sleep things

jadeLeave 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..

jadeLeave 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 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..

england

jade, , , , Leave a comment

Going to England was a different experience for us. Daniel and I have never actually travelled together just the two of us. When I came home from England the first time, his visa was not yet approved so I had to come alone and he came a couple of months later. The next time we went, we had Stephanie with us, and all subsequent times we had kids with us too.

Deciding to go – just the two of us – was hard. I didn’t doubt Stephanie, Dean or my Mum’s willingness to make sure that the kids were looked after. I did struggle with whether or not there would be difficult moments or incidents and whether or not it was fair or reasonable to leave them to deal with that. Abigail had really wanted to go. Not because of anything in particular, but because she doesn’t like to miss out on things and she doesn’t like to think that we aren’t there to do what she wants or needs. When we pointed out that she’d be bored as batshit because there would be no internet and no TV (the accounts/TV license etc were all cancelled soon after Allan died,) no other young people to talk to, and the majority of the time would be spent sorting through and cleaning the house, and it would be fucking cold, she decided maybe it wasn’t so bad to be missing out.

In the time between when we got booked and got the dates finalised and when we left, I did all I could to make them all as prepared as possible so it would be as easy as I could make it for them to manage. The three kids actually took it upon themselves, with no prompting, to plan out a menu for themselves for the not-quite two weeks that we would be gone and I stocked the cupboard/freezer with all I could in advance to minimise the amount of shopping Stephanie and Dean would have to do. It was arranged that Abigail and Kristian would go to my mum’s over the weekend, so they planned with her what they would have/do while there as well. That way Stephanie and Dean got a bit of a break. During the week the kids had to go to school as well so it was not like full 24 hour days that they had to be supervising them.

I still had a bit of worry that there might be an explosion or something, but Stephanie and Dean knew what to do if that happened and I kept reminding myself that we don’t have to cancel our lives because of that possibility. What we need is also important. It was important to Daniel to go. We did not go when Lisa died. That wasn’t a problem, we had seen her six weeks earlier and we were quite aware that it was going to be the last time. We were comfortable with that choice. But this time it was not ‘just’ Allan. The things that needed taking care of, the house that needed clearing out, the belongings that had to be sorted, donated, thrown away, etc. It was both of them, even though he was the only one living there for the last four years. It was the last chance to do something for his parents, and he wanted it not just for himself but so that it didn’t all fall to his siblings to handle. As it is, there is a lot they have to do anyway because we are simply unable, being so remote. When I say ‘they,’ I mean Nikki and Lee, because.. well, Sandie. Chris is the executor anyway so technically it’s all his job but it’s not like anyone is going to just ignore it all and leave for him to deal with.

Something else I thought about a lot is whether or not I was physically up to doing this. I wanted to go with Daniel for multiple reasons, of course primarily because he’s my husband and my heart and I wanted to support him because his Dad had died and it’s pretty shit. But there was also that the whole diabetes thing was still very new and being my strict and paranoid self, I wasn’t sure I could trust anyone else to look out for his needs as obsessively as I would. And like, England food is different. We had been eating so much salad and I knew that winter in England would be.. not very salady. He also was committed to doing the right thing and eating smart, but sometimes forgetful or just not aware when things were ‘yes’ or ‘no’ since I am the main meal planner and maker and had done a lot more research than he had a chance to given that he works full time. So my second reason was because he needed me to look after him. He said he needed me too, not because he’s a useless idiot who can’t look after himself but because he is unaccustomed to having to think about a lot of these things since those are my responsibilities in our team, and trying to start thinking about them all in a foreign country while you’re in a heightened emotional state is a big ask. And it was good to have him say he needed me. So often I feel like I don’t do enough, because I want to be able to do so much more and to have him tell me that he does need me and that what I do does make a difference was really meaningful to me.

Anyway. In terms of my health, I figured that my activities would not be so different in terms of physical demand to my normal life and if it did turn out to be too much, I made sure I bought plenty of medicine with me, which it would not be a problem to take since I did not have to make sure I was available as a responsible and alert adult who could drive. (We only had access to a manual car so I couldn’t legally drive anyway.)

