Humans of ME/CFS
My ME story starts at a very young age of 13.
It was Autumn and I was knocked out with a virus that left me feeling like I was trapped under metal. I was bedbound for four days. I couldn’t eat. I couldn’t drink. I couldn’t move.
After 4 days, I found the strength to get up and use the loo. I collapsed on the bathroom floor in the early hours of the morning. I was drifting in and out of consciousness. The virus was never diagnosed… until five years later.
At 18, my symptoms began to show. I was experiencing nonstop tiredness for three months before I realized something wasn’t right.
My mate advised me to go down the doctors to get checked. Appointment after appointment. blood test after blood test. Nothing. No signs of iron deficiency, no sign of any sort of deficiencies. Then, one more test sealed the deal. I tested positive for glandular fever virus.
In November 2013, I was referred to a ME/CFS consultant. She initially thought it was Fibromyalgia, so yet again another consultant. The Fibromyalgia consultant was satisfied it was not Fibromyalgia, but in fact, ME/CFS. Then, it was back to the first consultant.
At the age of 18, I was officially diagnosed with ME/CFS. And in all honesty, the first year was the hardest. Coming to terms with the diagnosis, working, and studying at college was all too much to cope with at one time.
I am now 22 and I can’t handle a night out. Within a few hours, I’d be tired and only wanting cuddles and sleep.
This is no life for a young person. it’s no life for anyone. And besides the tiredness, there are arrogant people who say it’s “fake” and a “figment of the imagination”.
I’m sharing this to say that it’s very much a real illness. Just because you can’t see it, doesn’t mean it doesn’t exist! I’d welcome any “normal” person, anyone who doesn’t know what it’s like, to experience my life and all the other millions of sufferers. We all have different severity levels. In a way, I’m lucky to be experiencing the tiredness side. For some people with severe ME/CFS, it’s disabling.
I can’t imagine having it at its severest.
For the other sufferers, I just want to say that I have the utmost respect for you.