September

September always gives me a slight, quiet shudder, I almost don't know it's there, but I feel it. It's the anniversary of my going to Caen (in 1982) to study for a year and becoming hideously ill, with what turned out to be Coxsackie B4 virus. I'd picked up the enterovirus before leaving for France  - most likely when waitressing.

A few weeks later,  I got a severe cold in France, on top of the other bizarre and frightening symptoms. A doctor came to the house, I had terrible pain/pressure in my chest, it felt like a small animal was sitting on me, how could he know I had Coxsackie? I had strange vibrations in my muscles and the light hurt my eyes. I felt cloaked in nausea.

As soon as I could, I came home.  Got the bus/ferry/train. Really dragging myself.

I remember passing houses in Rouen on the bus and thinking of Madame Bovary.

When no one at home could tell me what was wrong, though feeling like hell, I went back to France - train/ferry/bus - really dragging myself.

Then the nightmare began.

I had to come home again.

Thirty-four years ago.

I will be grateful forever to the locum GP my mother had to call out to the house, who recognised I had Coxsackie, which led to specific viral tests and referral to consultant neurologist Peter Behan. In early 1984, Dr Behan (now retired professor of neurology) finally diagnosed me with ME, which explained why I felt like I was dying.

I will never forgive those who did not believe me. Never.

It has just gone midnight, I have a wee tear, I am not given to self-pity but sometimes I do think, this is all very fucking sad.

I do still hope maybe there will be effective therapies in my lifetime.

And I am happy and proud to have all the above fictionalised in The State of Me (2008), a bearing witness to the initial brutal  'assault' of becoming ill with ME, all those years ago.