Life with M.E. – A Post for M.E. Awareness Week

This is a post written originally for PosAbility Magazine, published 11th May 2020 to coincide with M.E. Awareness Week. I had very much intended to write a separate blog post for M.E. Awareness Week but with the extra energy levels needed to keep our toddler entertained during lockdown, and the subsequent crashes, worse than normal, I simply don’t have the energy for other things I’d love to do.

To read the original source of the post below, click here:

M.E. has turned me into a person I could never have envisaged. I used to be fit and (relatively) healthy. Walking several miles at a time was a regular occurrence, even with a new-born baby in tow.  

At the start of my M.E. journey I refused to think this would affect me and continued to push myself, thinking I could just “think positively” through it. “Good vibes only” was a phrase thoroughly ingrained, my inner ableist refusing to accept the reality of a life-changing condition. 

Well, suffice to say, it didn’t work. I gradually got worse. 20 metres became my walking limit. I couldn’t cook. I couldn’t keep up with my then-2-year old. I realised at that point something drastically needed to change. I hired my first electric wheelchair and haven’t looked back. 

M.E. is a complex condition, characterised by one of its main symptoms: post-exertional malaise. In short, this means an exacerbation of symptoms following even the most of simple of exertions. Calling M.E. “chronic fatigue” is an insult to those who suffer. M.E. is not simply “being tired all the time”. It is living with flu-like symptoms and having to run a marathon daily. It destroys a person to a skeleton of who they once were. Alongside the typical symptoms of muscle pain, unrefreshing sleep, difficulties with concentration, sufferers have to advocate for themselves, in a world that is rife with misconceptions and mistreatment. 

I’ve personally come to terms with mine (and my family’s) life with M.E. but it still hurts. It hurts to have lost the career I worked so hard to build. It hurts to not be the mummy to my daughter I want to be. And most of all, it hurts to have lost the hobbies that I loved so dearly. 

But this is life now. Life on wheels is the way forward, and I won’t look back. 

Until next time,

Soph x

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