The importance of the circadian rhythm and sunlight

I have plenty of Scythian ancestry going far enough back in time but then I suppose most people in Europe do. They were recorded by Hippocrates to have potentially been unusually lax and limber and researchers think they actually suffered from the EDS gene. I found someone in my ancestry tree at the turn of the 17th C, Princess Anna of Sweden, who was recorded to have had cervical instability and a kyphosis and a whole lot of other painful problems that sound like EDS, but ironically, she was not a blood relative because she never married. The gene, however…? I descend from her father, King Johan III of Sweden, and also from his brother Erik who was king for a while as well (in other words, their father, king Gustav Vasa is my ancestor - I come from the illegitimate, yet recognised baronial lineage and my dad was a baron, a totally meaningless title in modern Finland and one I didn’t inherit because I’m not male). In letters, Anna records having had to drink wine because people didn’t drink water back then. That can’t have made her stomach problems any good! She tried to treat herself with herbs in a lab of her own making, and collaborated to compile a tremendous herbarium.

I can see from photos of myself as a child that I have unusually strong quadriceps, probably to protect unstable hips, and knock knees that are already pretty obvious. The whole skeleton started to go wonky over time. I think the gene came from my dad who had an array of weird symptoms (infertility, hole in the heart, colour blindness, lung weakness) though he didn’t consider himself hypermobile when I asked about it. Yet in a photo of him as a young boy he stands in that awkward pose with the pelvis pushed forward and legs in a near-ballerina stance that I recognise all too well in myself. I look a lot more like him than like my mum. Unfortunately I suffered from chronic stress in childhood which definitely made the problems a lot worse to a point where EDS became a life limiting disease with a strong neurological component (high noradrenaline and 5-HT2A output - fight and flight). Perhaps otherwise I’d been more like my dad who survived childhood with only minor trauma during the war.

That’s me to the right in Gran Canaria 1970

So here I am, with an intolerably wonky body that doctors barely even notice because they don’t look that closely at the human body these days. Do they look at all, I wonder? Thanks to AI, I have recently come to the realisation that all my problems come down to the hEDS, they are not merely co-morbidities but satellite problems that stem from an unstable nervous system. That goes for the hyperacusis and the tinnitus as well as the infuriating problems with sleep. These two are currently my most difficult symptoms to live with. When I withdrew from Buprenorphine and Tramadol, both problems blew up in my face. It’s been about fifty days since I dropped the opioids altogether but the nights are still incredibly difficult and require copious amounts of drugs just to control the noradrenaline and histamine surges so that I can get to sleep at all. Of course, I was so frustrated with the sleep schedule while I was still on the opioids that I quickly made a solemn promise to try and fix it during the withdrawal my body is expected to go through over the course of several months. AI was sceptical but I could see that it was better for me to try and use the chaos to my advantage. My body was already terminally confused so I might as well try and change things around completely.

Last spring I noticed a slight improvement in my overall energy levels when I started to spend time outside in the garden in the spring, and in the summer I came across interesting emerging research into the importance of sunlight. There are many scientists who now condemn LED lights, and this is great news for me because I always knew they were trouble and am now having my suspicions confirmed. To me, as an artist and interior designer, something that distorts true colours is already condemnable. Light is so important to the ambience of a room. That greenish hue you get from LEDs… well eeew! I’m also suspicious of the toxic materials they are made of that end up in landfill eventually. Either way, I could not physically relax in such light. I refused to be told how to live my life in my own home and how to decorate it with colours and light, so I stubbornly refused to buy into the narrative about energy saving light bulbs and kept sourcing my old fashioned incandescent lights from eBay. It’s getting harder and harder as old stock is running low, and most bulbs are very poor quality, so I end up changing them often. I don’t trust companies that sell broad spectrum lights - how would they do it and still save energy? If the bulbs don’t get hot then they don’t emit those necessary wavelengths. 

