What's Wrong With You?

What’s Wrong With You? Part 3: ME/CFS

Myalgic Encephalomyelitis. As difficult to diagnose as it is to pronounce, ME is more commonly known as Chronic Fatigue Syndrome. I personally try not to tell people about this diagnosis as they generally believe it’s an excuse to be lazy or complain about being tired. The catch-all name “Chronic Fatigue Syndrome” doesn’t help with misconceptions either. While fatigue is a symptom, there are many others including: Post-exertional Malaise (PEM), sleep problems, muscle and joint pain, reoccurring pressure and tension headaches, orthostatic intolerance (dizziness and lightheadedness when standing or sitting upright), depression and anxiety, and memory and concentration problems.

Like many conditions found on this blog, ME/CFS is difficult to diagnose and treat. There’s no blood test or lab result that can confirm or deny this illness. Because of this, patients with ME/CFS might feel anxious talking about their problems to family, friends, or doctors.

“You just need to sleep better!”

cute cartoon woman with insomnia on the blue background

If I had a dime for every time someone told me I would be less tired if I charged my phone in the other room, or put it away two hours before bed, I could actually afford the stupid thing. I will be the first to admit my phone is probably not helping my sleep patterns. There have been many nights when I’ve fallen down the Youtube rabbit hole of cute Kim Namjoon videos and suddenly it’s 3am and I’m not even in my pajamas but oh look, another BTS compilation video! But let’s back up. One of the symptoms of ME/CFS is insomnia and sleep disturbances. Yes, Kim Namjoon’s beautiful face found all over the interwebs is not helping my sleep, but it certainly is not the cause. And to answer your questions, yes, I’ve tried that herbal tea, that essential oil, that meditation app. And they’ve helped! But they’re not going to solve my problem.

“You’re just out of shape!”

Okay, yes. That is a fair statement. I haven’t been in proper shape since I was in high school and playing field hockey. Even then, I was mostly living off of a teenager’s fast-paced metabolism and fun. Now I’m a sad adult living off stress and alcohol. Oh how the times have changed. Jokes aside, my lack of physical activity is not causing my fatigue, my fatigue is causing my lack of physical activity. I wish I could go out dancing with my friends, walking around downtown Towson and not worrying about my legs suddenly turning into overcooked noodles. Sometimes I can, sometimes I can’t. That’s the joy of an episodic chronic illness- you never know when it will strike.

“So, what can you do?”

Short answer: I don’t know. Longer, more accurate answer: I don’t know for certain. Some days my energy is up, and I am able to lead almost the same life I could 5 years ago. Other days I need to take a rest midday if I want to make it to my afternoon/evening classes. This usually means a lot of planning ahead on my part and occasionally using a mobility aid. When I had the great opportunity to spend some time abroad, my friend Linnea and I went to the British Museum. We wanted to see everything, and that place is huge! We decided the best way for me to get around was in a wheelchair borrowed from the museum. That way I could still have some independence in wheeling myself around but could take a break if I needed to. And Linnea and I didn’t have to pay for bag storage; my lap worked just as well.

If you know and love someone with ME/CFS, the best thing you can do is be flexible. And if you are someone living with ME/CFS, know that you are not alone. It can be a frustrating, depressing, and infuriating illness, and I completely understand. Remember that the only person who has to deal with the after effects of overexerting yourself is you, so take the time you need to recuperate, and then get back out there and be the kick ass, WorryWarrior you are!


2 thoughts on “What’s Wrong With You? Part 3: ME/CFS”

  1. Hey Alex 👋
    This is amazing. Many of my nights look just like that sleepless. Yes I totally agree. It’s the pain and fatigue that keeps me from working out.


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