Not being able to eat

Following my last blog post I received a comment from Indigo Jo containing some interesting questions that I'd not previously answered in my blog. So rather than just leaving a comment with my responses I thought I'd post them up here so everyone can read them.

The comment I will be responding to was:
I've looked through your blog and I had one question that doesn't seem to have been answered, which is what it was like not eating for so long? Did you never eat, or even have water (e.g. when it was a hot day) - you couldn't have waited until the night if you were dehydrated, surely? Did you ever see others eating and want some for yourself, and how did you and your parents deal with that?

When I was little my parents used to try to tempt to me to eat but I could never tolerate anything more than a teaspoon of food. If I had any more I'd be sick. There were also numerous attempts to feed me enterally (into my digestive system), rather than intravenously (into my bloodstream) but these all failed.

I could drink a small amount of water pre-transplant - I'd have sips of it with my tablets but I could never drink anywhere near normal volumes of it, I wouldn't have been able to keep it down. I never had problems with dehydration though. Thinking back on it I'm not really sure how that worked though as now it seems odd to me, but somehow dehydration was never a problem for me.

I never missed eating because it was something I'd never known. I'm sure it'd be very different if someone was suddenly unable to eat after being able to eat normally for many years though. Most of the time it didn't bother me at all and I never had any interest in food. I'd sit at the dining room table with a book and read my the rest of my family ate meals. I found a lot of celebrations were very centred around food though, especially in my extended family where every Christmas or other gathering would revolve around a big meal. So I sometimes found it difficult on those occasions, but it would be more that I'd get bored with all the fuss about the food, rather than wanting to join in.

I hope this answers the questions and if anyone has any more then please leave a comment and I'll try to respond to them. I also hope to get back to blogging properly soon. Thanks for reading.

Quick Update

Sorry for not posting again for a little while. I know I'd just got back into the routine of blogging and was trying to get my blog up to date, but my health hasn't been too good over the last fortnight so I've not managed to keep up the blogging.

As you'll know I went to 2 amazing concerts a couple of weeks ago. I blogged about seeing Marina and the Diamonds here and hope to blog about seeing Eliza Doolittle soon. It seems that a combination of attending 2 concerts close together and then getting a virus (mainly manifesting itself as a bad cough) has knocked my health a bit and this past week or two my energy levels have been lower than they usually are.

I've got a busy week coming up with 2 more concerts, so am really hoping I'll have enough energy to manage those. I hope to get back to blogging soon.

GFR and clinic at Hosp A

Today (18th Oct 2010) I spent most of the day at Hosp A. I'd asked for two appts to be on the same day so we could save ourselves a 60 mile round trip. It made it into quite a long day though. I am aware I've used some medical terminology in this post but I hope I've explained everything ok. If there's anything I need to explain but haven't, just let me know in a comment :)

We set off in plenty of time this morn (which meant me getting up at 7.45am, eek!) and left ourselves an hour and a quarter to travel the 30 miles to Hosp A as that usually works out fine. The hosp is in a city and we have to use a few major roads to get there which is why it takes so long to cover 30 miles. Unfortunately there was a traffic accident on our route this morn which delayed us and then the traffic just seemed very heavy at a couple of other places on our route. So I had to ring the department up and let them know we'd be a little bit late. Think I was about 15/20mins late in the end.

When we got to the hosp we nipped into the main toilets in the concourse and weren't impressed to find that only 2 out of 5 cubicles had toilet roll. When I was there last Thur only 3 out of 5 had. When we returned to the toilets about an hour later we couldn't believe that only 1 of the 5 cubicles had toilet roll so we complained at the reception desk. The lady there said she's already phoned up about it but phoned again. When we called back later there were toilet rolls in all the cubicles :)

I then headed to the nuclear medicine department for my kidney function test, known as a GFR. The antirejection medication I take, Tacrolimus, can damage your kidneys so they have to keep a close eye on mine. I had this test once at Hosp B in the 4 years following my transplant but my consultant at Hosp A suggested I had it 3 monthly. I persuaded him to make it 6 monthly, but if my results from today's test come back fine I'm going to ask him if I can have it annually. The test consisted of an injection of radioactive material into one hand and then blood taken from the other hand (via a cannula) 2, 3 and 4 hours later. So lots of waiting around.

I was a bit nervous about the injection and the cannula because sometimes phlebotomists struggle with my veins. The doctor I had for the injection didn't seem very friendly but she listened to me when I told her which my best veins were and said she'd be fine using veins in my hands (as the ones in my elbows are rubbish, but sometimes phlebs won't accept my word from that and want to try them). So she inserted a butterfly needle into my right hand, flushed it and then gave me the radioactive injection. As she gave me the injection I felt the cold liquid and then felt a bit hot and slightly faint. I didn't think anything of it as I sometimes feel a little bit faint after blood tests, but I took my fleece off and told her how I felt.

Then things got a lot worse and I felt really really ill. I've felt a bit faint after blood tests before, but not like what happened today. I felt like I was boiling up, my heart was pounding, I felt really faint, my hearing went funny (everything went echoey), everything seemed really distant and it was really scary, I was terrified. I'm not entirely sure what happened next but I think I was helped onto a bed and was wheeled to a different part of the department. Mum said it was all over quickly but it felt like a while to me.

I gradually started to feel a bit better and could sit up. Most of the radioactive team were away on a training morning so there weren't many people around, just the doctor who'd given me the injection and two nurses. We spoke to them a bit and apparently there isn't anything in the injection that people can react to and no-one had ever had any problems with it before. They seemed to think that I'd just felt funny after having an injection, but I know it was more than that.

Mum thinks my body has problems with adrenaline because often I seem to get extreme reactions to relatively harmless things. Apparently the radioactive material is seen as a waste product by your body so I think mine reacted to that for some reason. Although I'd had the test at Hosp B once before I don't know if they used the same radioactive material. I felt back to normal within about 20/30mins I think, but I don't really know what length of time it was. I felt light headed and my hearing went funny on a couple of occasions over the next few hours but it wasn't too bad. I don't understand my body! :P

The waiting around between blood tests wasn't as bad as I expected. There is free wireless Internet in the concourse, so I surfed the Internet on my iPhone and listened to some new music I'd downloaded last night. I decided not to have a cannula inserted just after the injection but to have it when I returned for my first blood test after 2 hours. We hadn't been told we had to return to a different reception so were waiting in the wrong place for a little while! I told the doctor which was my best vein on my left hand and she said it wouldn't take a cannula. But it did! :) I thought their way of protecting the cannula was funny, they didn't bandage it like Hosp B used to do, they just put a tubigrip over my hand :P That was much more comfortable once a nurse suggested cutting a thumb hole in it :) The cannula was fine for my first and second blood tests and just lasted for the third one, phew!

As a result of being late for my GFR and then having some of my blood tests a little late we were a bit late to my transplant clinic which had been scheduled after that. But I'd already text S, the transplant co-ordinator, to let her know, so that was fine. Mum attended the clinic appt with me and also in the room were my consultant, Dr W, the transplant co-ordinator, S, and my dietician, C. While we were waiting for Dr W to arrive we chatted to S and C. I'm still not sure about S but I really like C :)

Dr W took my dizziness seriously which I was really pleased with. He took my sitting and standing blood pressure which were both exactly the same and within the normal range so that suggests it's not related to my blood pressure. He thought that lying down when I get dizzy might still help though. He said when I get dizzy he wants me to do a couple of things to get some more information about it. He wants me to monitor my pulse and see if it speeds up or is irregular at all. And he wants someone else to look at my eyes and see if they flicker at all. He's also going to contact my GP about me getting a 24 hour tape (where your heart rhythm is monitored for 24 hours at home) done at my local hospital.

Dr W thought my headaches might be tension headaches as they tend to occur in the evenings and are in my forehead. Apparently there's not really anything that can be done though. Amitriptyline sometimes helps but I'm on that already. So he said just to see how they go and be aware that they might be caused by tension, but apparently there's nothing I do to fix that so I'm not sure why being aware of it will be helpful! S thought some gel pads that you can buy from the supermarket for migraines might help. And Dr W suggested it might be a good idea for me to try drinking more, or at least to spread my drinks out more evenly throughout the day, rather than drinking most of them at night, in case the headaches are caused by dehydration.