As it turned out, I had a really good couple of weeks. A lot of what I usually do was greatly reduced as well as being shared by Daniel. We only had to feed ourselves, we only had our own clothes to wash and dry, when we went to the supermarket he was there to help and we were free to move as slowly as I needed because we had the luxury of time to go at my pace. The first day after we got there I was feeling pretty terrible and had to keep refreshing the PFs regularly, but I think that was a result of airplane confinement and the ludicrous amount of walking that happens in airports. And though we did a lot of emptying of cupboards and shelves and drawers, and sorting through all of the stuff we found, I was able to sit for a lot and we also took regular breaks when it started to get boring or painful, and the breaks were actually breaks. At home when I take a break from one thing it usually means going and doing another thing for a while so that one part of my body stops hurting and another one starts. Hips hurting from doing dishes? Go and fold up some washing until the burning in my back becomes too much. I didn’t have other jobs to do and other responsibilities to make sure I managed to complete before everyone got back from school and work so when I sat or laid down to take a break I could actually let go and relax. It was ok if I fell asleep for a bit. The opportunity to take real breaks and listen to my body and move at my own pace without constantly feeling the push of the clock and the weight of responsibility and the need to manage everything before I got too tired and too sore was quite eye-opening. Because I am figuratively wading through molasses so much, making a lot of effort to achieve what sometimes looks like so little; because I am so exhausted by what I do manage but I am also victim to that social expectation that the modern woman should be able to manage home, kids, hobbies, a job, a side business, a perfect relationship, charitable work and do it all with ease and grace; I feel like I am letting my family down. Not having to manage what I usually do made me see that I do a lot more than I often give myself credit for and having the luxury to listen to my body to keep the pain and exhaustion at minimal, manageable levels was a reminder that I am doing enough. It was also a bit sad to feel so comparatively good and remember that for most people, that is normal yet for me it felt almost revelatory.. oh yeah, this is what life is supposed to feel like. That you become so accustomed to hurting and aching and pain and exhaustion that you literally cannot remember what it is like to feel ‘normal’ is one of the hardest and cruelest parts of having a chronic illness. Because the aching and hurting and tiredness become normal to you, it is easy to forget that your normal is not everyone’s normal, and when you feel like you’re not achieving much it’s so hard to not blame and doubt yourself.

I even felt good enough for us to decide to go for a recreational walk around the lake one day. I don’t know when the last time I felt like that at home was. Sometimes we try to do things like that anyway, because I get tired of not doing things, but it’s always with the knowledge that it’s going to come at a price. Anyway. We did try to go for a walk and it was nice but we stopped for a rest at a bench and then we decided that was enough of a walk not because it was too much for me but because it was FUCKING FREEZING. It was also very late in the afternoon, like maybe 1530 or something ridiculous so it was starting to get DARK and even colder so we were like, nah, fuck this.

england

allan

jade, , , , , Leave a comment

We had of course already had midsummer at the weekend. Christmas Day was a Wednesday and we were sitting in bed just watching videos, reading, playing games, etc. Just a weekendy type of day and enjoying that Daniel didn’t have to go to work and wouldn’t have to for another week or so. Abigail and Kristian were both doing things but weren’t too noisy and weren’t disturbing us. Stephanie was at Dean’s, so that she could have Christmas with him and his family as well as having had midsummer with us and my mum.

So, it wasn’t odd when Daniel’s phone rang, we often spoke to Allan on the weekend and especially on special occasions like Christmas. It wasn’t Allan though, it was Nikki, and although we don’t often speak to her it wasn’t immediately alarming that she was calling us because it was Christmas. So Daniel answered brightly with “Hi Nik! Merry Christmas!” And then she started talking, and he went quiet and stopped smiling.

Abigail had heard the phone ring and come in to say hello to Grandad. She was shushed away and told to come back in a few minutes. Daniel listened to Nikki for a bit and then thanked her for calling and they said bye.

I knew it was going to be something bad but I thought maybe he was sick or in hospital or maybe someone else was. But after trying multiple times through the day to call Allan and finding out that Lee had also been trying to chat to him but had been unable, they started to get really worried. (Being the 24th of December, it was the main celebratory day, per Danish tradition.) So Nikki called Pat and John since they live a lot closer to Lincoln and asked if they might be able to go over to check on him since he’d not answered his phone all day. It was already evening by this stage and they were out somewhere and had to then drive to Allan’s, so it was quite late at night by the time they got there. They have a key because they helped him look after Lisa a lot when she was sick and also because it’s always a good idea for someone to have a key to your house in case something happens to you..

He was in his bed. They called the ambulance and everything but it was clear that he had already been gone for some time. We thought that it was likely that his abdominal aortal aneurysm had ruptured, as he had been getting monitored for it regularly and it had been slowly growing. He told us that the doctors had said that usually they would operate at 5cm but a lot of stuff in the NHS was in a state of uncertainly due to the mess of Brexit so they now had a guideline of 6cm for surgery. After the last check up he told us it was at 5.8cm. It was something we were keen for him to be able to get fixed, because while he had it he was unable to travel, especially by air; and he had decided that he was going to try to come here but was unable to make any proper plans for it because of the AAA. So I think most of us thought it had been the aneurysm, but we wouldn’t know for sure until after his post-mortem examination. We were aware that it was Christmas Day and then Boxing Day and didn’t expect that would happen immediately, but I myself thought that they’d be open the next day (Friday, 27th December) because services like that are pretty essentially and only close for the minimum public holidays, right?

