It's story time kids. Coming up on May 12th is "ME awareness day"

[What's ME/CFS? Myalgic encephalomyelitis/chronic fatigue syndrome: there are various names. For a quick summary of the condition, you can follow this link: about-me]

My story

I remember being in 6th form college and my teacher said "Pick your head up off the desk! If you can’t stay awake in my class, go home." I had climbed a set of stairs to get to that classroom, having collapsed on them halfway up. I felt stunned. I was there, I was listening, I was even taking some of it in in my dizzy, fuzzy state. I said nothing in return because noone had named it ME back then, not even my doctor. I was told “it seems to be post-viral fatigue” and left to fend for myself. I could hardly walk, I slurred my words, I ached, sleep was never refreshing, I felt drunk ALL of the time without touching a drop (sounds way more fun than the reality - imagine feeling like that every waking moment and it not being in your control). I had gone from being full of life, a healthy 17/18 year old, to hiding away, robbed of all my energy. I never got back to that level of energy again. I missed out. Luckily I had a supportive home. I remember the first time I climbed the stairs, months later, mum and dad both cheered! There was no medication, no explanation for what I was going through. It was just a year of muddling through as a family and hoping for a recovery.

Fast forward 13 years and 2 relapses. Average recovery period per relapse: 1 year.

In 2017, relapse number 2 kicked in big time. This time I’d seen it before, I realised this was a pattern and I tried not to despair. It was so bad that I was collapsing every day, couldn’t go out in public alone, couldn’t work, couldn’t speak, couldn't sing, couldn't cook or have a bath safely, couldn't drive... you name it. I have improved so much since then. Thank God. I am still recovering.

So in 2017 I was finally diagnosed and offered support through the NHS, and perhaps most importantly I was given language to explain my symptoms to those around me. The weird things my body does are no longer alarming and unexplained. More people have heard of ME now, they know to make allowances and it makes the world of difference.

"Have you tried....?"

This is a classic. I have learned after many painful conversations, that advice from well meaning friends does more harm than good. It is not my job to “get better.” I have a lifelong neurological/autoimmune condition. I see specialists whose job is to help me. I have friends with ME, who understand and who help me. I've read all the research and will continue to do so. My job is to learn to live my life to its fullest and brightest, no matter what that looks like. It will differ from day to day and from year to year. That’s for me to navigate.

So my friends, why am I sharing this? 

I am sharing because this is still a very misunderstood condition that many people haven't heard of. There is no cure. There are millions of sufferers still undiagnosed. (For me it took 13 years, several trips to A&E and losing my independence for me to receive help). Research into this condition, as well as into FND and fibromyalgia (often comorbid) is SERIOUSLY underfunded. There is a campagin called millions missing which aims to fight this.

#millionsmissing - a global campaign

Thank you for taking some time to read about my experience with ME/CFS! You have already helped by doing so. Next time someone mentions it, you can help to spread a better understanding and supportive attitude for those of us who suffer. I am lucky that I only suffer mildly/moderately. Others have it far worse. And if you want to go a step further - to get involved in campaigns to increase medical funding and to increase awareness - please do so! Because we are still living in hope of a cure one day.