I told Dr W how my gynaecology stuff is going and asked him what he thought about me trying the combined pill. I'm currently on a progesterone only pill (POP) as I'd been told because I had liver problems in the past I couldn't have a pill containing oestrogen. But my new liver is healthy and has never had any problems. And I'm having trouble with my periods at the moment, which the POP doesn't control but a combined pill would. He couldn't see any problems with me having a combined pill so suggested I talk to my gynaecologist about that when I see her next (on Dec 23rd). So I'm hoping she'll say yes and that'll sort my periods out, fingers crossed.

I mentioned that my abdominal pains are better at the moment, but I'm not sure if that's due to doubling the dose of my amitriptyline, starting some fibre supplements or varying my diet more. Or maybe a mixture of those things. Dr W was pleased with that but wasn't surprised that I'm still getting some pains because my body is still getting used to what's normal for me.

Everyone was very pleased that my weight is so stable, that I'm finding eating easier at the moment and that I'm being a bit more adventurous with trying new foods.

I told my consultant how I'd corrected my sleep pattern for about 6 weeks but hadn't found that my productive time (11pm onwards) came at any other time of the day, I'd just lost it completely. Then when it slipped I couldn't motivate myself to correct it again. He suggested I tried to correct it again but more gradually this time. I've not decided if I'm going to do that yet - it's so hard fighting my body.

Dr W couldn't offer any help for my frequent coldsores so I guess I'll just have to put up with them. He didn't have any ideas about my eye ache and was as puzzled as everyone else has been about the rash I get under my eyes from the sun, but thought sunglasses might be a good idea, so I'll look into them again next summer.

After I told Dr W about my reaction to the GFR he was very puzzled as he didn't think there was anything in it that I could react to either. I told him I was worried about my next one following my experience today so he said before that he'll arrange for me to have an injection of a small quantity of the radioactive material to see if I react to that.

I asked about the results of the DEXA scan I had about a month ago and I'm glad I did because I don't think Dr W would have told me otherwise. Apparently my bone density was -1.9 which is right at the bottom of the normal range. I asked if that could be due to my steroids but he thought it was more likely to be due to things in my body being a bit delayed due to me being so ill. He said they'd keep a close eye on it but wants to start me on a calcium supplement as a precaution. He gave me a prescription for that to take to the pharmacy there but when we tried that they said we'd have to wait 40mins! That would have meant we'd have had to drive home in the rush hour so we decided against that. We were supposed to go back and ask for a different prescription to take to my GP but I've just emailed my GP the details from that prescription and I'm sure he'll prescribe it for me.

Finally I mentioned to Dr W that I'd volunteered him to talk at the PINNT weekend next year that I'm going to speak at. He didn't seem to mind :)

It was nice to head home after a long day, I think we'd spent about 6 hours at the hosp. I've got a 2 and a half week break before my next hosp appt. I'll next be seeing Dr W when I have my annual scope at Hosp A sometime in Dec and I think I'll see him properly in clinic in Jan or Feb.

I'm just having a quiet evening. Alf had some friends round briefly earlier and mum was chatting to one about knitting because she'd started her off knitting last time she came round! Mum also got chatting to two fellow knitters at the hosp today, she must attract them in some way! :P

I've got a few nice plans for the next few days. Tomorrow aft a friend with ME is coming round and on Wed eve I'm going to the cinema with Claire to see Eat, Pray, Love. Then on Sat I've got my first concert of this spell of them - Marina and the Diamonds! I'm so excited :D And next Mon is my second concert - Eliza Doolittle :)

Other health stuff

Yesterday I received an appt to see my gynaecologist through the post for a Tue in Dec. Unfortunately it's a date my mum is going to give a knitting talk at another library so to attend that appt I'd either have to get a lift there and back from dad when he went to work, so spend all day at the hosp/in the city, or come home on the buses which isn't simple. Due to having no idea how I'll feel on that day I decided to try to rearrange it to a time when mum will be able to take me. I was worried I'd have to wait a lot longer because my gynaecologist is often very busy, but I've got an appt for less than a fortnight later on a date my mum isn't working. It is the day before Christmas Eve though.

At my last clinic appt I mentioned to my consultant that I had an uncomfortable bulge in the side of my abdomen when I lay down. It's not a hernia but it is a weakening of the muscles in my abdomen as a result of all my operations. I can't do anything about it though. Luckily it's not causing me any problems at the moment but sometimes it's quite uncomfortable.

I was struggling with dizzy spells when I wrote my last update. They got a lot better but I've had a few spells of them since then. I thought things had settled down til yesterday when they returned again.

Since I've put on the last couple of kilograms of weight I've developed stretch marks on my legs. When I mentioned this to my consultant he said that I'm more prone to them because I'm on steroids.

I've been having lots of coldsores recently. I wondered if they were being triggered by the sun but they don't seem to be because they come up even when I've not been out in the sun. I hate them, grrr.

I've had my ears pierced since I was about 10 and have always been very lucky in that I've been able to wear any earrings. But recently I seem to have developed an allergy to cheap earrings. It's nothing major in the grand scheme of things but it is frustrating because I have lots of earrings that aren't gold or silver.

I found that my skin was very itchy last month ago and I couldn't work out why. It turned out that mum had changed the soap and I must have reacted to it. So swapping back to our normal soap solved the problem :)

In May I received the dreaded DLA renewal forms in the post, eek! They were last filled out quite soon after my transplant so quite a lot had changed since then - I'd recovered from the transplant but had developed ME. Dad used to fill my DLA forms in for me, but this time I did it myself, with some assistance from dad. I did it online in June and didn't find it too stressful. I heard the result in July - my care rate had dropped from higher rate to lower rate. I think that was a fair outcome, but that now means I'm adjusting to quite a drop in income. And I was very relieved I didn't have to have a medical assessment.

We were able to have our loft properly insulated last month for free because I receive DLA, so that should enable us to save some money on our heating.

I've recently set myself up a second bank account which will be better for saving money as it's got a higher interest rate than my original account.

I also renewed my CEA card earlier in the year.

I think I'd stopped volunteering at Barnardo's last time I updated, but I can't remember. Anyway I quit that because none of the other volunteers spoke to me so I found it very lonely work. I intended to find another volunteering job (like my Pathways to Work advisor encouraged me to) but haven't done that yet. Although I do do some voluntary work for AYME - I write (although not as regularly as I should) to a girl who is severely affected by ME, I provide feedback on each issue of AYME's bi-monthly magazine and I am the local contact for my county (so I put young people within my county in touch with each other and hope to organise a local meet-up soon). I did apply for a postion as a moderator on the AYME forums in the summer, but I didn't get the job. I suspect it may have been because I've not been on the forums very long - it's just over a year now but it was less than a year when I applied for this position a few months ago. My Pathway to Work advisor was made redundant so I won't be seeing her any more.

As I just mentioned, I've been a member of AYME for just over a year now. They are a fantastic charity which provides lots of support for young people aged under 26 who suffer from ME. I've found their forums invaluable as through them I've met lots of people who understand what I'm going through and I've made some great friends :)

My focus and concentration (which are affected by my ME) haven't changed significantly but I did manage to read some short stories and even a whole novel in the summer :D I'm still struggling to read though and I've not read any novels since that one as it just takes too much effort to make it enjoyable. Although having said that, a novel by an author I like came into the library recently so I think I'll give that a try. I can still manage to watch films and TV when I'm not too exhausted, but I think I'll talk about that more in another update.

I've recently made a new friend with ME. I've got lots of online friends, but Rebecca lives in the same village as me. She met mum through using the library a lot and then mum introduced her to me. We've only met up a couple of times so far but we got on really well (despite her being quite a bit older than me) and I'm looking forward to seeing her more :)

In July it was my 2 year ME anniversary. And back in May it was my 3 and a half year transplant anniversary, next month it'll be 4 years. I've not been in touch with my donor's sisters for a while so I need to get back in touch with them soon.

I recently heard from the chair of a fantastic charity called PINNT which supports people on enteral and IV feeding. I used to be quite involved with this support group when I was younger but obviously since my transplant I've become a bit more distant from them because I'm no longer on TPN. I did go to the meet-up in my county earlier in the year though. I know C, the chair, very well, so it was lovely to get an email from her. She asked about how I was and then asked if I'd like to give a presentation about being on TPN and then the decision to have a transplant and the PINNT weekend next year. So of course I said yes :) Mum or dad will talk too and maybe my consultant from Hosp A. I've got a further email since then with a few more details. C has asked me to talk for about 20mins which is a very long time, but hopefully if I can include a question and answer session then that should be fine. C thinks it'll be a very thought provoking session and I'm hoping that as well as getting people thinking (and hopefully signing up to the organ donor register), it will also reassure people who may need a small bowel transplant in the future.

