Unpredictability makes it hard to plan ahead
With #CrohnsDisease , #inflammatorybowelsyndrome and #Depression Ihave noticed a gradual winding down of my physical energy levels. I am also troubled by joint stiffness and pain that sometimes prevent me from doing the little bit of work I can still do ( I'm waiting for a Disability hearing ) . They say it's not #arthiritis but they also don't know what else it could be. As someone living very low-income I qulify for Medicaid but also can only be seen at loe-cost/free clinics where the knowledge of #autoimmune or chronic conditions varies wildly.
I am a freelance musician, visual artist and teacher. I retired 7 yrs ago from full-time work as a bicycle mechanic because the fatigue made it impossible to sustain full-time work, and the shop could not accommodate my need for a 15-hr/wk, flexible schedule (reasonable accommodation is not enforceable for businesses of fewer than 25 full-time workers).My former social life was built around fixing, riding and racing bicycles. That life is pretty much over now, and I have yet to find another place to belong socially. A few friends from my bicycle days are still in touch, but I cannot make appointments to hang out with them because on the day of the appointment I may be stuck in a bathroom or too fatigued to get dressed.
So for now I try to stay in the present. My partner has been amazing, and tells me she knows I'm doing what I can to bring money in; she also knows that going forward she'll likely be the primary breadwinner, which is a switch from when we got together 18 years ago (when I had steady work in the bike industry and she was a freelancer).
Some days are harder, some days are easier. I try to stay grateful for all I have in my life, the people and the home I live in and everything else.
But now and then, I'm afraid to hustle for gigs because my hands will flare painfully and I can't play my guitar for days on end, and I have NO idea when it will subside.