The closed light fixture in my bathroom is only designed for LED lights so here, I have had to concede. I had a very dim, very ugly 7.5 W halogen bulb that didn’t even last very long, and when it went bust I spent nearly £30 on a decent art gallery quality Sora 9 W 3000 K 600 lumen light bulb! Who said we were going to save money on energy saving lights? And yes, all those values are tiring to navigate, as well. I now have a bright light that’s at least somewhat decent and hopefully fulfills its promise of being long lasting as well, though I find it a little bit pink. At least it’s not a greenish light in my face… This is the sort of light that will wake you up so I also have an incandescent table lamp next to the door as far away from the water sources as possible (not really allowed but so what). For the bathroom, I tried the motion sensitive kind you stick on the wall but it was so horrible I returned it. That kind of poor, blue light is the last thing I need at night when I have a wee - I rather take my chances and stumble in the dark. I have a torch next to the toilet in case I get dizzy and disoriented (it happened to me once when I was ill and I rammed into the bathroom furniture in the dark). What concerns me is the price for a decent light like the one I just bought. As usual, people who can’t afford it, are the ones who will suffer with the poor quality lights, so now it also becomes a social issue.

I am no longer alone with my woes: a whole host of researchers and doctors and scientists are seeing the problem with LED. There’s talk about the screens we use but not the light we have overhead for hours into the night. In order to make the LED’s energy efficient, the near infrared part of the spectrum has to be cut out. That’s because red wavelengths emit warmth, and that heat has been condemned as energy inefficient. What you get instead are spikes of blue light that tend to flicker and cause problems in sensitive nervous systems. Scientists such as Glen Jeffery at UCL in London have been able to demonstrate that near infrared wavelengths penetrate deep into the body and stimulate the melatonin in the mitochondria, while the blue wavelengths, which don’t penetrate that deep, actually appear to shut them down. By studying the biology of astronauts in space where red light waves  have been absent for long periods of time, researchers have begun to suspect that LED light bulbs give rise to diabetes, obesity and cancer (amongst other things - many believe mitochondrial dysfunctions lie at the heart of chronic illnesses in general). Melatonin is a powerful antioxidant and it is found everywhere in the body, not just in the pineal gland in the brain, but also in the mitochondria which you may know as the cells that produce and modulate energy. You obviously do not want to shut it down. 

The blue lights from the screens appears to be a secondary problem and it’s easily remedied by simply turning off the screens an hour or so before bedtime. The greater problem are all the LEDs in the homes that signal to the brain through the melanopsin receptors in the eyes that it’s still daylight and wake time. Now the other important part of the research into the importance of near infrared light is the idea that we humans really need all the wavelengths the sun has to offer. It basically means you really need to spend a minimum of fifteen minutes outside even in the winter (thirty minutes if you’re conservative). Even during an overcast day, the wavelengths you need are there. People used to understand this intuitively and people such as Florence Nigthingale would take sick people outside to enjoy the sun and the fresh air. The idea that we now lock people up in hospitals without access to the elements is atrocious, if not barbaric. We evolved in the sun! We used fire in the evenings. We really need near infrared wavelengths for our well being. And so I persist. I go outside almost every day, even when the weather is poor. If you like, you can start your own research by watching some videos here and here and here. 

Remember, the light exists on a spectrum, and the ends of the spectrum are opposites. It is remarkably short sighted to focus solely on one end of the spectrum and think we can just ignore the rest. This is binary thinking, and we agree to it when we agree to spend our days indoors in blue LED light. Sometimes there is little you can do to affect it, but there are often options. Also know that the warmer wavelengths from the sun do not penetrate the windows. You need to go outside to enjoy the benefit of all the wavelengths from natural light. Biased thinking is very typical of modern Western style societies and I can see this reflected in the mandate against energy consuming lighting. What really gets me is that authorities are trying to micro manage how individuals spend energy in their homes but do very little to control the multinational companies and their effect on energy consumption and climate change. I choose to spend my money on decent lighting in my home because I see this as a human right. It is nobody else’s business.

There is another aspect to light which is the all important circadian rhythm (read more here). I’ve been persisting in turning lights off at ten, and if I can’t sleep, which is truly difficult during withdrawal, I take the necessary medications to get there before the noradrenaline and the histamine start to kick me into high gear again. This is not a sustainable solution in the long run because the medications are perpetuating my problems with akathisia, which I believe could well be a symptom of mild serotonin toxicity, but for the time being, it’s all I have. 

Slowly but surely, I have started to wake up around ten in the morning, sometimes a bit earlier. I allow myself plenty of time during the night because I wake up a lot and sometimes spend over three hours awake. But what I’ve learnt is that it’s the morning wake up that really anchors the day. So as soon as I wake up, I pull the blind to the window next to my bed and stare into the sky. I tried using a bright light device but it gave rise to chronic flashing lights and floaters in my eyes that gave me a terrible fright. To be honest I probably don’t really need it. On the other hand, if I don’t go outside that day, then a near infrared device can substitute some of those missing red wavelengths (UV radiation is actually also important, researchers tell us). My nervous system is unstable and so what it really craves is stability and predictability. It’s easy to see that this would counteract stress. But even more important is the way you can anchor the circadian rhythm through predictable mealtimes, exercise time, bedtime and wake up time. This rhythm is real, it oscillates throughout the day, synchronising neurotransmitter and hormone activities, and all the other downstream functions in the body. 

