Nov 18
My days are normalising into a pattern based around my current shape of ill health.
Sleep is difficult, but when I do sleep, then waking is difficult. State switching then perhaps is the difficult thing. There are consequences to this. My sleep refuses to hit some regular pattern and instead continually shifts backwards, as when I wake up I feel terrible, and my best periods are often when I have been awake the longest, meaning there is a high pressure there to keep sleeping or stay awake respectively.
I am idly considering turning to the outright evil that is some kind of sleeping aid, although I am very wary of such a crutch. But perhaps a nudge or two at the right point would be useful.
So. I get up late. "late". This is anything from 2pm through to gone 6pm.
I then stay up late. In practice, typically beyond 5am. Even if I attempt to sleep at any point beyond midnight, I don't sleep.
Sleep wise. I need an absolute minimum of 10 hours. 10 hours is feel like shit, very flakey, probably fall back asleep. 12 hours is a sustainable minimum. And 14 hours is typically where I can very slowly regain energy. At its very worst I will sleep beyond 18 hours in a day. These numbers are not one off, short period. These numbers have been like this for at this point years. Ever since I got ill in fact. Which at this point is 4 and a half years.
Nausea is worst for the first 3 to 6 hours of being awake. Eating anything beyond an apple during this period is a trigger to make the nausea worse. Eating nothing can make me feel worse. Eating something small can make me feel worse. Eating normally definitely makes me feel worse. Pick your poison. The best bet. Is eat incredibly light. The apple.
Eating anything beyond a small portion - a truly small portion - for any meal invites nausea, and or flaking out hardcore. Typically I will need to sleep, right there, right then, or feel god awful. So. Don't eat anything above a small portion. Eating to a stuffed level of fullness is almost always a bad idea.
First 4 to 6 hours of being awake are characterised by very low energy. Feeling ill. Sluggish. A pull to go back to sleep. Coping strategy is to do nothing energetic, rest, and wait for everything to warm up very slowly. Like the worst and slowest old car trying to defrost itself at winter.
Bouts of feeling weak, shaky, foggy head, dizzy, heart rate spikes when moving come and go. Somedays it disappears. Somedays it is very present.
Heat is an enemy. Warm showers now make me feel worse. Cold water makes me feel better. A cold environment makes me feel better but uncomfortably cold.
The upshot of all of that is, my days have a pattern.
Get up late. Go to bed late. Spend the smaller window of waking hours mostly knocked out resting, have a very few small hours of being a bit better in the early hours of the morning. Eat light. Eat specific things. Don't move. Don't do shit. Sleep very long.
All of that gives me the best shot of feeling the best I can. Which is not saying much.
Annoyingly much of this is perfectly in line with a CFS diagnosis.
Yesterday I learned something new about something called ROS, sleep, and what kills you.
ROS stands for Reactive Oxygen Species. And. As it turns out in recent research, it is these things that kill you. Very quickly. Within weeks. They usually accumulate as a consequence of being awake and Doing Stuff. Your sleep cycle cleans them up. Or at least. It should do. Sleep deprivation will kill you. And the reason it kills you is because of ROS. This isn't conjecture. This is a fact. This is what the recent research found out. And. More than that. It kills you in a single area.
Your gut.
If you are sleep deprived. Your gut slowly kills you. "slowly".
You can acutely feel this if you have a bad night of sleep, and you feel "shit" the following day. Or you are like many running on a continually sleep deprived sleep schedule and often feel like "shit".
This is a direct consequence of the ROS build up.
How and why and all the other things of the workings of this are currently a mystery. But that it is this, has been proven. ( the obvious research task now is digging into why this is the case ).
Also an interesting by product.
If it's all about the oxidative damage going on, do antioxidant things help in those specific cases of lack of sleep, high ROS etc ? Yes. They do. In fact. If you hardcore "overdose" on anti oxidants you can counter act the effects of lack of sleep. In fact further more, you can entirely eliminate that effect of lack of sleep. Of course, sleep does a bunch of other things too. So. You can't use this as a plan to never sleep again.
