Up until 2010 I have had what I would call moderate ME/FMS since 2001. I had to give up work and haven't worked since, and at my worst I was house-bound for about a year, having to spend a lot of my time in bed.
I would get up and wash and dress at about 1pm and would be back in bed at about 7pm, having to live my day within those 6 hours. I would sometimes be able to leave the house within that time, and functioned at a fair level although I had to repeatedly rest during the day..
However, in August 2010, I came down with what I was told to be a chest infection, these chest problems being common for me as my ME was very immunity based. It had been a stressful year anyway due to one thing and another, and I had tried to do a bit of decorating (silly me!), but when I developed this virus it absolutely finished me off and I took to my bed.
2011 saw me deteriorate further, due to some unhelpful advice from my local ME clinic, and I have not been downstairs since. By 2012 I was unable to leave the room and so began my world of commodes and carers.
I began to rally a little, being able to stand again and walk a few steps, however in the summer of 2014 my health dropped rapidly and ended up with me being admitted to hospital, again with chest problems, and being too weak to swallow. I was 4 days in hospital and, after a multitude of tests which came back clear as often is in ME, I was sent home despite being in paralysis. I was in such a pitiful state that even the nurses were in tears.
The following weeks and months came to be the worst days of my life. I did not realise that it was possible for the human body to feel so ill and be in such pain without actually dying. It is unbearable and the terror that comes with that level of ME is incomprehensible to those who have never experienced it. I shudder to think of it. With effort I was able to roll on my side but I was unable to sit up and often didn't have the strength to lift my head. My carer visits were increased to 3 times a day, I was spoon fed and was unable to get off the bed at all so had to use a bedpan.
Every summer, for over a decade, I would suffer a severe ME crash, always accompanied by searing chest pain. In summer 2015 my doctor decided that these frequent chest problems were not infection but were actually hay fever. It was too late that year for me to benefit from that information but during 2016, even though I had frequent colds and viral infections, I didn't develop hay fever because of the precautions I have taken and I was able to strengthen and improve.
At the time of writing this I am beginning 2017. I am now able to sit up without help and I can put a t-shirt on and off on by myself. I have even recently sat on the side of the bed a few times. I still cannot get off the bed at all and I am still spoon fed but I try to look to the future with optimism and hope that I will continue to improve.
Emily who had severe ME for many years was a great inspiration for many of us who have had to deal with the severe form of ME, with her knowledge and friendliness, even when she was at her lowest.
She wrote a great book about Severe ME, which you can find on the "books" page