hah, suck it

jade, 1452 wordsLeave a comment

That’s what Daniel said to tell the voice. The one that keeps trying to make me doubt myself. Isn’t it kind if interesting, in a psychology type of way, how it is always about doubting my value to him, my worthiness of him, my competence as a wife and mother. It’s never “does he really love me?” but more like “why does he love you when you are obviously rubbish? what have you done to make him think that you are not?” Sometimes it is more like.. “one day he will realise that you are not actually any good and will find someone who really does have all of the qualities he thinks you have.”

As ridiculous as saying “hah, suck it” to this inner part of myself is, I have actually been trying to do it. The levity of the words actually kind of helps, as well as of course the deeper meaning of what he was actually saying when he began with that. It’s almost a kind of… hmmm, juvenile comeback and the incongruity of that to the heaviness of those thoughts and feelings is great enough that it helps to break the hold.

I think I have probably specified before, but I’m not certain, so.. there is no actual voice that exists as an entity that I perceive as separate to myself. It is a hard concept to translate into words. Although I have an inner voice (and mind’s eye), I am aware that not all of my thinking happens on a verbal level. Some things seem to exist also as a kind of hybrid of a thought and a feeling, or they are thoughts that have such intense attached feelings so as to be essentially inseparable for the purposes of trying to describe and define them. Generally, I think that you don’t really consider where your thoughts come from when they make their way from the subconscious part of your mind into the conscious part. I don’t always. But when I do, I can tell the difference between thoughts that have come from the part of my mind that is entirely me, versus the part of my mind that exists in a permanently brainwashed state of self-doubt, self-hate, self-loathing. If this was a physical wound it would be a scar, a large, rough, discoloured and unsightly one that frequently pulses with pain despite the original thing that caused the injury being long gone, because the nerves and tissues are damaged. So when I talk about ‘the voice,’ this is what I mean. If I don’t pay close attention, it sounds and feels enough like my own natural, unadulterated self that it is essentially indistinguishable. Only when I take the time to consider the detail and content of these thoughts and feelings that come to the surface via the medium of my inner voice can I tell that some of them come from something else, some part of my mind that isn’t working properly and isn’t genuinely reflective of me.

The hard part of that is that it is really exhausting all the time to have to question if my thoughts and feelings can be trusted, and if the answer is no, to try to convince the rest of my mind that even though they look and feel native in so many ways, these are very much actually an invasive species and should not be given any room to grow. I devote so much mental energy and bandwidth to trying to stop the invasive thoughts from taking over, and sometimes I wonder what else I could be achieving with my mind and thoughts if I was not using so much of my capacity to do that.

Those can be dangerous thoughts to have, too, though. Like what could I be doing, what would our situation be if I didn’t have fibromyalgia and hadn’t lost so much ability to be productive? What if I hadn’t spent the last fuck-knows how many years slowly losing my ability to sleep – would I ever even have been diagnosed with fibro? Would it have been as hard as it is to manage the thoughts and feelings? It’s an interesting thought experiment but it is both too tempting to consider that I could have been “completely fine” and too difficult to imagine what that actually would have looked like. Despite the limitations that these states have necessitated that I live with, I have tried to carry on like they weren’t there and sometimes probably to my own detriment. So I don’t know that I would have actually done that much more, I just would be a lot less decrepit for it.

Something that often seemed odd to me was that if I forgot to have my medicine for some reason, the next day I would be fully unable to stay awake. Like, falling asleep with a cup halfway to my mouth kind of absolute inability to do stuff. Even worse than what I ended up like the last few months where I frequently fall asleep, just never literally in the middle of having a drink. And this did not make sense because when I first started taking Efexor, it made me drowsy like that within an hour or two of having it, which is why I switched from having it in the morning, as is usually recommended, to having it at night instead. So I didn’t understand how a drug that made me sleepy could also make me sleepy by it’s absence.