On May 19th I gave a talk about organ donation to a group of teenagers. I was very nervous beforehand because although I'd spoken to hundreds of adults before I'd never given a talk to teenagers. However it went really well and I got them all talking about organ donation and a couple even filled out the forms there and then. One girl misunderstood what I was asking of her and thought that I wanted her to donate her organs while she was still alive. Despite that she still filled out the form.

Please don't forget to spread the word about organ donation by sharing the video I posted here to help to prevent unnecessary deaths like Kennedy's.

Appts, physio and eyes

I had a routine bone density scan at Hosp A on Sept 13th. I haven't heard the results of that yet but I'm not expecting there to be any problems with them. I just have to have these scans regularly because I take steroids which can thin your bones.

My next post transplant clinic appt at Hosp A is on Oct 18th. That day I'll also be having a kidney function test to check my kidneys as sometimes the immunosuppressants can harm them. And then I'll be having my annual scope there in Dec. My consultant at Hosp A has also arranged for me to see a psychiatrist who is linked to the small bowel transplant team, so my first appt with them will be 15th Nov. It was originally an earlier date but they gave me a 9am appt so I changed that because it takes me an hour and a quarter to get there. That's not quite what I asked for as I actually wanted to see a psychologist for some CBT for my ME. But I'll see the psychiatrist next month and see if they might be able to refer me on to someone better suited to me.

I had my annual flu jab yesterday morn. Dad and Alf have both had bad colds this week but lucklily they cleared up. Alf had his flu jab with me but mum and dad will have to have theirs later this week because both of them went out for the day. I've managed to stay free of the cold despite them both being full of it. Think my immune system must be quite hardy despite me being immunosuppressed - I've not had a cold for 20 months!

Back in June my dad had shingles. He wasn't in pain with it though. I contacted Hosp B to ask their advice and I had to take a 3 week course of antivirals as a precaution to stop me catching shingles. That went fine and I didn't get it.

Mum has had a few health problems recently. When she went to give blood on the 5th July she was turned away because she was anaemic. This doesn't seem to have affected her but she was disappointed that she couldn't give blood. In July mum had problems with the vision in one of her eyes and was diagnosed with Posterior Vitreous Detachment. This has left her with lots of black floaters in her vision in that eye, but luckily she hasn't had any of the complications that some people get. Then last month mum suffered with severe migraines, but luckily she hasn't had any for a few weeks now. And she has also hurt her back.

I started doing my physio exercises regularly just after my last update but when I returned to my physio she wasn't very happy because I'd only been doing them for a fortnight rather than a month. So I told to continue with them and was given an appt to see her again a couple of months later. I had a few lapses from doing my physio exercises daily but did manage to do them regularly most of the time and built up the duration of time I was doing them for. When I returned to see my physio she was very pleased I'd been doing them and that I'd noticed a bit of an improvement in my ME which may or may not have been related. She was moving on to another job so discharged me but said I could return to the physio department there at Hosp H within 6 months if I needed to. She just said to continue with my exercises.

I've recently struggled to motivate myself to do my physio exercises. I thought I'd try using my Wii Fit Plus for the Wii instead but haven't been doing that either so am not doing daily exercises at the moment. I know I ought to be though :P

When I originally saw my physio, as well as her giving me the exercises to do each evening for my general fitness she also gave me some calf stretches to do as she thought that stretching my calf muscles would make them less tight and as a result should ease the pain I was getting in my heels (plantar fasciitis). I think the stretches worked a little bit, but didn't make the difference I'd been hoping for as I still find that when I go out for the day I'll have to stop walking before I get tired because my feet are so painful. When I returned to see my physio she gave me some slightly different stretches to do but they didn't seem to help. I also asked my GP about my heel pain and although he confirmed that is is plantar fasciitis, he said that nothing can be done about it.

I saw my GP about the rash I was getting under my eyes (and sometimes on the backs of my hands) after I went out in the sun wearing suncream. He said because it was always in the same place it must be caused by the sun, but he was puzzled as to how the sun was getting through to my skin as I was wearing factor 50 suncream. He gave me some cream to put on the rash when it came up to settle it down more quickly and said he'd see if there was a different factor 50 suncream I could get on prescription. I used the new cream once so far and was amazed at how quickly my rash went away. I've got a new suncream now but I used it this morn and still came out in a rash. Mum suspects the rash might be due to the sun's rays being magnified through my glasses lenses so I think I'm going to try her big sunglasses (that fit over her glasses so ought to fit over mine) and see if that helps next time it's sunny.

I'm happy the hot weather is over because that made me feel very lethargic, but now the weather is a bit chillier I'm often uncomfortably cold as I can't control my body temperature very well. I've got an electric blanket and a convection heater though :)

Recently I've had a few periods of a couple of days where I've struggled with eye ache. I spoke to my GP about this who said that he couldn't see any problems with my eyes, so I ought to get my eyes tested to make sure my prescription hadn't changed. I usually have my eyes tested annually and last had them checked in Feb, but I booked myself an eyetest for 29th Sept. In the run up to the eye test I started to suffer from more frequent headaches so was pleased I was getting my eyes checked out.

The eye test went well and I was reassured that my eyes were fine and my prescription hadn't changed. They did adjust my glasses to make them sit further up my nose, but now they've slipped back down again :P The optician confirmed my thoughts as she said that she thought my eye ache might be due to ME or it might just be one of those things. At least it's nothing to worry about. I've not had any problems with it over the last few weeks.

I'm still struggling with headaches and it seems like they might be related to eye strain as they usually come on in the evenings, but I'm not sure. I think I need to try drinking more in case it is related to dehydration. I've also been continuing to feel quite ill with the artificial lighting in some shops.

I did look into getting some sunglasses as I thought that they might be a worthwhile investment now my prescription has finally stopped changing and I thought they might help in artificial lights and possibly with the rash I get under my eyes too. But because of my complicated prescription I was quoted between £170 and £200 for a pair of prescription sunglasses. So I decided against it for this summer and thought I'd think about it again next year.

Abdominal pains, gynae problems and orthodontics

I spent a week alone in June when the rest of my family went to Glastonbury Festival. Unfortunately over that weekend they were away I had horrendous abdominal pains that were constant and agonising. I didn't seek medical advice about them as I didn't want to be admitted to a new hospital (Hosp A, where I'd never stayed overnight before) while my parents were away. The pain went away completely after a couple of days and didn't return. I don't know if that was related to any of my medical problems or just one of those things. My consultant thought it was probably gastro related.

I can't remember exactly what was happening when I last posted, but my consultant at Hosp A had prescribed me two medications to try taking for my abdominal pains. Spasmonal was an anti-spasmodic that I had to take before every meal. That didn't help the pains at all. Amitriptyline makes the nerves less sensitive to pain and I had to take it every evening. That seemed to work well for a couple of weeks but then the effect wore off. When I told my consultant about the results of trialling those medications he was fine that I'd stopped taking Spasmonal and suggested I increased the dose of my Amitriptyline from 10mg daily to 20mg daily in the hope that that would help. He said he'd even be happy for me to take up to 50mg if I needed to. I've also started taking a fibre supplement most days (it's supposed to be everyday, but I don't remember everyday). Either one or both of those seem to have done the trick and my abdominal pains are now much more manageable. I usually just get tummy ache now rather than a pain, although I do still get bad days and can't work out why.

It was hoped that the Amitriptyline would help my sleep and nocturnalism too but it hasn't. I made a big effort in Aug to normalise my sleep pattern and kept it up for over a month, but it was such a struggle fighting my body. I'd hoped that if I went to bed earlier and got up earlier then my productive period which used to come from about 11pm and last to the early hours of the morn would come earlier, but it didn't, I just lost it completely. Then my sleep pattern started to slip a bit and I can't motivate myself to correct it again. I did have to temporarily though (although that was actually more a case of me going to bed late and being awoken early) as our next door neighbours had builders making a din every day from 8am til 5pm for over 3 weeks! My sleep pattern isn't as bad as it used to be, but it's not the same as 'normal' people.

I really can't remember how much about this particular health problem I've mentioned before, so sorry if I'm repeating myself. Before my transplant my periods stopped because I was so ill. Just after they returned when I was recovering after my transplant (so summer 2007), I was admitted to hospital on a few occasions suffering with intense abdominal pain. I was given IV Morphine for the pain each time. Lots of explanations were suggested from pancreatitis (which I'd had immediately post transplant), to adhesions (as a result of all my operations). In Dec 2007 I had an ultrasound scan which showed that I had an ovarian cyst. It was suggested that taking the pill would stop the monthly pain but because of my past liver problems my consultant wasn't happy for me to have a pill containing oestrogen, so I was started on a progesterone only pill instead. That kept the pain away. Unfortunately that pill caused my periods to become very heavy and irregular.

