Assistance and grief in chronic illness

 A shower thought, but one that happened while washing dishes.

Certain things that are silly or even wasteful when you're in rude health become helpful or even necessary when you have a chronic illness. A shower seat. A tablet stand and wireless keyboard/mouse to use the computer even when stuck in bed. Binging popcorn media when it's a bad brain day to avoid going insane. Meal replacements marketed to startup people. Multiple similar-but-different tools for dishwashing to deal with hand weakness or tremor. Seat-cane for events with uncertain seating and folding cane in my bag the rest of the time.

And on, and on. There almost certainly will be more in the future.

Every single one, I resisted for weeks to months. Most of them, I've felt guilty about, because imposter syndrome and Protestant Work Ethic. (Thanks, John Calvin! You suck.) I don't technically need any of the assistive devices and strategies, not need. I can struggle through without them; it just means more crashes, more suffering, and far fewer opportunities to get out and do stuff. "Just."

So why resist?

Each thing requires me to admit that I need this thing. It forces me to admit that showers are exceptionally difficult because of the heat and the inconvenience of trying to split one into smaller tasks. It forces me to admit that my legs are weak and easily tired. It forces me to admit that my balance has become kinda shit.

It requires me, in short, to confront everything that I've lost. And in my case, that means admitting to myself that these things are probably lost for good. All the dance parties I skipped! All the showers I resented! All the fancy dinners I'll never cook. It's an odd kind of grief because it's endless and endlessly fresh. Every time I use my shower chair, it's a pang. And sometimes, for no reason that I can discern, it hits me like a little punch to the gut.

When I put it like that, it's a lot easier to understand why I resisted.

All that said and bitched about, I do these things because they do make my life appreciably better, even with that little hit of grief. They are unequivocally a net good! I'm working on being braver about accepting the help I need; it does help, and it's one of the ways I have power over my life.

For anyone who might have ME/CFS or ME/CFS Long COVID, assists & strategies that have helped me in order of most to least total impact, as completely as my brain will allow:

• admitting that I need help and I'm not the person I was five years ago
• minimizing added sugar (soda and sweets); no, I have no idea how it works, but it works for me, possibly topic of another post
• tablet stand that can accommodate this very thin portable monitor, wireless mouse and keyboard set, and mesh basket that holds my computer + accessories + hard copy stuff I currently need
• aggressive system for task tracking, note taking solution, and robust daily routine (at least compared to what I used to do), which includes alarms to remind me to eat
• ready food (prepped meal delivery, more modern meal replacement shakes like Huel, Soylent, etc.)
• specialized computer chair to allow me to sit up and write on not-shit days with less discomfort and muscle fatigue
• shower seat
• using the car and ordering stuff when it might sap my capacity to walk/bus/run errand, even though I could do it the way I'd prefer
• seat-cane or folding cane for outings longer than 30-60 minutes
• just admitting it when my brain flushed the last five/ten/hundred minutes of information
• actually requesting ADA accommodations at concerts and events; making sure friends know that I will need a seat at parties and such
• three different brushes plus a sponge at the kitchen sink and similar "it's clutter to most people, but it actually helps me do the thing more easily"