I think I have a kind of theory about that now. On Sunday, I made the second dose reduction in my initial phase of this plan to improve my sleep. For four weeks I was taking 262.5mg a day, and now I have begun four weeks that will be at 225mg. Then there will be a 187.5mg period before going to 150mg. At that stage I want to assess how things are going both mentally and sleep-ishly before I decide how to proceed further. Over the last month I haven’t really noticed any lessening of the day time sleepiness, but I also haven’t had any of the incredibly unpleasant side-effects of SNRI dose-reduction, which is a big positive. I have noticed a difference between the days where I’ve had some valium before bed and the ones where I haven’t. Even though I’m only doing that at the weekend, the effects on my day time state last a day or two longer – it is usually Tuesday or Wednesday before I am struggling markedly more with staying awake. Yesterday and today, though, there has been a small but noticeable difference in how sleepy I am, which I wasn’t really expecting. But that brings me back to my theory. So for whatever reason I had a side-effect of essentially immediate onset sleepiness when taking the medicine. And over time, it’s also had a more subtle side-effect of cumulatively interrupting my ability to go to Stage 3 and REM sleep phases up until I got to this point where I was like, come on there’s seriously something wrong. I think the reason why I feel such overwhelming sleepiness when I have missed a dose or even the subtly increased sleepiness yesterday and today when I’ve had just a little bit less of the drug is that something in my body and/or brain is recognising that the substance that stops it from reaching those stages of sleep is absent/reduced and the response is, well then, let’s go to fucking sleep finally! Because the lack of those types of sleep have become such a dire need that it’s almost like my body is constantly attempting to begin that process instead of just restricting it to night time like a person with a normal circadian cycle and undamaged sleep ability would do.

That makes me a bit mad about all of the times when I was fucking exhausted and even had a headache or something and I forced myself to not have a nap, because all of the doctors told me that if I napped in the day time it would just make it that much harder to sleep at night. Yeah, maybe if those naps ever had the potential to provide me with sleep of adequate quality and quantity, they might interrupt me sleeping at night, but they never fucking did. So in denying myself those, I felt shit physically, I felt shit emotionally and mentally because I felt guilty about wanting a nap I was being told I shouldn’t have, and I was even in small ways contributing to the worsening of this problem by exacerbating the sleep deprivation when I didn’t have to.

hah, suck it

psych

jade, , , 4869 wordsLeave a comment

I have been thinking a bit about the last time I tried to get help from a mental health professional. We had gone to the Adult Mental Health place at Cleveland again and they asked me so many, many questions, hard ones – not hard because I didn’t know the answers but hard because sometimes to articulate something you have to feel it again and those are not nice feelings. It takes effort.

They make it seem like they care and are listening to you and taking notes so that they can help you. It seems like it’s getting to the end of this “please explain all of the ways you are broken so we can see if we can help you” and then they ask two more questions, so casually, like it’s an afterthought more for curiosity than anything else.

But in reality it’s your answer to those two questions that determine whether or they think you’re worth helping. If you say no, you aren’t thinking about harming yourself, and no, you aren’t thinking about harming anyone else.. then the assesment determines that there is little risk in returning you to society and telling you to get your help somewhere else.

Actually, that was wrong. As long as you’re not considering harming yourself or someone else, you are “fine.” I made the mistake one time (apparently) of saying that I did sometimes think about that, harming myself, and then got interrogated about what I planned to do. I said I wasn’t going to do anything. I think about it, in an academic sense, not in a scheduling sense. I think about lots of things I have no intention of doing. But apparently I’m the first person in the history of the world to ever think about hurting myself or ending things for science instead of for practise. For people meant to be helping and reassuring you that you’re not actually crazy, they certainly dropped the ball there.

My cynical part says it’s just because they need to be absolutely sure you aren’t going to leave and go on a killing spree, whether or yourself or others or both, because if that happened they’d be in big trouble. People don’t like it when they read in the news that a crazy person did something bad after trying to get help for being crazy and getting sent away.

So, anyway. They decide you’re not a harm risk and therefore there isn’t room for them to help you but they have this really helpful list of psychologists and if you go to your GP and ask for a Mental Health Care Plan, you can take that to one of these psychologists and you can have 5 sessions and it won’t cost you anything.

They believe that.

In reality, the list of psychologists hasn’t been updated in fuck knows how long, three quarters of them are no longer working at the practises listed, three eights of them are not accepting new patients at the moment or charge a huge fee on top of the MHCP.. and if you’re lucky you might find one who will give you an appointment.

Luck is relative.

Turns out, this psychologist is actually really retired, but was kind of bored, so decided to see people one day a week on MHCPs as a two-birds, one-stone way to pass some time and do a good deed as well.

I don’t know if the problem was me or if maybe this person hadn’t done any professional development in a very long time, and had some outdated information about how people work.

Because I tried to explain that because of my past experiences and things I was taught to believe about myself, I struggle with trying to overrule those thoughts.