The gynaecologist who originally diagnosed me and started me on the pill hadn't offered me any follow up so I was referred to see a gynaecologist at Hosp A. On 31st Aug I saw her for the second time and together we came up with a plan of action. I was supposed to see her about 12 weeks before that but because my older brother, Chris, let me down with a lift very last minute, I had to cancel that appt and reschedule another one, but the waiting list was 12 weeks. The plan we came up with was that I'd have an ultrasound scan to see how the cyst was doing. If it had shrunk or disappeared then I'd come off the pill and see if my periods settled down on my own. I didn't want to just stop the pill without having a scan because I was scared of the pain returning. I also had some bloods taken to check my hormone levels. I had a pelvic ultrasound on 27th Sept and managed to confuse all the doctors because they couldn't work out what was what in my anatomy :P Unfortunately though that scan showed that I had cysts. My gynaecologist has requested a second scan on 5th Nov and another blood test which I think I'll be having next week. Then she'll arrange me an appt to discuss the results of the tests with her. I'm confident that she'll be able to come up with a good plan of action because she really seems to know her stuff.

I had my braces tightened at an orthodontist appt on 4th June and then again on 16th July. My braces are supposed to be tightened every 6 to 8 weeks but when I tried to make my next appt I was told that I wouldn't be able to be seen for another 10 weeks and then later I received a letter cancelling that appt and rescheduling it for 3 weeks later, meaning a 13 week gap between appts. I wasn't very happy with that because the less frequent the tightenings, the longer I'll have to have the braces for. However on 18th July my braces broke so I returned to the orthodontist on 22nd July for an emergency appt to get them repaired. I then had a good spell with them until they broke again on 21st Sept, so I had another emergency appt on 23rd Sept to have them fixed. I've got a proper appt coming up on 14th Oct to have them tightened. I'm going to ask my orthodontist again about when I'll be able to have them off because it clearly won't be Oct like he said last time I saw him. I suspect it'll be a while off yet because my gaps still haven't fully closed. I find my braces so frustrating though, as well as all the emergency appts to get them fixed when they break (it's a 60 mile round trip to the hospital), they also cut the inside of my mouth a lot which can be very painful.

I was seeing a hygienist at Hosp A but she didn't work the same days as my orthodontist so we'd have to make another 60 mile round trip there each time to see her. My mum told my orthodontist how she wasn't happy to do that, so he said I could find a more local hygienist, but he did want me to continue to see one while I had my braces. When I had a dental check-up locally this summer (which went fine) we enquired about seeing the hygienist there but she's private and charges £42 for half an hour! I wasn't happy to pay that as the one I was seeing at Hosp A was an NHS one, so we need to see if we can find an NHS one closer to home.

I'm back! Plus update on transition and my eating

Hello again, I'm back! Sorry for neglecting my blog for so long. Initially I didn't manage to update for a while due to being quite busy and then because a while had passed since my last post, updating just seemed too daunting :P Anyway, I'm back now and will try to blog more regularly :) I hope I've not lost all my followers in my absence. I can't go in to detail about everything that has happened in the last 5 months (I've not blogged properly since May) or you'd be here for ages, but I need to do some updating so future posts make sense. I'm going to try to do a small-ish update daily until I'm up to date enough to continue blogging as I used to.

I got a shock at the start of July when my consultant from Hosp B dropped a bombshell and told me that he'd decided not to transition his patients to Hosp A but instead to transition them to another hospital, Hosp Q. I was confused by this decision because Hosp Q don't even do small bowel transplants! But they're situated in the same city as Hosp B so the team there will continue to have input if their patients transition to Hosp Q. I didn't know what to do because I had a lot of faith in my Hosp B consultant and it seemed like he thought that a different hospital would be better for his patients. But after emailing my Hosp B with some questions, thinking a lot about it and attending some appts at Hosp A I decided to continue to transition to there, regardless of what other Hosp B patients would do in the future.

A few months ago Hosp A took over the organising of my 3 monthly blood tests. The transplant co-ordinator there, S, suggested my bloods were changed to 2 monthly but I insisted they stay 3 monthly because the results are all stable so I don't see any need for them to be more frequent.

On 27th May and 1st Sept I had my bloods done at Hosp H like I usually do, but this time the bloods letter was supplied by Hosp A rather than Hosp B. Both times my bloods went very smoothly as the best phlebotomist always does my bloods now, rather than less experienced phlebs trying and failing first and then having to call her in. They were done in the morning before I take my Tac (an antirejection drug) so the level of that could be checked without me having to delay or miss my Tac dose. The blood to check for my Tac level (the level of the immunosuppressant in my blood) and my CMV level (not entirely sure what that is, but Hosp A like to check it regularly) can't be processed at Hosp H so we have to post them to Hosp A. I used to post my Tac blood to Hosp B in a little cardboard box and that always worked fine. But we now have to post my Tac blood and CMV blood to Hosp A in a big-ish blue plastic box that is one use only. It's very troublesome to close and both times 2 phlebs attempted it and it was eventually closed by being banged on the floor very hard. Luckily the blood bottles weren't damaged! The second time we only put one bottle in the box rather than 2 (I don't think the bloods letter was clear) so that was sent to be processed for my CMV level and I had to have more blood taken on 29th Sept to check my Tac level. All results from the blood tests were normal :)

I have now completed my transition from Hosp B to Hosp A! All of my care is now under Hosp A and I won't be seen at Hosp B any more. I'm still not completely happy with everything at Hosp A but after lots of phone calls, emails and a couple of appts I'm now more comfortable with the team there and hopefully the rest of the little kinks will be ironed out in time. I'm much happier with the communication with the team there now. The teleconference never happened in the end because I spoke to the team at Hosp A and the team at Hosp B separately and because the teleconference had to be cancelled and rearranged for quite a few weeks later, by that time I was confident enough with the transition not to need it.

Hopefully things will be more straightforward now I'm just under Hosp A, as when I was under both Hosp A and Hosp B they got their wires crossed a lot and never knew who was organising what so they'd both request a full set of bloods at different times etc.

I used to get my Tac delivered through a homecare company while I was under Hosp B but now I'm under Hosp A I have to get it from my GP instead. Luckily my GP has no problems with that, so that should all work out fine. I was going to the GP surgery a couple of times each week to collect my medications as I was running out of them all at different times throughout the month. I've spoken to the dispensers there and I've been allowed to order all my medications at once, once a month now, so hopefully that'll get things in sync and mean I don't need to make as many trips there.

I wasn't able to see my dietician at my last couple of clinic appts, but I caught up with her when I was at Hosp A for another appt. I find her the easiest to talk to out of all the team at Hosp A and have already established a good relationship with her. She's happy to talk via email or face-to-face whenever I need her.

When I last updated in May I'd just been told I could stop having the high calorie puddings and since then my weight has continued to do well. When I stopped the high calorie puddings I think my weight was about 53/54kg which was a little bit above my target weight of 52kg (that my dietician at Hosp B set for me) so I was hoping it'd remain stable. To my amazement I actually managed to put on weight for the first time in my life without any artificial feeds or high calorie supplements! My weight got as high as 55.5kg which I was very happy with but I decided I didn't really want it to get any higher than that. My dietician said she'd like it to stay around 55kg. So rather than cutting any food out of my diet I began swapping some of the full fat milk I was drinking to semi skimmed milk and hoped that would enable me to maintain my weight. I'm now weighing myself fortnightly and when I last weighed myself on 6th Oct my weight was 55.1kg. Although I'm weighing myself fortnightly, my dietician only wants to know my weight monthly because I'm doing so well :)

The pump I used for enteral feeding has now been collected by the company who supplied it. When that went it was the first time in over 19 years (since I was 6 months old) that we'd not had a pump of some kind in the house :D

I go through phases where I find eating very difficult, but at the moment things aren't too bad. I've had some mild nausea but it hasn't got in the way too much. I've been trying to be a bit more adventurous with trying new foods. I picked up a lovely vegetarian sushi selection in Sainsbury last week which I had for lunch instead of my usual sandwiches :) And just yesterday I had a vegetarian and chicken sushi selection from Tesco. I also discovered I like chicken stuffing sandwiches which was good for when we're out and about because nowhere sells my favourite marmite sandwiches ;) But then I realised that the chicken stuffing sandwiches are probably made with battery chicken so I stopped eating those. I'm not sure that avoiding battery meat when we're out is going to be a viable option for me though because I don't like many other sandwich fillings. Using battery chicken also spoiled a nice family meal out to an Indian restaurant a couple of months ago because they didn't have any options with free range chicken, so me and mum went veggie for the night. At the end of the meal we tried to complain to the staff but explaining the difference between free range chicken and battery chicken to someone who doesn't speak much English is quite a challenge, so my mum ended up pretending to be a chicken to try to get the message across, hehe :P

My weekend

On Fri I felt a bit more down than usual in the morning but I was ok. I discovered that my slippers were about to fall apart which is frustrating because I've not had them very long. I think that my feet are too wide for them so they've burst the stitches. I definitely need to do a clothes shop soon because all my clothes seem to be falling apart! That morn I had a chat to my parents about my rent and it's been increased slightly but the monthly amount is still manageable out of my benefits money.

