Dreaming of Sleep

    For the record, this admittedly lengthy blog post took me 5+ hours to write. Given the word count, I estimate it will take you 15 minutes to read it all in one go. It actually started out as a normal Facebook message update; but it quickly became clear that message would be farrrr too long to be in any way reasonable. Hopefully you find this interesting information…interesting! It describes all the relevant information regarding an equally lengthy appointment of mine with an absurdly knowledgeable sleep disorder expert. Forgive a few jokes mixed in, if you can find it in your stony hearts. *wink*

    If you thought my insomnia was bad before, it got twice as bad three weeks ago when shit really hit the fan. I had to stop using cannabis and ketamine completely without warning, and I have already alluded to some of the reasons why to friends and family. Those two medications were the most important tools I had for maximizing my sleep quality and length, not to mention my pain levels. Given that they both tried to murder me recently and nearly succeeded, I may never be able to utilize them again. Time will tell. All my medications are traitorous cowards, they wait until they knock me into unconsciousness and then cause me to vomit violently and repeatedly and nearly choke to death. I’m starting to take it personally…

    My current sleep doctor is horrified at my sharp decline and so referred me back to his mentor not long ago. This other sleep specialist was my very first sleep doctor if you can believe it. I think I started seeing him in 2010, long before my EDS diagnosis. He eventually ran out of ideas and referred me to his colleague, who also ran out of ideas and referred me to his colleague, who just weeks ago, you guessed it, ran out of ideas and referred me back to his mentor. I may be back where I started, but we are now equipped with crucial new information, such as the EDS diagnosis that explains my chronic pain and many other issues. No, depression is not the cause of my pain like everyone insisted, lazy joints that have been on strike the instant they came into being in my mother’s womb are the problem here. Maybe they meet with my medications in the dark recesses of my buttocks and plot against me. I’LL CATCH YOU ONE DAY YOU MEDDLESOME FREELOADERS! 

    Today I had an appointment with that previously cited mentor, who happens to be perhaps the most prominent expert on sleep disorders in Canada. You can check out the link on him at the end of this blog. By that point you will have an understanding of just how productive the appointment was and why this blog post is the longest one I have ever written. This particular story started the night before the appointment. I planned my sleep perfectly. I couldn’t take my sleeping pills too early or they would wear off before I could fall asleep and I’d wake up too exhausted to effectively communicate with the expert. If I took them too late, I’d then fall asleep too late and so wake up too late and miss the appointment altogether! So I had to try to compromise, and my decisions worked out perfectly despite my exhaustion, pain, and stress. Luckily I have plenty of experience both functioning and making impossible decisions under such conditions. “How can anyone expect me to work under these conditions?!?” Says Truman’s fake wife from The Truman Show Film. Wait a second… am in a movie? Are you all actors?!? Wait… I am in a movie… the documentary about me coming out next summer… IT ALL MAKES SENSE!!! (It’s called Bend or Break, go follow it on Instagram, link at end of blog). 

    I was to be called by the expert’s assistant first at 3:00 pm. I woke up at 2:45 pm; completely naturally I might add! The timing on my part could not have been better. No, it wasn’t luck; it was my quick thinking that made it so. I was extremely stressed that night because I wasn’t falling asleep fast enough due to how badly my stomach hurt (more on the cause of that in future blogs). Stress of course makes falling asleep even harder. So I took an extra 150 mg of quetiapine, which I am not supposed to do, and fell asleep quickly after that. 150 may sound like a big number, but given the fact that my usual total dose of quetiapine is unprecedented… (I promised the prescribing doctor not to give exact numbers publicly given the insanity of those numbers, but trust me, it’s totally like, whack, yo) 150 is a drop in the bucket, I assure you. Given that the next day I had the second most important appointment of my life (the first being the appointment where I got my EDS diagnosis) I broke the rules due to the emergency. I did tell my sleep doctor about this like I always do, out of honesty, and he understood my reasoning but was still not pleased. But as I said, in the end it worked out for the best from my perspective. The unfortunate thing is although that last sleep was terrible; it was relatively amazing to previous recent sleeps. In fact, it was my best sleep in the past month. Though that just shows how bad my recent sleeps have been and I worry that it was not coincidence that I slept way better the same night I broke the rules and took more pills than I was supposed to. I promised I wouldn’t break the rule again anytime soon, so I may go back to sleeping even worse every night until we find another solution many weeks or months or never from now. 

