I haven’t been well. I haven’t been sick, really. Just incredibly fucking tired. Tired on a level that it is really interfering with my ability to function.
Sadly, I am supposed to be feeling somewhat better by now. I have been using a CPAP machine for almost three months. It’s not doing shit. Well, it might be, but I don’t have any way of measuring what it does. The machine reports and measures success based on a number that is not relevant to me. (I explain this further down.)
I have been struggling for a really long time and slowly doing less and less as my energy and focus levels have continued to fall. If I forgot to say happy birthday to you or reply to a message or didn’t say anything when you had something big happen, it wasn’t that I didn’t care, it was that I just didn’t have enough capacity in my brain to remember to come and do that and look at what was going on with everyone. Don’t worry, I would no doubt randomly remember several days later and hate myself a bit for being so useless despite putting in so much effort to trying to get things done.
This started as a Facebook post that got a bit excessively wordy for Facebook..
My sleep has been rubbish for a really, really long time. At least 10 years. I have bought this up with doctors before. Generally the first thing they will ask is “do you snore?” I mostly do not. So when you say that you don’t snore, that makes them eliminate respiratory sleep disorders from the imaginary differential diagnosis whiteboard in their mind. So next they ask if you fall asleep during the day. And back then, years ago, I didn’t. So then that crosses off other things like narcolepsy from the differential list. And basically leaves nothing.. i.e. user error. Tell the patient they suck and are doing it wrong. Don’t nap during the day. Don’t drink excessive caffeine. Don’t do exciting things before bed. Even if you already don’t do all of that, the fact that everything else is definitively crossed out from that whiteboard means that the only remaining explanation is that the patient is lying or exaggerating or just stupid and doesn’t know what they are talking about. (House’s Razor?)
So I’ve been just living like this for a really long time. Being really strict with myself, never having a nap even if I manage to find an hour or so to actually do it. I have one cup of coffee, first thing in the morning when we get up. I rarely drink Coke, and absolutely never after midday. The last year or two it just becomes “rarely” because even if I have bought myself one as a treat, I invariably do not remember that I have it in the fridge until much too late in the day to actually drink it.
A long time ago, if I ended up in a really bad pain state by the end of the day, it would generally resolve itselve by the morning and I could start fresh the next morning. It’s hard to say exactly how long it has been that going to sleep has not been a reliable reset, but.. it’s a while. But there were occasional times when I did feel like I slept better than usual, and that was, oddly enough, when I had a migraine. And that’s because when that happened I would take pills that helped me to sleep: panadeine forte and valium. So sometimes when I started to get extra tired and could feel things building over a few days where the pain started to approach what is referred to in pain circles as “a flare” I would take like a quarter or even an eighth of a valium when I went to bed just to give me a couple of hours of relief and let me keep going for a few more weeks. The reason I took so little is because I’m so sensitive to it, and if I take a full one I will be vague and out of it for days. That’s why I am also very sparing using anything with codeine, because the drowsiness side effect is so bad. But I’ve just had an interesting thought. AM I really that hypersensitive to the sedating effect of those medications, or is it just that when I take them, my body grabs tightly to anything that lets it get some of the rest it desperately needs? (There are of course other reasons that I try to minimise my use of both of those medications in particular but I have also had to consider clearance time whenever deciding whether or not I could afford to take something, even if by the standards of pain only I more than needed it.)
But anyway. The changes happened slowly. Maybe a year or two back I started noticing that sometimes when I would go to my mums it would get to a point where I really had to be putting a lot of effort to stay focused on the road on my way home. I used to drive to the Sunshine Coast probably a couple of times a year and I don’t think I’ve done that fully since maybe before Grandad died. Last year I managed to drive to Beerwah to get Teddy, and I brang a bottle of Coke that day.
There have been occasional times when I have just gone out locally and realised afterwards that I probably shouldn’t have, but those are usually when I was already feeling a bit shit, elevated pain or something and I thought I would be able to manage but misjudged. Things have actually gone downhill since my sleep test in February and starting to use the CPAP. I feel like it’s not doing anything beneficial for me and now I also have another thing waking me up in the night.
This whole thing has been a big learning experience, trying to learn about sleep apnoea and PAP machines and about the reporting the machines give and how you can look at that to figure out what they are doing for you and how to (hopefully) make it more effective. One of the first things everyone seems to learn when you go onto any major CPAP or sleep apnoea forum, Reddit, etc is that doctors are really rubbish at prescribing CPAP machines so that they can actually benefit their patients. It’s incredibly common for them to write a prescription for 4-20cm of pressure on APAP mode. Which is literally the whole range of pressures the machine can push air out at, in an automatic mode that is supposed to sense how your breathing is going and adjust the pressure accordingly. And that works for people who have perfect textbook sleep apnoea. Other people, not so much. And this may come as a shock to you but guess what: I am very far outside the textbook presentation of sleep apnoea.
