I have had ME/CFS for ten years now. You would think that I would be past all the disappointments and be done mourning the life I once had, that I would have adjusted by now to this new life filled with restrictions and limitations. And I mostly have, but once in a while, the grief sneaks up behind and takes me by surprise, feeling almost as fresh as in those first years of loss.
I am generally quite happy and content these days. That is simply my outlook on life. I have always been happy with my life, during each of its unique phases, bearing up fairly well even during that devastating period when I first got CFS in 2002, mourning and then moving on.
But this has been a difficult week for me. Three times this past week, I was out in public and suddenly felt so horrible, so fragile that I had to flee and felt as if I barely made it back home in time before collapsing. This is unusual for me these days, in part because of medications and in large part because I so carefully monitor and restrict my activity level, living a very cautious life . All the caution in the world didn't matter this week, though, and I crashed badly during my book group meeting Wednesday evening, as I wrote here earlier this week .
I have been trying to rest and recover, but it is slow going. Some emotional upsets (probably caused in part from my crash - the emotional and physical effects of CFS are a never-ending cycle!) on Thursday set me back again, then I spent 90 minutes yesterday meeting with my disability lawyer, trying to prepare for my final disability hearing in December. That was, again, both physically and emotionally exhausting, as our discussion focused mainly on how to prove that I am as sick as I claim to be (more on that later).
This morning, I was still feeling pretty crappy but trying to make the best of it - sitting out on the deck with a good book - when that sense of mourning just snuck up on me again.
The weather is gorgeous today. We were supposed to go camping but had to cancel, in part because of how sick I've been this week (another sore point - the Social Security Administration thinks that since I can go camping, I can work). Friends on Facebook are posting about all their fun activities this weekend, and I am feeling isolated and trapped. Our local Oktoberfest is this weekend; we used to go every year with friends, to eat German food, drink beer, and watch the kids play the games and ride the rides. There's no way I could manage a festival today. The weather is perfect. It used to be our family tradition to take a hike every weekend. That's not even in the realm of possibility today! Our house and yard are a mess, but I can't help with those.
Despite the sunshine, I am feeling a bit gloomy, just missing the old, active me. It seems that with CFS, the mourning never really ends - though, of course, it is much rarer these days.
I am feeling a bit better, just writing about it. It is so good to have a place where I can express these feelings, a place where everyone understands, where I don't need to worry about making anyone feel uncomfortable in the face of the realities of my illness. Thanks for listening. I am heading back out to the deck, to my very comfortable lounge chair and my very good book. Hope you are enjoying your weekend!