“Every moment of everyday is a struggle. Your chest muscles are too weak to breathe without constant effort. Rolling over is more exertion than anything I felt when I was a gymnast, but if you don't do it you risk bed sores…”
I decided to describe Very Severe M.E. because I’ve been there and the people who are still there are generally too ill to describe it themselves.
And, because it is Very Severe M.E., it shows most clearly what an absolutely inexcusable travesty it is that myalgic encephalomyelitis does not get enough research funding and does not get taken seriously.
What a human rights abuse it is that people are left to rot in unimaginable suffering. There are people who had Very Severe M.E. without getting PTSD (Post-Traumatic Stress Disorder) – frankly I don't know how.
It is incessant, inescapable torture. You are trapped. Completely powerless. You're in agony with countless unbearable symptoms. You are frequently paralysed, always too weak for anything but the smallest movements.
Every moment of everyday is a struggle. Your chest muscles are too weak to breathe without constant effort. Rolling over is more exertion than anything I felt when I was a gymnast, but if you don't do it you risk bed sores.
“Swallowing is incredibly hard, and you may need a feeding tube. Peeing and defecating are likewise mammoth tasks and you may need a catheter or enemas or both.”
Your body is not strong enough to maintain itself.
You must monitor yourself constantly to work out if you need to go to hospital. Basing this on how you feel is no good because you constantly feel as if you are dying. You must learn normal versus worrying vitals, along with other signs.
And believe me you absolutely do not want to go to hospital unnecessarily, because when the noise of someone breathing or a book light is unbearably painful, hospitalisation is a literal nightmare. And it will make your M.E. worse, long after you return home.
You're unable to communicate properly or at all. You are routinely disbelieved, gaslighted, neglected, mocked, and too frequently outright abused.
I have made my way out of Very Severe M.E. and into lower-end Severe M.E.
I still lie flat 24/7. I struggle with communication, light, noise, and movement. I have difficulty swallowing.
I've stopped looking at the M.E. severity scales. It's pointless, I might still fit the bottom 1%.
I am no longer on hospital watch. My symptoms can be unbearable but normally I can cope. I can get enough water down without micromanaging my spoons.
Believe me when I say that Very Severe M.E. is like a whole other illness.
If I were to catch Coronavirus I could be back there, especially if it gets bad. I was lucky to get out of Very Severe M.E. the first time.
I had a discussion with my dad about DNR (Do Not Resuscitate). About giving my ventilator to someone else. But I agreed not to refuse care because there is promising research happening now, and there may be treatment for M.E. in the next few years.
Please raise awareness about M.E. We want treatment equity for the #millionsmissing with this disease. If nothing else share awareness so suffers at least receive compassion.
“Spoons out. Love, hugs, and spoons to you all.”Ruth Braham.
The Real M.E. Photo Campaign
Following a fantastic response to our original appeal for your ‘Real M.E.' photographs, we would like you to please send us some more.
We will endeavour to use every photograph, often with quotes taken from your stories, on the ME Association website, ME Essential magazine, social media, leaflets and other literature, to help raise awareness.
We will not use your photographs in the news-media, external newspapers or magazines, and we will preserve your anonymity, unless we seek and obtain your approval.
This continuing campaign is having an effect on the removal of inappropriate ‘stock images' that appear elsewhere on the internet and in print.
It has also helped to demonstrate the true extent of M.E. and that it can affect anyone – any age, any gender, any ethnicity – at any time.
Please send your photos, with a 200 word maximum summary of your details and current situation, to: Feedback@meassociation.org.uk
The ME Association
Please support our vital work
We are a national charity working hard to make the UK a better place for people whose lives have been devastated by an often-misunderstood neurological disease.
If you would like to support our efforts and ensure we are able to inform, support, advocate and invest in biomedical research, then please donate today.
Just click the image opposite or visit our JustGiving page for one-off donations or to establish a regular payment. You can even establish your own fundraising event.
ME Association Registered Charity Number 801279