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.

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.