I have irrational, fear based reactions when people I care about express irritation towards me, or in proximity to me – even when I’m relatively sure I haven’t done anything wrong – because whether or not I did something wrong isn’t really relevant in whether or not they might be angry at me…

I try so hard to squish it down, literally bite my tongue and hold my breath and use all of my brain power trying to make my eyes not give away that this is happening. Because I know it’s irrational and it’s not fair because the people it happens with now have never given me any reason to start fearing what is going to happen next. That it’s going to turn into several hours of just being berated and told, over and over, all of the ways in which I am just a poor imitation of a proper human being; selfish; abnormal; a disappointment. Don’t I think that if my mother knew how horrible I really was, she’d be heartbroken and disappointed? And I’m lucky that she is such a good person that it never even occurs to her that I am so bad. And of course the person telling me this isn’t going to tell her, and do that to her, because they are not like me.

More than twenty-five years, now, and every time he is a little bit snippy because he has a headache or he’s hangry or just because he is a human being and every fucking time I have to

there was a two day gap here, because I got too worked up trying to write it. let’s see if I can keep going.

Sometimes it is Daniel and occasionally it is one of our children. But every fucking time I feel that flood.. of something, in my chest. It’s probably cortisol and adrenaline coming out of my adrenal glands and I feel it first around my heart and lungs. I feel it starting and I desperately try to tell myself no, this is not that, you don’t need to do this, we don’t need those hormones and the shaking and the tears and the burning face. I tell myself it’s a minor irritation about a single thing which is really normal and it doesn’t mean they’re blaming me. I try to. But that nervous system reaction happens so quickly that it is beyond my control to stop. And the more I try to hold it at bay and the more I fail, the more guilty I feel for being broken and stupid and reacting that way to someone who has never hurt me like that.

Daniel obviously knows why this happens but I think sometimes he (and everyone else) doesn’t really understand how intense it is for me, how much effort I make inside to try to have it not happen and how little it can take sometimes to make it happen. When it happens sometimes he will ask me why I am crying, because he actually has no idea, because to him the exchange was of such little import and intensity that it has already passed from his mind. And most of the time he will remind me he was just irritated, but not at me and give me some tissues and give me a hug. Sometimes when I take a bit longer to calm down he says all sorts of things to try to distract me, to help break me out of it, to make me laugh, to make me feel less powerless.

“What do you call a one eyed dinosaur?”

“If I ever see her, I am going to fuck her up.” It’s the sentiment that counts, because I doubt he could even pick her from a line-up. Sometimes I wonder if I could, even, after all this time. In my dreams (should I call them nightmares? I kind of think of those as having non-human monsters,) I recognise her, of course, but it’s an odd kind of fuzzy older version of the face I remember.

“You just got to let things not bother you, like I do. Let it go in one ear and out the other.”

“What’s the difference between sand and period blood?”

And, I very much appreciate him doing this and it does help to break me out of this heightened state, but the thing is that the whole time he is trying to make me feel better, the broken part inside me is pushing back just as hard, telling me that I’m just still lucky that he hasn’t yet realised and understood that he has married a dud, that one day he will realise how stupid and useless I am, that maybe next time this happens it will be the time that he decides, fuck it, I don’t need to deal with being insulted like this all the time as if I’m doing something wrong when I’m not. Or sometimes, just for a bit of variety, that he already knows all of that and he is just here because he is a good person, not like me, and he feels sorry for me and how pathetic I am so he puts up with me because he is a good and a kind person, not because he actually loves me because of course he doesn’t because what is there to love?

I think sometimes that is why my mind is so active, has so many threads going at once.. because it needs to, in order to make more noise than the broken part in the subconscious that keeps sending out those thoughts that do their best to convince me that I am the person that someone I was supposed to be able to trust, a long time ago, told me I was.

