It's been a while since I've blogged so this is just a quick update..
I've had a rough couple of days since an increase in one of my meds to try to help with my facial pain and abnormal sensations. The increased dose made me really, really drowsy and I couldn't keep my balance, so I've had to go back down to my previous dose.. And now the pain is back as bad as ever. So I'm feeling a bit sorry for myself because I'm meant to be revising and instead I'm drowsy and worrying about my med dosages and side effects, and the pains in my head are horrific and my eyelids are so heavy... I just want to sleep but I'm desperate to get my work done..
Medically I'm still struggling. I'm struggling a bit less with coming to terms with things at the moment, but physically things are really tough. Everything seems more difficult (doors seem heavier etc.), my legs don't always co-operate, my pain levels are fairly high, I feel unbelievably exhausted... During my Easter break I had significantly more days out in a wheelchair than not- it gives me freedom to explore with barely any payback but it hurts to need to use a wheelchair aged 21. Having had over 3 and a half years of illness, all the symptoms, and the monotony of the symptoms, are tough to take. There still seems to be no improvement and I just don't seem to be bouncing back after relapses, which is a concern. Things should be stabilising by now really and there's normally an overall improvement over the years with CFS, and I'm yet to see this..
I've had some exciting news since I last blogged- I've been asked to take part in some clinical research into CFS and I'm really keen to do it, I'm just trying to work out how/when I can organise it because of other commitments. It would be amazing to have something definite to be able to say: this is the problem, this is why I feel so bad. And obviously once a cause can be found, treatments can be worked on, which I'm desperate for! I know loads of problems have been demonstrated in the past in CFS patients but this study could hopefully advance understanding further and for me personally, having all the tests done could be really informative and help me towards understanding and acceptance.
So basically- I'm still coping, I just wish there was a lot less to be trying to cope with, but I'm sure most people in the world would share that sentiment.
PS- this has been written in short snippets over several (very drowsy!) days so apologies if it doesn't all flow together!