Physio, weight and listening to music

On top of my exhaustion this week I also had a sore throat for a couple of days and now I suspect I might be coming down with a cold. My mum is hardly ever ill, but she's been feeling awful with a cold for the last few days :( So I'm hoping she'll soon feel better and if I develop her cold her I really hope it doesn't affect me as badly, fingers crossed.

On Monday I made a phone call to chase up my Tac delivery because they had said the previous Mon that they needed to contact Hosp B to confirm that they had doubled my dose and would then ring me back to arrange a delivery. But I'd not heard anything and was worried because I had less than one week's supply of Tac left. When I rang them they said that all the paperwork had been completed by Hosp B so they would be able to send me a delivery. It was arranged for today and so arrived this morning. Phew! If I hadn't chased them up I think I might have ended up running out of Tac. And dad collected some of my other tablets from the pharmacy when he went to the GP that morning for his diabetes review (which went fine).

Then on Monday we headed out to Hosp A for my first physio appt. When I last had a clinic at Hosp B they were shocked I wasn't getting any support for my ME locally, so the physio there suggested getting me some physio locally to see if that helped my ME. However she didn't refer me to Hosp H, which is 6 miles away and takes 10mins to get to in the car, but instead referred me to Hosp A, which is 25 miles away and because it's in the city it takes an hour and a quarter to drive to! And when I saw a physio he read out my referral letter which didn't even mention ME! And he didn't seem to know anything about ME either! Grrr. My appt lasted for an hour and he made some suggestions to me. Some, such as splitting tasks up into smaller chunks, sounded sensible. But some, such as going from doing as little as I am now to doing a brisk 5 to 10 min walk each day, I suspect could do me more harm than good. And he wants to see me weekly, which isn't practical with the distance we live away. So I had a think about it and thought I'd give it one more try and talk to him about my concerns. I phoned the receptionist yesterday to arrange a second appt and told her that I can't make appts on Tues (because my mum works so I have no transport) and I can't manage to get there before 10am. They couldn't fit me in in the next month! So she said she'd talk to my physio and ring me back, but I've not heard yet. I'm hoping that either they'll give me an appt for in a month or so or will refer me to Hosp H. And ideally I'd like to see a physio who knows about ME too. Surely that's not too much to ask.

After my physio appt we had drinks in the cafe in the outpatient area at Hosp A and I called in the shop to top up my phone. Then we headed back to the car in the multistory car park. Walking towards the car mum couldn't find her car keys in her bag. Then we got to the car to find a note on the windscreen saying that her car keys had been handed in at reception. She must have left them in the car door, whoops! We assumed that by reception they meant customer services on the ground floor of the car park, but there was a note with the man there saying to go to the hospital reception. We found the keys there.

When we got home I was exhausted and was also shattered yesterday too. On Mon eve my dad went out to his first swimming lesson. He can swim, but not very efficiently, so has just joined an improvers class. He enjoyed it and sounds eager to go swimming again when he can. He pays for his lessons, but outside of lessons he can swim for free now he's 60. He had ordered some prescription goggles, but they didn't arrive until Tues morn. He'll use them for swimming from now on though. I used to love swimming, but am not well enough to do it at the moment. I do miss it though.

While dad was out at his swimming lesson, Chris and Sophie came round. They are hoping to move house. They currently live in a nice little flat and have been there since last March. But they don't get on with their neighbours and feel that they're outgrowing the flat (which might be due to the fact that they now have 4 degus!). So before they came to see us they went to look round a little cottage in a nearby village. It's quite small so the rent is only a little bit more than their current rent, but they think they can afford it. They are currently waiting to hear from the landlord (who lives in Australia), but are hoping to move in at the start of March.

And F was due to come round on Mon eve, but didn't turn up. That was the second time she'd arranged to come round. The first time she didn't make it because she was ill, but forgot to contact me to let me know. And then on Mon something came up so she couldn't make it, but I didn't find out until I text her after she was due to have come. Again she forgot to contact me. But I don't know the circumstances, so can't blame her. I was disappointed though.

Yesterday I didn't manage to do much because I was so tired. I watched a lot of TV. We found out that my nan is still in hospital because she's got diarrhoea. The doctors don't yet know why, so have delayed her discharge til she's better. Until we know the cause we can't risk visiting her at the moment just in case one of us was to pick something up, as tummy bugs can be very dangerous for me. Hopefully she'll feel better soon.

I have to have a go at putting together a draft CV before I see someone at Pathways to Work in a couple of weeks to help me put a proper one together. Chris is great with CVs (his makes people believe he has voluntarily left all the jobs he has been fired from, lol!), so he's emailed me his to have a look at and said to contact him if I need any help. So that is going to be one of my jobs for the next week or so.