That aft me and mum were going to go and see my nan, but I had bad tummy pains again so decided to stay at home while my mum went out. I don't know why my tummy pains have got a lot worse over the last few days. I did miss one dose of Amitriptyline but wouldn't have thought that would cause this. I'm only on a very small dose of Amitriptyline so am going to ask my Hosp A consultant when I see him in a couple of weeks if increasing my dose might help. My next clinic is now just 2 and a half weeks away and I'm still not happy about completing my transition then, so will let the team there know that when I see them. I'm still waiting to hear back from S about my questions relating to Tac bloods.

I was sorry to miss seeing my nan on Fri so hopefully I'll see her at some point this week. My tummy soon felt a bit better so while mum was out I watched a DVD called Jumper which I enjoyed more than I expected.

Then I heard that Ellie Goulding had announced dates for a UK tour in Oct/Nov and would be coming to a seated venue near me. I saw her supporting Little Boots last Oct but didn't know her or her music then so would love to see her again now I know more of her songs. The tickets go on pre-sale on Wed morn so I'm going to try to get some then. I'm waiting to hear from Claire about whether she'll be free to come with me and mum.

On Fri I really struggled with eating my tea. Generally I'm finding eating a bit easier at the mo but sometimes I do really struggle with it. That eve I really enjoyed watching the penultimate episode of Ashes to Ashes with my parents. I can't wait for the final episode on Fri but also really don't want it to end. Before I went to bed that night I listened to Diana Vickers' album, Songs from the Tainted Cherry Tree, and Little Boots' album, Hands. I've been listening to Diana Vickers' album a lot but that was the first time I'd listened to Little Boots' album in a while so I enjoyed that.

I didn't feel too good on Sat but I didn't feel too ill. I really struggled to get up in the morn, I was more tired than usual, my feet ached all day (not the pain I usually get but just lots of aching like I'd done too much walking the previous day, but I hadn't) and I felt quite lightheaded at one point.

Something I struggle with at the moment is wearing clean clothes. They often feel very uncomfortable for an hour or two when I first put them on, especially my jeans. I thought this was just me being weird but I've recently discovered that having oversensitive skin can actually be a symptom of ME. I don't think there's anything I can do about it though. I also find that finding new clothes that are comfortable is very difficult so I'm not looking forward to having to replace all my clothes that are starting to fall apart.

That morn I watched Embarrassing Bodies: Kids on 4OD. I was very excited to receive a text as I thought that meant my mobile was working again, but it wasn't. I had a little look at my DLA forms and I relieved that they don't look too hard to fill out as it's mostly just ticking boxes. Not sure how I fit into their categories though, so I suspect I might end up losing my DLA. I've decided that I'm going to try to get them completed and sent off before my parents and brother head off to Glastonbury in just over a month. I just need to find a time when dad can have a look at them with me.

While I wasn't feeling so good I listened to The Family Jewels by Marina and the Diamonds on my iPod. Then Chris popped round. It was nice to see him and he stayed for tea. He's going to try a different job so he was telling us about that. He currently helps to manage a restaurant that is attached to a hotel and he's always worked in bar work or catering (not actually cooking, but managing). However he's decided to go across to the hotel and work there with administration, finances and working at the reception etc. The pay is the same and it's the same hours though at more sociable times. He's interested to learn more about how the hotel works and it'll look good on his CV too. He's starting a few hotel shifts this week and then increasing them over the next couple of weeks. Hopefully it'll all go well for him. His car's broken again and isn't reparable this time. That's what happens if you buy cars from eBay! Chris also had a fiddle with my phone but had no idea what the problem was. Mum remembered that there is a Nokia repair place nearer than a T-Mobile shop so we thought about taking my phone in to be looked at there.

On Sat eve I enjoyed watching Doctor Who with my family. I thought Sat's episode was really good and very original. After that I watched the music channels for a little while and then a good film on BBC3 called Flightplan. That eve I had tummy ache, which isn't a time I usually have tummy ache. This was just an ache though rather than a pain so I managed to get to sleep ok with it.

On Sun I got up about 2/3 hours earlier than I usually would and with my parents I headed out to the annual carboot sale at my old secondary school. I was quite worried about bumping into people I knew there, but I only saw 2 and managed to avoid them seeing me :P At the carboot sale I picked up a couple of things for Claire (an old Take That annual and a Tardis tin), 3 books (the Script book of Juno because I love the film, the novel Stardust which I hope to read at some point because I recently enjoyed watching the film and a children's book by Malorie Blackman which I used to enjoy reading) and 4 DVDs (Beaches, The Magic Bubble, Down with Love and Aardman Classics). When I met up with my parents at the end mum showed me a Nokia 3310 that she'd picked up to me. I've been using it since then and it's fantastic to be able to phone and text again :D The only thing I miss with using an older phone is the camera, but apart from that it does everything I need and should last me til Chris passes his iPhone onto me at the end of Sept.

I felt a bit odd that afternoon which I think was probably due to getting up much earlier than usual. And I also had more dizzy spells than I had been having for the past week or two. Hopefully my dizziness will clear up completely soon, fingers crossed. When I got home from the carboot sale I was really pleased to hear that Tori had received her transplant call. Since then she's had her transplant and it sounds like she's been making really good progress. I don't know Tori personally but have been following her blog for a while now.

I enjoyed doing a couple of little jigsaws and then sorted through the HDR and deleted some recordings. While I was doing that I rewatched the first part of the first episode of the current series of Doctor Who with mum, watched last week's Friday Night with Jonathan Ross (to see Alexandra Burke being interviewed and Ellie Goulding performing) and watched the music channels for a short while. Then I put out all my tablets for the week and made a note of which ones I was running short of.

On Sun eve I rewatched Mamma Mia with my mum. We quite enjoyed watching it together but I don't think it's as brilliant as everyone seems to say it is - it's so cheesy and some of the songs have no relevance at all to the plot (especially The Winner Takes it All which had me and mum in fits of the giggles much to dad's bemusement!).

Later that eve I felt really down about everything and kept crying. I know it's silly as I've not really got anything to be upset about and I know that my health and my life is much better than lots of people I know, so I shouldn't get upset, but you know how it is sometimes.

To try to cheer myself up after that I decided to try out a new Wii game called Okami which had some really good reviews. It looked great but unfortunately the game requires drawing lines with the Wiimote and my hands aren't steady enough to do that so I can't play the game, which is very disappointing. Before I went to sleep I started listening to the latest ONM podcast.

This morn I helped mum out with some errands around the village. We went to the surgery (to drop off a prescription for me and pick up mum's tabs), the library (for mum to do some cleaning and I picked up a Scoubidou book and a DVD), the post box (to post back one of my rental DVDs), a shop (to buy some croissants, milk etc) and another shop (to buy some bread).

While me and mum had lunch we watched the music channels and part of a stand up comedy programme by Dylan Moran. I was also given a link on Facebook to a letter written by Nick Clegg about ME which you can view here. I was very impressed with it.

This aft I had a bit of a meltdown. I don't really want to go into detail about it but I just got really really upset for no real reason and ended up going back to bed for a few hours. I don't know what's up with me at the mo.

This eve I listened to Ellie Goulding being interviewed on a radio programme which you can listen to here. After tea I ate my final high calorie pudding, yay! :D I'm now going to see how my weight goes without having one high calorie pudding each eve. I'll weigh myself tomorrow and then hopefully when I weigh myself again 2 weeks later my weight won't have dropped. I've just watched the 2nd part of Wormwood Scrubs and the 3rd episode of Bizarre ER. I'm currently watching The Graham Norton Show because Ruth Jones is being interviewed and Katie Melua will be performing The Flood later. I'm never been a Katie Melua fan before, but I do like The Flood. I've just been laughing aloud at them talking about accents, very funny.

