My life with M.E.

I was always a physically active and strongly academic person before the ME. I volunteered at a steam preserved railway called Peak Rail, spending my weekends and most of my summers clambering about a steam locomotive with a bucket of oil in one hand and a rag in the other, or shovelling coal for 14-hour days. I was an RAF Air Cadet working towards a promotion to Corporal. I loved to rock climb, and to play basketball and netball. I played classical guitar for eleven years ready to pass my Grade 6 exam.

I finished my formal education with 11 GCSE’s, 4 A Levels, and a BA(Hons) degree in Creative Writing. I had one poem published in a small press magazine, two novels in first draft (and several more WIPs), and plans to write full time once I’d graduated.

Now I struggle just to sit up in bed or to remember even the basics about the people I love. I can have a conversation three times and still not know or understand what was said. I have to plan things well in advance to be sure I have the energy to do what has to be done, and just watching TV exhausts me.

My life is a juggling act, and I have to weigh the value of each activity against how much I’m going to “pay” for it.

Over the years, I’ve slammed into a wall of judgement — often from people who don’t even know me or my illness. I’m “lazy”, I “should just” get out of bed, I “should just” make that phone call, I “should just” get out in the garden to soak up some sun, I “should just” get up and moving.

I’ve been mocked for not having the emotional or mental fortitude to beat down my ME as if it’s a wayward child. I’ve been mocked for saying the wrong word or saying a sentence backwards. I’ve had people come into my home and say “I wish I could laze about in bed all day” while I’m tearing out my hair from sheer boredom and the frustrating inability to do anything at all.

People frequently ask “have you tried [this therapy or that medication]” with the kind of tone that suggests that, if I “just tried harder”, I could be back on my feet in no time – but all of this comes after more than a decade of trying so hard I made myself worse.

Motivation means diddly-squat when your brain is on vacation and your body is a bowl of limp-cooked noodles. I’ve had ME since I was sixteen. I had to sacrifice any kind of social life if I wanted to so much as pass my exams at school, and I had to pick pure-coursework modules at university (even if they were not courses that particularly interested me) just so I could walk out with a degree. I’ve been through a battery of invasive and painful tests, as well as long periods of no contact from any kind of medical professional, and several rigorous bouts of physical and mental therapy — all of which just made me worse. Seventeen years after my M.E. started, medical help is still hit and miss (mostly miss).

Setting Goals

Many professionals have told me to set a goal and focus on reaching it in the belief that we can treat “curing” ME the same way we treat any ambition.

 

I’ve had several goals just over the past few years: I wanted to be able to attend my sister’s wedding at Gretna Green in December 2012. The trip alone would have knocked me out for more than a week, and there’s no way I could afford to take the necessary carers with me or pay for a specialist hotel.

I downgraded that goal to “being able to attend the local reception in January 2013”. (I managed that, by the way. It laid me up for six months, but it was worth it to see my sister in her wedding dress, even if I couldn’t attend the ceremony itself.)

My next goal was “being able to walk”. When that proved too “big”, I downgraded again to “being able to sit in my wheelchair for thirty minutes every day”. Currently, my goal is “be able to sit upright in bed for ten minutes without feeling like I’m going to snap in half”. (You can probably guess how that’s going.)

The Cycle of Life

The thing about ME is that it’s insidious. It’s invisible — not just to you, but often to me, too. I can spend an hour making a card while my back and hips are screaming, but I can push through that pain if I’m enjoying myself — only to collapse and be unable to do anything at all three days later.

It’s easy to get caught up in a make-or-break cycle. “I’m going to suffer anyway, so I might as well do it regardless” or “it’s taken me fifteen minutes just to get in the damn chair, so I might as well stay here long enough to enjoy some sun”.

Each time I give in to that line of thought means a week or more in bed, unable to so much as watch TV, because I pushed myself too hard.

Balancing Act

Every day is a balance between what I can actually do, what I can afford to do (allowing “emergency” time for later in the day or week for unexpected appointments, important phone calls, family visits, etc.), and what I need to do. What I want to do rarely comes into it.

I have to constantly weigh the cost of any activity against the value: is it really worth a month’s worth of agony to spend five minutes in the sun? Can I get out of this appointment or offload this phone call on someone else so I don’t get a two-day migraine? Should I take a nap and risk waking up with cramped hands, or just turn out the lights and be bored for two hours?

Staying Positive

I’m lucky in a lot of ways. I have lots of time for hobbies and skills I never would have discovered or learned otherwise.

I’m lucky that I have ME now, and not twenty years ago when doctors called it “yuppy ‘flu” and sufferers were treated like fraudsters and shysters rather than legitimately sick. (Oh, wait.)

The internet gives me access to friends, information, and support that I couldn’t get anywhere else. My dad is very supportive despite his own ailments. I know things could be so much worse.

But it’s easy to stay positive when the sun is shining and it’s not too hot or too cold and nobody needs me to focus or have a serious conversation.

And then other times (when I can’t avoid three visits in one week or when someone shows up without warning or calls me or I’m in more pain than usual or I’m fretting about government changes to welfare), “staying positive” is the hardest thing in the world.

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