It's been a while since I have told you guys in depth where I'm at health wise. The changing of seasons has been tough on me and the last few weeks I feel like I have gone backwards after I had made small progress during the summer. I'm spending most of the day in bed only getting up and about to do small tasks.
My memory is touch and go. I still forget names, and things that have happened but it's not as bad as it was - there was one point I barely knew where I was half the time. I'd say I'm more forgetful rather than completely clueless.
Insomnia is my biggest enemy right now. My body is so exhausted but as I am constantly running on adrenaline to get through the day when it's time to sleep I can't nod off which then becomes a viscous cycle. My sleeping pills don't help so I'm looking into alternative routes with that one...
I'm not fainting as much as I was which is great but I'm still having horrendous fits which have recently been on the rise again (They look like I'm having a stroke and an epileptic fit at the same time)
My pain medications mostly keep my pain levels under control but neuropathic (nerve) pain during the night can get extremely bad. I hate being dosed up to my eyes in pain meds but it's the only choice I have right now. The hallucinations I get as a side effect are not welcomed with enthusiasm either!
Paralysis is something that has been causing me a lot of stress. Loosing the use of my limbs is so very frightening.
Some good news - I haven't been sick in quite a long while! I'm tolerating food better although still loosing weight - NOT a good thing despite what people might think. Appetite is neither here nor there but I force it because I know how important food is especially as my body doesn't make new energy easily or conserve vital nutrients.
My 'brain fog' is also better and I can now concentrate better on the TV and have been reading more often, something I'm pleased about!
Comparing myself to how I was this time last year gives me a lot of hope and strength. This time last year I was on the verge of hospitalisation, unable to fed, change or wash without help. I can now do all of those things myself which is much better for everyone. This time last year I was in and out of A&E every other weekend, I haven't stopped breathing in a long time now and the last time I was in an ambulance was in June. The steps I have made are very small ones, but I'm so grateful for them and the biggest change of all is in my mind. I cope better. It's still very very tough to accept a life that isn't a life at all, but I just take it day by day.
I don't want to bore you too much with lots of health jargon so I'll leave it at that.
How have you guys been doing?