The trust part is the part that made the difference. I can remember kids being mean to me at school, really fucking cruel sometimes even, and it upset me but it hasn’t left parts of my mind broken and brainwashed into believing that what they said about me was true. Because they didn’t have authority, they didn’t have a position of trust. And also, it was a lot less intense. Lunch time ended, school ended, and it might happen again on a different day but there was just as much chance that they would be mean to someone else that day or have forgotten they ever said anything nasty to me. She always disclaimed herself by saying, “I’m not your parent, I’m not anything, I’m nobody, I just live here.” And I’m intelligent enough to recognise that those words contain part of the story about why all of this happened. To everyone else outside of our home, she wasn’t my parent, she was just some person that happened to live with my mother and I; perhaps they realised that it was roommates and not just roommates, perhaps not. But I accepted her as my parent almost immediately and now in reflection I don’t think she knew what to do with that. I’m fairly sure she never had a child in her life plan, and even when she met a woman who had one it was ok because the child lived with her father and they’d only have to deal with her every two weeks and sometimes in school holidays. Then the child’s father had the selfish audacity to die (fucking MEN amirite /s) and everything was fucked. I assume she told herself, and maybe even believed, that she could tolerate me if it meant getting to keep my mother. I think at first I was a novelty. I was probably the perfect age for being tolerable without being difficult. Past the messy baby and toddler stage, able to do shit by myself some of the time and reasonably agreeable. Wasn’t until a few years later that I got a bit older and became more of my own person with my own ideas and personality that I became a problem. I’m fairly sure she had two very rigid ideas about who and what a young girl could be: she could either be a proper little girl who did little girl things like sewing and cooking and was ready to grow up and be a good wife and mother; or she could be an active, sociable, sporty tomboy who pushed all the rules to stay out late doing undignified unladylike activities but ultimately knew she would still have to be a secretary one day. I was not either of those, because it was the 1980s not the 1950s and people were a lot less uptight about gender roles, and I think that is what led to her forming the opinion that I was flawed as a person, because I wasn’t the perfect little girl she had not been, nor was I a reckless rule breaker disappointing and scandalising adults everywhere. I don’t think she had any other template for what to expect from me so logically it made sense that I was broken, and as an adult in my proximity but who was certainly not my parent, it was her responsibility to tell me just how very wrong I was. Whether or not it was supposed to make me change who I was so that I was not a misfit or just supposed to make me feel terrible about being one, I’m not sure. Maybe a bit of both.

An oddly funny thing is, I’m actually very much like my mother. Someone she supposedly loved so much she wanted to spend her life with her. Just about every thing she ever criticised about me is a trait or interest I share with my mother. I don’t know why it was good on her, but a mistake on me.

The insidious part of what she did was the part where she convinced me that I was so fucking fortunate that none of the other people in my life had yet realised that I was a badly formed, pathetic excuse for a human. That’s the part that made me ashamed of myself and ashamed that she “had” to point all this out to me and ensured that I would never actually properly express to anyone the extent of how absolutely cruel to me she was. A lot of people knew that there was friction sometimes, disagreements or differences of opinion. Even my mum. But I never wanted to tell anyone just how big it all was because to do that would mean having to reveal the extent of how bad of a person I was, and I desperately didn’t want people to realise that and abandon me because of it.

The fact that I had accepted her into a parental role, and I know she knew that despite what she said out loud, meant that I trusted and believed her when she told me those things.

And children are programmed, wired, primed, however you want to describe it, to trust and believe the people that they rely on to meet their needs. Even when they are also doing unimaginable amounts of damage to your developing mind, sense of self, sense of worth. It has caused a whole bunch of my neurons to be programmed to repeat that message to myself, so that I don’t ever forget it, even when the person who put that programming in place has been absent from my life for longer than she was ever in it. ‘Cause that’s how brains work, and most especially children’s brains. “Learning sponges” that soak up whatever they are taught, regardless of whether or not it is actually good for you or correct.

So that brings me back to this last psychologist I saw a few years back. I had managed to express some measure of what my issues were, that I had these overly intense and inappropriate reactions to what should be innocuous interactions, and I don’t want to. I want to find a way to make that stop happening. Because it fucking sucks, and it is painful to me and sometimes even to those around me who have to wonder why I am reacting that way when they didn’t do anything worthy of it.

And this guy said to me, “but if you know it’s irrational and incorrect, then it’s not really a problem, is it? You just tell yourself that and the fact of you knowing intellectually that it is wrong overcomes the issue.”

And I was like, “Um, no it fucking doesn’t.” And it didn’t seem possible to make him understand that simply knowing the reason for my reactions and knowing that it’s not normal isn’t enough. It really made me question whether he was the idiot or I am; because apparently he has professional qualifications and education on how to help people with this stuff and he was absolutely certain that simply knowing the problem exists and is abnormal is equivalent to having solved it.

But I think to myself, someone having blackouts or seizures or something like that doesn’t go to the doctor and explain all their symptoms for the doctor to say, “Good news! It’s just epilepsy. You can stop worrying now,” with absolutely no other treatment, medication, warnings about things that could be dangerous, etc. No, of course not. People try to reduce the chance they will have episodes like that as well as making sure they can be as safe as possible when they do still happen. They don’t just start to feel their consciousness fading while cooking at the stove and think to themselves, “Oh, it’s just that pesky POTS,” and stay completely still and collapse over onto the hot burning stove because as long as you know what’s happening it’s all fucking fine.