So, so wrong. Turned out the coroner’s office was closed for Christmas and New Year and wouldn’t be open again until some time in the first week of January. But it’s ok, I thought. It’s just a few extra days and he’ll have to be one of the first to be processed since he has to be one of the first to have come in after they closed, having died on the 24th of December.

It wasn’t because we were anxious to be certain about the cause of death – I actually don’t think most of us considered it likely at all that it would have been anything but the aneurysm – but because we had a difficult situation to coordinate where three of his children were in one country and one was in another, Christmas and New Year are notoriously uncool times to travel, especially when it’s “last minute” and we needed to try to plan when a funeral could be and how to get there and we could not even begin to do this without the death certificate which wouldn’t happen until after the post-mortem. To add to the frustration, Daniel was already off work this whole time as his office was closed between Christmas and New Year (but it’s not like they’re performing an essential service to the community) so it felt like wasted time that could have been used when he already wasn’t at work, saving us some of his holiday time as well as the fact that his father had just died putting rather a damper on fully enjoying the time off that he did have.

So then the few extra days passed into the start of January and it emerged that he wasn’t “first cab off the rank” or even anywhere near the top of the list because the whole “closing for Christmas and New Year” had actually started a couple of weeks before Christmas and as such they already had several weeks worth of autopsy back log to get through. This whole thing left me so frustrated and incredulous that a public service can be run in that way. If it is determined that a person needs an autopsy, then you cannot hold a funeral or burial or whatever it is you want to do until after that is done. For us, it was frustrating and annoying and drew out something that felt like it should have been able to be handled and managed and put to rest so much more quickly and smoothly. I’m pretty sure that there are other religions and faiths, though, that have strict guidelines on how and when certain rites should be performed following death and I can’t imagine how distressing it must be if you are unable to observe those because the coroner’s office has been closed for over a month and has a lot of bodies to get through. As it turns out, this seems to be the way a lot of government services operate in the UK. It shocked me and made me glad again and again that we chose Australia, even though it is far from perfect.

I need to back track a bit. After Daniel finished talking to Nikki, he basically repeated to me what she’d told him. He was clearly shocked, it was just so unexpected. We all were, really. I cried and I hugged him and then I took a deep breath and went out to talk to Abigail and Kristian because I knew they would be waiting, and of course I was not going to make him have to do that.

Twice now I have had to tell them that a grandparent has died and it is the most horrible thing to do. This was especially harder because they are older and have had more of a relationship with Allan than they did with Lisa. They too were waiting and hoping for the day that he would come back here, and stay. Grandad was funny and silly and a little bit spoiling them but also firm with rules, all the things that Grandads are meant to be. He was the only one they had and I hated having to tell them that he was gone.

Then there was Stephanie. Being that much older than Abigail and Kristian, she had spent more time with both of her paternal grandparents than they had and I knew she would be devastated. And unlike us who weren’t doing anything on Christmas morning, she was. She was with Dean’s family and they were doing the whole thing. Nikki and Chris decided that they were not going to tell Alice, Sam and Max until Boxing Day so as to not take way the joy of Christmas from them, and I don’t judge them for making that choice, but I did not feel like it was an option for me. So I called Dean’s phone, so that I could give him a forewarning that I was about to break Stephanie’s heart and to be ready to catch it. I don’t know if it was worse telling Abigail and Kristian in person or telling Stephanie on the phone. She was sobbing, big heaving gasps and I could see her in my mind and I hated having to do that to her but someone had to and I knew that she would ultimately prefer to know immediately rather than later. I was glad she had Dean there, and the festivities of Christmas with his family to try to take her mind off it a bit.

It ended up being the 16th of January before the post-mortem was done and his body was released to the undertakers. 23 days. Personally I think that is disgusting but also I have absolutely no control over anything so no one gives a shit about my opinion. It also turned out that it was not the aneurysm, but a stroke while he slept that bled out into his brain. When we were cleaning things up in his house, we cleared up a lot of his medication and some of what he was taking were blood thinners, so it was kind of inevitable I guess that any blood loss where he didn’t have immediate medical attention was going to be fatal. There was a bit of comfort in knowing that he was asleep while it all happened and likely wasn’t aware of any pain. In a way, it was kind of a relief that it wasn’t the aneurysm, because I didn’t know what the situation would be then. We knew that he had been waiting for surgery and it had been pushed back and the prerequisites changed, and the thought that he might have died from something that he should have been able to have fixed but hadn’t because of a bunch of political bullshit made me angry. But again, I don’t know what anyone would have done about it, anyway. .

Eventually the funeral was set for Tuesday, 11th February and Daniel and I arranged to go to England for two weeks, to help with sorting and clearing out the house and to then be at the funeral. We went on the 1st of February and Stephanie and Dean stayed here to be in charge of Abigail and Kristian while we were gone.

allan

it just keeps going

jade, , Leave a comment

Life. Time. Whatever.