We also have a master circadian clock in the suprachiasmatic nucleus of the hypothalamus, as well as secondary clocks everywhere in the body. They command the whole night-and-day scenario like the director of an orchestra. In other words, it is an internal, 24-hour biological timing mechanism that regulates essential daily functions like sleep-wake cycles, metabolism, and hormone release, and we have to help it run as smoothly as possible. The circadian clock is the mechanism and the rhythm is the result. What you want is a nice rhythm that allows you to live a fuller life, participate in social events, enjoy the daylight, and build up sleep pressure over the course of at least 13 or 14 hours. And that can be very challenging for a chronically ill person who’s struggling to get out of bed at all. For me, any form of transition is biologically problematic, not least the transition from wakefulness to sleep and back. GABA is required for the gating process, but in my case, GABA is an inefficient buffer due to downstream problems at the NMDA receptor (GABA is synthesised from glutamate, the most abundant neurotransmitter in the body). I don’t know what my future has in store for me but what I can say is that my energy levels are now much less of a roller coaster and that I simply feel more like my normal self in the day time. 

There is something quite important that often gets forgotten when people dogmatically preach about sleep hygiene. It’s the idea of reward. In the past, I used to reward my night owl habits. I would think of the evening as an easier time to be alive, one that allowed me to lazy around and watch shows on TV or online and not worry about the real world and my illness. My night time medications would give me more of an appetite and I would relish the midnight snack. In contrast, mornings were awful. I couldn’t even get up in the morning so it really meant that the early afternoon was awful. I felt stiff, tired, lacking in motivation. I had to deal with boring administrative tasks and tedious chores. I had to exercise and find something to eat despite my lack of an appetite. I only had about four or five hours to get out of bed and complete the tasks. To flop back in bed after all that exhausting activity thus constituted a reward. After the opioid dose I often felt stimulated and more like myself, but the price was terrible, because I would feel such tremendous dysphoria and lack of motivation in the day time. Those years on HRT and opioids left me feeling like I was really starting to miss out on life, in a big way, in a way I could not even begin to imagine when I still had some kind of life. That’s why I had to do something radical about it.

During withdrawal I felt emotionally flat and I started to hate streaming shows. Everything was boring and repetitive. What was there to watch but endless entertainment about murders and other forms of criminal offences? I turned to Arte and watched documentaries instead, now I could at least learn something about Europe and the world in general, but my focus was poor. That’s when I realised I had enough of this and needed to get myself a life. A real life, at least a bit more like it used to be. And all those hours spent talking to software (ChatGPT) about my withdrawal, compounded the need for realness. 

Okay, so I try and wind down the evening before it gets the better of me, and turn off the lights and go to bed early like a good (normal) senior citizen. So how do I reward the morning instead? Hm, well it isn’t easy. I really don’t know why the British like to punish themselves with bad food but there is very little I like to buy that satisfies my taste buds. First of all, I still drink my green tea, but I feel less bad about it now because I drink it early enough so it doesn’t affect the adenosine levels (sleep pressure). 

I’m starting to think creatively again. I’m more motivated. I’m thinking I need to have something nice to eat first thing, something that goes with the tea, something that satisfies me now that I have a bit more of an appetite. I discussed it with ChatGPT, it was a good discussion because I ended up doing what I had intended for a while: I saved some old yoghurts from expiring, added eggs, sugar, lemon rind and juice, and some flour, and made a yoghurt cake, and to my astonishment, it was a success. I improvised, and for once, it actually worked. So it was a first step. The next step was to read through the leaflet that came with the bread machine I bought many years ago. The next step after that is perhaps to find a recipe for some Finnish buns with cardamom and then prepare the dough in the machine. The clock will change soon and I need to be prepared, and maybe, just maybe, if I can get up early enough, I can go into town and have lunch. So yes, there’s a bit of life in me now and I hope I can keep it up. And of course, ultimately there is something very simple, and it’s the morning light. I haven’t had mornings for decades and I really miss the feeling. Oh, and the tinnitus is quieter in the morning, too.