Exercise

Exercise is to a person with M.E. what sugar is to a diabetic.  It is the enemy.  The cardinal feature of Myalgic Encephalomyelitis is something called “post-exertional malaise” which means you feel ill after exercise (either physical or mental activity) rather than simply tired (although you also feel tired in spades.  Times 100.  With knobs on).  My post-exertional malaise feels like I’ve been hit by a truck.  I ache in every conceivable part of my body, and some parts I didn’t even know existed.  I feel ill: like I’m coming down with a bad dose of flu.  My brain totally shuts down and my head feels like someone has slipped me half a bottle of valium then stuffed my skull with pounding fog.  My skin burns all over like I’ve been out in the sun too long.  My throat is sore – exactly the same soreness you’d get with strep throat.  I am as weak as a kitten.  I feel sick to my stomach.  Every cell in my body feels like it’s been hammered with a baseball bat then infected with the Ebola Virus.  It does not feel good.

My dilemma is that a certain amount of non-strenuous exercise is supposed to be good for both Dysautonomia and Ehlers-Danlos Syndrome.  My EDS physio tried for a whole year to get me to increase my exercise levels but it was all in vain.  While my motivation was motivated, my M.E. riddled body vigorously objected.  You ignore the objection at your peril.  If you try to keep pushing on you will end up stuck in bed, feeling like you’re dying and completely unable to function.  Crawling to the loo on all fours will be the norm until your body decides it’s regained its pre-being-ignored equilibrium.  This is what separates M.E. from other diseases where “fatigue” is a symptom.

For 10 years I was unable to walk further than my own front door, stand long enough to cook myself a meal, bathe more than once a week, or do any of the things that healthy adults consider normal daily living.  Thankfully I’m no longer quite so affected by M.E., and can now exercise most days.  I have a little rescue dog, Bertie, and although I pay a dog walker to take him out for his long walk in a morning, I try very hard to walk him myself for 20-30 minutes every afternoon.  I’ve been doing this now 7 days a week for 2½ years and it never gets any easier.

There’s a theory that people with M.E. rest too much and become de-conditioned, which makes it even harder to exercise, and the whole thing becomes a vicious circle.  It’s the biggest pile of crap I’ve ever heard.  Any healthy person who walked every single day for 2½ years would become fitter and able to walk further.  Not me.  It’s still as hard 32 months down the line to walk my dog as it was on the very first day.  As I’m walking along, struggling for breath like a 40 a day chain-smoker, I can physically feel the fog descend into my brain and the energy leave my muscles.  By the time I get home the fluey symptoms are raging, my legs are like jelly, my ability to think has done a bunk, my throat is killing me, my knees are aching and I feel sunburned all over.  Luckily, it now only takes about 60-90 minutes for the symptoms to subside, rather than the weeks (sometimes months) it used to take when I was really poorly, but it’s still not normal.  I keep it up though, because I am told it is good for my joints, autonomic function, heart and lungs.  It doesn’t sodding well feel like that at the time though.

I can only walk without pain if I use a Sacroiliac Support Belt, due to H-EDS making my S.I. joint very unstable.  Walking still makes the rest of my back painful though, just from being upright.

I can’t really say that walking has helped my orthostatic intolerance either and I still spend most of the day in a reclining position or with my legs off the floor.

For something that’s supposed to be helping all three illnesses I can’t say I’m all that impressed by the results.  But I do love it.  After you’ve been bedridden for nearly a decade, being able to walk in the fresh air around the stunning area in which I live is a little piece of heaven.  I don’t really care whether or not it’s improving my physical health, because it improves my mental health beyond measure and that’s priceless.  I’ve gotten into photography in a very amateur way since I’ve been walking and here are a few snaps taken in the last month (apart from the last one which I nicked off Google as I can barely manage to walk on level ground let alone trek up Helvellyn!).  Click on any image to enlarge.

Photo of the Lake District, England

Photo of the Pennines, England

Photo of the Lake District, England

Photo courtesy of Google images

Photo courtesy of Google images

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4 thoughts on “Exercise

  1. E. Milo

    Incredible photos!! They don’t look amateur. And, regarding PEM, as much as I hate that anyone else goes through it, it gave me solace to read your descriptions and know I’m not the only one who experiences such hell. Sometimes I feel like no one else could possibly feel THIS ill day after day after day. Do you have any theories about how you improved? Just time? I cannot wait until the day I can walk my dog again. A 20 minute walk would be like winning the lotto. X

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    1. bertieandme Post author

      I sooo wish I had some magic bullet that I could say helped me recover, but I don’t sadly. In 2000 I stopped even trying to get well and just accepted I would be bedridden until I died. I stopped killing myself going out of the house for acupuncture or reflexology or whatever treatment I was currently trying. I stopped all the supplements I was on – they weren’t helping anyway.

      After 10 years I’d fought for the benefits I was entitled to, and could afford 6 hours of care a week. I had meals on wheels. I’d gotten rid of ‘friends’ and my boyfriend that were making me more ill and robbing me of my energy trying to please them all the time.

      I decided to start a strict pacing schedule. This sounds easy but is THE hardest thing I’ve ever done. I alternated physical and mental activity with rest – activity in 10 minute chunks, rest in 1 hour chunks. If I was on the phone a timer went after 10 mins and I was done – even my Mum fell out with me over this as she wasn’t done talking much of the time!! I kept the pacing thing up for over a year before I saw *any* difference whatsoever, but slowly, slowly it started to pay off.

      I started juicing every day and eating greens and beans and seeds that I sprouted myself in the windowsill. I ate a lot of raw foods. All this based on Leslie Kenton’s Raw Food Bible.

      I’m sure all this helped, but I also think there was a massive amount of luck involved. I was very physically fit before I got ME, and because I always lived alone and for ages couldn’t afford any care I simply *had* to get up and do things like make my breakfast and lunch every day. I never became fully bedridden, although I was 98% for years. I really don’t know why all this worked for me but not other people. I’ve definitely hit a ceiling though and haven’t made any further progress in the past 8 years x

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  2. Dead Men Don't Snore

    Great description of PEM. I’ve always found it such an inadequate name as people interpret ‘post-exertional malaise’ as ‘feels tired after exercise’ and everyone feels tired after exercise so it’s good to read a description that demonstrates that it’s so much more than tiredness.

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    1. bertieandme Post author

      Thanks for taking the time to comment 🙂 I don’t even like the word ‘malaise’ because your average person doesn’t understand what it means! But it’s better than the dreaded F word!! x

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