Saturday, 17 August 2013

Update: nausea relief at last (yayy!!), pain & Dad's injury

I'm awake in pain so thought I'd do a quick update..

I had a few more dreadful days with the nausea, to the point where I would have discussed the option of tube feeding at length with my dietitian if she had rung because I was desperately struggling. She mentioned it last time and whilst I didn't like the idea initially, when I was struggling to that extent I started to think it would actually make life a lot easier. I was barely eating anything, was struggling to take the supplements and was feeling rough.. I was eating so little that one family member thought I must have 'a touch of anorexia'- if that's even possible. I felt that was more than slightly offensive (to both me and anorexia sufferers) because I was wanting to eat but unable to. It was a physical problem not a psychological one. Anorexia nervosa is a destructive medical condition, not a word to be thrown around when people are struggling to eat. It affects the way society views an illness when it's referred to like that, just like when people think feeling down is the same as having Depression.

But anyway, thankfully my nausea has improved hugely! Yayyyyy!!!! I love prochlorperazine right now!! Miracle drug! So if anyone out there is looking for something to try for nausea, I would definitely recommend it, but obviously what works for one won't necessarily work for others, but don't give up- there will be something out there to suit you! I believe small doses of prochlorperazine are available over the counter in the UK as Buccastem. Might be worth a try. The only side effect I have had is tiredness but I'm either getting used to the medication or getting used to the tiredness because it seems to be affecting me less and less which is good.

I got a phone call yesterday and they didn't take enough samples to check everything they needed to with regard to my excessive bruising, so I have to go back to the hospital ASAP to get some more samples taken, which won't be possible for a couple of weeks, but I really don't think there's a problem. It seems to have reduced a bit now. I still have quite a few bruises but I'm not absolutely covered like I was which makes me think it was partly me just bashing into things a lot!

My pain is bad tonight, but it hasn't been horrific in general recently. I did something stupid yesterday.. I went on a trampoline while dosed up on painkillers and have injured my ankle without realising at the time. The pain has meant I've barely slept tonight. It doesn't seem to have swollen and I still have full range of movement (although it HURTS) so I don't think it's anything serious, although it could be another tendon injury similar to the one I did a while ago, but we'll see- hopefully not. Hopefully it will be less painful in a day or two. I shouldn't have been on a trampoline though (even if I was using someone else's bounce and it was seriously fun) and I probably have been pushing things a bit recently, even though I have been sensible and used Poppy a lot, so it's probably not surprising and might even help to slow me down a bit which might be a good thing..!

My 'facial pain' is adding to the pain as I'm writing this, and I've also had nerve pain in my hands, just to add to the unpleasant sensations. I wish I was asleep through all this pain, but hey. My tramadol and paracetamol will have both basically run out by now, judging by when my pain levels normally wake me up, but I'm not planning to take anything more until 'morning', because I don't like taking a higher dose if I can help it, although I will if I need to. My pain medications are mostly to try to stop me from passing out due to abdominal pain, but my abdo pains have still been really difficult at times recently. I think I might have to have them looked into in the not too distant future. We'll see. If there's something treatable going on, I'd rather know. If it's something that just requires symptom management then my pain level is bearable a majority of the time at the moment. So I don't know. I feel like I ought to get pain of that severity checked out because it keeps recurring, but I also am not keen on the idea of investigations. I think I might have a chat to my GP at some point and see what he thinks. We have talked about it in the past and decided to put off testing for now, but that was a while ago and the pain is still recurring..

I now have funding completely in place for me to have a support worker with me a majority of the time at Uni next year. It's going to be different, but I hope it will really help, and I'm pleased I've been sensible enough to let things be sorted out to enable me to have a support worker. I didn't like the idea of not being completely independent, but I'm trying to see it as someone working alongside me to enable my independence and stop me needing to rely on others. There are still a few things to get sorted but hopefully early on in the year everything will be ready to be implemented, giving me the best possible chance of managing and achieving to the best of my ability.

