I got told that it wasn't normal to collapse so suddenly as in suddenly be unable to stand and walk, with ME, and I got told that seizures definitely didn't happen with ME. This is why it important Imo to share common experience. Those things are scary enough when you have someone telling you they aren't a normal part of an already scary disease it gets terrifying real quick. This is what I mean about this site being so important on the 'what has helped you' thread. I always used to doubt to be in denial. I know here that I fit. Not just with the common experiences shared here but with the ICC and CCC symptoms and therefore my own gut instinct is right not wrong about resting, pacing not pushing too hard etc. Don't get me wrong it's not that you want to hear that other people are poorly, but knowing you aren't alone you aren't isolated in your experience, helps.
As for getting better, I know people who've gotten significantly better but I know people like me who are coasting at a fairly consistent level of illness and don't seem as though we will progress beyond that without appropriate medical intervention of whatever kind is required. Albeit their severity is less than mine but in terms of hitting a limit on what they can achieve as 'recovery' seems to be the same even if it's at different points on the scale. I think for most of us there is a glass ceiling we can reach until the underlying problems, whatever they are, can be resolved.
I was reading the diaries my mum kept when I was first ill, not to dwell but to organise information as to what meds I've tried etc. And my ME now looks much the same now as it did then. In some ways it's better in some ways it's worse, but overall it's largely the same. The earliest she kept those books is June 2001 but she makes note that before I became so severely ill, as in using a wheelchair, bedbound etc. I was already having the symptoms. It's not easy reading to see that things haven't really changed in all that time, but I'm also trying to come to a place of acceptance and as painful as it is it's helping.
I agree that I don't think a lot of doctors know about ME, especially at the severest end. I've been lucky in that while I've not had a doctor who really understands, I've had doctors willing to listen and learn. My current GP and OT for example are lovely, we have to move this summer and I'm dreading the process of trying to find another who are at least willing to listen and learn as these have. I'm dreading moving, largely as a result of loosing lovely medical care. I'm not dreading where we are going, it looks amazing there and the people are truly lovely I'm looking forward to actually being there. But I'm dreading the process of moving, it's a HUGE move and finding doctors who aren't as supportive and kind as the ones we've had here is a really, really scary prospect.
That's not to say I haven't had bad experiences, I've had my fair share too! I saw a rheumatologist for example after by GP referred me after an increase in pain, tramadol was barely touching it, and based on inflammation in blood tests. He was rude, dismissive and patronising in a way that upset me so much it put me off seeing even my own lovely GP for the better part of a year. I still have no idea what was going on with the blood tests because he didn't address them even once and I felt so small that I didn't feel I could bring it up because he made it clear he wasn't interested. He closed by saying I could 'say I have fibromyalgia as well' if I want, whatever that means, I have no idea. Fiasco would be how I summed up that experience.
I did ask to be referred to the local ME clinic then found out it looked like it was ran very clearly around CBT and GET so changed my mind and felt very embarrassed that I'd ask for a referral. I think I'm just going to hope for a nice GP when we move and leave it there.
Edited for typos and because my reading comprehension is poor today so I didn't write things very clearly! Hopefully it's better now!