Would be nice if I could get a dog who would tell me when I was about to have an existential crisis and help me prevent it from happening. Of course that would require the dog to be actually precognitive instead of just having senses far superior to our own.

I want to be able to hear people express something negative, which is completely normal for people to do, and not automatically assume that it’s my fault and start that frantic internal process of trying to pretend it isn’t happening and stopping it from happening at the same time. By the time I get the chance to try to logic myself out of it, it’s way too fucking late. That faulty neural and limbic avalanche has already started and there isn’t any logic or intellect in the world that can neutralise all of those chemical and electrical signals until they’re just spent. It is painful and exhausting. I want to teach my brain and my body to not do that, not just ineffectually tell myself afterwards that everything will be ok.

I want to be a person who feels ok about myself more often than I don’t, rather than one whose default mode of existence is believing that I suck and one who has to exert constant effort to ignore and counter that inner voice. I want to be a person who is occasionally insecure rather than a person who is occasionally sort of not entirely unconfident. I don’t want being conscious to mean I am in a constant battle to anti-brainwash myself, which clearly doesn’t work anyway.

I don’t want every good or nice thing that Daniel does that would make Green Flag Guy get excited to make a mean voice in the low, dark part of my mind to say, “Don’t get used to it. Ever. It doesn’t matter how long it takes. One day he WILL realise you don’t deserve him.” I don’t want to have to argue back every time I feel proud or impressed with something one of our children does and it says “that’s nothing to do with you, that’s in spite of you. All the times you felt like you weren’t good enough of a parent, you were right. They’re just lucky they had another parent who isn’t a disaster.”

I don’t want to feel guilty every time I feel pain or exhaustion and hear the inner voice say “see!? Everything about you is badly designed and malfunctioning. You are a bad person, in a bad body, with a bad mind.” Though that is the one nastiness from the broken part of me that I feel like I am sort of able to semi-successfully rebut. Because there’s lots of studies and evidence to suggest that a big part of the reason bodies don’t work well is due to the stresses and trauma of the past. There’s even a checklist to see how many Bad Shit you have experienced in your childhood and how much risk that puts you at for experiencing other Bad Shit as an adult. (Adverse Childhood Experiences.)

I want to make that horrible voice be silent, not just constantly try to refute what it says, with varying levels of success.

Supposedly it is possible to recover from the effects of abuse and learn to be normal again. I just don’t know how to do it on my own.  And that’s why I’ve asked for help, so many fucking times by now. But the constant agony of living inside a mind convinced that you are a terrible, horrible, pathetic failure of a person isn’t enough to make me worth any of the help the public health system is able to give, because their measure of success is “physically alive and likely to remain that way.” And the private mental health system is not any better; there is SO much demand and so little availability and the costs of that kind of treatment are considerable. Especially if you are the kind of fucked up where it’s obviously going to take a shitton on sessions to get anywhere.. if you even find someone that is able to help you and doesn’t just try to convince you that understanding the reasoning and the background behind your mental health woes is the same as curing them.

So that’s why I have accepted, a long time ago, that I’m probably going to need to take medication for the rest of my life to keep me at this level, that while it isn’t optimal, is just vaguely manageable. And I honestly don’t have a problem with it if I do need medication, I’m not anti-drug in the slightest. It does bother me that I just have to settle for this place right here with little likely chance of ever being able to explore whether or not my mind can actually be healed at all.

Medications rarely only do the thing you want them to do and nothing else, though.

Stephanie suggested to me a while back that maybe it was the anti-depressant medication affecting my sleep, because she noticed her sleep go a bit shit when she first started taking it too. But when I first started taking it, it actually made me crazily sleepy, so much so that I had to move to taking it at night instead of in the morning. And that way the sleepiness hit when I actually wanted to be sleepy.

Then I had the sleep test in February and the doctor was like, see, you totally do have sleep apnoea except a barely there form of it that is hard to detect. Do a CPAP, it will definitely fix you.

As I previously established, that has not been the case, and because I want fucking answers and to go to sleep and wake up feeling refreshed, which I understand as a concept but actually truly cannot remember what it feels like anymore, I have been doing so much research and looking over the sleep tests and looking over the data produced by the CPAP machine each night and just trying to find anything that might explain why it wasn’t doing what it was supposed to and how to fix that.

