Don’t Do Your Best, Do Less

This might seem like a strange motto for the new year, but before you decide I’ve lost the plot, let me explain: I have Chronic Fatigue Syndrome, also known as Myalgic Encephalomyelitis or ME/CFS. It’s main characteristic is Post Exertional Malaise (PEM). Feeling really ill, weak and exhausted after any physical, emotional or mental exertion.

This means brushing my teeth, getting excited about a visitor coming or writing this post is exhausting and will have consequences in the form of a variety of symptoms.

Pushing oneself to do more simply because you feel okay in the moment, is not really an option for people with ME (pwme). Our payback is often delayed for up to 48 hours! Let me explain how this works in a practical way: 

For example, if I go out today (and I don’t generally leave the house much at all, for months at a time even) I might be okay while I’m out. Wearing my noise cancelling headphones, sunglasses, sitting in my wheelchair, with mild symptoms including pain, shakiness, sensory overload and some confusion and irritability due to the cognitive dysfunction that makes it hard to process things happening around me.

This is my new normal, this is my okay. I might even be okay the next day. With exhaustion, slight increase in pain and shaking after any tiny exertion (post exertional malaise), but if I rest in bed or on the sofa for most of the day, I’d manage quite well.

Then comes the second day after the outing and all of a sudden I’m in so much pain. I wake up stiff, numb and tingling all over. I feel utterly exhausted and weak. This is payback for something I did two days ago. This is delayed payback and it can last anything from a day to a few months. It’s anybody guess. It’s unpredictable.

For this reason, my motto is, don’t do your best, do less.

Just because I might feel like I can go the extra bit today, doesn’t mean I should. A better way to manage things is to slowly build up with tiny steps, allowing a few weeks to stabilise at a certain level of activity before increasing ever so slightly for the next few weeks and monitoring the change in symptoms…

Its a slow, long process that I have yet to master. I tend to do my best in everything, and in this case, my best can have devastating consequences. I am determined to get it right.

Over to You

Do you find you’re spending good days catching up on things and then paying for it until the next time?
Have you found ways to avoid this boom and bust cycle?
I’d love to hear from you!

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Maureen Lee - January 29, 2017 Reply

Thank you for this post, for willing to be vulnerable, honest, and real. So many of us with chronic illnesses play the pretend game – almost as though there should be shame attached to the diagnosis. And if we pretend long enough, or we’re “good” enough, people will think we’re just like them. ‘Normal’, healthy, strong. So thank you for reminding us that our first priority is self-care. Sound advice, which I wish I’d read over 25 years ago! And thank you for this blog, which will educate those who are unaware of the seriousness of this disease. 🙏

Kat - April 10, 2017 Reply

Wow, thank you so, so much for sharing. This really resonated with me right now; must be a God thing that I stumbled on it! Growing up, my parent’s only expectation on me was to do my best at everything. They didn’t care if I got all A’s, but I should be getting A’s in the subjects I was good at, because that was doing my best. I grew up believing that the only way to glorify God through my work was to always give my 110 percent.

And that worked, for a while. I graduated in the top 10 percent of my highschool class; 3.8 in undergrad, graduated a semester early; full ride to grad school, completed the program in the minimum time–with pregnancy and a baby!, with a 3.9.

But during that time, I was getting sicker and sicker and sicker, and once I graduated, it all really went to a head. I have gotten so many new diagnosises in the last year!! And I can no longer operate anywhere near that breakneck pace I used to. My best isn’t healthy. Just because I can operate like that, doesn’t mean I should. So I’m going to try to adjust my definition of “best” and create healthy limits on myself, so i can still things I care about without making myself sicker.

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