Every now and then I get slapped in the face with memories from before I was sick. My ME/CFS started in the spring of 2010. I thought it was just anemia (and I was anemic) so I kept having cycles of feeling better and then crashing, until I ended up so ill that I was sleeping 16 hours a day and had trouble being upright.
so it's been a long time and I've gotten pretty good at pacing and keeping within my energy envelope and not overdoing things too frequently. Which means my activity level is fairly low, but consistent.
And then I remember I used to work full time on my feet - in an environment where there weren't any chairs. I used to clean my house while the kids napped. I'd spend a whole day walking or hiking or exploring places. I was active, even with kids less than 2 years apart.
Sometimes I still feel like I'm lazy or not doing enough. Even after all these years I question if I'm really that sick, or maybe I'm just exaggerating. Maybe doing xyz wouldn't be so bad and I secretly just don't want to.
This is another round of grief. My husband remembers what I was like before I was sick - when I was in university and always involved in whatever was going on, worked part time while finishing a double major in 4 years, walking from one side of town to the other just because it was a nice day to be outside.
My kids don't remember - I have so many pictures of them hanging out in bed with me, and being out or doing something was such a big special day. Sometimes I feel like they don't know "real me" and they only know "sick me". They can tell when I'm exhausted or in pain and remind me to rest, and it feels like kids shouldn't have to do that.
But then I realize that by pacing and keeping myself as stable as possible, I am being "real me" - I do things that are important to me, I show up as much as possible for what matters, I share my thoughts and my passions and as much of myself as I can. I don't take the good days for granted and work to connect intentionally as much as I can.
Grief is complicated.
