Liverpool Echo: Disease like 'living death'.......... 11th March 2018

[Countrygirl]

https://www.liverpoolecho.co.uk/news/health/disease-like-living-death-means-14394864

Disease like 'living death' means mum can only see toddler son a few minutes a day

'He just wants to be with his mum - I'm so full of guilt. I'm supposed to be his mum and I can’t even see him'

A young mum feels like "living death" because of a debilitating brain condition that means she can only see her son for a few minutes a day.

Bed-bound Sophie Cooklynn, 21, from Bootle, said it was heartbreaking that severe ME had made her toddler Lucas' touch and voice too painful to tolerate.

She is forced to wear dark glasses and earplugs and struggles to move her body at all, as it triggers pain "like you've been poisoned".

She decided to speak out about the reality of her condition as she said some people saw her as "lazy" and failed to understand ME.

 

[Hip]

I just saw this thread title, and thought that would be good name for ME/CFS: living death syndrome.

It would certainly nicely characterize the severe and very severe levels of ME/CFS.

 

[perrier]

I just saw this thread title, and thought that would be good name for ME/CFS: living death syndrome.

It would certainly nicely characterize the severe and very severe levels of ME/CFS.

Yes Hip, I agree with you. I have and do call it that to friends: a living death.

 

[RWP (Rest without Peace)]

Yes Hip, I agree with you. I have and do call it that to friends: a living death.

Yes, @perrier. Same with us.

RWP + PWR

 

[percyval577]

I just saw this thread title, and thought that would be good name for ME/CFS: living death syndrome.

I too felt immediatly attracted. But I didn´t recognize anymore that this would be a good name.

A good name is most important for our sake, and it should indeed outline how it can feel. LDS. Congratulations to the inventer (here a healthy person I guess). Congratulations also to RWP, one above.