Every. Single. Day.
(^^ dramatic pause ^^)
I am way beyond waiting to get better. People often try to reassure me that one day I will "get my life back". I know what they mean- they mean get back to all the things I used to do. But what they fail to realise is that THIS IS MY LIFE. I'm not waiting for another life or my old life, I am right here, actually living my life right now. My one and only life. And I won't spend it waiting, or wanting, or wishing.
The data on recovery from M.E makes for depressing reading and my prognosis is not great, but I do believe that even if I don't recover fully, I will recover to a much better level of functioning than I am at now. There are days, weeks and months that are blurred and hazy or lost to sleep- and I may look back on these M.E years and remember what a nightmare they were. But I think I will also look back and marvel at all I DID manage to do and all the weird and wonderful things that I have learned about myself.
I decided long ago that I would make these years count for something. I refuse to put my life on hold, waiting and wishing for things to be different. So I have adapted and changed. Life is different (and mostly horizontal), but it is still a life. It has hardship, pain and challenges but also joy, laughter, love and beauty.
I won't lie- It's a tough shift, I'd love to be better, but I'm living each day the best I can.
Can you say the same?