I’ve been struggling. A lot. 2016 sucked ass. It started out OK, if busy. My little team at work (all two of us) did 7 formal engagement sessions across BC at the end of 2015 into 2016. Some went well, some not so well. But ultimately it was 2 months of travel and long days without enough recovery time. By the time I got a week off in March, I was really having a hard time. By the time May came along I was at the doctor telling him I was really crashing. And by the end of June, I was ready to admit I needed a stretch of time off of work. I was walking slowly because each step felt like my legs would give out. I hadn’t realized just how bad I’d gotten. It turned i would be off work for 3 1/2 months. And 9 months after I went off I’m still not back to full time.
It was so hard. I spent the first week off work running around doing errands. Continuing to push myself through the fatigue. I went to a friends wedding and stealthily took a long umbrella, ostensibly as shade, but really so I could use it as a crutch walking to and from the site. After the first week off I slowed down and let the crash come. I stopped fighting it. And boy did it come.
I spent the summer sleeping whenever I needed to. My only job was to eat well (which would be a first) and resting. After about a month, I added in some walking. And then it felt so good to be moving that I overdid it. You know, walking slowly for 20 min kind of overdoing it. Ugh.
By the time I started back to work in early October, I had got to 30 min of walking a day, usually in two chunks. I could do more, but I would pay for it dearly in the following week with what the call post exertional malaise. But I still did more sometimes, because I’d started feeling like I could be social again. And being social usually involves either food or drink or exercise. So sometimes I overdid it.
I ramped up at work too fast, got back to full time and then had to back off again. And now, 3 months later I’ve settled into what I think is my new normal.
And it’s frustrating.
My body physically seems to be stable. I’m getting migraines and that’s a pain, but I’ll keep dealing with that. But mentally….it’s hard. I spent my 20s dealing with an already reduced quality of life, but I managed. I settled into things I could do.
Now I’ve had to reset again. Before, I grieved the life I thought I’d have, but I was OK. More recently, I’m finding it very hard to readjust a second time. This time, all I can seem to focus on is how unfair it is. Which is really not helpful, i know this.
In my 20s and early 30s I figure I was operating at about 60% of “normal”. Not bad for MECFS. And now I figure I’m at about 60% of my previous normal. So, i can probably work full time which means I can pay my mortgage. But there’s very little left over. Less than I had before last year, and unlikely to get better. And no I’m not being pessimistic here. It just isn’t.
So how does one cope with that? I haven’t figured it out yet. I just know I’m ridiculously annoying to be around because I cannot seem to see the upside. And I’ve thought maybe it’s just time that I need. But it’s more than that.
I need some space to grieve, and then I need….something I wish I could put my finger on. But can’t. Yet. But I think writing about it could help.