Thinking of a future with a disability

Today, I stayed in bed from midnight until 4pm, resting, sleeping, and reading. Rose came home to me after her night shift and it was lovely to have her company, sleeping beside me. She turned up with a bag of groceries and chocolate milk, and hugs for her very tired and overwrought girlfriend. Then friends came round for dinner and brought a big bowl of home made pasta with them. Rose made a salad, and I washed all the dishes from the week and made homemade soft serve icecream. We played cards. By the end of the evening, I felt almost human. It’s so regenerating to be the recipient of such kindness. Another friend gave me a massage earlier in the week, and I was fortunate enough to be given a bunch of free tickets to go and see Cavalia, an amazing acrobatic show with horses, so I went with a bunch of friends and family. It’s delightful to be able to be generous with good fortune, and to have such caring friends who are likewise generous with their time and love.

I’m also reminded that pain management needs to be more of a priority for me with me work. The extra work I’ve taken on lately has been wonderful, but I’m not coping well with the pain it creates. High levels of constant pain wear me down emotionally, I become easily distressed, teary, anxious, and depressed. I need to be more assertive about predicting it and doing things to manage it.

I’ve been thinking a lot lately about having fibromyalgia and how it impacts my life. Weeks like this one, I realise that I am not like other face painters or small business people. I have to close bookings when I’ve reached a certain number of bookings in a week, not because I’ve run out of time, but because I’ve reached my limit of how many hours I can paint and still manage my pain and energy levels. This is hard to face. I’m a small business owner and artist – with a disability. I need to remember this and work around it, not throw myself against the glass wall of my own limitations and leave myself so ruined, and so vulnerable to other people’s misperceptions.

Likewise, I’ve been giving a lot of thought to what kind of mother I would be. There’s many things from my childhood I don’t want to replicate for my kinds – chronic loneliness and alienation, unaddressed trauma, shame… but there are many things I loved and do want to bring to life for my kids. Amazing birthday parties, brilliant creative play, superb organisation skills, learning to care for our home and belongings so we didn’t live in the kind of broken down home that so many other low income children do… there’s a wonderful legacy of fairness and play and adventure I want my kids to experience.

And I have fibro. I can’t live up to it. I can’t be the kind of mum I want to be, put in those hours, with that dedication and passion and effort. I’m grieving this. I have to find a new idea of success, new dreams about what being a great mum might look like for me. I need to reach out to other members of the disability community who are parents and find a path I can be excited about. I need to write an exciting and hopeful future around my limitations.

This is a big shift from my previous ideas that I would keep looking after my health until it was better, get full time work, build some strong financial foundations, and then have kids. I might not ever be able to work full time. I need to work out what being a mum would look like when I’m living in public housing, on welfare, with chronic illnesses, and how to engage that dream in a way that makes the most of what I do have, of my skills and passions and wonderful friends, and limits the bite of poverty, sickness, homophobia, and all the other risk factors I can’t change.

So, tonight, I’ve been thoroughly loved up by some of my very important people. My body is still tired and sore, but my head is clear, so I’ve used the time this evening to tackle another box of paperwork:

I’ve recycled an entire box of stuff I don’t need anymore;

packed another box with things that just need to be filed, and created a small stash of things that need urgent attention. I’m very proud of myself. And now, for bed, to sleep, perchance to dream.

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One thought on “Thinking of a future with a disability

  1. Addressing pain managment to enable oneself to walk gently and compassionatly along the pathway of ones dreams id challangening but also has thrichness of living in the present and working with what u can and what u have at the time to the best of ones ability with love and gentlnesss. this is something I continue to learn and work with t acheive my goals towards my dreams.


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