The New York Times has an article today about how to mitigate the effects the next day after a bad night's sleep. This reader comment captures my frustration with many articles on sleep. It's from a reader named Connie: "I’m tired (pardon the pun) of being bombarded by these types of articles that blame the victim for getting insufficient sleep. I don’t “pull an all-nighter,” I haven’t “stayed out late and got only six hours,” and I don’t stay up for hours at night looking at an electronic screen “cramming for a deadline.” I don’t have a “racing brain” in bed. I’ve had insomnia for the past 25 years, with difficulty getting to sleep, staying asleep, and waking too early. Two sleep studies and three sleep specialists were of no help. They overprescribed sleeping drugs and benzos, which then further destroyed my ability to sleep naturally. If it’s not sleep apnea or restless legs, the cause of insomnia is often elusive. Many people like me sleep poorly as they age, despite decent sleep hygiene. Nothing I’ve tried has helped, and I’ve tried a lot. Yet we sleep-deprived souls are bombarded by articles listing the dire consequences of something we can’t control. Napping and going to bed at the same time every night isn’t feasible for those of us living with noisy neighbors and irregular schedules. Exercise isn’t possible for those of us who are disabled. Frequently reminders of the risks of sleep deprivation don’t help me sleep better. I’m aware that my health, cognition, emotional stability, and stress levels are severely affected. How about articles that give us hope instead of depressing us? Articles about what is being done to find a cure for chronic insomnia?"
Yes, so true! I was thinking yesterday as I was failing to nap (and for me, not getting that afternoon nap has a snowballing effect in terms of my insomnia and other symptoms) about how it has been probably a bad thing that I have gotten prescribed so many medications to help me sleep, medications that no longer work but which, if I now try to get off them, mean my insomnia is even more extreme. A real solution for insomnia for pwME is what would be most helpful. In the meantime, when I'm not sleeping, I fear my brain is really racing, partly worrying-- because of all the messages we get – – if my insomnia is somehow my fault for being on all of these medications or for not doing x or for doing y... Etc etc.
Yes, this really hits the nail on the head. I didn't read the article, but I can imagine it based on this comment. What gets me about these type of articles, and lifestyle medicine in general, is how patient blaming it is. If only you would change your behavior, the illness would change or even go away. Years of living with chronic illness have taught me that the illness is essentially uncontrollable through my behavior or choices-unless that choice is to take my medication, which it what does help a bit. The discussion around semaglutide and obesity reminds me so much of the discussion around chronic illness. How long have obese people been told to make lifestyle changes and how long have they said they can't or it doesn't help? Now a medication comes along that normalizes appetite or satiety (among other things) and they are able to make "behavioral" changes that cause weight loss? I think it goes to sow how much of our bodily condition is outside our conscious control. People cannot will their illnesses away.
I've had insomnia since I was 9. I'm now in my 60s. I have difficulty in getting to sleep and difficulty in waking up, although both problems seem to be getting less severe in the last three or four years or so. When I went to university aged 18 it was the first time in my life that I could sleep until I woke up naturally, and I discovered that I could sleep for 18 hours without waking up at all. It did mean that when I woke up it was the first time I could remember that I ever woke up and felt satiated with sleep. I loved it when it first happened but it was extremely annoying when I started working and had to wake up early. My sleeping and waking problems ruined my life. Being almost permanently sleep deprived is torture. Then I discovered in my 50s that I had high cortisol, but not high enough for a Cushing's diagnosis, and I thought it explained why it was so hard to get to sleep. Anyone looking for articles on "How to deal with high cortisol" online will almost always see something like, "Go to bed early and get plenty of sleep". All I want to do when I read that is scream at the author HOW??? TELL ME HOW!!!
This. Also much screaming at articles when I read about "dealing with worry" and get the super helpful advice to give yourself 15mins and then tell yourself you are going to sleep and will worry about it later. Where is the off button for that?! I have practiced mindfulness for 13 years and the first thing you learn is what you resist persists, so not thinking about something is the fastest way to make that thought hang around like the smell of fish in a microwave. I would LOVE to know how to stay asleep longer than 5hours - 7.5 on a truly exceptional rare occasion (twice in over a year) normally it is about 3 and an inability to return to deep sleep. Worsened by a Long Covid and a PIP form. Advice should only be given by someone with actual experience of the problem - and the pain of it's consequences.
It’s like the 5 habits of highly successful millionaire business owners 1. wake up at 5am 2. Gym workout and meditate before 6.30am 3. Gratitude journal 4. Eat a healthy balanced diet 5. Have a dad who is a millioaniare business owner who gives you a job
Fortunately I have escaped the sleep police, and since I have taken ill health retirement I find what works for me is just let my sleep patterns do what they want. For me I snooze during the day if needed, I use screens during the night as distraction when I can’t sleep, and generally sleep or lack of it is only an issue when I try to impose the rules of sleep hygiene on myself. I am lucky I can totally set my own schedule and just give up on a day if disturbed sleep patterns knock me out. Obviously many/most do not have that luxury. It seems to me that current behavioural intervention is based on trying to force people into preconceived notions of what normal sleep patterns should be, when for chronic conditions it may be best for people to explore what works best for themselves.
It’s not as if there’s such a thing as a universal best approach to sleep. Sleeping in the daytime isn’t a bad thing. At nursery school we had a sleep after lunch old people are allowed naps. In warm countries people sleep in the hot afternoon and are busy in the evening. As I understand it the Navy use four hours watch four hours rest.
This is what I do. Living alone I can mostly do it, but not always. It also does not work every time. However the alternatives, especially sleep hygiene. are a disaster. How many years does it take for sleep hygiene to work? I did it for nearly three years. Here are the results - chronic sleep deprivation, worsening OI from lack of sleep, leading to passing out and falling again and again and again.
Let me reiterate some old biochemistry. Sleep is an active process, and the last step is to induce it by a wave of PGD2, a prostaglandin, occurring in a sequence in different parts of the brain. I have not checked to see if this biochemistry is still important in the literature, so there may have been changes. However PGD2 has to be synthesized from omega-6 fatty acids. If anything interferes with that guess what happens? This is without getting into all the issues we may have with circadian clocks. The biology of sleep is deep and complicated. Simplistic advice does not go far enough, we need more research, especially in ME. Having said that I found that about 400mg of resveratrol every three or four days, not every day, does two things. First, I sleep less. Second, I tolerate sleep insufficiency much better. I also find a small amount of butter helpful, but don't dare take it in large quantity due to its potential inflammatory effects. Though I do like that it has butyrate.
Half the world naps, and I am not talking about babies. If I could not stop and rest, and sleep when required, I would have been dead before I was thirty. If you want an example of just how disconnected the psychosomatic club is from the harsh reality of our lives then their advice on sleep hygiene is as stark as it gets.
