Seeing the psychologist, an upset tummy and lots of phone calls

Since my last update I've been listening to Taylor Swift's music and starting to get excited about seeing her in concert a week on Monday :D I'm going with my mum though and she only knows the song Love Story, so I need to persuade her to listen to both of Taylor Swift's albums this week. I've also watched the music channels on the TV too.

As well as watching the music channels I also saw Little Boots performing Remedy on the end of the Hollyoaks music show on Channel 4 this morning. I've also watched Film 2009, the last 3 episodes of Collision (which me and my parents really enjoyed), a weird documentary called Octomum (about a woman in America who is mum to 14 children under the age of 9 including 9 month old octuplets!), The X Factor (go Joe and Stacey, boo to the twins) and the Xtra Factor.

On DVD I watched another episode from my Vicar of Dibley boxset. And I've watched 2 full length films - a Japanese anime called My Neighbour Totoro, which was nice and I enjoyed watching it but it wasn't anything special and Tim Burton's The The Nightmare Before Christmas. I'd wanted to see that film for ages and got it with my Tesco DVD rentals a couple of days ago :) Me and mum really enjoyed watching it and I'd highly recomend it. It was original, imaginative, funny and clever :D The extra features were also really interesting about how they created the stop motion animation. I've just heard that the Killers have a new DVD out, called Live From The Royal Albert Hall, and I really like the look of it as I've seen them live on TV and they were fantastic! I'd love to see them in concert :D Their new DVD is not available on Tesco DVD rental though, so I might have to buy it at somepoint. But not now because I'm trying to be careful with my money. I borrowed a book from the library this week called the Rough Guide to Chick Flicks, which gave me some ideas for a few more films to add to my rental list.

I'm really impressed with my DVD rental service. They asked how many DVDs I thought I'd missed because of the disruption the postal strikes caused and I said 3. So today 3 bonus DVDs (on top of the 2 I usually get at a time) arrived in the post to make up for the ones I'd missed :) Also in the post today I received a letter from Hospital B advising me to get the swine flu vaccination, but I've got that under control and will be getting the jab on Mon. And I received a letter asking me to phone up to make an appointment for my ESA medical assessment, so I did and have an appointment on December 2nd. Eek! I also arranged a physio appointment at Hospital A based on hospital B's referral, which will be on November 30th.

A few weeks ago I joined a scheme that AYME run where a member with mild or moderate ME writes regularly (every 2 or 3 weeks) to a member with severe ME without expecting replies. I received a letter yesterday saying I'd been matched to a severely affected member and have been given her details. So I've drafted my first letter, but haven't sent it yet.

Earlier in the week I received a phone call from Hosp B saying that my 3 monthly bloods that were due at the start of this month can be delayed til the middle of next month when I'm in for my tests. And I had a phone call from my dietician apologising for the confusion because she had forgotten that she had already asked me to reduce feeds the previous week, lol. So I'm on 4 nights a week still and we'll review it next Tue. My appetite has mostly been good, but today wasn't so good. Hopefully tomorrow will be better though. On Fri the rest of my family had sweet and sour chicken for tea, but I had pasta instead (even though I much prefer sweet and sour chicken) because the chicken wasn't free range. Mum usually buys free range chicken, but hadn't last week.

I had tummy aches as normal on Wed and Fri, but my tummy was a lot worse than usual on Thur and not so good again today. I had an upset tummy and so on Thur I was worried about having a possible tummy bug or rejection, but luckily I didn't have a temperature and my symptoms didn't last long. I would have assumed it was just something I'd eaten, but it happened again (although it wasn't so bad) today. I'm currently thinking that it might be connected with the high calorie drinks that I've just restarted taking in the morning after a night off feed. So I had one on Thur and today, but not Wed or Fri. I'll avoid high calorie drinks for a bit and see and mention it to my dietician too and see what she thinks.

I've also been quite tired this week, but that's becoming normal for me now. My nocturnalism was worse than usual last night, I was awake til 3am rather than my usual 1 or 2am. And the night before wasn't too good earlier, I got to sleep at about 2.30am. I really need to order the smaller dose Melatonin tablets to try.

Tonight I'm trying the new NG tube tape for the first time, so fingers crossed that it'll come off ok in the morning as it seems to be sticking well so far.

