I’ve been thinking a lot about this.
The goal posts were moved by August’s relapse. And then they moved again in January as the severity slowly started to lessen.
So where am I at now? What’s my new normal, or my baseline of activity for those who use similar terms.
Well at my worst I am in bed, in the dark. I experience paralysis, loss of speech, an inability to chew. I can only walk with help, and only the short distance from bed to toilet…That’s always been the case; the relapse didn’t trigger that it just made it more of a daily/frequent thing again.
But at my best (my new best not the one I’d come to know as my normal) I can get dressed into easy comfy clothes. I can use the stairs. I can brush my teeth. I can watch a couple of hours of telly. I can make my own drinks. I can sit in the garden or on the front step. I can do a word search. I can post online. I’m testing the water with visitors too.
Somewhere between this new Best and Worst is what is my new baseline – the bits I can do most days without exacerbating my symptoms. I haven’t quite put my finger on it yet though. In fact I’d go so far as saying I have absolutely no idea what my new baseline is. I do know though, that it doesn’t feel like enough some days.
If it’s okay with you I won’t tell you where I was at before August’s relapse. Maybe another day. I have to let it go to be honest with you. This is where I’m at now. Perhaps this post is just my first proper attempt to acknowledge where I’m at now and to begin the process of accepting that.
This is my normal now; the worst bits and the best bits.
I hope wherever you are at right now that you’re being gentle with yourself. This gig is tough. But thank goodness we’re here together to cheer each other on through whatever kind of day we’re dealt.