Tuesday, May 12, 2020

A temporary voyage in the same boat

2020 is shaping up to be an interesting year, huh.

I haven't updated this blog since last August, mostly because blogging doesn't seem like much of a thing anymore, but lately because nothing is happening. The band hasn't rehearsed since everyone was advised to go into hiding. We have no gigs. No one has any gigs in the traditional sense. We're not set up to perform virtually. Setting us up to perform virtually seems like something I ought to look into, but between paid work (which I thankfully still have because I've freelanced since 2011), caregiving duties, and attempting to obtain basic necessities without ever leaving the house because I live with someone who's immunocompromised, I'm stretched kind of thin as it is.

Are we having fun yet?
Me on the first errand that's required my physical presence since late March. I tilted the camera to symbolize the askew-ness of the world. This is literally as much creativity as I can manage right now.

So why the new post? I glanced at my computer clock to see what time it was and noticed the date: May 12. ME/CFS Awareness Day. The thing I blogged about even when I stopped blogging about everything else.

In the past I've explained what ME/CFS is. (tl;dr: It's a disease where you hurt all the time, feel really sick, experience crushing exhaustion, and often die long before you should). I've encouraged readers to kick in some money to discover a cure. I've talked about why raising awareness about the disease is important and linked to articles on what we're doing to raise it. This time I'm going to relate something somebody said during a meeting with local #MEAction members after the pandemic hit.

The meeting was virtual, of course, but we didn't teleconference because of coronavirus-related self-isolation. We teleconferenced because most of the members have ME/CFS and are too sick to leave the house. Instead of starting with official advocacy business, we took turns talking about how our lives were going in the midst of all the chaos. One woman said she was doing pretty okay, actually. Her entire life had already consisted of staying at home, shut away from the world. Now, at least temporarily, everyone else was in the same boat. She didn't want other people to suffer. She just enjoyed feeling, for once, like she wasn't the only person who couldn't go outside, couldn't contribute to society, couldn't partake in the normal activities that most of us take for granted.

That about sums up Awareness 2020 for me: knowing that what's been chipping away at so many people's mental health on a temporary basis is just life for people with ME/CFS, except that people with ME/CFS also have to deal with chronic pain and possibly dying young.

Oh, and research suggests that the surge in covid-19 cases could lead to a greater number of people who have chronic illnesses, including ME/CFS.

Stay safe, everyone. If you're healthy, it's good to become aware of what ME/CFS is by reading posts like these. You don't want to become aware by getting it yourself.