LLTGL are currently looking for opinions on their new t-shirt designs so please pop over to their blog here and leave a comment about which design you like the best.

A busy few days

My older brother Chris has always been very unreliable. He was going to come round to see us on Tue but then on Tue when I phoned him he said he'd come round the next day instead. He didn't show on Wed either. I'm always surprised when he doesn't turn up, but I really shouldn't be after all this time! :P

On Sun night I had another dizzy spell so I got a GP appt for the following morn :) After looking in my ears, making me move my head and follow his finger etc he told me that I had viral labyrinthitis. I was so relieved to hear that it's nothing to worry about and isn't related to any of my other medical problems, phew! Apparently it occurs when a mild virus affects one of the balance centres which slows the signals down so they're not in sync any more. And that means that when you turn your head you feel dizzy. He was very surprised I'd not looked my symptoms up on the Internet - I'd never do that, I'm sure that would scare me to death! :P There is no cure but medicines can be given for the symptoms if necessary. Sometimes it goes withing 24 hours, sometimes it takes a week or so. But he thought mine was definitely on the way out, so it should go completely soon. I've had a few more dizzy spells since though, so I really hope it disappears soon. My GP also said that sometimes it reoccurs a second time so I've got to keep an eye out for that but if it does, the second time usually isn't as bad as the first. And while I was there we also reviewed all my medications.

On Mon aft me and mum went to see my nan. I took her a copy of The Family Jewels CD by Marina and the Diamonds and taught her how to play that through her laptop :) I also installed a new printer cartridge for her. We then put the music on in the background and me and mum helped my nan sort through all her books. She didn't get rid of many though and wanted to keep loads that me and mum disagreed with her about :P

While I was at my nan's I was disappointed to put my finger through my jeans, they've got a small hole in the back :( I hate shopping for clothes and always struggle to find ones that fit well and are comfortable so I was very happy to find 2 pairs of perfect jeans a year or two ago, but now one pair has a hole. I'm sure I'll put off shopping for some more for as long as I possibly can but I'll have to do it soon. The cuffs of my favourite hooded jacket and poloneck are starting to fall apart too. And while I was at my nan's I discovered holes in the socks I was wearing, but I don't mind about that - socks are easy to buy and I have plenty of pairs.

After we got back from my nan's I sent off an application for a new CEA card (the card that allows a carer into the cinema with me for free because I receive DLA) because they only last a year and my old one is about to expire. I thought I'd have to try to sort out a passport sized photo (I hate having my photo taken) but luckily I found one tucked away, phew!

As you'll probably know from reading my past blog updates there is a fantastic charity called AYME which supports young people with ME and has been invaluable to me since I was diagnosed with ME last Aug, especially the message boards where I can talk to other people who know what I'm going through. A couple of weeks ago a post was put up on the message boards saying they were looking to recruit some new voluntary peer support moderators (PSMs). The PSMs keep the board running smoothly, support users, provide information in response to posts and remove any inappropriate messages etc. Because I'm already very active on the boards I really liked the sound of this but didn't know whether to apply or not because I tend to commit to too much and then can't keep up with everything. But the day before the deadline I decided to go for it. I'll let you know when I hear anything.

On Mon eve I watched Young, Austistic and Stagestruck and the first 2 episodes of the new series of Bizarre ER on TV. I also watched 2 episodes of the second series of Outnumbered from my DVD.

On Tue in the post I received a bank statement and my new phone battery. Unfortunately replacing the battery in my phone hasn't fixed the problems. Although the new battery lasts longer than the previous battery did it still runs down in about a day. And I still can't send or receive texts or phone calls. Grrrr. It's so frustrating not having a working mobile. I tried swapping my SIM with mum's SIM to find out whether the problem was with my SIM or the phone itself. However my SIM worked in mum's phone and mum's SIM worked in my phone, but my SIM doesn't work in my phone - how odd! I think my best bet would be to go into a T-Mobile shop and ask for their advice, but the nearest one is in the city and I don't have any plans to go there at the mo and it's a bit far to ask mum to go just for that. I thought I'd try using an old phone for now so found 2 old Nokia phones in the house. Unfortunately neither of them work so I've put out a request on Facebook asking if any of my friends have a phone I can borrow until I get my phone looked at at a T-Mobile shop. It might be completely broken, but I'm not sure yet if it's going to be fixable or not. And I don't want to buy a new phone because I'm getting Chris' iPhone in Sept so I guess if my phone isn't fixable I can just use an old basic phone til then.

I didn't do much on Tue but did a few odd jobs like going to the local shop for the new Radio Times and sorting the dishwasher and washing out for mum because she was at work. I watched the music channels for a while during the day and a programme I'd recorded the previous night about a prison called Wormwood Scrubs.

I received a reply from my dietician at Hosp A saying that she's happy for me to stop the high calorie puddings :) I'm currently finishing up the ones I've got (I think I'll have my last one on Mon eve) and we'll then see how my weight goes without them. I think I'll be fine without them, but I'll let you know how it goes.

I heard that the page that me and Emma wrote for Transplant Kids has been added to the main website :) You can find it by going to the main TK page here, clicking on 'info' and then clicking on the red box on the right side of the page just before half way down. Or you can go directly to it by clicking here.

After my braces behaving so well for a while I wasn't happy on Tue when I realised that one of the brackets was cutting my lip. I put some wax on the offending bracket overnight to protect my lip and it's been fine since then :)

On Tue eve I watched Children's Hospital and Children's Emergency on TV. I also watched the last 3 episodes of the second series of Outnumbered plus all the extra features from my DVD.

That night I forgot to take my Amitriptyline for the first time. I don't think it makes any difference to my sleeping so wasn't worried there but was a bit fearful of getting more tummy pains the next day. I did get some the yesterday but they didn't last too long and weren't too painful so I think the Amitriptyline has probably built up a bit in my body. When I had those tummy pains I realised they were the first I'd had for a few days :)

Yesterday (Wed) aft I went into town with mum. While I was there I bought Sonic and Sega All-Stars Racing for the Wii (which was released down from £30 to £20 in the GAME sale) and Super Bust-A-Move for the PS2 (which was 99p in Cash Converters).

After that I headed to my physio appt. My physio had a look at my feet and my legs and I had to do some walking for her. She said that she thinks that the pain I'm getting in my heels isn't being caused by a problem with my feet because I'm not flat footed (my GP said I was, but I trust her opinions more in that area) but the muscles down the backs of my legs and feet are tight which could be causing the pain because my feet have to compensate for it when I walk. So I've got some calf stretches to do which should help, fingers crossed. She also gave me some general conditioning exercises to do at least 3 times a week. That'll be a challenge for me because I've never stuck at doing physio exercises before, but I'll give it a try. She suggested I set a goal to try to gradually build up the length of time that I do the exercises for and maybe set a goal to try to gradually work towards about being able to walk for a certain length of time. She wants to hear my goals when I next see her in 5 weeks time. She also told me that a colleague of hers had told her about a local ME clinic so she wondered if I'd heard of it. That's where I was diagnosed so I told her about my experiences with them - they couldn't offer me any more than a diagnosis and one appt with an occupational therapist due to a lack of funding. She suggested I should phone them to ask if they can offer me anything else (that's already on my to-do list) because the physio dept I'm being seen at is mainly for pain.

After my physio appt me and mum went to see my nan and I taught her the basics of how to use her new digital camera. And she insisted on paying for the Wii game I'd just bought because I do so much to help her! I did say that I couldn't accept the money but she wasn't having any of it, hehe.

When we got home I had an email from S (the transplant co-ordinator at Hosp A) saying she's spoken to the phlebotomist I see at Hosp H (my local hosp) for my bloods and that things should work similarly when I'm under Hosp A. However they don't use Tac kits so I'll have to have Tac bloods done with the rest of my bloods too. They'll send me a bloods letter before each clinic so my consultant will have the results by then. Because I have to have Tac bloods done at the hosp I'll have to delay taking my Tac but if I get my bloods done early I shouldn't have to delay it too much and that'll be fine because that's what the rest of their patients have to do. Because Hosp H don't process Tac bloods I'll then have to post that to Hosp A (apparently S is going to provide me with a box to send the sample in) to be processed there.

