ME/CFS: Payback Explained

It’s an appropriate time to explain payback - also known as 'post-exertional malaise'. Malaise doesn't even begin to describe the experience of payback though. Malaise practically sounds relaxing. Payback’s also referred to as a ‘crash’.

My brother went back overseas on the weekend, and I have the consequence of my choices while he was here: payback. Big-time. I don't regret it - we had a splendid time!

In a nutshell, payback is a decrease in functional ability and increased symptom severity as a result of temporarily exceeding functional ability. This can occur through choice or unavoidable circumstance. For short periods of time I can force myself to function at a slightly higher level of functional ability than I am capable of sustaining. Then I pay for it.

Living with ME is like having a credit card with a tiny limit and massive interest rates ruling my life. Whatever amount of money is on the card each day, is how much functional time's available to expend. If I spend too much, I have to pay it back with interest. Lots of interest. And I can’t defer it - it has to be paid back straight away, though I often get a 24-hour lag before the payback kicks in, during which I gleefully consider that this time, I may have gotten away with it. Interestingly, one ME doctor, Dr Myhill, considers this short delay of the body's response to overdoing it to be a specific feature of ME which separates it from other conditions involving post-exertional illness.

At any rate, the decrease in functional ability and increased symptom severity will continue for a longer time than the original overspending of functional time. At different times I've have different payback ratios, varying according to illness severity. Sometimes I know my payback ratio and can calculate accordingly, but not always. One thing I have learned: despite my best attempts, I never get away with anything. Defiance is fun but ineffective. Minor incursions into the red always result in major time in the payback zone.

Payback is different from a relapse. Payback is a finite decrease in functional percentage as a direct result of overdoing it, followed by a return to pre-payback functional ability. In my personal experience, a relapse is a massive, lasting drop in functional percentage for a prolonged period of time – months or years. Relapses are the tidal wave of paybacks. I relapsed in 2004 and I’m still in it. [Update – still am in 2009.] Relapses tend to be unpredictable. But payback can sometimes be predicted and minimised, though it's not always avoidable, especially at the severe end of the ME spectrum.

While it's tedious living within one’s limitations, ME is the sort of task-master you can't argue with. I try constantly, and lose. Within the limits imposed by my current functionality, sensible planning and decision-making so as to avoid payback and wild downward fluctuations in percentage is important. It's terrible illness management to lurch from boom to bust.

To have any influence over symptom severity I work hard to maintain a stable functional percentage by pacing my activities carefully, and striving to make smart choices about what I will and won’t do. It’s not as simple as it sounds. When you're severely affected, the basic survival requirements of daily life involve overdoing it. The insignificant minutiae of daily living that healthy people take for granted all count as activities, not just obvious actions like painting a ceiling or driving a car. An activity is any physical or cognitive action. Brushing teeth, answering a question, rolling over in bed, pouring a glass of water. Moment-to-moment I make decisions, weighing up the potential gains of any activity with the likely payback incurred. These can be smaller activities, like reaching over to the radio to change the station, or a bigger deal like getting dressed and presentable for a visitor.

Overall I’ve become better at saying no to myself. Each day is a constant process of decision-making and I'm much better at it than I used to be. Will I eat lunch at the table, in bed or not at all? Will we wash my hair today, tomorrow or the next day? Will I get up to close the blinds to block the light that’s hurting my eyes, or will that mean I can’t get up later to check my email? If I shave my legs this week, will I be able to ring Granny? Maybe I could just shave one? Maybe I could single-handedly bring hairy legs back into fashion? Everything is a compromise!

I’m not so good at saying no to other people. I've improved, but could do better. I spend most of my time on my own, so naturally if the opportunity arises for a visitor I generally say yes, and accept the payback. It’s a tricky one, weighing up whether I can handle the payback at that time or not. People calling up in the evening and leaving a message on the answering machine along the lines of, “I’m going to be in town tomorrow, can we catch up?” can be difficult. I always want to see them, but short notice is the enemy of intelligent energy management. If I haven’t budgeted for a particular activity in advance and then I do it, it can put a serious spanner in the works. I might have already had to overdo it that week or month, and thus have no room for further compromise. If I say yes to last minute arrangements when I’ve already spent my budget, I do so knowing the consequences will be unpleasant.

Payback is predictable, and payback isn’t pretty. It’s awful going backwards, awful being able to do less when I can already do so little, awful feeling worse than I already do. It’s not a nice position to be in, weighing up whether it’s 'worth' seeing a loved one or not. Smart pacing and ruthless decision-making mean I can often, but not always, minimise payback. But sometimes making the sort of choices that would enable me to avoid payback just don't feel like an option. You only live once. While my brother was here I got up to all sorts of hijinks I shouldn’t have. I enjoyed it, I won’t see him for at least another year. It was my choice to do this. So now I’m in payback land...life in the (interminably) slow lane.

Addendum:

A dear friend briefly dropped by, and brought these beautiful flowers. Sometimes you have to meet life half-way.

If I'd have said no, I wouldn't have had the joy of her presence or the sunny yellow petals that are filling my room.