The CDC defines disability as “any condition of the body or mind (impairment) that makes it more difficult for the person with the condition to do certain activities (activity limitation) and interact with the world around them (participation restrictions).”
Somewhere in the middle of May I realized…oh sh*t. That’s me.
***
I know I know. I do this thing where I’m active online and then I drop off the face of the planet for months at a time.
I’m back. Until I do it again.
It’s been a tough spring after a hard winter. It hasn’t all been doom and gloom, but I’ve definitely been in the thick of it with two big pain flares.
Most of the fall and winter, I actually forgot I have a degenerative and (currently) incurable autoimmune disease. I barely noticed it in October while car camping through New England with my husband and toddler. I may have had the odd migraine or two, but I don’t remember pain through the holidays this past year.
Academically I know summer is always worse for me. I wrote about it last year. But I really have been spending my non-symptomatic time ignoring it, with a vague overarching fear of it coming back.
***
This spring, our family has been sicker than we’ve ever been, and as a result my flares have been the worst they’ve ever been. We had the stomach flu over Easter. Within a week and a half, I started to flare. For the first two weeks of May, I struggled to sit or stand or lay or walk. My spine burned and my ankles felt unstable. My hands hurt, I couldn’t create art or crochet or knead bread or open jars or pump my shampoo. This faded, and within 3 or 4 days, we caught RSV. I was sick with that for well over a week, going on two. As soon as it cleared, I started flaring again and, truth be told, the day I’m writing this, June 17th, is the first day I’ve felt like a whole person since Easter.
These flares scared me a little. I have never experienced such full-body… well. It felt like I accumulated 8-10 acute injuries all at once. Pain, yes, but also weakness and instability. But no injuries were had. It was the result of illness raising inflammation in a body already on overdrive just from existing. It made me question my future, how I was approaching motherhood, daily tasks in my home and around town.
***
As I began to look at ways to adapt my environment to my needs, I realized a few things:
I am sick even when I’m not symptomatic.
I am not a failure when I am symptomatic.
There are no prizes for powering through a flare.
In fact, there will probably be penalties.
It is not dramatic to let those in my circle better understand my changing limitations.
It is not my fault that I am sometimes sick.
However it is up to me to remember I still have a disease when I’m not symptomatic and treat my body accordingly. Move when I’m well, but sensibly.
It is okay to ask for help. Maybe that’s a friend watching my son, maybe that’s a family member helping with laundry. Maybe that’s a mobility aid to help me stay involved.
***
Well, there you have it. Nothing profound or beautiful, but a summary of where I’ve been, why I haven’t been creating, and what I learned along the way.
Thanks for reading.
Adjusting to disability is hard. I’ve, like you, found the need to accept my needs and pace on “good” days in many ways harder than flare days when my body decides for me.