There is one bit of medical advice to M.E patients that really stands out:
Don't nap.
It seems innocuous enough.
Doesn't it?
Doesn't it?
M.E is funny old thing. Up is down. Left is right. Help is harm. Wisdom is idiocy.
In fact this simple bit of advice, to avoid napping during the day, strikes at the heart of the difference in approach between medicine and M.E patients.
Lets have a look at the advice first from the patient's perspective.
"What? You want me to stop sleeping in the day? What the hell makes you think that this is even my choice? I cannot do anything else! I am forced to go to bed."
Due
to an increasingly aggressive social context, one where disability and
illness were punished, I found myself ill and needing to take my children to
school in the morning and collect them at the end of the day. The walk
was a few miles. I had a condition that meant that illness followed
exertion, so I was placed into pain for many years. At worst, I would
deliver my children in the morning, fall into bed to sleep, and then
wake to collect them at the end of their school day. This cycle would then repeat.
If you'd said
"Don't nap" to me I would have looked at you with incredulity. Do you not understand M.E? I was not
merely "napping", I was crawling into bed, utterly exhausted in a desperate attempt to recover enough energy to repeat the walk all over again.
While I did this, again and again, my overall health was set into decline. My function and
ability were reducing and my quality of life, my ability to live without
pain and suffering was crashing through the floor.
"Don't nap!" What a
stupid, empty, bit of medical advice.
Now, medicine's response to
reports like my own, from many many M.E patients was, frankly,
bizarre. "Don't nap" was wrapped into a set of ideas and branded "Sleep Hygiene". As one
charity founder exclaimed to me:
It's as if they're saying that M.E patients'
sleep habits are causing their illness! That M.E patients are somehow "dirty"!!
Meanwhile, medicine
continued to work under the idea that avoiding napping was a good thing,
or at the very least, a safe thing to recommend and to do.
I think that's wrong.
Had my sleeping, in the days above, been under my control and had
I followed medical advice to avoid napping, I think my overall health
would have nose-dived. And worse, much worse, it would have declined
within a system that ignored my reports of harm.
No medical treatment can ever be considered safe if there is no way to report harm from it; No chance to be listened to; No partnership between doctor and patient.
At worst, "Don't nap" was arrogantly imposed by physicians onto patients who were, after all these decades, still being treated as flaky as opposed to being ill. It is little wonder that M.E patients became angry and that this just anger could then be perverted by others for their own ends.
But we have a problem:
M.E patients shouldn't nap. Napping breaks the day.
Napping repeatedly sends an M.E patient back down into the well of sleep. It forces M.E patients to clamber out over and over and over again. It limits the heights of activity that can be reached within any day. There's simply no time to left to reach them.
Medicine has long been keenly aware that rest and inactivity are adding to the host of problems experienced by M.E patients. Within a context where we accept an M.E patient's desperate and clinical need for exertion, "Don't nap" is very good advice.
In recent years I am greatly improved. My life with severe M.E and my life now are utterly incomparable. I do whatever I can to avoid sleeping at the wrong times. In fact I will fight to maintain a singular period of sleep within any 24 hour period. Experience tells me that my life depends on it; My health depends on it; My ability to *literally* run up the steep side of the mountain behind my house is dependent on my refusal to nap during the day.
Doctors were correct. I must not nap. It is good advice. But, wait, how can this be?
Yet again we find that medicine's helping hand back up to health and M.E patients hands thrusted up for help do not meet. How can they? They are saying different things. Rest, don't rest. Nap, don't nap. It seems a desperately sad and impossible situation, but it is not.
Ask an M.E patient what their aim is. Are they fighting to nap throughout the day for the rest of their lives? No, of course they are not. They aim to get well. They want to have the power to not simply make it through the day, but to work and produce and excel once again. This aim is not in conflict with medicine's. Doctors are not the evil Nazis that activists paint them to be. They don't talk nonsense, they are not insane. They want as many M.E patients as possible to be well enough not to need to nap. They hope that napping is a self-sustaining loop of dysfunction and it may well, in whole or in part, be so. But what's important here is that M.E patients and their physicians, including the much maligned psychiatrists want the same thing: to end napping.
The conflict here isn't the aim, it's how we go about achieving the aim. Sleep Hygiene is a poor choice of phrase but the fact remains: medicine is correct: rest and broken sleep do maintain ill-health within M.E. The relevant questions to ask are whether these are the only things that maintain illness in M.E and how exactly we go about addressing them.
I told you about two times in my life. One where napping saved my bacon and another where napping would, I am certain, send me back to illness.
What has changed between then and now?
What's changed is that I switched ladders at the mid point.
What helped to save my life at the depths of illness
(rest, napping) ended up strengthening my prison cell. What hurt me so much at the depths of my illness (exertion, refusal to nap), ended up helping me to tear down the cold stone walls of my M.E.
There is a reason I detest dogma within M.E.... To bring about recovery, both patients and doctors need to be able to change their minds.
In a future article I shall examine exactly how napping is bad, how treatment can make it worse and how we may successfully resolve the issue as part of our recovery.