I've also been experiencing life on the other side recently- my dad had an op on his hand yesterday following an accident a week or so before. He's going to be having a lot of physio and will have a fairly prolonged recovery period ahead of him. It's been strange to be the one sat waiting for news from the hospital. It's not a nice feeling when you have no control of the outcome but you're so hoping things go well. You're wanting to know exactly what's going on, but you're reliant on information from other people. I'm sure Dad wouldn't mind me saying that he isn't the most relaxed of patients, so when he ruptured the tendon in his finger (bruising put stress on it, then a large compost bag he was carrying slipped and put more stress through it and it snapped) we were all apprehensive, particularly when they said the operation was going to be more complex than initially thought and was going to involve harvesting a tendon from his wrist (which apparently doesn't have a function) and grafting it in his finger.
We had to cancel our family holiday, which is just one of those things, but I could tell he felt guilty. We always feel guilty when we feel like we are inflicting losses on others but it's important that everybody's feelings are directed at the thing causing the loss i.e. the CFS, or in this case the snapped tendon, as opposed to the person suffering as a result, because it's not their fault, and they are suffering the same loss, or other losses. I'm really not that bothered about the holiday, we've had a nice few days together anyway, have had lots of holidays in the past, and there will be holidays in the future; his recovery is far more important, but it's definitely odd to be more distant from the loss of independence and the 'hospital experience' for once..!

Tuesday, 6 August 2013

Update 06/08/13 Nausea, nausea, nausea..

It's been a strange time since I last posted. I'm continuing to really struggle with nausea and eating. I've never had nausea this severe for this long before, so it's becoming difficult to manage.

I've been away for a few days to spa hotels with a close friend. We had a lovely time and it was really relaxing. I manage fairly well in the water so it was nice to move my legs around a bit (although they now hurt rather a lot, so maybe I swam a bit too much...) and it was lovely relaxing in the hot tubs, saunas and steam rooms.. Bliss! All the staff were great at both hotels, although instead of asking at the first hotel, they automatically put us in an accessible room.. I don't really feel in need of an accessible wet room with shower seat and red emergency pull cords just yet, but hey! We seemed to get bigger rooms at both hotels because of my 'disability' though, so it does have it's advantages ;) The blue badge was definitely useful in the busy hotel car parks too!

I had one really bad night while we were away unfortunately. I woke up in the night with severe abdominal pain (even worse than normal, and SO much worse than I've had since I've started on tramadol) and was really ill with vomiting (I apologise for too much info but it was blue!?!) and an upset stomach. And then I passed out a couple of times, just for good measure.. I really wasn't sure what to do. I felt incredibly unwell and wasn't sure whether I needed to contact a doctor, particularly with being so underweight and I wasn't sure whether the fainting was due to low blood sugars because of my recent difficulty eating. I wasn't sure whether to take extra pain meds or whether this wasn't a good idea, so it was all a bit stressful. Thankfully the pain eventually subsided a little, I stopped retching and managed to drift off to sleep for a while and woke up feeling ill but not horrifically ill. I managed a bit of breakfast and the spa made me feel much better later in the day! Thankfully I haven't had a recurrence the last couple of nights so hopefully it was a one off!

I'm still feeling very nauseous, and a little unsure where to go from here. Being quite so underweight while still so nauseous is rather unfamiliar territory. I'm expecting another call from my dietician over the next few days- this week hasn't exactly gone as we had planned.. We'll just have to see how things go..

I've been at the doctors this morning. It was a doctor I haven't seen for a long time (he was my GP before Uni, and actually the doctor who originally diagnosed me 3 and a half years ago). It was interesting to see what his take on things is. I needed more tramadol to keep me going until I am back at Uni with my usual doctors, and I was needing to try something new for my nausea. He has prescribed prochlorperazine. It's not something I've tried before and he said it would be his first choice- and he did seem to know what he was talking about- so I'm hoping it will help. There's always the concern about side effects and interactions but it's worth a try.

I hate how thin I am at the moment. I hate how sick I feel. I just hope things get easier soon. I'm so grateful I have had 2 trips away with friends recently though and have enjoyed both despite my health. I have one more trip away organised this summer (with my family) so fingers crossed that goes equally well or better..!