Living with disability – a personal journey

Living with disability – a personal journey

I suppose, I was well into middle age before I found that I was living with a disability. Prior to that, as with most folk, whenever I came across someone who had an obvious disability, e.g. in a wheelchair or blind, I would have made allowances, but would have been less responsive if the disability was hidden or not obvious.

Sometime in the mid 1990’s, I began to experience a disrupted sleep pattern and extreme tiredness during the day. At the time, I was working in an open office environment and sometimes I would try to sneak off to have a five-minute cat nap when, as often happened, I was overcome with tiredness. It was not something I shared with others and those around me were not aware of my struggles. The most concerning aspect was wanting to fall asleep whilst driving. It took a while for the medics to diagnose I had sleep apnoea and then I found it was eminently managed, using a CPAP machine.

In the early 2000’s, I begun my third career – as a community worker. I helped to start a project that helped people with mental health issues. Mental health these days is increasingly being seen as a disability, albeit often a hidden one, but then it was one that came with a stigma. It was at that time I was exposed big time to the world of disability and the need for appropriate action when dealing with any sort of disability. Pertinent, was from a young age, I had my own mental health issues, namely depression, and among other things my experience was something I brought to the project.

In recent years, I have had more than my fair share of ailments, many of which can be classed as disabilities, e.g. diabetes and loss of hearing. The biggie is 3 or 4 years ago being diagnosed with Inclusion Body Myositis (IBM), which is a degenerative muscle wasting disease. It means on a cold day I may have problems turning keys and, on any day, opening bottles and cans. Climbing stairs, let known hills, can be problematical and IBM manifests itself in all sorts of ways that once would have been unimaginable.

I am where I am and, while fearing losing my marbles, the fact I am able to write this suggests I am still compos mentis. I would say, the best approach to living with disability is to focus on the ability part, not to expect too much from others other than basic consideration when one’s disability is a factor, make allowances for those who don’t do so, live each day as it comes and to be thankful. For those reading this, besides basic kindness, think that those you interact with may be living with a disability and make allowances for this.    


One thought on “Living with disability – a personal journey

  1. Melanie Biddle says:

    Hi john,

    I read this latest blog with interest as I too am struggling with overwhelming tiredness, or should I say sleepiness, as often I don’t necessarily feel tired until I find I’m fighting to keep my eyes open. It started with falling asleep quicker at night to creeping in earlier through the day including struggling to keep my eyes open when driving!

    In your experience were you unable to sleep at night?/were you aware of disturbed sleep? Did you need to be observed sleeping for diagnosis?

    Thanks again for your thought provoking input.

    Looking forward to seeing you all next Sunday!

    In Christ Melanie

    Sent from my iPhone


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