I kind of both do and don’t have it. It depends on who you ask, probably. Sleep apnoea has two things that they look for when deciding if people have it, full apnoeas, when you stop breathing for a short time, and hypopnoeas, where you are still breathing but it’s too shallow to be effective. It is usually defined as something like a greater than 30% reduction in air flow with a greater than 4% reduction in oxygen saturation. I don’t have apnoeas and only very rarely have hypopnoeas. In fact one of the reasons it took so long to get diagnosed with anything is because 6.5 years ago when I saw a different doctor who has an informal specialty / special interest in “feeling shit with no explanation” conditions like fibro, ME/CFS, etc, one of the tests he did was a home sleep study. Not because he thought that I had any sleep disorder, but just because it was one of the panel of tests he liked to include when doing All The Tests to rule out everything else in order to make the fibro diagnosis. And that test showed that my sleep was indeed as shit as I said it was, the stages were all over the place.. but I did not have any apnoeas or hypopnoeas. And I expected that the results of that test would then be used to tell me how to fix my sleep. You know, what doctors usually do. Turns out that no, that is not how it works with sleep tests. They’re actually only screening for sleep apnoea so they can hopefully sell you a CPAP machine. If you don’t have it they aren’t really interested in you. If you protest and say, um, but like, there’s obviously something wrong, why aren’t you going to do anything, they say we don’t do that, if you want we can give you a referral to a sleep medicine doctor. Bitch, I paid you money, I thought that’s what you were. Anyway, at that time, the sleep medicine doctor cost an extra several hundred bucks which we could not afford and the GPs told me that there was no point in referring to the public sleep clinic because they generally denied anything that wasn’t obviously narcolepsy and had a negative test for apnoea. So I kept going until sometime mid-late last year when I said to the doc, yo, I have that several hundred dollars now, can you please refer me to a sleep doctor because my sleep is still shit and declining and I am reasonably sure it is not “just me” and even though I have lost most hope at this point I would like to just do it to make sure. So he did. She wanted me to repeat the sleep test but in a hospital because they take more measurements that can’t be done with the equipment used for the home test. The primary one of these being EEG, which is synchronised with the measurements related to your breathing such as chest movement and the airflow in your nose etc. I had to wait a bit of time for there to be an availability to go for that test so it was February when I had it.
So after the results were available we went back to that doctor and she was like, “so the test shows that you have severe sleep apnoea… oh but you don’t stop breathing in your sleep.” And I was like pls explain. So, the EEG showed frequent arousals, which is when my brain is coming out of deep sleep into the light stages of sleep. My average over the 6 or so hours that the test ran for was 48 per hour. This is a pretty decent number, not the worst I’ve come across but it does seem to be higher than most. When you put it in terms of this meaning that I am partially waking up approximately every minute and a half, then yes it makes complete sense why I am so fucking exhausted. And it also makes sense of why when I have described my sleep to people over the years I have said, “I am aware of being asleep and also aware that I should not be aware that I am asleep but I am not aware enough to do anything about it, or to control my dreams or anything like that.” It sounds like a perfectly good description of being in light (stage 1) sleep for much too much time. But I get the impression that no one else ever describes it like that because anytime I ever did they just looked at me like I was crazy.
But back to how I both do and don’t have sleep apnoea. So I don’t have the apnoeas and hypopnoeas but they could tell by looking at my readings from the test that every time I had the arousal on my EEG, I also had a “very slight” (that was the doctor’s words) reduction in air flow. Not enough to meet the technical definition of an official hypopnoea, not even enough to affect my oxygen saturation, basically insignificant by every single measure except for the fact that my brain is panicking and pulling me out of the deep sleep that I should be in so that my breathing resets back to normal. (Stephanie joked that this is OSA on anxious autistic mode.) These events are called RERAs (respiratory effort related arousals) and if you have those then technically what you have is a condition called UARS, which is Upper Airway Respiratory Syndrome. And among sleep medicine specialists there is not a clear concensus about whether or not this should be considered as a completely separate condition or as part of a wide spectrum of manifestations of Obstructive Sleep Apnoea. That’s neither here nor there so much but it does have relevance to me because that 4-20cm APAP setting that a lot of doctors write the script for pretty much definitely does not do anything for UARS, because by the time the machine decides that the air flow is reduced enough to warrant a pressure increase, it’s too late, our brain has already taken care of that shit by changing into light sleep. But the thing is that the machine on that setting will report that it is doing an excellent job at managing my sleep because the machine’s measure of success is reporting an AHI (apnoea/hypopnoea index) for each night that does not include RERAs and as we have established I am always going to show 0 for that. The problem I have now is that it took me a while to learn all of this and put it together with how it applies to me. So I had already been for my one month review with the sleep doctor who looked at the machine data and assured me that it was working as intended, despite me saying that I did not feel any better. “Not even a little bit? Are you sure?” And it made me feel like I was being pressured to say that maybe a couple of times I had seemed to have a less rubbish than usual sleep and maybe that was proof that it was working. But I didn’t really believe it but even though I am really aware of this stuff I still am vulnerable to feeling like you have to agree with the Highly Educated Doctor even if what you directly feel yourself is not in concordance with that. So the conclusion after that review was “it’s working great, we’ll review again in a year.”
