melle_chantilly

I'm doing good these days. I've been knitting and spinning almost with no restraint, taking only a few breaks when my shoulders start aching. I feel like I'm on the right track, recovering faster than I thought possible. Recovery isn't the right word though. I'm learning to deal with the new forms of chronic pain well, taming my body and regaining my mobility and ability to make things with my hands. It feels amazing after so many sterile months.

I'm planning the next milestones, in terms of physical achievements. The next goal is going to PMD in January with Clémentine, and enjoying myself fully. Travel will be longer than what I've done for the past year, so that's what is stressing me out the most. If it goes well, the next step will be festivals. I'd love to either go to WGT with Clémentine or Maschinenfest with Math. I know I'll most likely never be able to enjoy festivals like an able-bodied person, since right now one concert is already a feat in itself. Standing still for more than an hour is very painful, still, and often I have to skip opening acts or leave early. PMD will already tests my limits quite a bit, actually. But I want to do it, and it'll be just like the usual, but bigger. If I have to go sit in a corner in the middle of a show, to let the pain rush over me, that's what I'll do. If I can't watch the show, I still get to hear it and I have to accept it's enough.

I'd love to figure out how starting to work again fits into all that. I miss working so much. Just doing something. Anything. I'd love to earn some money, of course. Money is tight right now, but I get what I need, I can manage with not much, and I don't get more than what feel I deserve (I'm so not done unpacking that). The primary reason I miss working is that I am deeply ashamed of not working. I feel like I can't rightfully justify my existence. I live a life of absolute luxury : I can do what I want of my time. But it feels so wrong. I feel like a fraud, that disability is too big a word for me. It most likely stems from the fact that my parents never supported or even acknowledged my illness, ever. I was told that it was all in my head by my mother, and when I mentioned any type of symptom, chronic pain, fatigue, she'd nod and say it was the same for her. Of course, everyone lives with tiredness and some kind of pain, so why am I the one to get special treatment. I can barely breathe typing this.

I've been thinking of what kind of job I could do. But I don't know how much I can do. I only started living again once I quit working (and after over a year of recovery). Pushing myself to work destroyed my health. I was in so much pain every day that I had to drink to make it go away. I was so tired we had to cancel our holiday trips more times than I can count because walking through an airport was not an option, when I couldn't even go down a flight of stairs. The last concert I went to before this year was 5 years ago. I had to sit, because standing was too difficult. I had to beg for a seat. I stopped giving all the energy I had to work, and I allowed myself to enjoy music again, to go out, to parties or just outside, and to have sex.

I still keep feeling fractured and incomplete, without work. It is a stupid standard I hold only myself to. People can work or not work, it is none of my business and I don't care. I firmly believe intellectually that we shouldn't define people through their economic value in a capitalist society. But I can't help feeling alienated and overcome with guilt. The alienation is also physical. I feel isolated from people, and it is quite natural when you consider I spent most of my life working in direct contact with the public.

My thoughts tend to go to freelance work first, trying to find new ideas. I did start two businesses successfully from the ground up before, so it makes sense. But wouldn't it be a smart idea to get myself back into the system at some point ? As an unemployed freelance, I am entitled to no benefits. I get dizzy when I think about retirement. And I know if I return to being self-employed, I could spiral into work addiction very fast again. I've been trying to think of places and jobs I could get hired for, a few days a week. But most jobs as a sales person would probably be way too physical, not to mention waitressing. It's a bit of a dead end for now. I'll keep looking. Typing all this was exhausting so it's just going to end a bit abruptly like that. If you read it, thank you.