Like a lot of autistic people I have a unusual sense of pain. I find pain very difficult to identity and communicate about.
One of the side effects is that I often don’t know I am in pain but I do notice the effect of pain on me.
If the pain is bad enough I will find it hard to remember the names of things, speak more slowly and get really grumpy. When it is really really bad I find it hard to read and write. In short, high amounts of pain makes me very impaired. I can’t work or play if I am in pain.
Part of my experience with my spinal cord injury is an extreme sensitivity to pressure on my tailbone (pain I experience as dark grey) and a new pain which seems to be nerve pain. It’s constant at a low level, but will sometimes flare and become very difficult.
Pain is a huge barrier to my autonomy, productivity and thriving.
In engineering my life I’ve started to move my focus to pain management.
It’s early days and we have a lot of tools to explore, but more or less I need to engineer my life so I can get from the start to the end of the day without tailbone pain or any nerve pain flares.
Once I can do that, I can start adding in activities. Working out how to do each activity without being in pain.
I’m trying to view these things via an engineering and functional lens.
I see being autistic as part of my identity (I wouldn’t be me if I wasn’t autistic) but impairments like my vision, walking and pain are not part of my identity.
I can use tools to remove barriers relating to either being autistic or my impairments. For example glasses are a tool to reduce vision related barriers.
I already have some good tools for pain management. My bed and the buggy are exceptionally comfortable. I can also be comfortable on my sofa in two different positions. We’re discovering more options everyday.
When I have got my pain management under control, I can then start working through the physio and other life changes.
Not being able to walk or sit-up is the most noticeable impairments. But the biggest barriers in my life are pain related. So we’re going to fix those first :)
