Potentially useful?
I've been stuck in limbo for a long time now, but during that time have become not only accustomed to my physical differences. But, I think the experience of them has complimented my continual progress as a person.
I see a lot that people feel down regarding their MS and although my solution is in no way perfect (most good solutions aren't) - I figured it might be useful to detail some things I did, and continue to do, that help me. This post isn't about methods to combat fatigue or pain, its rather about the more conceptual problems.
My impairment, for context, is very visible as I am a wheelchair user, with a movement disorder (believed casual to MS- but not yet proven) so a lot of my fears come from the idea of being outside, and seeing people see me. An artist called Neil Marcus, who has generalised dystonia wrote a piece of work in 1994 called 'Storm Reading' (https://vimeo.com/26988933) - the humanity he managed to capture in this work made me feel seen, less alone and confused. I must have watched this (sadly incomplete) version of that work more than 20 times.
Over the course of my changing mobility, speech and physicality I have read a lot of books. Some are more helpful than others, but I found 'Crip Theory' by Rob McRuer (https://www.amazon.co.uk/Crip-Theory-Cultural-Queerness-Disability/dp/0814757138) extraordinarily helpful in challenging me to really dig deep into what I thought about my impairment and the context in which I exist. In general, disability studies papers from http://dsq-sds.org/ helped me have a known understanding of what it is be a disabled person, as well as giving me jump off points to learn about more specific things like, The Social Model of Disability.
Interaction with disability art also allowed me to see disabled people being productive and happy and provocative. The Unlimited Arts festival (https://weareunlimited.org.uk/) is a fantastic source if you want to go and see, live, disabled performance work- and NDACA (https://the-ndaca.org/) is a great online resource.
What helped me 'come to terms' with my seemingly progressive-probable-MS-but condition is taking it out of the framing of disease, and placing it in the framing of just part of my experience as a person. Just conceptually, obviously management and doctors still abound - but, viewing it as just a thing that's happening, and getting involved even mentally with strong work in disability studies and art made me into a person that I could like when I rolled past a mirror. I just figured it might be of use seeing which sources in specific helped me. The methdology here is generally based in reflection of experience back - not necessarily the same impairment, but a lot of the fears, the othering, the stigma run across the community.
@wheelrunconflux , thanks for sharing the details of your journey with us. 😉