Quality of life when you have severe ME

I'm wondering how much quality of life it is possible to have with severe and particularly very severe ME. 

 If you visit severe ME online support groups you will see a lot of people needing support for feelings of desperation and despair. You will find people who are lonely and who are suffering deeply from both the affects of symptoms and also the social and emotional effects of this illness; but is it possible to have true quality of life with severe ME? Is it possible to be happy?

A large part of awareness campaigns centre around how awful it feels to have this condition. I don't think that's always helpful. I think it is definitely useful to do that to an extent when pointing to the medical and social care abuse we suffer but, does it hinder our acceptance as a community? People with various other conditions can have pride in their conditions so why can't we? Is it truly just down to suffering?

When I had severe (rather than 'very severe') ME, I definitely had some quality of life and was often happy.  I knew that I could find happiness even if I stayed at that level forever. Most of why I desperately saught improvement was to gain back the ability to play my trumpet.  I could deal with most other things.  Now that I am more severe, I dont know if I could live at this level and be happy - but it's so hard to judge when there are so many external factors affecting my quality of life. With this level of physical suffering maybe I could have a decent quality of life. Maybe it's the mental suffering from social services and lack of medical support that is truly affecting my quality of life. Question is, with an illness so deeply entangled in medical and social abuse and neglect, can we even consider the illness in isolation?  I think truly what makes ME so awful is the combination of how the condition affects us and how we are treated.  

When we talk of the elusive 'hope'; what are we hoping for? A removal of symptoms or an end to the abuse?

Guilt, grief and self doubt

Guilt has been somewhat of a constant companion throughout this illness.  From the niggling doubts at the back of my mind whenever I rest, to the all encompassing sense of shame and failure after meetings or appointments with social services or doctors.  It's always there - doubts about whether I'm doing enough to stay well and independent; guilt that I'm taking resources away from others.

For me, this seems to have been tied in quite strongly with grief.  Feeling ashamed and guilty about everything is a convenient way of ensuring I never accept the true reality of my impairments and illness.  But it's also about control - the control of others, namely social services, the NHS and the DWP.  They act as though if only they could grind me down enough, I would stop fighting for my rights.

Sadly, it's been working.  The main reason I've not written in this blog in so long is because I've felt as though nothing would be good enough, political enough, eloquent enough - because I've just not been well enough to write as well as I used to.  I guess I thought people would judge me - but this is a blog, not a holy book.  People do not need to hang on to my every word.

I had a realisation the other day as I was heading through a shopping centre in my powerchair.  There is no chance on Earth I would be able to walk even 1% of the distance I had in the short space of time I was there and yet others were strolling around casually.  I then thought back to my own guilt when I was given an NHS powerchair.  I felt guilty because I can walk 2 metres... occasionally.  If I'm feeling guilty enough I might even walk 5!  Looking back, this just seems ridiculous!  You can't survive without a wheelchair whilst only being able to walk 2 metres occasionally!  My flat is much bigger than even my forced sickness inducing 5 metres!

The system is broken.  It's scarred my thinking and hindered both my independence and my acceptance of  impairment, but I'm working on it.

I will try not to feel guilty about not working.

I will try not to feel guilty about using a powerchair.

I will try not to feel guilty about needing care.

I still have something to offer in this world and no amount of prejudice will stop me from doing so.