Monday, 10 May 2010

My weekend, health and Rachy

On Fri morn I felt quite depressed at all the election stuff. I'm not going to talk much about it here because I'm sure you're all fed up with politics now, but I was disappointed that Lib Dems did so badly and that the Tories got the most votes. I'm also concerned about what a coalition will mean especially if it ends up being between the Lib Dems and the Tories because they have such contrasting views.

That morn me and mum went out to see my nan though and that really cheered me up :) The first thing she asked me was whether I'd got my iPod with me because she was really keen to listen to some more music. I let her listen to Blue Eyes by Mika which she enjoyed but she said she preferred Marina and the Diamonds, so I let her listen to I Am Not A Robot. She loved that and was tapping her feet and singing along :) Next time I visit her I'm going to take her a copy of Marina's album and teach her how to play it through her DVD player or laptop. Mum and dad have also told me that she's just bought herself a new digital camera so I've got to teach her how to use that. I suspect it'll be a long job because she'll want to know what every button and every function do! :P

My copy of the latest issue to the Official Nintendo Magazine had arrived in the post that morn so I just relaxed and read that in the aft.

On Fri I received the email from S at Hosp A that she'd promised me before the end of the week
and I'm not very happy. She basically said that they do things similarly to Hosp B but told me that I'll need to have my Tac blood taken at clinic because they don't use Tac kits. Then she confirmed the dates of the next clinic and said she'd see me there. That was the entire content of the email I'd waited 6 weeks for! The plan for these 3 months was for me to become happier about communication with the team and for me to find out how things will work when I'm under Hosp A. Neither of those things have happened - I've discovered that being told a reply will take one week can turn into 6 weeks and I still have no idea at all how they do things at Hosp A. Aaarrrggghhh! I'm really worried about this transition as I still have no confidence in the Hosp A team. I don't think they'll be any better with communication once Hosp B are out of the picture and that worries me. And I don't want to find out how they do things when they need to do them and then discovering the problems, I want to know in advance so stuff can be sorted out.

On Fri eve Claire came round for tea and we had a nice time together playing a card game called Ligretto, chatting and playing on my Wii :)

Yesterday (Sat) I had a pyjama day and can't think of much interesting to report about it :P I finalised an information page for Transplant Kids with Emma and enjoyed watching Doctor Who, rewatching Ashes to Ashes from the previous night and rewatching episode 6 of the second series of Outnumbered. I also watched a funny film called Zombieland. I don't usually watch horror films but this was a horror comedy and I was surprised at how much I enjoyed it.

I've had a lazy day again today (Sun) because I've been very tired. I enjoyed
playing on New Super Mario Bros Wii for a little while and watching a film called Stardust. Lizzy recommended Stardust to me a little while ago but I kept putting off renting it because I don't usually enjoy fantasy films. But Tesco DVD rental sent it out to me so I tried it and was surprised at how much I enjoyed it. Today I also watched 2 episodes from series 2 of Outnumbered with my parents.

This evening I noticed that I'm running short on high calorie puddings so will need to give another prescription in at the surgery soon to get some more. But I thought before I do that I'd email my dieticians and ask them if I can stop having the high calorie puddings now because my weight is doing so well. I sent that email tonight so hope for positive replies within the next couple of days, fingers crossed. The high calorie puddings are the best high calorie supplements I've come across, but they're still not very pleasant and I can think of other foods I'd much rather eat instead.

I'm having serious problems with my mobile phone at the moment, grrr. I don't know if the 2 problems are connected or separate. The battery isn't fully charging and won't hold its charge so it's running down within less than 12 hours at the moment (compared to the week or longer that it used to hold it's charge for) which is really frustrating. The obvious solution to that would be to buy another battery and I've found that they're very cheap on eBay. But I've done some enquiring and it seems that the battery running down so quickly might be because the phone is having to work extra hard to get signal as the other problem I'm having at the moment is having no signal in places I'd usually have full signal. My phone only needs to last til the end of Sept and has never had any problems before so I didn't know what to do. I phoned Chris this eve and he
said that he thought the signal problems might be because the battery level is often low, so he suggested buying a new battery and seeing if that helps. So I ordered one from eBay tonight. Hopefully that'll arrive soon and fix the signal problem as well as the battery problem, fingers crossed.

This weekend my parents have been getting some of the Glastonbury stuff out to start preparing (Glastonbury is at the end of June). It's usually just dad and Alf that go so they've only got 2 sleeping mats, 2 sleeping bags etc, but mum is going with them this year (I'm staying at home in the warm and dry!) so they're having to sort out what mum needs to buy. They ordered her a sleeping mat and sleeping bag today online. When mum was trying out dad's sleeping bag the other day dad zipped it right up so she completely disappeared inside! I wish I'd had my camera handy! Mum has never slept in a sleeping bag before so that'll be a new experience for her. When she was trying out dad's she discovered it was too narrow for her to lie comfortably in (she sleeps in a weird position that's hard to explain in words), so dad ordered her a wider one. Mum has also ordered a clever gadget called a Shewee.

I've not got many plans for this week at the moment. Tomorrow (Mon) I'm going to visit my nan with mum to help her sort through her books and hopefully get rid of some. My nan isn't very good at getting rid of things though :P And my only other plan for this week is a physio appt on Wed aft.

Since I did the last blog post about my health as part of my big blog update I've though of a few more things to post about. My dizziness completely disappeared from last Sat eve to Tue eve which was fantastic. It then came back again but wasn't nearly as bad as before and I was only getting maybe one very brief and mild dizzy spell each day, which was a relief. However tonight while I've been sitting at my laptop I've been feeling quite dizzy despite sitting still, so I think I might try to make a GP appt tomorrow to get this checked out.

