Sunday, 7 July 2013

Update 7/7 (Uni, mobility, doctors & abdo pain)

A few days ago I found out I've passed my university exams and am through to face next year. I felt very unwell on the day of the last exam and was unsure whether I would be able to sit it the day before, so it really feels like a huge relief and a definite achievement.

I've enjoyed the year as a whole, but it has been tough. I have had multiple relapses, all with incomplete recovery. The first relapse 8 weeks into the academic year was particularly brutal and necessitated a week off followed by several weeks of half days which wasn't ideal and came as a nasty surprise because things had been going quite well! My mobility has also been getting progressively worse throughout this year. Given the circumstances, I'm pleased with how well I've coped, even if there have been a few wobbles along the way. Juggling everything is not easy, managing a complex health condition is challenging, and some of my appointments this year have given me little reason for optimism. After a few difficult relapses I found the anniversary of my diagnosis a challenge this year in particular, and was grateful that my department agreed that I could have the day off to be at home with my family. In general though, I have managed to stay fairly positive, but realistic. Realism has had more of a place than optimism this year, it's been a case of taking things as they come and being positive about what I can achieve in spite of my limitations as opposed to having reason to believe things were about to dramatically improve, which clearly they still haven't. I see reason for tentative hope at the moment though, given that with a few rather fundamental changes, such as Poppy, my symptoms have recently become much more bearable. Buying Poppy was definitely the best decision I've made all year. Hopefully with a few adjustments which are currently still being discussed, my next year of Uni will be manageable, and enjoyable, with hopefully fewer flares, fewer relapses and more bearable symptoms. I'm not asking for miracles, although they would be nice, just a bit more stability would be good.

In terms of the here and now, I also had physio recently and he was pleased with how I'm doing, it's obviously very slow progress and there's a long way to go before any improvements will be at all noticeable, but hopefully in the future there will be an improvement of some sort. We'll just have to see how things go. The only way to know whether it will work is by giving it a go and sticking with it.

I've been back to my doctor and he's put me on some additional pain medications for my abdominal pain and there are concerns about my weight because of my nausea. He's prescribed me some sip feeds to try and help with some weight gain. Unfortunately Fortisip aren't the nicest tasting things, although I was expecting them to be worse. Some flavours are better than others, but they're all quite difficult to tolerate with nausea because they're so full of calories, and milky things aren't great when you're feeling sick either, but I'm giving them a go. I'm having some difficulty not only with breakfast but also with lunch at times at the moment, which is a bit worrying. I'm managing to get something down each day, but it's far from a proper lunch sometimes. I'm back at the doctors this week though so will discuss my nausea again and see whether there's anything else left to try.

I've been sorting out practical things for using my scooter, so had an assessment to allow me to use poppy on buses the other day. It was rather strange- they brought a bus round to where I live and I had to drive on, park in the disabled space and drive back off again, and then repeat this once. I wouldn't say I did it overly successfully but the assessor filled in a form and said my permit would be in the post within the next few days and sure enough it arrived a couple of days later. I went on the buses to my physio appointment and they didn't even ask to see it in either direction, but at least I had it so was following the rules.

I've found myself in rather a peculiar situation that I'm not used to. I can go wherever I want and do as I please outside, but I'm sat in my room looking at everything I ought to do, and am as disabled as ever, if not more so. I'm still very sick, even though I've got my freedom back. I am physically really quite incapable, and I'm very aware of this inside, but out and about on Poppy, my scooter, I feel capable and free. I still have to be careful because the stimulation of being out can be exhausting and I have to take sensory overload into consideration, but I'm not affected too badly by these things, so I can do quite a lot when the physical challenge of walking is removed. I'm also having to be more careful at the moment because I'm on higher levels of pain medication so it would be very easy at the moment to severely overexert and end up in a bad way with payback, so I do have to be mindful of that too. I do find things physically difficult though, so that's a warning sign even when my pain isn't as bad as normal.

I'm feeling really quite tired at the moment, and I'm so grateful to have Poppy because my mobility is really bad. Things are looking positive though: I have no re-sits to revise for over the summer so can have a fun summer enjoying all the things I've got planned :) and I can also spend some much-needed time resting and recuperating ready for another busy year!

I have 3 more medical appointments over the next few weeks but will then have some medical-appointment-free time which will be nice! I feel a bit bogged down with illness/disability-related stuff at the moment so it'll be nice to just escape and be me. Yes, I'll still be ill, and yes, I'll still be disabled, but I'll be able to put it to the back of my mind and just enjoy things within my limitations instead of constantly raking over things to prepare for appointments and assessments etc.

Another piece of news for today is that this blog has now had over 4,000 pageviews! Thank you to all of you for reading, and thanks for the positive feedback :) I really hope I've helped to raise some awareness of CFS and also helped some CFS/ME sufferers feel less alone. Some of these update-type posts are probably pretty boring for the vast majority of readers but I won't be offended if nobody reads them!

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