Living with M.E.

At 55, I have had M.E. since a bout of Glandular Fever (Mono) age 16. Historically M.E. has been dismissed as a psychological issue. The lack of acknowledgement or support from the medical profession and general public has given my entire adult life a nightmarish quality. Knowing something is very wrong but being consistently told ‘it’s all in your mind dear’ is mind-manglingly frustrating.

While I was too ill to work in my 20s, I recovered enough (to 50% normal energy) to work through my 30s and 40s – sleeping when I wasn’t working. In 2016 I relapsed badly and now have about 10-15% of the energy of my peers. The biggest loss for me is not being able to do my work.

Ironically it was that work which caused the relapse. I loved it so much, I pushed through the increasing exhaustion every day. Ignoring signals from my body and even trying to build myself up with exercise. Now I know that exercising past my energy limits was further damaging an already broken system. It was inevitable I would crash and burn.

M.E. is like having a job I never applied for and didn’t want. No, it’s worse. It’s 24/7 – no breaks, no weekends, no holidays and I feel ill all day, every day.
My quality of life did improve in two ways since relapsing. M.E. is becoming accepted for the physical illness it is and I now have a doctor and a consultant who have helped considerably with symptom control. Along with that I no longer have to hide how exhausted I am or make excuses for all the events I can’t attend. Huge relief.

Now stable, I have 2-3 good days a week. On those days I can do a big thing, like the grocery shopping, or a couple of hours work or socializing. I have 2-3 bad days a week also. On a bad day I’m pasted to the couch, weak as a kitten and can only manage eating and getting to the bathroom a few times – in pain and moving like a 90 year old. On medium and good days I get my housework done in small amounts spread over the days.

The daily basics of living take most of my energy. However I claw back about 8 hours a week by being fantastically organized and by sacrificing things – like a daily shower, how I miss that! My 8 hours a week of disposable energy – if you will – has to cover work, social life and hobbies. Over the years I’ve learned how to maximize every scrap of energy by putting it into my highest priorities. I choose – every day – to focus on what I can do and enjoy, and not on what I’ve lost.
When I’m out in public or on zoom I look normal. Be kind everyone, you never know what they are dealing with.