What’s wrong with me?

Next week we’ll be doing a 3-day #AmWritingAroundObstacles series here on my blog, all about overcoming obstacles to productivity.

We’ll talk about obstacles that can prevent us from working efficiently, which for me means writing, and work out how best to get past, over, under or through those obstacles.

I have a pretty good idea where I’ll be going in this thought process, because I’ve spent some time pondering the method that I hope will help me be more productive, but I want to hear from you too. So if you’d like to subscribe by email you can do that now up in the side column just here on the right.

Hey, maybe you’d like to say in the comments below this post that you’ll be here to work through your circumstances with me, like a statement of intent for yourself. I like that idea. I’m gonna do it to fix it in my brain. 🙂

Anyway, that’s next week.

Today, I’m going to tell you about the medical condition that affects my productivity, because I want to refer to this post next week rather than weigh down the series with a deep old moan from the back of the groan cave. Here it is.



What went wrong?

My long-term health condition is Myalgic Encephalomyelitis. ME for short.

I came home hurt after the 1991 Gulf War and it took me a long time to recover from my injuries. I was mostly paralysed for the first two years and my wife gave up her career to look after me. It was a hell of a fight to regain even some movement, and that was only the start.

What followed was a long journey measured in 4 or 5 year periods from bedbound, into a wheelchair, to up (and frequently down again) on sticks, and so on.

It wasn’t a linear journey by any means, because there was far more going on than simply regaining the use of my limbs. Some internal organs had been stomped to death and were never coming back.

And my immune system was damaged, which is where the ME virus comes in. I caught it in a military hospital and it changed every aspect of my life. I was what’s known in the ME world as severely affected.

Eventually, in July and August 2006, I walked without aids for the first time in 15 years. That first day was big. Big. There may have been tears, and they weren’t only mine.

To my huge disappointment, that autumn a relapse knocked me down again and several years later I still haven’t made it up off the low plateau it pushed me back to.

 

What’s it like now?

My life is very sedentary. I’m registered as 80% disabled (although my disability is largely invisible) and I’m 99% housebound.

 

My primary symptom is pain, with exhaustion as the secondary symptom caused directly by the primary one.

Muscle pain is constant and forever, with joint pain nearly constant and nerve pain (like they’re trapped, only usually they’re not) swooping in to spice things up regularly. I still have big muscles from my old endurance athlete days and when they cramp, often several of them together: boy, do they cramp!

Management is focused on rest (which I’m not very good at, even after all this time) and the intelligent use of energy in small amounts without draining my small reserves (at which I’m better).

Pain control is a problem. I use codeine phosphate and paracetamol 24/7 to take the edge off, and I practice mind over matter. The next (and final) step up the pain relief ladder is morphine. Which dulls the pain, but it also dulls my mind. I’d rather have my brain working, thank you very much, but big jagged hideous pain dulls my mind too, so it’s all swings and roundabouts.

I tackle the pain control problem day-by-day. I don’t know of any other way to do it.

Okay. There’s my health story. So next week, when I mention physical hurdles, these are mine.

 

Enough, already

That’s me done whining. I’m going to hit post then leave that “statement of intent” comment for myself.

See you next week, I hope.

 

Further reading

Here’s the #AmWritingAroundObstacles series:

Day 1

Day 2

Day 3

 

  • Want to get notification of my blog posts by email?