15

I wake up every morning all excited and curious to see what the day will bring. If I could leap out of bed and do a cartwheel I would. Every new day is brimming with possibility.

Simultaneously, my daily life is consumed with managing a chronic illness that’s a brutal task-master. There aren’t words in the vocabulary of any language to accurately describe how appallingly sick I feel. The pain is immense. My face throbs. I lay my head gingerly upon the pillow.

Although I tell myself M.E. Awareness Week is just an arbitrary date, I have my cranky pants on this week. There’s no need for me to let a date on a calendar vex me, but it’s a non-arbitrary number that’s the problem. The number 15. The number of years I’ve had M.E.

23 hours a day in bed, the norm for the last few years, is not fun. Nor is being hooked up to an IV to gain an extra couple of hours of verticality for a day or so.

You’d think I’d be used to it. I’m not used to it. Each minute weighs a ton. The clock on my bedside table has a red hand that ticks away the seconds. Sometimes I’m so frustrated I want to bite the clock in half. The only reason I haven’t is the match-stick wedging the battery in, put there by my late father. When I change the battery, I think of him.

Years ago I was talking to a friend, older than me, and she mentioned that she was coming up to her 20th year of illness. Young, stupid and gauche, I gasped, “How have you not killed yourself by now?” She didn’t take offence. She seemed as surprised as I was that she was still here. Over the years we have both been equally obsessed with the concept of full recovery, although these days my obsession has reduced to a fervent hope for improvement.

Back then the thought of 20 years with this illness was so intolerable to me I genuinely couldn’t comprehend how she’d endured it. I’d made a promise to myself that if I got to the age of 30 and was still sick, I was allowed to top myself. I am not endorsing this mode of thinking, and long before I got to my 30th birthday I’d decided to stick it out. I am gosh darn thrilled to be breathing. One day I’d love to learn to tap dance, sometimes I even do a little shuffle in my slippers.

Of course what I really wanted was not to die, but to be given the chance to live, really live. Not this buried-alive existence that is severe M.E.

This week I can’t help but reflect on the last 15 years, and ponder how little has changed for people with this condition over that time. Collating the research for an article summarising 2010 ME/CFS news really brought that home.

Not much has changed at all. I still have to brace myself for problems when seeing a new member of the medical profession. I still have to keep my mouth shut around some extended family and friends who exude the faint suspicion this is some kind of elaborate hypochondria. It is still exceptionally difficult to access disability services. There is still a woeful lack of good research and a corresponding lack of effective treatment options. There is still a lack of science to tell me whether it’s safe to consider having children if I were ever miraculously strong enough, what the risk is that I’d pass it on. It is still logistically hard to access basic health-care. So many uphill battles. Still. And I know I’m not alone.

There is so much need for awareness raising, for great research, sometimes I feel discouraged that my efforts, and the efforts of thousands of others, have not yet brought about meaningful change. 15 years and what? I feel like I’m whispering in a football stadium.

In recent years I’ve been blogging about my life, the lovely bits and the strange bits. It takes it out of me, I give up other things to be able to manage it. I appreciate everyone who reads, although naturally the numbers are not colossal, there is limited appeal in reading about someone who lives in bed. But am I just preaching to the choir? Does any of it seep out into the broader community? Is anyone more informed because I tell my story? I don’t know the answer to any of those questions. What I do know is that despite my strong personal instinct for privacy, and the little cringe inside every time I put a post up, telling my story is something I can do. It’s not much, but it’s all I have, telling the truth about what it’s like. And the number 15, that’s the reason I have my cranky pants on.

These are not my cranky pants…these are my favourite pyjama pants. Happy M.E. Awareness Day.