It is meant to be that a big thing happens and then that will settle down and I can figuratively catch my breath and recover and get used to whatever ways this thing has changed my life and then I can be ready for the next thing. Except it has all been a series of Big Things for a while, without the settling down and resting part in between. Someone has really dropped the ball on the scheduling.

By this point I am not even sure if I have track of all the Big Things. I think the first one was Daniel and the diabetes. That was back in early December. Yeah, like last year. Like 6 months ago. The doctor catching it when he did turned out to be an incredibly fortunate timing. Daniel had just been generally unwell, I can’t remember, a cold or random shit like that and had a couple of days off work and also needed new prescriptions soon so we took him to the doctor for the medical certificate and to get the prescriptions. It had been a while since he just had some general check up things, so the doctor said “I think we should have some blood tests just because it’s been a while and we live in a country that allows us to do general blood tests even though there is nothing specifically wrong with you which is pretty awesome, so stick out your arm, bro.” I mean, I paraphrased a bit, it has been six months after all. And we had to go next door for the bloodletting also.

Next day the doctor’s office calls Daniel and said some of his results already came back and the doctor would like Daniel to come back to talk about it. It’s not urgent, but could you come today? So he made an appointment for after work and of course I decided to go with him too because I am the prime authority on Daniel’s health and well-being and, well, Daniel can’t always be relied upon to properly relay details and names of diseases and the specific test results and all that. Which I need to have.

Turned out his BS meter was off the chart. Haha. But really. His blood sugar was pretty high, and so was another that gives an indication of average blood sugar over the last three months. Just getting a high blood sugar reading doesn’t necessarily mean anything, but it having been at the high level for months meant that he was immediately diagnosed with diabetes.

The reason I say that this was all very fortunate timing is because once we had this information, we realised that there were some things that Daniel had noticed going on that were obviously a result of the high BS. In particular he had been having problems focusing on some things, especially at a distance, but he had gotten new glasses about a month earlier so at first he thought maybe they weren’t quite right or it was just an adjustment to them. It was almost getting to the point where he was going to go back to the optometrist to ask about it. But he was just a few points away from where he could have been at serious risk for coma and stuff so him having been sick and having the blood tests done came within a day or two of him maybe having reached the Very Serious complication stage.

We have changed a lot of things we eat, cut out a lot of types of carbs and sugars and replaced some of them with wholegrain varieties so that we aren’t completely deprived of the lovely stuff. I don’t buy potatoes anymore though which is so sad because I do very much love them but with his pancreas being stingy with the insulin and my liver wanting to hoard fat we just gotta be grown ups and accept that lovely potatoes have now very much become a “rarely occasionally” type treat. I am trying to include more meat and the fruits and vegetables that are “approved” and it is going ok. The part where it is difficult is finding things that are ok to eat, affordable to eat and that people will actually like the taste of to eat.

At the moment he only has to take pills (metformin) to keep it under control, as well as the diet changes we have made. He has a blood sugar monitor and as long as he is feeling good he doesn’t really have to keep track of it too much. I would like it if he would do it once a week for my peace of mind but his memory is not so good at managing that so it ends up being more like two or three weeks. Which I do not like but it is his body and he’s the one who has to poke holes in himself and even the doctor did say he didn’t really need to monitor it at this stage so I am not nagging and complaining about it even though it makes me feel better to have numbers and data.

I was a bit hesitant initially to tell some people about the diagnosis. Daniel is overweight, and there is a decent portion of the world that subscribes to the idea that the way you get diabetes is by eating too much bad stuff and if you end up with diabetes, it’s your own fault for being fat and piggy. And I just don’t want to deal with anyone who might suggest that. Even before the diagnosis we had been slowly and surely making changes to our food and drink consumption. And yeah, they were slow, but we have been successful in making and keeping to the changes. One of the biggest for him was drinking water. It is not something that he ever learned growing up, probably because water in England tastes like shit and it’s also not anywhere near as hot so it is easier to have a lower water intake. Over the last couple of years he has pretty much switched to only drinking water apart from our morning coffee and special occasions like going out to a restaurant or a birthday or Midsummer. That alone was a huge adjustment.

I’ve bought a lot of different foods over the last six months, things that are alright to have in combination with the other approved things he’s eating. Some of them are good and have become new regular inclusions. Some of them really are not good and we tossed that shit out or tried to give it away to someone else. Haha.

So yeah, that was the first Big Thing. And it’s kind of a forever Big Thing in that we have to make these changes for life and establish good habits and remember that doing the “wrong thing” isn’t just like a failed day on a diet, it could actually have real ramifications. So it’s all very much learning when and how much you can have the treats and how to not feel too ripped off when you know you can’t.

The next thing was Christmas.

it just keeps going