It’s a running joke in the chronic illness, but especially fibromyalgia (along with other diseases) communities that if we all had a dime every time we were told to “do yoga’ we’d be filthy rich beyond our imagination. And to some extent, gentle, easy movement including stretches, walking, or specific exercises, helps keep us from stiffening up and reduces pain and inflammation. However, there’s a dark side to moving more that when we try to explain to able-bodied individuals we’re told isn’t real or is all in our heads–post exertion malaise.
PEM as it’s known, is common in chronic fatigue/ME. In short, when someone does something physical, such as go to the grocery store (Yes, walking around the store and pushing the cart is physical. Especially if you go with me at this time and I’m buying two buckets of kitty litter and a couple big bags of food. Oomph!) your body gets exhausted beyond what would be seem reasonable. For example, it can take you hours, or even days to recover from a trip to the store, where someone else may just need to rest for an hour or less.
I noticed this when I cared for my mom. I had to do all my shopping on Saturdays and it was a whirlwind of trying to get all of the homestead chores done, from livestock feed to groceries to the Walmart run, not forget anything, and be back in as short a time as possible because I hated leaving my mom alone in case something happened. That exhausted me. And honestly, I thought it was just the circumstances. But then, we started working from home and I only go into shop every two weeks on Saturday. Sure, it’s not quite the same. I can take my time (except this eats up a huge chunk of my morning/day, not to mention the energy loss afterwards). But still, I’d come home, do some computer work and find that I “hit a wall” and be completely wrung out for the rest of the day and my Sundays were less than productive as well.
Last weekend was especially hard on me, and honestly, I’m still recovering. Not only did I do my grocery shopping, but I also mowed, and I planted some of the garden, and I worked on trimming my mare’s hooves. I can hear you saying that if I can do all of this, then I must not be sick. Except, I HAVE to do it. If i don’t, no one else will. And, at about 7pm on Saturday I hit the wall, fell asleep and slept for a good 12 hours. (Though with fibromyalgia, who knows how well someone sleeps.) I’ve been recovering and dealing with really bad muscle pains ever since.
I don’t tell you this to elicit pity. Rather, I want you to understand that just because someone “looks normal” doesn’t mean that they won’t pay a hefty price later. One of the good things for working from home is that I CAN do those little homestead jobs. Clearing out the feed shed, 20 minutes or so at a time on my lunch hour, gardening, walking to the mailbox. Except, in doing these, I’m exhausting myself and I hurt even more. In the end, it’s a catch-22. I want to move more, but I’m going to pay for it later. And all the while the medical community is telling me that this is all in my head and isn’t real. I beg to differ.