About me and M.E./About the bad new is you’re not going to die

During an outbreak of ME in Lake Tahoe, Nevada, in the 1980s, there was a joke going round that ran, The good news is you’re not going to die. The bad news is you’re not going to die.

Sometimes I think this joke says everything there is to say about having ME. I could write thousands of words and I wouldn’t be able to say as much.

I’ve had ME for 10 years. It’s a simple story. Ten years ago I caught a virus, some kind of gastric ‘flu, and never completely recovered. I spent two weeks in bed, nauseous, feverish, weak, menaced by headaches and muscle pain, the blinds drawn down because daylight hurt. Then the symptoms receded, but they never fully went away. They kept coming back, like a haunting. Nausea, fever, headaches, weakness and pain.  Each time they came back, they stayed a little longer, and blazed a little more fiercely. They began to eat away my life.

After a year, I had to give up work.

After 2 years, I needed a wheelchair.

After 3 years, I was housebound.

After 4 years, I was permanently retired from my position as an academic researcher.

After 5 years, while I could still walk the length of an aisle, I married Paul.

And after 6 years, I became bedbound.

As I write this I’ve been bedbound for more than 3 years. I’ve spent nearly every hour of those more than three years in the same bed, in the same room, nauseous, feverish, weak, menaced by headaches and muscle pain, the blinds drawn down because daylight hurts. My symptoms, once unwelcome visitors, have become grubby squatters. And as my health has worsened, they’ve brought along some friends: night sweats; cognitive dysfunction – problems with language and memory; bouts of insomnia; and a profound, unremitting fatigue, as if all the years of being ill have simply exhausted me. I can’t use a computer, or watch TV, or listen to the radio. I can’t sit up or stand for more than a few minutes. I can’t walk further than the bathroom; if I have to, I crawl. Sometimes I’m too weak to turn myself over in bed. Or chew. Or speak. I can’t shower. I can’t cut up my food. I can’t comb my own hair.

Most days, I can read a couple of pages of a book; talk to Paul or on the ‘phone for 15 minutes; maybe message a friend. And in the last few months I’ve been able to write again, longhand, for five minutes a day. That’s how I’ve written the content of this site: longhand, five minutes a day. Paul has typed it up.

No one can tell me if I still have a virus, or if my body’s stuck in virus-response mode, or if there’s something else completely going on. The medical profession is bewildered by ME. There’s no explanation for the disease, and no cure. ME is very rarely fatal, but the suicide rate among sufferers is six times that of the general population. I’ve never been afraid that ME will kill me. But I’ve often been afraid that it will make my life so small and painful and exhausting that I no longer want to go on living it.

Sometimes I’ve wanted to die. But mostly, fiercely, I’ve wanted to live. Many people with ME improve over time, and I plan on being one of them. It can take years, but hope, I’ve learned, is a feisty mistress. And sometimes my life is small and painful and exhausting, but sometimes it’s rich and full of joy, and sometimes it’s rich and full of joy precisely because it’s so small and painful and exhausting. When we lived by the coast, the most beautiful days were always those when the clouds and rain fought with the sun to claim the land and sea and sky for themselves.

The bad news is you’re not going to die. The good news is you’re not going to die.

Before I fell sick, I thought I knew about ME. ME wasn’t a real illness, it was “all in your head”. Sufferers imagined or invented their symptoms. It was something that afflicted the constitutionally weak or psychologically vulnerable. I knew I’d never get ME. I thought people with ME should pull themselves together and get over it. I didn’t know telling someone with ME to pull themselves together and get over it is like telling someone with heart disease to pull themselves together and get over it. Or someone with MS. Or someone with cancer.

I didn’t know ME could make a person this sick. I didn’t know anything could make a person this sick. I didn’t know there were tens of thousands of people in this country whose ME is so severe they’ve been housebound or bedbound for years, unable to make a meal, or climb the stairs, or dress themselves, or comb their own hair.

When I was first diagnosed with ME, a curious thing happened. People started to approach me, in private, to tell me they’d had ME too. Some of them I knew well; others were friends of friends, or friends of colleagues, or colleagues of friends. They wanted to help. They told me how they coped with the illness. And they told me the illnesses they’d claimed to have to cover up their relapses. Because of the stigma ME carries – that people with ME are weak, or malingerers, or just plain crazy – they kept their ME hidden, locked in the closet. Maybe you think you don’t know anyone who’s had ME. Maybe you’re wrong.

That’s why I started this site. I want to tell you about this place I’ve ended up in, because most people don’t even know it exists. I want to tell you the view from here. What it’s like to be bedbound for years. How it feels when your illness is doubted or dismissed or disbelieved; or when you’re doubted or dismissed or disbelieved yourself. I want to tell you how I survive, in case it helps someone else survive it, too.

I found the good news/bad news joke in Osler’s Web, by Hillary Johnson. Osler’s Web is a meticulously researched account of several outbreaks of ME in the US in the 1980s and 1990s, and of attempts by the US government and medical establishment to dismiss the suffering of those with ME and suppress the evidence of a biological basis to the disease. It’s a fat, sturdy book; it runs to more than 700 pages, printed in a tiny typeface more often used for footnotes. It’s the kind of book you could knock someone out with. It sits on the bookshelves by my bed like a turquoise brick. If I lift my eyes, I can see it. And I’m glad to have it there, the weight of all those words beside me, writing into existence the invisible lives of people with ME.

 

In 2015 The Colchester Gazette wrote about me and ME – you can read it here.

The opinions expressed on this website are my personal views and not intended as advice, medical or otherwise.