The Lost Years by Wendy Coxhill.
What do I miss from my life before M.E. struck?
The short answer is everything, but I will be more specific about how my life has changed in the six years I have had M.E.
The main loss is independence. The first big challenge was when I became wheelchair-bound three years ago. The next loss was when I could no longer read or watch a film.
My intolerance to light is so severe I have to wear heavily tinted prescription glasses all the time, even on the dreariest days and I also have frequent bouts of blurred vision.
In the last year my arms and hands have become so weak that I cannot operate even an electric wheelchair, so I am totally reliant on someone to push me, even at home.
I need carers to get me dressed and feed me as I cannot grip any cutlery or hold a cup or glass.
That is the physical side of life with M.E. plus the total exhaustion and constant pain but sometimes the biggest loss is a social life.
On the very rare occasions I am well enough to go out for a meal I am aware of people watching me.
My carer has to take my coat off, put my drink in a feeder cup and give me my food. I feel like shouting “I’m not a freak. I’m ill,” but I haven’t got the energy!
I have also lost friends who have said they cannot cope with seeing me so ill and disabled – but I am still the same person.
My closest friends these days are ones I have met since M.E. crashed my life apart and who accept me as I am.
Have I adjusted to life with ME?
The answer is I have had to.
I try to focus on what I can do rather than the huge list of things that I can’t, but it has made me realise that, once I swallowed my pride and told people that I needed help, there are many good people only too willing to do things for me and that makes me feel loved for the person I am.
ME Awareness Week Monday 11th – Sunday 17th May 2020