Finally, I noticed a small detail on both of my sleep tests, both the 2018 and 2025 one. Each of them recorded a lot more arousals than respiratory irregularities. So that suggested to me that the respiratory stuff, the “very slight” reduction in air flow as the sleep doctor described it, is not the main cause for me flitting between sleep stages like a directionless butterfly, because more than half of the arousals apparently happen when my air flow is just fucking fine.

So if it wasn’t the breathing, what is it? That bought us back to the medication, and I looked up the research and well, there’s a fucking lot of it that says that in some people venlafaxine heavily interferes with acquisition of both Stage 3 and REM sleep states. My test in February didn’t detect me ever entering either of those states, it was just a constant bounce between S1 and S2. My 2018 test did detect some S3 and REM but much less of them than there should be and more of the other two than there should be. So it appeared that both of the tests support the theory that the medication is what is fucking with my sleep, and it was bad 7 years ago and has been progressively getting worse..

It’s not like I never told anyone what medications I take. I am honestly incredulous that all of these doctors, sleep specialists and GPs alike, had that information right in front of them, as well as extensive data on how damaging venlafaxine can be to sleep quality and none of them ever thought “hmm, that’s something we should look into.” I LITERALLY HAD TO BUILD MY OWN COMPETENT PERSON TO FIGURE THIS OUT, and she hasn’t even had a fraction of all the magnificent education they supposedly have. Perhaps there is something to be said for that adage about wanting something done right.

That brings me to why I have made a huge and difficult effort to go into a level of depth I don’t think I ever have before about what the inside of my mind is like. This is what I am like, damaged, but at the best I have managed to be with both the counselling I have had in the past (and sometimes in spite of it) and the medication. But if I continue on this path of extreme sleep deprivation I will lose all ability to function and it will probably eventually kill me. Not next week, it could still be another 10 years, I don’t know, it’s hard to find concrete data on the long term effects of sleep deprivation which I think I mentioned before, but I have been able to feel that it was a real possibility that it was becoming a direct threat to my health, not just a melodramatic “oh I’m so tired I could die.” That is actually terrifying because sleeping is meant to be the easiest thing in the world and to not be able to do it properly and know that it is affecting you more and more is .. scary. Proper horror movie scary.

I need to try to start reducing the amount of venlafaxine that I take. Unfortunately, venlafaxine is somewhat well known for having a fucking shit show of discontinuation symptoms, even among other similar anti-depressants. I have even had some of them myself one of the times we sought help and the guy said that if I reduced my dose we could add in another medication so the combination of them would work better and then after I spent a month in misery with a constant headache and nausea he said actually, yeah, nah, I think you should just have some vitamins instead. So I’m doing this but doing it really slowly. I’ve been on 300mg, the lowest size the pills come in are 37.5mg, so I’m going to reduce by that much and try maybe a month at a time, to hopefully avoid symptoms and give my mind time to adjust and hopefully not slip back into the abyss. I say that somewhat casually but it is a real concern. I don’t want to go back there, where I was unable to keep a lid on all of the negative thoughts. My hope, for a best outcome, is that I manage to slowly taper at this rate so that I’m only on 150mg instead of 300 and that is enough to restore my ability to sleep without being too much that it erodes my ability to stay out of Tartarus. In reality I have no idea how this is going to go. There’s a reasonable chance that I am going to start falling back in there. And in the absence of proper psycho treatment of some variety, I am hoping that by having taken the time to lay out the full detail of the dark nooks and crannies of my mind, and then asking them to read it.. and then hopefully no one proving the cranny-voices right.. I will have a better position inside myself to fight back from. If I have intentionally made all of the people I care about aware of all of the broken pieces in my mind then the fear of them one day realising shouldn’t be something that can harm me anymore. Maybe. Eventually.

I am throwing myself at the ground and I really, really hope I manage to miss it.

psych

sleep things

jade3736 wordsLeave a comment

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.

sleep things

anyway..

jade1793 wordsLeave a comment

Like it’s not almost five years since I wrote. Judging by the date of my last entry I am going to guess that was because that was when we were confined to our houses and I was expected to do not only all the normal things that I do but also be a teacher to two kids at once.

Haha. But like, not. It’s more, haha.. I kind of tried to block that shit from my memory. And I kind of feel bad thinking about how much it sucked because I only had to do that for one term. I know in other parts of the country and world people had it do it for much longer. Daniel didn’t have to work from home because they had few enough people and a large enough office that they could be widely spaced and minimise risk. The only times he had to work from home were when there were short lockdowns to stop new outbreaks and one those ones school was just cancelled I think.