From what I can tell by how people report their experience online, it seems like a lot of doctors are way too trusting of what the machine reports over what the patient reports and they seem to have an over confidence in how well the automatic mode works on the machines. Maybe the manufacturers have promoted them that way and they really do believe that they are that amazing. And when I had the review I thought that the doctor was looking at some sort of more in depth information than what I had access to through the app for the machine, like with graphs and shit, so she could tell that it was doing something even if I couldn’t. But no. They just look at the very simplified basic report which shows how many hours you used it and what the average AHI per hour is. Even in my sleep study though my AHI was 0, so I dunno, I feel like this is kind of a gigantic oversight on the part of the doctor, but on the other hand, it seems like they ALL do it, worldwide, so if that’s how they have been taught to analyse stuff it’s not really their fault directly. But also, it’s pretty simple logic that I feel like a specialty trained doctor should be able to manage. There are only a few doctors out there who are really focusing on the UARS component of OSA and how it differs in presentation but more importantly in treatment needs. Sometimes people with UARS will go undiagnosed for a really long time because it essentially can’t be detected by home sleep studies. That also means that sometimes people with UARS will be actually in a much worse state than people with normal OSA despite it seemingly appearing “less serious” because of the lack of true apnoeas and hypopnoeas but you can be having just as many or more arousals than someone with OSA yet appear to be perfectly fine on most home sleep studies. And shit gets worse over time as nothing gets done about it. I was trying to find information about how long it might take to feel better if the machine was doing something for me but you just can’t find that information, because there are no studies on long term sleep deprivation because it’s SO FUCKING BAD FOR YOU that it’s considered unethical to conduct them. Like literally the longest proper studies only last a few days or up to a week. One study I found determined that it takes four full nights of quality sleep to recover from the deficits you get from just a single hour of missed sleep. And when I think about that in terms of how much sleep I have missed, if I give what I think is a conservative estimate of 2 hours per night over at least ten years, the calculation for how long it could potentially take to recover (2 hours x 365 days x 10 years = 7300 hours x 4 nights = 29200 nights = 80 years) is fucking alarming. Because I probably don’t have 80 years. But it’s theoretical anyway. That assumes that deficits are exactly linearly cumulative and your ability to recover does not degrade as the issue becomes more chronic. But I can accept that I might never be entirely normal (in terms of sleep – I have known in the other regard for a long time) but I would like to feel less shit. Which is not even asking for a lot, I don’t think. Less shit is a really fucking low bar, and even that is not happening right now.
I am decidedly more shit. It might not be anything to do with the CPAP machine, I understand the premise of correlation not necessarily equaling causation. But it really fucking seems like it is part of the problem from my subjective perspective. Because in addition to a paranoid brain, I now also wake up several times a night because of the machine. As I have been increasing the pressure trying to get it to do something useful, it makes more noise. There’s not much you can do about that, air flow makes noise. Sometimes the mask will shift a bit as I move in my sleep and there will be a leak. That’s noisy. Thank air rushing out of a balloon, same kind of effect. I don’t like the feel of the straps on my head, turns out I have a sensitive area at the back and base of my skull and I really don’t like having anything touch there. Which is exactly where one of the straps sits. Some nights having it on seems to make me clench my jaw too which means I’ve been getting pain in my jaw, especially if I have other knots in my shoulder and neck on the same side. The jaw pain is uncool but the other things are things I could be inclined to put up with.. if I was getting something for my troubles. Doing all this annoyance and having it wake me up more and feeling myself become less and less able to think clearly as time progresses is hard to put up with. Any time I try to mention this people are just like, “you have to be patient, you can’t expect results overnight.” But how long do I “have to” be patient for? I have been using the thing for three goddamn months and I am considerably worse off now than when I started. Most days I do not feel confident that I have enough focus to even drive safely to Capalaba (~10 minutes). Sometimes I step outside to go get washing from the machine or something and I stand at the top of the stairs and feel the world spin. I need to have one hand on the rail and one on the wall. Coming up the stairs is slightly easier because I am tipped forward, (kyphosis ftw…?) if I am going to fall it’s actually less distance to fall on ascending stairs than it is if I fall on the way down. So I can carry shopping or washing UP but not often down. I get Daniel to take it down on his way to work most of the time. I am forgetting things a lot more too and just not being as with it as I used to be. I notice Daniel or Abigail getting annoyed with me and I feel stupid and useless. Abby gets annoyed when I ask her to go with me to the shops so I feel safer in the case, or she gets annoyed that I take too long in the shops. I do things like try to cook something without turning it on. Or there will be days that I just forget that I need to think of what to make for dinner until it’s like 2 or 3 o’clock and then I am panicking trying to figure it out and what will defrost and what everyone will or won’t eat and it’s just sucky. I am getting upset more often too because of how tired I am and how much doing anything takes out of me despite all of the effort I am making and it’s just never enough because I am just so fucking exhausted, my body and my mind. And then I did that stupid thing where I trusted someone who told me it could be fixed and be better and I’m following the instructions perfectly (I only missed 2 nights because I had migraines and just could not stand the thought of putting the mask on my head) and it’s not getting better.