On Wed mum took me to Hosp B to see the psychologist, J. We got there earlier than my appointment, so went shopping in that city :D I was disappointed to find that one of my favourite shops, Freespirit, which sold clothes and accessories, had shut down :( I thought it was a one-off shop, but after looking them up on the Internet I discovered they have stores all over the country, but none near me. They've got an online store coming soon though :D I was looking for a new bag because my current one is sometimes too small, so as Freespirit had closed down I had to keep looking. I found a big shop that was made up of lots of smaller shop sections and in a fair trade shop there I found the perfect bag :D And mum bought some wool in the city too, surprise surprise! :P

My appointment with J went quite well. We only had just over an hour, so it was an introductory session really. J said she doesn't think she can cure my ME, but hopes to help me live with it. She asked about my current ME symptoms and my feelings about them and asked me to fill out a short questionnaire to see where I was to start with. I was surprised at how knowledgeable J seemed about ME. And then she introduced me to 2 processes - CBT (cognitive behavioural therapy) and something called ACT which stands for acceptance, committment and therapy. I think that I understand CBT, but don't really understand ACT. And CBT seems aimed at changing negative thought patterns, but I don't think my thoughts are particularly negative. We'll see though, I'll give it a try. She also mentioned the importance of pacing, which is something I know I should do, but don't do at the moment. Another thing she said was to have a schedule for each day and to stick exactly to it whether I feel rubbish or amazing. I understand the need to do less than I feel I can do on my good days, but can't see that pushing myself to do more than I can on my bad days is going to help my health. And a schedule just seems too rigid for my liking. She's not suggested starting that yet though, so I will have a chance to speak to her more about it. I've got to do some homework (listing my ME symptoms under the headings physical, emotional and cognitive, giving my thoughts when I get each symptom and then how those thoughts make me feel) which I've started but not finished, and then email it to her. We'll then communicate via email now she's introduced me to the concepts and we'll also make an appointment to meet again. I've emailed her to try to arrange a date for my next appointment, but I've not had a response yet.

R got home from hospital again on Thur, so hopefully she'll be able to remain at home for longer this time. She's had ME for longer than me, so has been really supportive to me about having ME. Recently R has developed gastro problems (which is why she's needed to stay in hospital), so I've now been able to use my experience to support her with that :)

My friend Emma from the transplant community hasn't been feeling very well for the last couple of days. She has recently got a new blog so hasn't got many followers yet. So it'd be lovely if you could have a read of Emma's blog here and send her some virtual hugs because she's in need of them right now. Thanks.

On Wed we got home to find that someone mum knows had left a big bag on our front bench full of clothes and some brand new make-up that her daughters didn't want any more. I wasn't interested in the make-up personally as I don't wear it, but am going to have a look at it and see if it's new enough to use as presents. Me and mum had a look at the clothes and found that they were my size :D Most of them weren't items of clothing I'd wear, but I did find a nice denim skirt that I can wear over my leggings and a very pretty black top that I could definitely wear to go out in. The rest of the clothes wouldn't fit my mum, so I've passed them on to my friend Claire.

Receiving the bag of clothes from someone my mum knows reminded me about a favour she'd asked me a while ago. Her niece's son is on TPN and her neice was interested in speaking to mum about her experiences. I'd told mum that I would send an email on her behalf, but hadn't got round to it. So I did that on Thur - once I'd cleared out my intray to find the original letter! In my email I said that I wasn't sure how much help me or my mum would be because I'm now off TPN and have been for nearly 3 years, but we'd both be willing to talk to her if she wanted to.

I heard on Thur that Sarah's Gifts of Life photography exhibition has had to be postponed. If they're talking about the exhibition now then I guess that means that my photos wont be taken and included :( Sarah never got back to me about it though. I'm quite upset about that as I really wanted to be part of such a special exhibition and notified Sarah very early on, but my photo shoot was cancelled twice (both times by Sarah) and then not rearranged in time :(

Every year my mum organises Operation Christmas Child in our village. She promotes it and encourages people to cover shoeboxes with wrapping paper and then fill them with toys, stationery, hats, flannels etc to send to children in war torn countries who might not otherwise receive any gifts at Christmas. And then mum and a couple of other volunteers have to check every shoebox to make sure that all the items are suitable and to add in any missing things (such as cuddly toys). This was mum's 9th year doing Operation Christmas Child and I'm very proud of her for it :D I helped her out with making some posters this year, but didn't feel up to going into the village primary school to help with checking the boxes though. The boxes (I think there were about 220 this year from our village) all went off on Friday, but my mum received a few late ones today and I enjoyed helping her check through them at home.

Mum went to a craft fair on Thur to sell some of her knitting. She had a nice time selling her things and talking to people about knitting and made £70 :D Mum brought me some Christmas wrapping paper back from the craft fair which is good because I didn't have any. I wont be wrapping Christmas presents just yet, but it's nice to know I have some wrapping paper for when I want to do it.

On Friday Claire came round for tea. Before she came I straightened up my bedroom, but again we stayed downstairs all evening :P We had a lovely time (despite me being very tired and having a bit of tummy ache) and played my favourite card game, Ligretto, for about 2 hours solid! :P

I almost forgot to mention that Thursday (19th) will be my third transplant anniversary. I wont be doing anything special to celebrate as I don't feel comfortable celebrating when my donor family will be remembering the loved one they've lost. On the day I'm sure I'll be thinking a lot, especially about my donor family and will also be in touch with them via email. And I have got a few nice things planned this week and next week.