It’s M.E. awareness month, and we’ve been taking #ThisisME selfies describing how our M.E. affects us.
Taking part in this campaign and sharing other people’s #ThisisME selfies has made me reflect on how far I’ve come but there are so many more people still experiencing severe M.E., unable to do everyday things for themselves and being house- or bed-bound.
My blog post for Action for M.E.’s Hidden Faces of M.E. campaign 3 years ago, Out of sight: Out of mind, described what severe M.E. was like for me.
Here’s a snippet:
Eating was also absolutely exhausting. I had to have my food cut up for me because I wasn’t strong enough and this felt so undignified. Lifting a fork to my mouth, chewing and swallowing, was such hard work that I needed to take lots of rests. It could take 45 minutes just to eat a small meal.
A healthy person does more by the time they get to work on a morning than I managed to do in a week. Normal activities like seeing friends, going to work, and everyday things like going to the supermarket, were out of reach.
Luckily I’m loads better these days as long as I’m careful and don’t over-do it. I look well again but I still have M.E. and have reached a sort of plateau in recovery. It’s taken many years to get to this point but with time, support, the right advice and adaptations I now manage to enjoy life even if it’s a scaled-down version. I find that a positive way of looking at my ability: it’s just a mini version of a well-rounded life, rather than seeing my illness as meaning I miss out on a normal life.
I’d like my gradual improvement and outlook to give hope to other people with the illness, as well as raising awareness in a positive way about M.E., and I’ve been overwhelmed by the response on social media from friends, family, other health professionals and total strangers.
If you know someone with M.E., read about it on the Action for M.E. website and try to give them all the support you can, as it can be a lonely illness. If they’re housebound, perhaps you could visit them or send a card. If they’re able to leave the house perhaps invite them to something, asking them what you can do to make it easier for them to join in.
You can also donate to Action for M.E. via my JustGiving page to help them support adults and children with M.E. and their families: https://www.justgiving.com/fundraising/emily-beardall