Just thought I'd also post a quick update for anyone that cares ;)
It's been a busy few weeks with appointments and meetings. I saw my consultant a couple of weeks ago and we had long discussions about lots of things including pain control, my course, reasonable adjustments, occupational health, disability awareness, weakness, wheelchairs.. We discussed the deterioration of my health at length and I left feeling empowered and positive and could see a way forward. However, this way forward involves adjustments, and adjustments don't happen overnight and would involve increased awareness of my condition, which is tricky for me to accept.. But we'll see. I've had a few meetings and things are creeping along, so we'll see what happens. My consultant was very clear that I need to put my health above my concerns about what others might think about me or my want for privacy, so I'm going to have to grit my teeth and accept that I need help.
I've also had an appointment with a CFS-team physiotherapist. It went well and he had some good advice, although putting it into practice is always harder than it sounds. I know literally all there is to know about activity management and pacing, but he had other advice more specific to my current problems, particularly with regard to my grip weakness and my facial pain. He's keen that I reintroduce breakfast, which is going to be a serious challenge, but one that I'm going to attempt head-on. It's been a long while since I've been able to eat in the mornings due to really severe nausea but I need to do everything I can to give my body the best chance of coping.. I've tried loads of different medications and none of them work (apart from one that sends me to sleep) so it's going to be a case of gritting my teeth and hoping my body gets used to it.. So fingers crossed..!
I'm feeling fairly positive about things at the moment. My pain levels are only just tolerable, as are a few of my other symptoms, but I am still going and still managing things. I'm discussing ways to make things more manageable moving forward and I've got some new ideas for hopefully reducing my symptoms a little and managing my condition a bit better. Hopefully, this will all help to move things back in the right direction :)