I chatted to my parents about this over tea and I was a bit concerned that S hadn't thought this through, so I emailed her with some questions about my Tac bloods that eve. If I've got to post the Tac to Hosp A why can't I take the blood via a fingerprick at home? I've got loads of lancets (finger prickers) so will only need the bottles. I need to find out how much blood they need too. If I can do it that way I won't have to delay taking my Tac. If taking Tac is delayed the levels in the blood drop and that creates more rejection risks. The doctors make out that delaying Tac for a few hours to take bloods isn't risky, but I've never done that (because I've always done my bloods at home via a fingerprick) and I've also never had rejection (98% of all small bowel transplant rejections do in the first 2 years after transplant). I suspect there may be a link there so don't want to start delaying Tac doses if it can be avoided. I also need to check that Hosp H have the right Tac bottles because when I ran out of the ones that Hosp B gave me I asked for one at Hosp H but they didn't have them. Maybe Hosp B and Hosp A use different Tac bottles. I also need to know how S is going to get the box for posting the Tac to me because I'll need that before the clinic. Hopefully S will reply soon.

I've been wanting to speak to my parents about all my other transition concerns for a while because my transition date (7th June) is getting closer and I'm really not happy about it. I asked to be told how things would work when I was completely under Hosp A but I've not been given as much info as I'd like and I'd like to be able to spot and then act on potential problems now, rather than when they actually occur. And the team at Hosp A (with the exception of the dietican) haven't proven themselves at being good at communicating with me either. Hopefully I'll be able to talk to my parents about it at the weekend.

Alf is trying to get stronger and beef himself up because he's really skinny. His favourite method of doing this is by standing at the bottom of the stairs, grabbing the landing floor and pulling himself up. I know this probably doesn't make much sense, it's hard to describe :P The other day Alf ordered himself something from Amazon that you attach to a doorway and then it gives you a bar that you can do chin-up type things on. Again this probably makes no sense, but it looks like this. It arrived in the post yesterday and he's really pleased with it.

Yesterday eve I watched the first episode of Junior Apprentice, Embarrassing Bodies: Kids, Lord Sugar being interviewed on Fri Night with Jonathan Ross and Autistic Driving School. Unfortunately our Internet was playing up so watching Embarrassing Bodies (a 45min programme) online took me 90mins and watching Autistic Driving School (a 60min programme) also took me 90mins!

Today (Thur) I went into town and my tummy pains were very bad. Luckily they eased off in time for me to go into Barnardo's to do an hour of volunteering. I'm trying to stick at it but it's so boring and monotonous. Mum popped in to see me during my hour of volunteering today because she was trying to avoid being spotted by someone she knew on the high street :P She'd not seen me volunteering before and couldn't believe how dull what I was doing was! There was only the grumpy lady from last week in and she didn't talk to me. Mum told me later that she hadn't been busy with customers, she'd just been sitting in the front of the shop reading her book - so she could have talked to me! So I just stood and hung clothes up for an hour. I really don't know what to do now, I don't enjoy it but feel like I'm doing something worthwhile and it's good to have something to do outside the house, so I feel like I ought to stick at it. I don't know if I can though.

When I'd finished volunteering I met mum in a cafe where we had drinks. I then bought some presents for a friend who's birthday is at the end of May and I bought myself a few packets of my favourite biscuits from M&S ;)

This eve I made a start on planning the organ donation talk I'm going to give to a group of Claire's students next Wed. I've not done much work on it yet but know have a rough outline so that's a good start :)

I also spoke to my friend Het on FB chat. She lives out of the nearest city in another direction so we don't see each other very often (it can only usually happen if I'm feeling up to going into the city and she's got a free day, which isn't very often!) but her study leave is starting soon (she's in year 12 at sixth form), so she's got some free time and wants to come round and see me. She's got a moped so is going to drive here and she's happy to do that even though the journey will take her about 45mins. It's really lovely to hear from someone (apart from Claire or Lizzy) who wants to see me and doesn't need me to do all the chasing and planning to make it happen :) She's going to be in touch again in a couple of weeks once she's got some exams out the way, so hopefully we'll be able to choose a day then.

I had fun trying out Sonic & Sega All-Stars Racing but found it quite tiring. And I enjoyed watching the latest episode of Outnumbered on TV.

While I've been writing this up I've listened to Diana Vickers' album, Songs From The Tainted Cherry Tree, on Spotify and am now listening to Pixie Lott's Album, Turn It Up, on iTunes. I found an interesting interview with Diana Vickers on the Internet which you can read here. I also found this interesting video on the Internet that goes behind the scenes of Ellie Goulding's latest music video.

I found out on the Internet that Selfridges in London have allowed 10 music artists to design a window display about one of their songs or albums. Marina did one based on I Am Not A Robot, so I had a look at the photos of that on the Internet. You can see more about the window displays including photos here.

I'm sorry this has ended up so long, I didn't expect it to be. I probably ought to try to write less but I find that so hard! :P My blog is now completely up to date for the first time in over a month :D

M.E. Awareness Week 8th - 16th May 2010

This week (8th - 16th May 2010) is ME Awareness Week and tomorrow (12th May) is ME Awareness Day. Little is known about ME - no-one knows what causes it and there is no cure. However there are techniques such as pacing, graded exercise therapy and cognitive behavioural therapy which can help some people to manage their ME. Many people don't understand about ME which leads to lots of prejudice against those of us which suffer from it (250,000 people in the UK alone). Please help to spread the word this week by putting something on your blog, Twitter or Facebook page. Thanks.

ME affects all sufferers differently - they have different symptoms and different severities of those symptoms. You can see a scale of ME severity here. I'm lucky that I only suffer from mild ME, but lots of people suffer very severely and have to spend time lying flat in bed in silence and in the dark and have to be fed by tube. A girl I've met through AYME called Vikki made this video about severe ME so please have a look.

I'm sure you know how ME affects me from reading my blog, so I thought I'd give you some links to videos made by people I know who have ME where they talk about ME affects them. People have different symptoms and I know I'm lucky not to be affected by some of the most disabling ones such as constant severe pain and muscle weakness causing difficulty walking. You can see Daisy's video here and Chlay's video here. You might need to turn the volume on your computer up to hear some of these videos.

To find out more about ME there are some medical information sheets on AYME here and this video is really informative. I've printed out this sheet to give to some of my friends to help them understand how ME affects me, but some people prefer to explain how ME affects them using The Spoon Theory. The Spoon Theory was originally written to explain Lupus but it works well to explain ME too. I was pointed to this on the Internet which was written by an ME sufferer to help explain ME to non-sufferers.

AYME is a charity which has been a huge support to me since I was diagnosed with ME last summer. It supports young people under the age of 26 who suffer from ME and provides a supportive forum, bimonthly magazines and special services for those severely affected by ME.

I know I've included lots of links to things to watch and read in this blog entry. Please take the time to watch the videos and read the documents to better understand how disabling ME can be and help to raise awareness of it. Thanks.

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

Getting up to date with April - part 7 (more day to day stuff)

I decided on Tue 20th that I would let myself buy some more DVD boxsets if my total spending (not including rent, Tesco DVD rental and magazine subscription - my regular monthly payments) in April didn't exceed an amount that I set then based on what I'd spent so far during April. I thought that I'd let myself buy some DVD boxsets to take my spending that month up to the amount I set, but I ended up spending only £5 less than that amount which wasn't enough for a DVD boxset that I wanted. However I had had some unexpected outgoings towards the end of April including Alf choosing to cash his birthday IOU for an iPod charger so I decided to allow myself to spend a bit more than £5 on a DVD. I struggled to choose between Gavin and Stacey series 2 and 3 or Outnumbered series 2 and very nearly bought them all at once. But on Sun 2nd I decided on Outnumbered and ordered it that night. I'll get the Gavin and Stacey DVDs at another point, maybe at the end of this month/start of next month if I don't spend too much this month (I might aim to spend less than last month).

Mon 3rd May was Bank Holiday Mon so there were some local carboot sales on that me and my parents decided to have a look at. First we went to a one off carboot sale in a pub carpark in a neighbouring village. There I bought a DVD called In America DVD for 50p, 7 DVDs that had been free with newspapers for a total of £1 and 15 CD cases for £1. It was very chilly while we were looking round and there were some light showers too so I left my parents still looking round and went back to sit in the car round the corner to warm up. While I was sitting in the car another shower started up which got quite heavy and then it started hailing. I was very smug sitting all warm and dry in the car. Dad sensibly found some shelter in the pub car park til the hail eased but mum decided to run back to the car in it. She got soaked!

