More About M.E. #ME/CFS

So what’s the difference between cancer-related fatigue and myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS)?

This post hardly presents an exhaustive definition or exploration, but a
core symptom, and one which differentiates it from cancer fatigue, is post-exertional malaise (PEM). A quick Google search defines it as, “a key symptom of chronic fatigue syndrome (ME/CFS) that causes a spike in symptoms and a massive energy crash after what, to other people, would be minor exertion.” 

Often you’re oblivious to the impending crash. The next day tells a different story. It takes me 1-3 days to recover while being housebound, lying in a stupor, feeling as if I have the flu. I often need to rest in a quiet, dark room because light and noise feel crushing.

When people recover from illness, they often exercise, slowly building up, as their stamina and health increases, as I did after cancer treatment. I saw some improvement, but nothing close to resembling the pre-cancer version of me. Others assured me I would get my old self back in time. That’s why I was particularly alarmed when the exhaustion got worse. I pushed myself through the work week and spent entire weekends recovering. Even a half-hour phone call from a friend would leave me feeling like I might pass out.

When people with ME/CFS exercise, engage in a fun activity, or just try to do necessary upkeep, such as cleaning, there is no “pushing yourself” without paying painful consequences. The worst part is that continued insistence of doing the things that later cause a crash sometimes leads to a worsening of symptoms, permanently. This is why we learn to pace, to rest when needed, to listen and respect our bodies’ messages.

Not everyone experiences every symptom. There is also a spectrum of severity ranging from those who are severe and bedridden and those who are mild who participate in all aspects of life at a slower pace. At this point, I fall in the moderate middle with one or two mild days during which I appear to live a normal life. I still may walk around in a haze, but I’m able to participate in life outside the home.

For example, during a typical grocery store outing, I feel fine to drive to the store. Once there, however, the lights and sounds overwhelm me. Active children follow their mothers, darting, jumping, shouting, zig-zagging through the aisles. Their activity is like an array of strobe lights flashing in my field of vision. Sometimes I visibly jolt from the assault. The kids bounce on flip-flops when they’re told to stay in one place. The flap-thwop sound of the shoes drives me insane. I am now officially a curmudgeon, or so it seems. Who would suspect I actually like kids? A woman sees a neighbor. They greet, laugh, cackle. The onslaught hits me like a blaring siren.

I stand in line, waiting to pay for my food, and hold my throbbing head. I’m a bit woozy, the muscles in my legs ache, and I just want to go home. The woman at the cash register asks, “Did you find everything okay?” At least I think that’s what she said. Her words leave her lips like smoke rings, changing form the moment they hit the air, fading, floating, until they disappear. She may not have been speaking English. That or I’ve lost the ability to understand the language, which is too bad since it’s the only one I know fluently. I nod my head and say yes, like a foreigner who isn’t yet adept at the language, and hope I got it right, relieved that this is not one of those situations where comprehension matters.

I pass the Redbox on the way out. I haven’t rented a DVD in months. I’ve no assurance I’ll be up to returning it the following day.

I have many days where I do better imitating a normal person, but the scenario I just painted is not unusual. It’s not my best day, but it’s hardly my worst.

I discovered others in the ME/CFS community whose cancer treatment left them with ME/CFS — like a party favor handed out at the door, filled with junk. It’s certainly not the survivor narrative the pink proponents like to tell.

If you’re interested in learning more about symptoms and criteria, see the links below. Know that not everyone has every symptom. It’s a complex systemic illness with little understanding, although there is significant research happening, particularly at Open Medicine Foundation.

For a complete diagnostic definition, see the International Consensus Criteria or the Canadian Consensus Criteria.

Finally, this video tells the story well.

Comments

  1. That video is brilliant. I hope Some smart people somewhere are looking for a cure for this. The suckage is unimaginable. Xoxoxo A

    • There are scientists from Stanford as well as other places who are researching. The problem is not enough grants/funding, but progress is definitely being made.

  2. nancyspoint says

    Hi Eileen,
    Gosh, ME/CFS sounds awful. I am sorry you have to deal with this. Fatigue of any sort is something that’s often hard for others to understand, and this must add to the frustration in dealing with this. Is there anything recommended that a person can do to help manage this? Or is mostly listening to your body and then choosing what you must/are able to day on any given day? Or any given hours, for that matter. Thank you for sharing about this and for sharing the video too. Eye opening, for sure. x

    • Nancy, doctors tend to treat the symptoms they can, such as pain. Many people take supplements, as I do, and some do seem to support the body but at best it takes the edge off. Mostly, we have to pace ourselves, enjoy the good days or hours, and understand our limits. I’m learning. I’m managing. xo

  3. Well done, Eileen. Very sorry this continues to effect you. Good thing you’re an optimist!

  4. Thanks for writing this, and sharing the video. The part about grocery shopping is spot on. I get what my husband calls the “zombie look” after going shopping. (And sometimes he has to come get me home because I don’t know how to drive a car anymore.)

    • To my fellow zombie, thank you for your comment. It’s really rough sometimes, but it helps to know we’re not alone in this awful club. And yes, the “zombie look” is exactly what it looks like.

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