Have you noticed The Thing yet? Maybe it's just me. I love symmetry. Always look for it when I'm trying to solve a problem.
It's funny: Even the sunflowers in the garden tick-tock the days and nights away: Timing is so important to life and, in this regard, two questions percolate through my mind: Why the hell don't we sleep for 12 hours per day? And, secondly, who the hell says we don't?
During the daytime we work to change our environment to better suit our existence, and as we change the world, so we are changed by it.
Sleep is very likely to be the time where this damage to our bodies is undone.
As I fix my life I have tried to find and to set a healthy schedule for myself. One only has to go into a retirement home to see the health benefits of simple routine. Indeed when I work-shadowed a houseman in a general hospital a registrar made it clear to me that illness and accident confuse older people. They are knocked-for-six, not simply by the damage done, but by the disruption to their routines, their modes of thought and their environment.
It is odd to research something so intimate as one's personal timetable. Is there a best time in the day to defecate? To exercise? To have sex? How does the body cope with jet-lag and are there medications that can help reset our body's internal clock?
One thing that has become apparent to me is that healthy, productive, people are often surprisingly inactive for the first and last two hours of each day. London is a busy place, but here in Wales, it is quite clear that dog-walking ends at 8, and bedtime is 10pm. The time between seems filled with TV and passivity. Likewise, in the morning between 6 and 8, a slow start seems common: news, ablutions, a bathroom visit.
It may seem strange to you that I find all of these things so alien. But sleep inversion and even breakdown of the diurnal sleep pattern is commonplace in M.E. Indeed sleep dysfunction is a required symptom in the Canadian Consensus Criteria (Carruthers et al)*. People with M.E do not live a normal life. Instead of a smooth and repeated routine they find themselves snatching brief moments of lucidity and activity whenever and wherever they can.
The areas on the diagram above represent 30 minute time slots. It is wise, I think, to keep activity to a minimum within the early and late slots, for despite the presence of consciousness, they may better be considered to be a part of sleep. Sure, we can grab a coffee and override these moments, just as we can shorten or borrow from our sleep cycle, however, it is unlikely to do us any good.
Isn't it a strange idea though: that we could be sleeping but conscious?
It begs the question: What would it feel like, were such a thing possible, to be fully awake during the deepest parts of sleep? I think it would be very unpleasant. If sleep is where healing and repair work is done, I think living through parts of it while fully conscious would be as difficult as trying to work while your house is being remodelled or re-wired. I think our minds would feel distracted and fogged and our muscles would feel like lead.
Could an M.E patient's sleep-activity cycle be that smashed up? Could it be possible that within a person with M.E even the cycle of consciousness and unconsciousness has become disassociated from sleep?
When we consider the dramatic energy drops common to the experience of having M.E, the times when the rug is pulled right out from under us, we have to wonder. Could these catastrophic energy drops be crashing us right through the floor, right through mere inactivity and into deepest troughs of sleep? It certainly feels that way. M.E isn't fatigue. It isn't the mere absence of energy. It is a highly negative, aversive, state: a state below mere tiredness; a crushing depth, something that human beings were never meant to experience. Of course M.E patients consider this to be illness or malaise, it is an unnatural state.
Whatever the case in regard to sleep, correcting and re-correcting an M.E patient's daily activity cycle is probably going to improve their lot in life. However, it must again be firmly noted that such correction cannot simply be imposed from above.
If you walk into an M.E patient's room and throw open the curtains at 6am, you do so out of ignorance and/or cruelty.
While there are biases towards the extremes (early birds and night owls) overall, the ideal schedule is common across society and re-enforced by the world of work. Progression towards a normal diurnal pattern is a vital step towards recovery for the chronically-ill: for those who have lost their sense of time.
We find again that it is difficult to assign cause and effect in a critical issue for M.E patients. Illness breaks the schedule but it is also true that a broken schedule brings on illness. A vicious cycle is complete, and in a particularly tricky twist of the knife, the imposition of a correct schedule onto a broken one will, more than likely, lead to further breakdown.
My goodness! How M.E patients suffer!
The sooner we can work out how to reset patients to a more orderly activity cycle the better. We start this process by finding out and respecting exactly where patients are at the outset of treatment. Patients can help by providing an activity history for recent months. As always in M.E, the doctor and patient must then work together to map a route from dysfunction to function.
"...Indeed sleep dysfunction is a required symptom in the Canadian Consensus Criteria (Carruthers et al)*..."
*Gosh it would be easier to write this website with the use of MEpedia. However, I wouldn't go anywhere near it or any other product of the activist group "M.E Action".
