Superhero Machine Feels

I was in a pretty depressive funk recently about my body and disability, about how i’m never going to get better, about how my legs hurt all the time, about how I’m always tired, and you know we live in a world that tells us the way to deal with these feelings and issues is to Think Positive! Dont Let It Get You Down! Look at this person who has a disability that is nothing like yours but who can do this thing you can’t! And like we know, or we should know that it’s crap but we are saturated by insidious drip feeding in regards to disability and how people should feel and react to their disabilities.

So for a while I was asking myself how to feel better about my life, my body and something clicked in my head and i thought “fuck it what I really need is a wheelchair” it was kind of both a slow burn and and instant realization.
I’ve been thinking about my body a lot lately, about its fatness, its disability, its visible queerness

I’ve been trying to work out how to improve my relationship with food without thinking about it as losing weight or changing my body to fit mainstream beauty standards, or triggering my disordered eating. I asked around and one of my friends lent me “Lessons from the fat-O-sphere” and I liked it a lot and it has helped me with my food issues but it totally, unexpectedly helped me with a lot of my other body issues, because it’s basic message is “your body is ok, you don’t have to apologize for it.” For the first time I felt that I don’t have to feel that it should be smaller, less clumsy, more feminine, have more energy, do all the things bodies are “supposed” to be able to do both physically and socially. I thought I was living as if I believed that but I’ve always felt “Too Much” Too queer, too crippled, too clumsy, too socially awkward, too sick, too crazy, too ungrateful. But this book made me realise that it’s okay to be as I am and that includes using any kind of mobility aid i need to help my life work the way I wanted regardless of what anyone else thinks about it.

So I ordered the chair and between that time and being delivered my head and emotions were all over the place, there was a lot of “but what if I am giving up? What if I’m not sick enough? What will everyone else think? But there was a lot of anticipation and excitement as well, and when it came and I took it out! OH MY GOD! it makes me so happy. I’ve been places I haven’t been for years because I didn’t know if my legs would give up halfway and even if they didn’t I’d be paying for that walk for the next three days. Using a self propelled wheelchair is really hard work and its going to take me a while to build up the muscles in my arms, and learn to maneuver in small spaces and get up kerbs properly, but its still so much easier and less painful than walking and it makes me realise how much of my constant tiredness was about walking, standing, balancing and living with the pain

A lot of my friends live in the nearest big town rather than the tin-pot valley town I live in and it makes me feel less Isolated already because I know getting there and back will take a lot less energy and be a lot less stressful with the chair.

I am very, very excited about this, much more than I thought I ever could be


Days without spoons

sometimes I wake up without spoons, sometimes because I exerted myself too much the day before, sometimes because I’ve not been doing enough self care, sometimes just because. And no spoon days are very, very boring, they mostly consist of watching reruns of crap tv that I’ve already seen three times. I need to find ways of doing things that are interesting, amusing, diverting, self caring, but that doesn’t take a lot of body effort or brain power.

a) Books, my house is full of books, but they are all books that take more brain power than I often have on no spoon days, so I need to start borrowing books that are easy light fiction

b) bath stuff, I’m trying to learn to make my own bath products which is fun and good for the environment and such but somedays I’m just going to want some pre prepared stuff to chuck in the bath

c) use dry shampoo instead of washing hair

d) one of the things on my forty by forty list was to learn about classical music, so listening to Radio 3, classic FM. podcasts, and stuff on youtube. I probably will not take in all the information because of brain fog on spoonless days but at least I get to listen to nice music

e) netflix

f)radio comedy

g) if the weathers nice sit or lie outside in the sun

h) always have a frozen meal that can be microwaved in the freezer for these days