We then went back home and dropped dad off because he'd decided the weather wasn't good enough to go to another carboot sale. Mum changed out of her wet clothes, we both wrapped up a bit warmer and then we headed out to the carboot sale we usually go to. There were not as many stalls there as there usually is and the DVDs were all £2 each rather than £1 each so I didn't buy anything. Mum picked up a few things though including a weird thing that moos like a cow! On the way home we called in to visit nan briefly and give her back her mobile phone that we'd sorted out for her. The phone in her new flat wasn't going to be reconnected til Wed so it was important that she could use her mobile til then.

On Tue 4th May I weighed myself like I'm now doing fortnightly. It was also my monthly weight to email my dieticians with. My weight was 54.3kg - so up 0.6kg on the previous fortnight and up a total of 1kg in a month. Both my dieticians were very impressed and are happy for me to keep weighing myself and contacting them monthly. I never thought I'd say this, but I don't really want to put any more weight on now. If my weight is up again next month then I'm going to ask my dieticians if I can stop my high calorie puddings because I don't really like them.

That morn I walked to the post office and the local shop and also walked round to the surgery to drop in a prescription for me. That aft I had to return to the local shop when mum discovered that she'd run out of washing liquid for the washing machine. When mum got back from work at the library she showed me her first knitting needle injury - somehow a knitting needle had attacked her leg through her bag and her jeans and had left a visible scratch. Her leg is fine now though.

That evening I went to another meeting of the teenage discussion group in the village. V wasn't there so it was just A and B who lead it, me, K and M. The discussion on Tue eve was very religious - yawn! We did have some interesting discussion, but I'm not sure how we got onto talking about whether knitting is divine or not?!?! Although I'm a very private person about my health I don't mind mentioning it when it's my choice and in my control, so I brought it into the conversation because I felt it was relevant. I started off by saying "I don't know how much you know [because I didn't know if K or M knew anything about my medical history] but I had a transplant a few years ago" I know A knows about it all because she knows my mum and I assumed A had told B everything. So I was really surprised when B said that she didn't know that! We had an interesting discussion about politics at the end. K isn't 18 until the summer so can't vote yet, but the rest of us could. Me, A and B all said that we would be voting Lib Dems and proceeded to discuss all the parties. M kept very quiet. He's very posh, privately educated and quite stuck up so I assumed his quietness was because he's a Conservative supporter! They were all talking about the different politicians they've had coming to their doors to try to swing their votes, but we've not had any of them this year which is probably because we've got a Lib Dems sign in our garden :)

Yesterday (Wed 5th May) I emailed S (the transplant co-ordinator at Hosp A) again because it was 6 weeks since she'd promised me an email and I'd still not heard anything. In this email I just asked if she could please reply to my email from March 22nd as she said she would in her email dated March 23rd. She replied very quickly saying that she'd not forgotten me but she'd been off work for a while. I've been promised a full reply by the end of the week so hopefully I will get that. Only 5 weeks to go til my transition is due to be completed and I'm still no happier about it, eek! I wish S had just dropped me a quick email letting me know that it would be a while til she managed a full reply. Replying 5 weeks later than promised isn't really fair on me - I'm supposed to be learning to trust this team!

Yesterday morning I got up at 8.45am (which is very early for me) because I'd heard the previous day that the presale for Marina and the Diamonds' Oct/Nov tour would start on the Wed. However it didn't say a time, so I got up so I could be at my laptop by 9am in case they went on sale then. I kept refreshing my email page because the link would be sent to me in an email and the email eventually came through at 12.30pm - I'd been sitting there all that time! And as you'll have seen from this blog post, I got tickets!! :D

In the afternoon me and mum popped round to see my nan because although we'd returned her mobile phone on Mon we'd forgotten to return the charger too! I helped my nan sort out a few things on her computer while we were there. And on the way we called in at the local garden centre where mum bought some geraniums for the garden. I tried to persuade her to buy the red ones but she chose some pink ones instead.

Yesterday I discovered that my phone was playing up as although I could receive phone calls and texts I couldn't make them, it kept saying there was a connection error. I phoned my older brother Chris who knows about these kind of things and left a message on his answer machine asking for help. Also my phone alarmed low battery even though I'd charged it recently so that made me wonder if there was a problem with the battery too. The battery has seemed fine since though, so maybe it was just a one off thing.

Dad pointed out to me that there was a double page article in the local paper about ME so I found that to have a read. The article started off well but then went on to say how this sufferer had been cured by something called the Lightning Process and had then gone on to train as a teacher of the Lightning Process. There isn't a cure for ME although there are lots of people offering expensive cures that have no scientific evidence behind them. The Lightning Process is one of the most well known and some people are apparently miraculously cured by it although it sounds very doubtful to me. It costs a lot of money and there are lots of criticisms of it and no scientific proof that it works. So I thought it was a shame that the article in the local paper was so much about what a great cure the Lightning Process is. However, there was one small paragraph about criticisms of it, so at least they were acknowledged.

Today I got up early (9am) and me and mum headed into the city. We drove to the Park & Ride on the outskirts of the city (dropping Alf off in a local town on the way through) and then got a bus into the city centre. I enjoyed listening to Marina and the Diamonds on my iPod on the bus journey. Me and mum went on a long walk out of the city centre along a road with a few charity shops on. I bought 2 cheap books in one charity shop - one was a children's book that I used to like and one was a quick read. We stopped for drinks and then wandered back into town although we did have to ask for directions on the way! We walked for about an hour and a quarter in total then, which I was quite impressed with. When we got back into the city centre we met up with mum's friend for lunch in a cafe. I had a baked potato and we all chatted together. On the way out of the shop I picked up a local magazine because it had an interview with Diana Vickers in it. My tummy pains were bad while we were out :(

Me and mum then split up so she could go to her wool shop and I wandered round the shops but didn't buy anything. When me and mum split up I decided I'd better check to see if my phone was working and to my surprise it was :) So I'm not sure what the problem had been - maybe a network problem. I received a lovely text from Lizzy saying thanks for Mia's presents :) When I'd finished wandering round the shops I wanted to look in I still had a bit of time before I was due to meet up with mum so I found the films section in Waterstones and sat on a comfy sofa reading a book about Pixar animation :) Me and mum met back up, had drinks and some shortbread in a cafe (mum knocked our table which resulted in my glass of milk spilling over my jeans, whoops!) and went into a couple of shops (including M&S for some biscuits for me).

We then headed back to our car on the Park & Ride bus and then mum drove to Tesco on the edge of a local town where she had agreed to pick Alf up. Me and mum did a little Tesco shop while waiting for Alf. I was very pleased that I managed to resist buying Diana Vickers' album. It's on Spotify so I can listen to it for now without having the CD, so I decided to wait til the CD drops in price to buy it and be able to put it onto my iPod.

We dropped Alf off at home and went to our local Polling Station to vote. I saw the start of the BBC's election coverage and hope that the exit poll isn't representative of the actual results. The exit poll was created by asking random voters across the country who they'd voted for. And it suggested that we'll have a hung parliament with Conservatives getting the most seats, followed by Labour. It also suggested that Lib Dems will actually lose some seats. I'm supporting Lib Dems so I hope they do better than that. I do suspect that the Conservatives will win though :( I'm not watching the election coverage on TV tonight, I'll just check how the seats are going on the Internet before I go to bed and hear the final result when I get up tomorrow morn.

When we got home I saw my morning tablets out in the kitchen. I'd got up too early to take them this morn so put them out ready to take before we left the house. But I'd forgotten. Whoops! Think that's the first time I've ever done that. I took my Tac as soon as I got in plus the tabs that I only take in the morn and then tonight I took the tablets that I take twice a day minus my Tac. I think that should be ok as sometimes people have to delay taking their Tac if they're having a Tac blood test done at the hosp.

When we got home I also saw my post. Outnumbered series 2 on DVD arrived, so I'm really looking forward to watching that :) Unfortunately there was also something else waiting for me in the post. I opened it to discover my DLA renewal forms - arrrrgggghhh! The last time I applied for DLA was just after my transplant so lots of things have changed since then - my health problems related to my transplant have reduced but I've developed ME. Unfortunately people who have ME struggle to get DLA. I've got a few months to fill the forms out and dad said he'll help me with them, but I am still worried about it. I found the ESA forms hard, this is going to be even harder.

That's now my day to day updates completed but I'm going to do a couple more updates about other bits and pieces before my blog is completely up to date. It's definitely nearly there now though :)