I think it was Abby who mentioned to me recently that they didn’t even get graded on any of that work that they did during the school-from-home period. Which I had not previously known. It kind of made me mad all over again, tbh, because there was so much pressure on us (me) during that time to make sure that our kids were getting their work done and to assist them with it and explain anything they didn’t understand and it was made very clear that not being in school and being taught by a properly trained teacher was not at all an excuse for not getting things done. There were a lot of things we struggled with. I would cross back and forth between Abby sitting at a computer in the dining area and Kristian sitting at Daniel’s computer and try to guide them on what they were doing, and I’m not stupid by any means but I’m also not a fucking teacher and nor do I want to be because fuck that shit, so expecting me to do it as well as someone who has been educated and gets paid to do it is a HELLA DICK MOVE and they never thought to maybe say, hey, just do your best. We don’t want to interrupt your kids’ education, obviously, but we know it’s a fucked up situation so we won’t record any official grades for it. NO THEY DID NOT. They made it seem that if I didn’t keep their learning perfectly on track then I would be solely responsible for their degeneration into the undesirable dregs of society.

Well, anyway, jokes on them. We can become undesirable dregs of society with or without their stupid education.

I am grateful that we have a public school system but at the same time I am so fucking appalled at how shit it is. And just because other places may have an even more shit education system than ours doesn’t mean we should shut the fuck up and not say anything about it. So many things I have to explain to the kids sometimes and I’m like, “Why the fuck am I explaining this? Did you not learn this in school?” No. They did not. Which is silly because I know that I did learn many of these things in school. Like there’s an election at the moment and it’s Kristian’s first time voting and I had to explain all that stuff, and I also had to tell Stephanie and Abigail when each of them turned 18 too. How does a supposedly comprehensive public education system neglect to teach students about the fundamental functioning of the way we organise and govern our society? Or maybe a better question is why was this removed from the curriculum at some point between when I went to school and when they went to school?

And don’t even get me started on how it lets down and neglects any student who is not perfectly in the middle of average and typical. Both those with learning difficulties and those who learn with unusual ease and speed. Especially anyone who isn’t neurotypical but not affected enough to need specialised, dedicated services. The teachers for the most part, while they are incredibly well intentioned and dedicated to their jobs, just do not have training on the needs of diverse children while still being expected to teach them. Not to mention being expected to teach a lot more students than is ideal as well. For the most part I don’t have criticisms of teachers. With a few exceptions, most of the teachers I have interacted with over the last 15 years have been amazing people who are passionate about providing children with the skills and knowledge they need to live in the world. I am fairly certain that many of them are quite aware of the many ways in which the system they work falls short, and they do what they can to try to make it better. But it is, ultimately, a systemic problem, not one where individual teachers can just decide to do things differently in order to solve all the problems. I’m not even an expert, in fact I barely have any understanding of the topic, but even I know that the academic and scientific understanding around how children learn, what they need to excel and thrive and meet their potential has come a long way in relatively recent times. But there hasn’t been any significant change to the way we provision education since the beginning of public education where we acknowledged that a society is better when all members have been provided with the same basic, essential skills and knowledge.

This might be one of those things that marks me as a stupid, idealistic, bleeding heart liberal snowflake. When I think that this should be a huge priority for our governments and society – because we place children into this system for such a huge chunk of their formative years, and if the system is increasingly not meeting the needs of the students it is supposed to be serving, then it is not producing healthy, well-prepared young adults ready to take on the world and make their mark; it is producing disillusioned, anxious, depressed, directionless people who think that they don’t matter and what they do, think and feel don’t matter and wonder why there is any point in trying, and furthermore there are huge gaps in their understanding of the working of our society and economy that simply should not exist because, for fuck’s sake! But I suppose it shouldn’t really be surprising. I believe that I have seen statistics that most MPs send their children to private schools so of course they don’t give a fuck what is going on in the public schools. Just like they don’t give a fuck what is happening in public hospitals and with people who rely on bulk-billing GPs and PBS listed medications to just stay alive. Why would they, when they can afford to pay for better.

