Updates

I've been spending less time online and more time resting.  I can now sit up at 60° for 26 seconds. Yesterday was 21 so hopefully tomorrow will stay 26.  The idea is to improve sitting tolerance enough to tolerate being hoisted and then 'sitting' in my powerchair which tilts and reclines.   i have been working on this for a few weeks but have managed something for 18 days straight. I will be very happy when I go over 30 seconds. I am hoping pace will pick up as time goes on.

It is very difficult getting the pacing right.  I keep doing nearly nothing except rest and a bit of paperwork in the day, then at night I feel like I need to do something for me. The result has been some very ill mornings and nights.  I'm not sure where the line is though I.e what time to sleep, how much I can watch/do.

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?

Taking it out on carers

This blog is likely to contain a lot of shorter posts for a while, a lot of which will be about care agencies.

I had an altercation with a carer a little while ago where I snapped and said she took it out on me when she was in a bad mood. in response she said she didn't but I did and all the other carers agreed. at the time I was defensive but maybe they were right...in a way sort of. 

I apologised to a carer a little while ago for being snappy and explained it was because I was exhausted. They responded by saying it was ok but I should also be patient as they were trying to work it out. One carer was new and the other has worked  nights very recently. She should have known the basics but she didn't. she also wasn't listening and kept doing things that hurt me. I'd give instructions to do something differently at least 3 times before she moved her hands away. She had assumed the mentality of lead carer except her instructions to her colleague were vague like 'the cushions' - I own at least 10 cushions. When I said "I am utterly exhausted and can't explain everything right now. Please can you tell her which cushions". She responded with "the cushions" as if I had never spoken.  She clearly hadn't tried to memorise my nightly routine. 

Do I take my bad moods out on them? No.  When I'm completely exhausted, in agony and every word I utter has to be shouted to be loud enough because my lungs are weak. when every word I utter causes a surge in nausea and yet none are heard, understood or respected, do I ever let my frustration boil to the surface and snap as I give instructions I shouldn't need to be giving. Yes, absolutely.  Would it be better if I didn't? Probably yes, but there should be a far more obvious solution than me bottling it up.

it happened

It happened. That thing all people with ME/CFS fear. I became bedbound after a relapse in January.

I have wanted so much to write about this but not been able to. I am starting to be able to now.  In time I will start to write here again as I think it will help, but right now I am running on adrenaline and must be careful not to write too much. Much of what I write about will be quite raw.