ME Awareness: The Lost Years by Wendy Coxhill | 11 May 2020

May 11, 2020

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.

Wendy Coxhill.

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

Visit the ME Awareness Media Toolkit and download posters and graphics.

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