Yeah, that’s another radical idea I have. Sitting MPs annual wage/salary should be set at the average full time wage for either the state or federal level. They should not be allowed to hold private health insurance, they should not be allowed to send their children to private schools. How can anyone be trusted to truly make decisions for the good of everyone when they do not need to rely on the systems that they make decisions and policies about? They are supposed to be representatives of the people. So act like one of the average people. I saw an argument against this kind of idea saying that it’s silly to think that politicians will do the right thing if they are only getting the average income, it will only make them more likely to want to take bribes or “donations” from various sources. And if that’s the case then that’s exactly the people I don’t want to be in my government. And additionally, if you think that limiting someone to the average income and the publicly funded services is going to make them so downtrodden that they can’t help but to become corrupt… how is it ok to expect that of literally everyone else in society who has no choice but to take the salary they’re given and use the services their taxes pay for?

I don’t know where it started but I have seen a thing a bunch of times online where people are answering the question, “What radicalised you?” And with so much UTTER SHITE going on in the world at the moment, there are a lot of people who are expressing their discontent and talking about how they came to realise that the status quo isn’t actually fucking great for a lot of people. I don’t think I “became radicalised” so much as I became more aware. I have always had opinions and views that lean towards taking care of people because that’s simply the right thing to do in a society. Whether  that means making sure they have the same rights as anyone else or it means providing for their basic needs because they lack the ability to do so themselves. It’s just that I used to believe that (at least in Australia) we actually mostly did that – because that’s what we are taught. You don’t have to go bankrupt for medical care in this country, you don’t have to be homeless if you have a disability that means you are unable to hold a job. We make sure people have what they need. But it turns out it was a lie. To get what you need, you have to jump through so many invasive and undignified hoops. And what you are given will still actually not be enough to take care of yourself. Even if you have contributed to the economy that supports this system, even if you are part of a family that contributes to it. They will still make it as hard as possible for you to get what you need because once the money is in the hands of the government they forget that it came from the tax that you and your loved ones paid, it is “their” money that you only want because you’re selfish.

Anyway.

Started typing and didn’t entirely intend for this to go where it did but that happens sometimes. Hopefully I will get back and do another entry sooner than five more years time and maybe I will actually talk about some stuff that I meant to talk about.

I’m not even sure if this app is going to work properly still.

anyway..

failing

jade, , 605 wordsLeave a comment

I feel like I am just failing at everything sometimes.

I’m trying to manage all the things and seek out the best options and whatever for everyone and it just seems like all of the effort I make has very little result.

my body is fucked and i don’t know what is wrong with it and I don’t think the doctor really knows either. for several years I have been having really fucking heavy bleeding during my periods, I was switched up to super tampons and still getting leaks. I figured out that once it got to an hour and a half since I put it in, it was time to start planning to go again to get a new one, because if it got to two hours there would almost definitely be leakage. I bought some period undies. they manage leaks. I still needed the tampons. I told the doctor I needed something done to change it because for that week my crotch felt like it was falling out and it is really difficult to do shit when you need to be able to go to the toilet every hour and a half. especially when you walk slow because you don’t want to get shooting pains through your legs and back that make you stumble. ha ha lol but that’s a different problem.

he was like, you should get an iud and I was like, hmm, I dunno because I did that once before and the hormones make me feel very bad and the strings irritated and poked at both me and Daniel and overall it was very unfun. but he said they were probably left too long or something and they are a lot softer these days so i took the script. but then I came home and talked to Daniel and he was like why would you do that, you hated it last time. and I said yeah but I felt pressured and none of the other things are good either; both types of pills didn’t agree with me. the implant is essentially the same hormone as the iud just in your arm instead of your uterus so I would imagine I would feel similarly shite with that. what I wanted was an endometrial ablation. Daniel didn’t know what that was so I explained it to him and he thought it sounded pretty horrifying but said if that’s what I thought was best I should ask. the only problem is that I had read multiple sources saying that it was very hard to get signed off for that if you hadn’t tried literally everything else and were able to convince them you weren’t going to regret fucking up your fertility in a few years. I felt reasonably sure we could be convincing that we weren’t suddenly going to want more kids since I fucked up my fertility 16 years ago by getting him snipped. so I decided to go back to the doc and ask for a referral to a gyn to beg for ablation and in the meantime ask about a prescription for depo, which was the only major thing I never tried. that way by the time I got to the gyn I could safely say that I had tried all the things. now it is not generally used specifically for heavy bleeding but in a lot of people it makes the periods stop or become almost nothing so it did have the potential of solving my problem.

that shit is fucking nasty.

note added 20250610: found this unfinished in the drafts, so I’m just undrafting it and leaving as it is.

failing