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’s guess. It’s quite unpredictable.
That is why pushing through is a sure way of falling into the boom and bust cycle. Doing too much when you feel good (boom) and then paying for it dearly afterwards (bust). For this reason, my motto is:
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.