afterwards. I don't very often go through an its not fair phase, but sometimes I just wish that I had a normal life, and even more than that, that I had a normal life to look forwards to. Instead I see a life where I am stuck in bed, trapped in this house, and my health is going to do nothing but deteriorate. I don't write then, partly because it is hard to do, but partly because I know that people are reading this (ironic isn't it!) - for the most part I don't know who, but I know that you are out there, and I don't want to be that miserable winging cow that everyone knows and avoids. But here it is down days too.

When things aren't good its always the same things that go through my head. Right from the beginning of this I have had two back up plans - that's just me, can't manage anything without a back up plan!! As soon as I knew that I was seriously ill I made a living will, which basically says that if anything happens I don't want any medical treatment unless I agree to it - which means that they are to let me die rather than try and save me, and that's the easy way out. In all honestly I hope that's the way that it goes down rather than long and drawn out. When Granny Trindle died, they kept trying to save her and it wasn't fair, she was so ill, with only glimpses of her getting through every now and then, and she had been ready to go for ages. I don't want my death to be really drawn out. Then there is back up plan B, which is to go to Switzerland and have the dignified death that not allowed to people who are suffering in this country. There is a big problem with plan B though, I have to be still well enough to travel, otherwise I just plain can't get there. And that means leaving it up to fate.

Fate could be kind, or not. I am well aware of how bad things could get for me, paralysis, losing the ability to swallow, talk, and ending up being trapped in my body with no way of communicating with the world, and that is one of my biggest fears, because then there is no way out. Even the kindest outcome, that I stay the same as I am, is something that I am not always sure that I have the courage to do. It is just a sea of being stuck in bed, pain, boredom when my brain is working and my body isn't, with occasional glimpses of fun. How can this be enough?

Most of the time I have accepted that I will never have someone to share my life with, that I will never have children, that for example I will never dive again and feel that amazing sense of freedom. But sometimes I have to mourn the losses. This has been one of those weeks. I'm not saying so that you can feel sorry for me, I don't want that, I'm writing because that is what is happening in my life, and as people read this, I'm guessing people want to understand what my life is about. I might be wrong, if so feel free to let me know!!!!

Out and about

2007-10-20T16:29:00.001+01:00

Rach wasn't able to come yesterday, and as I was feeling well we decided to try a trip out. Blakemere is a craft centre about 10 mins away, and we needed to try something easy in case I wasn't up to it or had spasms, so it seemed like Christmas shopping was the answer! It was so nice to be out, see the sky properly, and just do something normal, something that hasn't happened since, I think, August. It was a great success, Rose and I had a lovely time and managed to get some presents too.

Today as I was feeling much more confident I have been to Roots n' Shoots with Mummy and Des. Its a garden centre near Chester and we were on a mission - Mummy has given me a lovely bit of topiary to go in the garden for my birthday and Christmas present.

It is the privet with three balls just to my left. There was originally a tree in the garden at the front which sadly died, so this will go in pride of place in the lawn at the front. It is due to be delivered sometime next week, so then a phone call to Roy for some help putting it in, and I am really looking forward to seeing it in place.

The roses also seem to have ignored the fact that they are supposed to have finished flowering, and we have one beautiful bloom and some buds, not great photo by any stretch of the imagination, but lovely to see something so cheery in the garden.

Last week I also made a decision about the beautiful picture that I bought in March with the money that Granny Trindle left me of the lovely nude. It is going to go up at the end of my bed, and always there to see. I couldn't make my mind up between there and the sitting room, but I have now phoned Dave Wright who helps with all sorts of things, and he is going to come and put it up in a couple of weeks. I put up a couple of pics in the sitting room early on, and Laura and Laini's pics in the hall early this year, so now I only have to decide about the rest of the pics, which are still, 3 years after moving in, in a box on the sitting room floor - I will get there but it seems to be a very slow process!

2007-10-19T09:33:00.000+01:00

Things definetely seem to have settled down a bit, although I am still going up and down, I haven't had to take any painkillers since I got out of hospital, so hopefully the bug is under control again. Dr Fallon called to say that my last urine specimen still showed the resistant bacteria, but that he didn't want to treat it unless it got really bad as there was no way of doing it without sending me into hospital again for IV antibiotics. The specimen was taken before I went into hospital, so he arranged for another one to be taken yesterday, but there doesn't seem to be any reason to think that this one will not also come back positive.

I made a big decision this week and have withdrawn from the year long OU course, lots of different reasons, not least I am already behind having not been well, but the main one was that I just wasn't enjoying it. Studying for an exam course is totally different from the short courses that I have been doing, and although Lisa (my dyslexia tutor) and I have been working really hard trying to find strategies that would work for me I was really struggling. My dyslexia has been playing a part, but the thing that let me down most was my memory, which has been effected by the MS. For normal life we have lots of things in place to make sure that I don't slip up, reminders on the computer for pills, and if something needs doing, it either goes into my diary or the carer diary so that I will get reminded which works great. However, when it comes to learning lists of facts and figures with references, that is a totally different ball game. It was starting to stress me out, sleepless nights and nightmares etc. I have been going backwards and forwards about it, I really didn't want to give up as it felt like surrendering, but also admitting defeat on an exam course means that I will never finish a degree with the Open University as all the 2nd and 3rd year courses have exams (1st year ones don't which is why it hasn't been a problem so far). Lisa and I sat down and had a really long chat about it, end result of which was that I needed to admit that it just wasn't going to be possible for me, so decision taken. I can still do short courses, and enjoy them for their own sake though!

Annie Midwood came again on Tuesday which was lovely. She does an art class nearby on a Tuesday, which makes it easy for her to get to me. She brought some of the stuff that she had been working on which was lovely to see. She is such a nice person, it is very rare that you meet someone who is just so lovely and intereting, so it is a real treat to spend time with her.

