Forgotten faces of ME – ‘harrowing’ inquest, constant agony, and urgent call for change
https://www.mirror.co.uk/news/health/forgotten-faces-harrowing-inquest-constant-33375968
Posted by Lunabuna91
Forgotten faces of ME – ‘harrowing’ inquest, constant agony, and urgent call for change
https://www.mirror.co.uk/news/health/forgotten-faces-harrowing-inquest-constant-33375968
Posted by Lunabuna91
6 Comments
Still trying to get my own diagnosis. The constant agony is real. I’m losing weight, I can barely walk to the shop some days. I used to be able to do 60miles on a mountain bike, now I’m mostly in bed, or struggling to walk my dog around the block. My heart hurts, my legs hurt. The NHS is great and all, but it is failing in many areas.
ME is very very real and yet too many physicians still don’t want to open their eyes to the research. The only thing that is going to change their minds is the day drug companies provide a treatment.
For those of you non sufferers out there who want to know what ME is like daily, pop to your local animal feed merchant and buy a bag of chicken feed. Corn is about the right weight. Drape it over your shoulders and go about your day. Just do normal things. You’ll get used to it after a while.
Now for the true experience, have people constantly tell you that you just need to pull yourself up by your bootstraps and get on with it. You’re just lazy, or unfit. Just do some exercise.
The last time I was in therapy and being assessed, my consultant said something along the lines of *”we need to be careful as you are in ME territory now”*
I’m not entirely sure how to take that. I’ve been in and out of therapy probably every 3-5 years for a few decades now. I do all the good things but just slip away and find myself back to a *what’s the point* mentality, I start turning down any social activity and crawl back into my shell. No interest in most things. Living rather than being alive. I’m well accustomed to it but sick of it too.
I’m not sure that I have ME. I’m just aware that there’s something not right and that particular review really sticks with me.
Honestly, fuck doctors. Anyone who’s not a complete moron can see this is a real condition. It boggles my mind that there’s still such resistance from the medical community and such an absence of care. It’s not alone – sadly, a lot of serious and chronic illnesses still don’t have the recognition or treatment options they deserve – but the fact that you can literally die of ME while so-called ‘professionals’ debate whether or not you’re faking it is fucking mental.
There needs to be so much more accountability around this. They should start by charging the doctors involved in this poor girl’s ‘care’ with murder by proxy.
I have this disease. I got it from developing mono at the age of 27. I’ve been completely bedridden for 6 years, only able to get up twice a day to use the bathroom. This illness steals everything from you, and then you lose friends and family due to disbelief.
We desperately need a “rebranding” so to speak to change the way people view this poorly understood disease. It’s not simply about being tired. Like Whitney described, it’s more like full body shut down. I used to be a prolific artist and was in college studying to be a nurse. Now I require palliative care and will likely never paint again.
Being in a hospital as a severe ME patient is my biggest fear. I’ve made a promise to myself that no matter how bad things get, I will never admit myself. Doctors have done so much damage to me over the years that I would rather die than try to seek help. We desperately need more funding. I’m tired of my friends dying.