When there are days you have to sit down to rest after taking a shower, exercise can prove next to impossible. It can really be a pain in the… well, it’s painful. We’ll just leave it at that for now.
Exercise is important to a healthy lifestyle and a healthy body. It can lift spirits, provide immunity support, strengthen and tone, and keep everything in good working order… But what happens if exertion is the very thing that makes your body sicker? The thing that is capable of completely incapacitating you? Welcome to living in a body run by ME/CFS (myalgic encephalomyelitis / chronic fatigue syndrome). This is my nightmare.
Before I got sick, I belonged to a local gym and enjoyed going 4-5 times a week. There was a yoga class I loved, a spin class I was finally getting good at, weights that were toning muscles I had forgotten were there, and a cardio room that I used to meet my sister-in-law in so we could use the elliptical machines together. It wasn’t always easy to go and sometimes I skipped, but I tried to make make it a priority on my schedule.
Fast forward to the present. My body has undergone quite a few changes in the passing years. Harboring several different health issues and a humdinger of a coupla chronic illnesses, the gym has become a thing of the past. Almost like a fairy tale I made up to amuse myself. It’s been almost seven years since my ME/CFS diagnosis, and a couple of those have felt like the longest years of my life.
What most people don’t understand is how I can usually look fine on the outside while saying I’m so sick on the inside. Typically, I look pretty healthy. A little tired, perhaps. Certainly carrying more weight than I should and than I used to… In general, however, I look like your neighbor or your sister or someone you would pass at your gym. Meanwhile, the inside of my body is a wreck. And one of the main things unseen is how it can take every bit of energy I have to make you believe I feel as well as I look. *sigh* It’s something of a curse, at times, because people with ME/CFS have to spend a great deal of time trying to convince people that they really are ill. Even though some are extremely ill.
Please believe that I am not lazy! I wish my body was cooperative. I wish I could exercise like people tell me I should. The truth is, everything goes haywire if I push too hard. If you have to sit and rest after washing a sink of dishes, you’re probably not at your healthiest… And while I am MUCH healthier than severe ME/CFS patients, it’s nowhere near the person I was. (For an absolutely heartbreaking look at what severe ME/CFS can look like, please read this recent article from The Washington Post about Whitney Dafoe.) Some patients can’t leave their homes – others are confined to their beds. It’s a blessing not to be stuck in bed, and a continuous source of gratitude to know I am not housebound. I walk as often as possible, manage to work 20 hours a week, and still have enough energy at times to go out with friends and family to a movie or restaurant. Heck, when all the stars are perfectly aligned, I might even manage a short hike!
What I would ask you to know, however, is that it comes at a price. When a reasonably fit, healthy person hits the trails or goes for a run they might have sore muscles after an intense workout, but they can get back out and do it again within a day or two. For someone living with ME/CFS, exertion of any kind (physical, mental, emotional) can lead to days, weeks or even months of recovery time. In some cases, overexertion is the reason a mild or moderately ill patient ends up permanently bedridden. It’s a terrifying tightrope to walk. Never knowing what a few extra minutes of walking might do. Never knowing if too much housework in a day will put you in bed for weeks. Living under that black cloud of uncertainty is its own form of mental exhaustion. My body doesn’t react to activity like it should. Sometimes walking from the bedroom to the kitchen causes such oxygen deprivation that I have to lean against the counter until my breath comes normally again. There are days I may manage to get to a hiking trail, only to discover a quarter-mile in that my heartbeat has become increasingly erratic, that I’m staggering because my equilibrium is way off, or that my body temperature won’t regulate and I’m sweating profusely despite the cold or shivering despite the heat. I’ll confess – there are times I’ve had to sit down in the aisle of a store or abandon a cart full of groceries simply because my legs became so weak that I couldn’t stand anymore. It has come down to making the decision to finish a task or have enough strength to drive home. It’s frightening to be okay one moment and find yourself helpless the next… Every system of my body revolts, sometimes at a moment’s notice, and there is nothing I can do but ride it out. So many random symptoms might attack – chest pains, missed heartbeats, brain fog – just to name a few… There are so many severe potential risks to being active that, if I’m not having a good day to begin with, it really isn’t worth taking a chance.
Other times, however, I do risk it. To enjoy the outdoors, to feel like I have a life, to maintain some independence… I tell you all these things so you know the effort and energy it takes, and so you can be a bit gentle with me, or anyone else you know with ME/CFS. I would also ask, however, that you remember sometimes we dare to dream… we dare to take the chance. There are some things in life that are worth it. By asking you to understand, I’m saying you’re probably one of them.. 🙂
As always, thank you for reading!