The lawn in the garden is mowed as part of the rent, and they have just arrived, the washing is out on the line, you wonder what they must think to themselves as they manoeuvre around my smalls on the line!!

We have also had handover this week, and I have a new carer called Des who arrived on Monday for training. Judy was here until Wednesday showing her the ropes, but she is now gone until after Christmas, as she is taking several months off to go home. Des seems to be doing really well, she is slightly older than most of the carers that I have had, but seems to fit in well, and is managing to stay on top of things which is very promising. We are even teaching her Rose's rummy, the card game that we play non-stop! She is here now until Sheena gets back on Wednesday - for what will be her last three weeks before she also goes home for Christmas! Having not had a new carer for a while I had managed to forget how many questions there were - not her fault, just the way that it is with a new carer. Luckily I am not too bad at the moment, otherwise the questions are quite exhausting!

Rach is coming to visit again this afternoon which I am really looking forward to, it is so nice to have a giggle and just let your hair down for a while! It is just amazing to have two new friends in my life, both with totally different stories to tell and who don't seem to mind visiting. Its not that I don't have stories to tell, but they are either old, or they are about my life now, which are often medical, or carers, and just don't seem that interesting!! For example, just so you know the fine details of life here, I am currently re-watching Grey's Anatomy Series 1, and reading James Patterson's Double Cross, so now you know!

Oh, I almost forgot, I have just had my hair cut, so it is now just below shoulder length - Rose and Mummy are both really pleased as they prefer it shorter, and for me it will grow again!!!

Hospital again

2007-10-13T15:58:00.000+01:00

Things went downhill a bit on Wednesday night, and having spoken to the doc I went in to hospital for further investigations, the good news is that it isn't gall stones which were one possibility, but they can't find anything specific, so it is probably down to the MS/ME again, and not a lot they can do, and according to their urine tests, I am infection free! I got out again this afternoon, so now back home safely tucked up in bed. I have been a very lucky girl this afternoon with both Mummy and Rose popping in for visits & to check that I am ok!

2007-10-10T13:21:00.001+01:00

Dr Fallon came out yesterday and did an exam of my tummy to try and see what the problem is, he thinks maybe it is still a bladder infection, but maybe is resistant to the antibiotics that we have been using. From what I understand, if this is the case we might have to make a decision about whether to go into hospital to have IV antibiotics, what a pain. Just to make sure he also wanted some blood tests. It appears that I don't want to give up blood at the moment, the poor district nurse this morning had four goes, and only managed to get one vial of the blood, so we have to try again on Friday once my veins have recovered!

I did have a lovely visit though, Ann and Annie Midwood came over for a cup of tea which was great, Annie is doing an art course just around the corner which will make it really easy to pop in, we already have next week planned. She is really nice, and totally down to earth, it has been a wonderful week of visits! As long as people don't mind me being a bit groggy visits are always possible, sometimes I am just less chatty than others!

The course is not going so well, once I have taken painkillers I am just unable to concentrate well enough to take stuff in, but as long as we can get this sorted, I will be able to catch up to where I am supposed to be.

The other thing from the last few days is a disastrous veggie crop, with some really puny onions, I am glad that I grew veggies last year to know that it is just the weather that has mucked everything up, the clay soil here makes too much rain into a very soggy and puddly mess. Next year is going to be better!

2007-10-07T15:13:00.000+01:00

I have had a really great couple of days in some ways, and really grim in others. Bad stuff first - I'm not feeling great, and most of this week has been a matter of getting the level of painkillers right, which is no fun at all, and leaves me feeling very hazy, and not much use for anything, let alone able to get on with my course, which is now falling behind.

The Good has been visitors, Rach came on Friday, and we had a lovely afternoon chatting away, she is a really interesting girl (I refuse to use lady as that makes us both old, and I'm sticking to that!!), with lots going on in her life, and a real giggle.

Then yesterday Claire came over, and we set the world to rights in both of our lives. I ended up crying at one point - all sorts of things, but mainly I am just so fed up with not feeling well again, carer chaos is rapidly approaching, and I am just not up to my course. It was a release though, and its good for me to talk about the crap every now and then, something I don't find very easy to do. On the medical front I finished the antibiotics yesterday, so sadly that might not be the problem. They test again mid-week though, so it is still just possible that it is an infection, but looking less likely, which would mean that I am going downhill again. Still I have had a really wonderful summer, with the photography course and a great trip to Trearddur under my belt. As for the course I will just have to wait and see how the next couple of weeks go before throwing my hand in.

Quick status report

2007-10-02T18:28:00.000+01:00

As of today my internet is finally working again, but the doctor has confirmed that I have picked up an infection. I haven't been doing so well over the past few weeks and it is a relief to finally know why. I am starting on some antibiotics, so hopefully I will be feeling much better in a few days.

Internet connections again

2007-09-27T19:01:00.001+01:00

You might think that by now my internet would be sorted, but it is still sporadically working and not working, which made for an interesting morning trying to do a bit of course work online. I did eventually get there but not without a few cuss words along the way!

I have had a great few days for visitors, Uncle Neilo was here on Monday, and lovely it was to see him too. Tuesday started not so well with the assessor from Christies (who is very nice, but it takes a while to do all the paperwork etc), but that was followed up by my first visit from Rach. She is a really lovely bubbly lady, almost exactly the same age as me (in fact that makes her a girl), and we had a great time with lots of giggles.

Yesterday my dyslexia tutor came, and we worked on note taking tactics for easy revision, using a system that is totally different from anything that I used at school. It might take me a while to get used to it, but I think it will work really well when I do. And this morning I started to put it into practice!