Thanks for the welcome, folks. You know I have never really compared my journey to anyone else's. There is a good reason for this. My sxs didn't really start in earnest until six months after a three month taper. And it was [...] bad for six months, then it got even worse. So I don't really like to say this is how it was for me at 18 months, or 24 months. We are all very different and whilst I always like the reassurance that my sxs are not unique to me, the journey most definitely is. Add to that the fact that I have had physical sxs only during the past two years kind of makes me a bit unusual. Being virtually bedridden for two years is not very common either thank goodness.
What I do share with everyone else, is the unpredictability of this whole experience. All I can say for definite is that it just keeps getting better, little by little, and I haven't found anything to speed it up!!
I started getting outside in July, my biggest breakthrough in terms of physical functioning and can now walk a mile a day usually. So what am I left with? Cog fog making reading/watching TV still very difficult, unsteady on legs, things look a bit unreal when outside, anal muscles which don't work properly
- my worst symptom now - and just generally feeling unwell most of the time.
I did have a few scary days the other week with terrible downward pressure on my brain and pressure on my lungs making breathing very difficult. The pressure on my lungs was a new thing. It passed and I am sure my baseline improved slightly afterwards.
Anyway, I just keep hanging onto the belief that it will get better and that is what keeps me going.
I'm sorry that some of you are clearly struggling. That was me yesterday!!
Today I am kind of ok.
Hugs
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