Long overdue update - part 3

This is the 'medical' part of my long overdue update, part 3. You can read part 1 here and part 2 here. Part 4 (the final part) will be published tonight and then I'll be up to date with my blog :)

On Fri 5th I received the phone call from my dietician to discuss my food and symptom diary and my tummy pains. She told me about the apple high calorie puddings that are just like my strawberry ones, which is why I gave those a try last week. From studying my food and symptom diary she could see that my tummy pains were coming on after eating and in a similar pattern each day, but she couldn't see any link between what I ate and the pains. She was however very impressed with the variety of food and quantities of food that I'm eating and said that after seeing that she was much more confident that stopping my overnight feeds was the right decision :) I asked her whether the pains could be due to IBS (I still have my own colon), but she said she thought that it was much more likely to be something simple that is related to my transplant, but she didn't know what. She also said that if it was IBS then the tablets that my consultant from Hosp A had prescribed to stop the spasms would have helped, but they didn't. I told her how fed up I was and she's going to chase up the letter with the results from my admission in Dec as the scopes I had then showed some inflammation that could be linked to the pains. And she's also going to chase up my next clinic appt. She thought that some a tablet which is used to treat stomach acid might help (I'm not sure why) so said she might discuss that with my consultant. And in the meantime she thought that trying to stop one of my medications called Loperamide might help, but I'm not sure how that would work, so haven't tried it yet. So I'm not really any further with finding out the cause of or treatment for my tummy pains yet. It's getting to the stage now where I don't want to eat lunch because I know it will make my tummy hurt :(

On Tue 9th I got a shock when I weighed myself. In my first week off feeds I'd lost 0.9kg, so my weight had dropped from 51.6kg to 50.7kg! I was really surprised by that because my eating that week had been better than it had ever been before. I hoped it was just my weight settling. I emailed my dietician to let her know and she said she was disappointed, especially as I'd been eating so well. So this week I've upped my eating even more, but I hate it. It seemed to work though because this morning (Tue 16th) my weight was up by 1.3kg to 52kg! :D I've emailed my dietician to let her know. I was very relieved to see an increase as it feels like I've been eating loads over the past week and didn't want to have to go back onto overnight feeds. Not sure if I'll be able to keep this level of eating up though.

I was diagnosed with an ovarian cyst a couple of years ago and then I was put on a version of The Pill to stop the extreme mid-cycle pain I'd been getting every month. And it worked. My periods got worse and more irregular (they weren't ever easy to manage) though, so my GP suggested I doubled the dose of The Pill that I was taking and that stopped my periods :) But I've got a heavy period now and I've no idea why. Grrr.

This last week I've been surprised at how much I've managed to do without feeling completely awful for days afterwards. I'd love to think that I'm getting better, but I think it's just the ups and downs of ME. It's nice though :)

I am almost always cold and have been since I developed ME. Sometimes I can't get warm even when the heating is on. And often when I'm upstairs and everyone else is downstairs my parents will only put the downstairs heating on. So at times like that and at night when I'm still awake but my parents are asleep (they turn the heating off when they go to bed) I can get very cold in my room. I spoke to my parents about this and after lots of persuasion dad said that I could get a portable heater for my bedroom, as long as I'm sensible when using it and am willing to pay a little bit more rent to cover the cost of using it. I've done some research using the Which website and I think a convector heater would be best for me. Dad wants me to get a low efficiency one though and the Which website doesn't mention their efficiency. So I need to investigate that.

My ESA medical assessment took place just over 5 weeks ago and since then I've been waiting to receive a letter about the outcome. I received my monthly bank statement through the post last week but didn't look at it til Fri night. Then I discovered that I'd not been paid any ESA since the end of Dec, so none since my medical assessment. I assumed that this means that they'd decided that I couldn't have ESA as a result of my medical assessment, but for some reason they either hadn't notified me or maybe Royal Mail lost the letter (I wouldn't put it past them, they've already lost 2 parcels to me over the last 4 - 6 weeks!). I hoped that there was going to be another reason for it, but I doubted it. I really didn't want to have to appeal. And it was frustrating to think that although I know I'm not well enough to work, they might not believe me. I get the higher rate of DLA at the moment, so knew I'd be ok without ESA for now, but I suspect that when my DLA comes to be reviewed later in the year I'm either going to have it drastically reduced or lose in completely as I currently claim for post transplant related reasons, but everything there is improved now. I've developed ME since my last claim, but I know from other ME sufferers that it's very hard to get DLA for ME.

All day yesterday I tried to get through to Job Centre Plus on the phone to find out more about my ESA, but I couldn't get through. Today I started trying just after 10am and was shocked when I got through at about 11.45am! After the medical assessement I have been granted ESA and I will be put into the support group (which gets slightly more money and it also means the Pathways to Work interviews I've been attended are no optional rather than compulsary). My letter should be in the post very soon. They're also going to backpay me all the money I missed while it was was stopped. I'm so relieved that they've believed me and given me the benefit. Phew!

Eventually I heard from physio at Hosp A. The physio I saw sent me a letter. He's sorry that I can't make any of his limited appts so said he can either refer me to a colleague who has a wider range of appts or see if he can refer me to some physio locally. He said to let him know what I want, so I left a message with a receptionist in the physio department saying I'd like to be referred to Hosp H.

Up until Tue I was doing really well with my sleep as I was getting into bed around midnight every night. On Wed I was later getting into bed though because I was a bit nocturnal. On Thur I was very tired and not nocturnal, so got into bed at 10.30pm and had between 11 and 12 hours sleep! On Fri night I was nocturnal again and Sat night was just awful because I worked myself up into quite a state about my ESA, so had a very disturbed night. On Sun night I very was nocturnal and was up til late (3.30am ish!) writing this blog update and last night I was nocturnal again. Once I'm in bed though it doesn't mean I sleep straight away, usually it takes between 30mins and an hour for me to fall asleep. It can take longer though. And despite me getting to sleep at different times each night, I've been getting up between 10am and 11am most mornings.

I've found an American website that sell a very wide range of transplant t-shirts and other items of clothing. You can see them here. I was very impressed that they even have a range for people who have had small bowel transplants here! The colour that America use to promote organ donation (green) is different to the UK colours for organ donation (red and blue). This recycling range is my favourite though and I'm considering buying something from it. I don't like to buy clothing without trying it on first though.