I sometimes go through spells of getting coldsores and have had a couple over the last few weeks. Sometimes they occur when I'm run down but I don't think my health is worse than usual at the moment. I thought the first one might have been caused by being out in the sun but the second one came in the gloomy weather so I don't know. They can be so sore and annoying though. Fingers crossed I won't get any more for a while.

I have been very nocturnal recently, which is annoying but I'm just trying to learn to live with it now. Going to sleep at about 4am the other night meant I probably didn't get enough sleep though.

My dad has recently self diagnosed himself with plantar fasciitis (the foot problem I have) in one of his feet. He wouldn't stop moaning about it when he first decided that was what it was - typical men! But he read on the Internet that stretching could cure it (my GP told me there was no cure) and now he's been stretching he says it's a lot better. At least he's stopped moaning so much now.

As I've mentioned before, my dad has recently started enjoying swimming and goes most days now. However we suspect he might be a bit allergic to some aspect of it because he always comes back sniffing and sneezing! Dad mentioned a few weeks ago that now he's achieved his goal of swimming 1 mile in a swimming pool he wants to try it in open water! I've not heard anything about that recently though so I suspect he might have had second thoughts.

My dad had a go at me the other day because he thought it was lazy of me not to be making my sandwiches at lunch time and asking mum to make them for me instead. After some upset I managed to explain to my parents that I don't like eating at the moment (although I have better days and worse days with that) and so I also don't like having anything more to do with food than I have to. Dad had no idea about the little things I often do around the house to help mum out during the day (emptying and stacking the dishwasher, pegging out and getting washing in, putting washing in the airing cupboard and getting it out and putting it away, going round to the local shop when we run out of things...) so when me and mum told him about that I think it made him see that I'm not being lazy. It was agreed that mum would continue making my sandwiches for me when she's in and I'll keep helping her out around the house.

Rachy has been in the media again a few times recently, she seems to be making really good progress at the moment and even wrote a blog post just over a week ago which you can read here! You can read an article from her local newspaper here, an article from the BBC news website here and you can even hear her talking on BBC Radio Manchester
here! The radio programme will only be available to listen to online til Thur morn, so please have a listen before then. Rachy's bit is at 2hrs and 51mins through.

My blog is almost completely up to date now. I just want to write a little bit about what music I've been listening to and share some photos of mum's recent knitting photos with you. I was going to put the photos up tonight, but they're not on my laptop at the mo so I'll have to get them from the family computer tomorrow. I'm also going to do a post in the next few days about ME Awareness Week 2010 which is running from the 8th to the 16th May.

While I've been writing this up I've put Mika's music on :D I'm not sure why I've not learnt yet that that isn't sensible at this time of night because it makes me go hyper :P

4 comments:

  1. I have to say your Nan sounds like a hoot and good for her wanting to be up to date on all the latest music and technology!! That is awesome. My Nan's are very old fashioned but I still love them and wouldn't change a thing.

    I am so sorry you are not having a good experience so far with your transition. However I do know things will be much different going into adult care. But I know that doesn't make up for the lack of confidence you are having. I do think the communication should be a lot better though. Hopefully you can talk about your concerns with them when you see them in clinic and get everything out in the open and sorted out. I am sorry you will have to go to clinic now for tac levels. In fact I have never even heard of being able to do it through a finger prick at home so you were lucky. I have to go out to get blood drawn biweekly for my tac levels and I hate it. But only just a month ago I was having to get it done weekly!

    Sorry you were tired today. I also had a Pyjama day. In fact I have a lot of Pyjama days...lol!!

    I am sure your Mom will love her camping adventure. It is quite fun...except when it rains!! I had never heard of a Shewee before but what a great idea! I could have used that many times in the past!

    Sorry you are still having the dizzy spells and now cold sores too....you poor thing. I hope your GP has some answers for you.

    I sure wish I could give you some of my appetite and love for eating. It must be so hard for you and I can understand you not wanting to handle food. I was the same way for months after my transplant when I was learning and trying to eat again. I hated the thoguth of food but as you can see, I am now healed.....haha!!

    MJ x x

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  2. The Shewee sounds very interesting indeed!

    I hope you manage to get a GP appointment soon for your dizziness and that helps to get to the bottom of things.

    I've had coldsores in the past - they're horrible. Sorry to hear you're having a lot of them at the moment; hugs.

    Do you think the exercises your dad is doing could help you?

    Rosie. :-) xx

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  3. I hope that the GP appointment goes well. I totally understand your lack of appetite because I never had one before my transplant and eating made me feel ill, even now after my transplant my eating has got much much much better, eating is still something that I just don't like doing sometimes.

    Thanks for linking me in your post :)
    Emma x

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  4. Thanks everyone for your comments :)

    My nan is great Michelle and I love her loads. She does drive us all mad sometimes though! :P

    Sorry to hear that you have to have your Tac levels checked so frequently Michelle, I only need mine checking every 3 months now. I'm hoping I'll be able to discuss my transition concerns at my clinic next month but I'm worried because they want me to complete my transition then but I'm really not happy to do that yet.

    Thanks Rosie and Michelle for your concern about my dizziness. I had a positive appt with my GP this morn and have been reassured that it's nothing to worry about. I'll blog more about it soon.

    Yeah the Shewee definitely sounds interesting! Haha :P I'll let you know how my mum gets on at Glastonbury.

    I'm going to ask my physio about exercises for my feet when I see her on Wed Rosie, so I'll let you know what she says.

    Thanks for understanding about me not liking food Michelle and Emma. Glad you're both enjoying eating most of the time now though.

    Hugs,
    Moll x x

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