Again, this isn't conjecture. They tested for this. On rats ( killing people by sleep deprivation is rather frowned upon in the scientific community ).
So all of that is fascinating.
But it makes me wonder. About exhaustion. The effects of post viral syndrome. Long covid. CFS.
I wonder if this whole ROS mechanism is also at play for a host of problems where you feel like shit and have no energy. Because a lot of it feels very like being incredibly sleep deprived in my experience.
Also of note, none of this shit shows up in your standard shitty blood tests et al. None. Zero. Zip. Nada. So don't expect your incompetent GP to find it.
It does make me wonder.
It's something to scribble in the notebook.
Test big doses of antioxidant foods when feeling shit.
Small side correlation. The foods with anthrocyanins - cherries, blueberries, beetroot - that are good for gout, also are high anti oxidant.
Uh huh.
Also, science aside about oxidisation.
This term is thrown around a lot. But. What exactly does it mean. It literally means reacting with oxygen. Oxygen is very reactive and likes bumping into things and merging with them. In fact. Almost everything. It's just that friendly. Or violent. The upshot of this is that oxygen likes changing things from one thing to another thing. Iron. Into rust. Feed a lot of it. And it's fire. And burning. Very reactive. Give it a lot of things to react to, and it will do so incredibly quickly. In the blink of an eye. And then you have a bomb.
One way to think about it is that all oxidative processes are basically like burning. But at different speeds. Something on fire, or, explosively on fire, is the fastest. But something quietly oxidising over time is also on fire. Just slowly.
In that context, within you. Oxidisation is everything inside you, slowly burning. On fire.
It does what you think it does.
Bad things.
It's also an absolutely required part of physiological processes. Without it, you would be dead.
But also, it's like being on fire.
In other words.
You only work, if you've poured gas on yourself and lit a match.
If you dont do that - because that sucks - you die.
Tricky.
In the normal course of events your body counteracts the consequences of much of this oxidative stress. In practice however, over time, like any system constantly under stress, it can be a problem.
Another way to think about this is an internal combustion engine ( also, an oxidative process - that would be the combustion bit ! )
An internal combustion engine is useful because it goes boom, and turns boom into "work", which, more typically, makes a car go along a road. Or if you're an off grid type, turns diesel into electricity.
Great.
But also. All those booms. And moving bits. Are stressful and damaging. And overtime that poor old combustion engine gets fucked up. Eventually. It wears out.
That's you.
The booms are not audible. The combustion is not visible. But that oxidative process is going on in countless places all over you. A slowly burning fire.
Mostly, you can ignore it. And remarkably your body has a self repair facility. Your engine is rated for many miles before it conks out. Probably. Possibly. Maybe.
So wait. If I stuff myself with anti oxidants I am fighting the fire and prolonging my mileage ! Yeah. Not really. It's more like hosing down the seats in your car with a fire extinguisher to protect your engine.
Uh huh. Not exactly useful.
Still. If the inside of your car is prone to catching on fire from an overzealous engine. Then maybe that's useful. And fun fact. Your car IS prone to catching on fire from an overzealous engine.
But probably not a huge amount.
That being said.
Most science says that a diet rich in anti oxidants is protective against a host of problems and diseases.
Another way of saying.
It slightly curbs the effects of all that burning.
The more you know.
Also.
You are a flawed creation. Shitty design. Whatchagonnado.
Full circle, we get back to ROS.
In fruit flies - the ubiquitous test subject - ROS build up because of sleep deprivation killed them within a few weeks. Also. Recovery from sleep deprivation was difficult and time consuming. The damage is very real. The oxidative stress is hardcore. Lethal, in fact. And slow to heal.
Fascinating.
The flame that burns twice as bright burns half as long. ( also of course, it's fire, an oxidative process )
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