Several months ago I told R and S that I'll give my best for a year and if things have not improved I'll see what I'll do next.
Now I have given my best - whatever that is - for one year and things have not improved and I haven't a clue what to do next.
Apart from the fact that there is absolutely nothing to do. It's not a do thing at all. It's a grin and bear thing. Only there is no grin.
Today I feel swamped by sadness. Or maybe it's just self pity. Or both. Who cares. My luck has run out.
Remembering the energy and the urgency and the trust I put into my recovery last year at this time, how confident I was that there is medical help, that my body knows how to get better, that time will heal etc. etc.
This is so distant now. Feels like watching a different person. I feel so reduced, diminished, frightened and alone.
What has become of me!
How did I get that small?
How do I get out of this fucking mess? Ok, I have to accept there's been a paradigm shift - as someone recently put it, ever so cleverly - in my life. Now, where are the tools to cope with it? Every itsy bitsy IKEA shit has a manual, so why is there none for this shitty autoimmune disease?
Half a lifetime ago, rattling the perimeter fence at Greenham Common US air base, shouting, and singing in a crowd of three million women, I physically felt this wave of fury being transformed into energy and strength.
Why do I remember this now? I can barely make it upstairs today. My fury today is a flood of tears. The only wave is one of nausea.