It is really strange to be able to sit here and write that I walked 70 miles last week. I feel like such a fraud! How can an M.E patient walk 70 miles? And then I remember. I don't have M.E any more!! Like, what?! How?! It's hard to believe. It's hard to get your head around.
I got ill aged 12.
My whole adult life has been about managing M.E and now, suddenly, I don't have to. It's weird. It's genuinely weird, but in a good way, of course.
The 70 mile figure is particularly impressive if you know M.E. On average I was doing 10 miles a day and therein lies the remarkable bit... did you notice it? I wrote 10 miles *a day*. Meaning that I walked 10 miles and then the very next day I was perfectly capable of walking another 10 and another and another.
My life with M.E has been all about weighing up the cost of every single mental and physical exertion. Everything I do, well, everything I used to do, brought on symptoms. M.E patients call it "pay-back". Payback is highly predicable in so far as if you're going to exert one day, there's no real point in planning anything much for the next, or the next, or even a few days after that.
Post Exertional Malaise is more than exercise intolerance, it is illness that follows mental or physical exertion.
Exertion in M.E is like tossing a pebble into a still mill pond. Ripples ride out across the surface and affect days, weeks and months into the future. Too many instances of exertion and the surface never seems to calm down, the pain never seems to go away, you know?
M.E patients always end up with the phone battery analogy. Modern smart phones are much better, but in the dark ages, (like, what, 15 years ago?) mobile phone batteries would lose their ability to hold charge. They wouldn't die. They'd just become useful and useable for shorter and shorter amounts of time. Just like our M.E riddled bodies. Most M.E patients understand this.
"I feel like a battery that won't hold its charge."
In fact the abstraction continues to hold, for the way you charged and discharged a mobile phone was important. Phone batteries would have what was called a "memory effect". Lots of small top ups would lower overall capacity whereas a few cycles of moving from fully charged to fully discharged would mean better performance.
In my life with M.E every so often I would catch a night's sleep that "worked". I'd wake up refreshed, as I assume nature intended. These deep sleeps often followed high levels of exertion, but of course high exertion more often than not ended in disaster. I would go to bed in pain, wake up too early in pain and then spend the whole of the following day in pain. Consequently, I'd most often live a life of low level daily activity followed by low level and low quality sleep.
With a body that won't hold its charge throughout the day, poor recharging at night and intense budgeting of one's meagre daily energy allowance, a life with M.E is of both low function and high difficulty. It is a low quality life and yet very, very, hard to manage.
It is not so easy to navigate a day when that day seems to be heavily under the influence of those in the recent and not so recent past. For most of my adult life my actions the day before, the week before or the month before would determine my current level of health,
pain and ability.
My body doesn't have this memory effect any more.
These days, when I go to sleep, sleep works. It resets and restores my health like a new life in a computer game. Yeah, I'm 47. I don't wake up feeling like a 20 year old, but then, I don't know what this is actually like. I got ill at age 12. I have no idea what it is like to be a young adult, to have energy pouring out of me, for it never happened to me. All I really know is that my life now, is much better than it was at age 20.
As I've previously noted, it is hard (and contentious) to determine the direction of cause and effect in M.E, however, for me, my recovery is all about the removal of this memory effect, the hang-over from yesterday. For me now, a new day really is a new start, I am not always indebted to the "sins" of my past. Yes, if I over-exert today I will suffer, I will feel fatigue, but by tomorrow the decks will be cleared and I'll get the chance to do it all over again. And I take it.
I could walk 10 miles a day, every day, for a year if I wanted.
The question is: Can I help you to do the same thing?