As you know my mum works in the village library. There is only her and one other regular member of staff, but they have some relief staff in case they are ill etc. One of the relief staff is called A and my mum and many other people refer to her as Saint A. Saint A is very odd, very religious, calls her parents 'Mummy' and 'Daddy' despite being quite old (maybe in her 50s) and believes everyone loves her but every time she works in the library she ends up upsetting all the customers! For some reason she is currently in the process of setting up a discussion group for teenagers (over 15s) in the village. I'm not sure how often it will take place but the first session is one Friday eve at the start of Feb and I've got an invite. And hilariously, so has Alf! There isn't much for teenagers to do in the village, but we're not that desperate! I haven't actually seen the invite yet because mum has left it at work, but I was talking to a friend, V, who has also got an invite and apparently there will also be bread and soup available at the group. Mum says that it is mostly teenagers that Saint A knows from church who have been invited, but it's not a religuous discussion group - thank goodness. V is desperately trying to think up a good excuse to get out of it and so I'm not going if she's not going because I don't fancy it on my own but it might be a laugh together. So I'll let you know what V decides to do. Alf has already said no chance.

On Sun I was supposed to start keeping a diary of my food intake and tummy pains for a week for my dietician, but I forgot, so started on Mon instead. Keeping the diary is going ok, but it's sod's law, now I'm recording everything my tummy pains aren't nearly as frequent, long lasting or painful! Grrr.

My weight on Tue morn was 50.9kg. I can't stop feeds til I reach 51kg. The previous week I was 50.8kg, so fingers crossed I'll be 51kg next Tue. I'm still trying the various high calorie supplements. I've had another (my third and final) strawberry pudding and I don't mind those so am going to contact the pharmacy at my GP surgery tomorrow (I tried today but for some reason they were shut) to see if they can order me some more in. I started a yoghurt style Fortisip drink yesterday but then thought that I had better check with my dietician that I was ok to eat it because I have to avoid most youghurts because they contain probiotics, which could be dangerous to me because I've had a small bowel transplant. My dietician said that they are fine for me to drink, but that one has been open for too long now, so I'll try the other one tomorrow. I'm not at all keen on the flavours (vanilla & lemon and raspberry) but am going to try to judge it on the texture and then if that's ok I'll enquire about different flavours.

I've been catching up with some emails and letters over the last couple of days and seem to be on top of them now. This morning I got a lovely card and letter from Kate, my AYME buddy. She's having a tough time at the moment with her health, so I've written her a letter today and hope to get that in the post to her soon.

It's been snowing here for most of the day, but interspersed with rain and sleet, so none of it has settled. I'm feeling better today than I did Mon aft and yesterday, despite possibly having the start of a cold. My mum isn't well enough to go out the cinema tonight, but me and Claire are still hoping to go together to see St Trinians :)

I've recently heard that Mika's next single to be released in the UK will be Blame it on the Girls. I love this song and was disappointed when it was released in the USA and Japan at the end of last year, but we got Rain here instead (which is good, but not as good in my opinion). I've already heard Blame it on the Girls being played on the radio already even though it's not going to be released til Feb and it cheers me up every time I hear it :)

In my last blog update I mentioned that Ellie Goulding who I'd seen supporting Little Boots had been named as the BBC's Sound of 2010. She released the great Under The Sheets last year. Since then mum told me that she'd heard a song of hers called Starry Eyes on the radio a couple of times, so I looked it up and found out that it will be her next single which will be released in Feb before her debut album in March. I really like it and can remember her performing it when we saw her live. And a friend pointed me to an interesting cover that Ellie Goulding has done of Sam Sparrow's Black and Gold.

Another artist on the BBC's Sound of 2010 list is Owl City. I don't know much about him, but have heard Fireflies on the music channels a few times this week and really like it.

And Justin Bieber (who we saw supporting Taylor Swift in November) keeps popping up on the music channels with his latest video, One Time. I'm not a fan though.

Since my last update me and mum managed to finish watching Pride and Prejudice (the Kiera Knightley version). I didn't really like it though and wouldn't watch it again. And I've watched 27 Dresses which I enjoyed. I also attemped to watch Magagascar 2 yesterday, but couldn't follow it because I was so tired. I'll try again another time.

On DVD I've watched 3 and a half episodes of the Vicar of Dibley and 2 episodes of Gavin and Stacey. And one of my rental DVDs that came is an S Club 7 one (I used to love them), with interviews and music videos. I watched the interviews yesterday and am looking forward to watching the music videos because I don't think I've actually seen many of them.

And I've watched a bit on TV too. When I'm tired the music channels are always easy to watch. And today I watched an old Jools Holland we'd recorded but not watched yet that featured Ellie Goulding :) On our hard disc recorder I also discovered a special edition of the Culture Show from a few months ago which was celebrating 20 years of Wallace and Gromit, so I enjoyed watching that. I also watched the brilliant Nurse Jackie, Film 2010 (I was disappointed that Sandra Bullock's latest film got such an awful review), Channel 4's Bodyshock: Girl Who Cries Blood and half of an episode of Wanted Down Under until I got bored.

Although I only knew Jess through friends, her death last night has really got me thinking. I wrote a brief blog post about her death here, but might write more in my next blog once my thoughts make a bit more sense.