If there’s one thing that I’ve struggled with the most while I’ve been sick, it’s finding a balance between doing things I enjoy and doing things that don’t make me sicker. It’s especially hard when almost everything I do either steals my energy, fills my muscles with pain, or makes me feel like I’m going …
I’ve been on a hunt for the best mattress for a disabled person, like me, ever since I ruined my last several mattresses. How exactly does one ruin a mattress? The obvious guess might be to have lots and lots and LOTS of sex. And as fun as that would be, I’m not convinced it …
How to Ruin a Mattress . . . And Other Things I’m Good At Read More »
It’s hard to be hopeful that a cure for ME/CFS will be found when the entire world is looking for a cure for a different illness.
It’s hard for me to fault people like this, people who try to go about their jobs and daily lives, unfazed by the reality of a deadly virus. It’s hard for me to fault them because, once upon a time, I did the same thing.
I hope everyone remembers what it was like, how it felt to live in this strange alternative universe of fear and social distancing. I hope everyone remembers it because some people will have to keep living it.
My first job was working the front desk at a gym for minimum wage, long before disability rights were on my mind. I scanned member ID cards, re-racked weights, and cleaned the entire gym — wiping up people’s saliva from the sinks and their sweat off the treadmills, sanitizing the toilets and showers, and picking …
The need to speak my mind, and the heartache of not being able to, has only made the moment more palpable, more intense and full of emotion. But no amount of emotion is going to change my circumstances. No matter how hard I try, I can’t speak the words I want to say.
I regret that it took a life-changing illness, and losing some of my privilege, for me to truly empathize with the struggles of less fortunate people. I wish I had come to this realization sooner, when I had more health and energy to help other people.
It was both a relief and a concern to find the source of the mold. The relief was knowing where it was coming from and the concern was: How the hell do I get rid of it?
When chronic illness becomes a new kind of normal, it also becomes a cruel existence, one in which pain is a constant torture and exhaustion is as frequent as breathing.