Don’t Do Your Best, Do Less
Anybody who has ME or CFS (Myalgic Encephalomyelitis/Chronic Fatigue Syndrome) will be very familiar with the boom and bust cycle. ME's main characteristic is Post-Exertional Neuroimmune Exhaustion (PENE) also commonly referred to as 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, answering the phone or writing this post is exhausting and will cause an increase in a variety of symptoms. The problem is that when I feel better on a particular day, I tend to want to do more because I feel able and would like to participate more in life.
But 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 which means that I might feel capable in the moment, and may even have no increase in symptoms for hours later, but then 2 days later I am completely incapable of doing the most basic things.
The Effects of PEM or PENE In ME/CFS
Let me explain how this works in a practical way: 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 even the tiniest exertion (PENE), 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! Every bone and muscle hurts, my skin hurts, sometimes my throat and my teeth hurt too. I wake up stiff, numb and tingling all over. I feel utterly exhausted and weak. This is payback (PENE) 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 that unpredictable.
The Boom & Bust Cycle
Due to the very nature of this illness, "just 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 new motto is: don't do your best, do less.
Finding Your Baseline Of Activity
Just because you might feel like you can do an extra bit today, doesn't mean you should. A better way to manage things is to find your baseline and slowly work your way up from there.
Your baseline is the amount of activity you can consistently do without making your symptoms flare up.
This means first reaching a place where you are comfortable, feeling okay, while doing nothing all day except resting and stabilising there before attempting to increase activity levels. More severely affected patients, like myself, might have trouble in this area too. I have had months where I am so ill that even while I am lying down in bed all day, only rising to go to the toilet, I am unable to sit up, hardly able to talk, cannot turn myself over in bed and in constant pain and shaking with heart rate soaring as though I'm doing a cardio workout!
It is important to listen to your body and rest as much as your body requires. Rest in such severe cases usually means silence, darkness and no stimulation like movies, music or visitors. Just breathing and sleeping until your body recovers from whatever it is dealing with. All this is near impossible if you do not have the support of other people who can cook and clean for you and bring to your bed anything you might need.
Less severe patients might be able to do one chore a day over and above their daily self-care, perhaps in 20-minute sessions with an hour rest between. Or perhaps they manage better doing different activities on alternating days, for example they might shower on Monday, then cook a huge pot of stew on Tuesday (which can be portioned and eaten for the next few days), then wash dishes on Wednesday before their next shower on Thursday and so on. Spreading activities out with lots of resting between.
I have personally fluctuated through all these varying degrees of disability and have had to reestablish my baseline and routine many times over the years. It is a personal issue, so what works for me will not necessarily work for you, and what works for you today might not work next month. So you must listen to your own body and work within your own energy envelope without overspending and going into energy debt because that will cause an increase in symptoms and can cause a prolonged increase in severity.
Once you have found your baseline of activity, the amount you can consistently do without worsening your symptoms, and remain stable for a few weeks, you can increase your activity levels slightly. So if you were walking 100 steps a day, you can try 120 a day for the next few weeks and see how your body responds. If you were washing dishes for 10 minutes, try 12 then 15.
Such small increments help you to accurately assess your body's response over time before increasing again. Remember PENE can be delayed for 24-72 hours, so allowing your body ample time to adjust and respond to your new routine is vital.
Pacing For ME/CFS Recovery
It is common for all people to pace themselves in life: pacing activities and responsibilities, making sure they create a balance between activity and inactivity, stress and rest. This simple habit is often neglected in our fast paced life these days, but for people with ME/CFS, it is a vital skill to reacquire.
Once you have found your baseline as described above, the aim 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 any change in symptoms.
You should remember though, that some symptoms are normal when increasing activity levels. Things like muscle aching in your legs from walking or aching in your hands from drawing or writing. I would keep an eye on these symptoms while continuing at such a level of activity. If no other symptoms appear, then I would assume it simply a matter of exercise pain, which healthy people get too, and carry on at that level for about 2 weeks.
If I remain stable, with the muscle pains resolved as the muscles strengthen at that level of activity, I would then attempt to increase .
It's a long, slow 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!
I'd love to hear from 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?