    While I was in bed trying to fall asleep I made a post in my blog group that said “I’ve cried too much and raged too much over recent events. So now with severe and unrelenting stomach pain on top of everything else keeping me awake when I need to wake up on time for sleep expert appointment tomorrow… my main hope of improving… I don’t cry myself to sleep. Or scream. Not anymore. Even right this very second, I just close my eyes in bed repeating: ‘I can’t take it… I can’t take it… I can’t take it…” I was mostly referring to my stomach pain, but also the stress I mentioned over the potentiality of missing the next day’s crucial appointment. Do I break the rules as slightly as possible or likely miss the all-important appointment? I broke the rules. 

    Over the next weeks or months, we are going to do many strange tests that are not covered by OHIP. Honestly, though, we are so far passed the point of desperation that this doesn’t faze us at all. The expert agrees with my sleep doctor and me on the idea that I may have a circadian rhythm free running type disorder that my friend Kathleen told me she suspects I suffer from. I believe she has one friend where that is the case. At first the expert said no to this, because the patients he has seen with it all presented with a 25 hour sleep schedule, and I am awake far far longer than that unfortunately. However, I quickly changed his mind. I pointed out that those patients didn’t have extreme chronic pain like I do. This means that maybe if I had no pain, I would have the disorder as it typically presents. Instead, my pain keeps me awake far longer than the usual 25 hours. Given that, he said that’s entirely “plausible.” I actually thought of a possibility before the best sleep expert in Canada did! 

    As I said, we need to do many tests to try to confirm this diagnosis. Firstly there is a $7000 sleep tracking device that, luckily, we do not need to purchase. This is because it can be rented out for $200 for 2 weeks of usage. To get all the data we need for my situation, we will pay $400 and rent it out for 4 weeks. We also of course need to do another sleep study. In the past I went to special clinics designed for that purpose. That is no longer possible. Those sleep labs can only test people when they are asleep at night and awake during the day. As we all know, my sleep schedule is completely random and unpredictable. This is exactly what the term “free running type” means. Therefore, instead, we will purchase the equipment we need so I can do the study myself at home and this costs $600. 

    The sleep expert is going to contact another one of his former students, who is now a professor at Harvard and an expert on circadian rhythm disorders. He will ask his opinion on if I should also get a flicker fusion test. This test focuses on your eyes, and if they can differentiate between different kinds of flickering lights. If this test is positive it is indicative of a circadian rhythm disorder. The sleep expert said my current sleep doctor (also a former student of his) is one of the only sleep doctors he respects in Toronto. Due to this, he said that if it was anyone else prescribing my insanely massive medication dosages, he would think they are a fool and completely irresponsible. I pointed out that I explained how we got to this point in the 5 page email I sent him last week and so I realized he clearly hadn’t read it yet. He then said he would now read that email as soon as he can. In the email I say that the dosages kept rising slowly over 13 years, and every time the dose went up we got an ECG to make sure they were not messing with my heart’s QT-interval. If that interval is disturbed, you can indeed drop dead at any moment. Luckily, all my ECGs have been perfectly healthy, as my cardiologist brother can attest. Even when I explained this, many felt different. In the biggest worldwide EDS group, when I revealed my dosages I was almost harassed out of the group. All the fellow zebras insisted I had to lower the doses despite me needing them to function or I would surely die any day now. I think I shall put faith in my sleep doctor and my cardiologist and my brother over them, but I was certainly stressed about so many dozens of people insisting I would be dead soon. Who knows, maybe they will be proven right at some point. Then they can write on my tombstone: “those random internet strangers were right for once in their lives! Everyone fire their doctors! All healthcare decisions are now under the authority of a popular vote!” Can tombstones have that much writing on them?

    As soon as I finished describing the severity of my sleep issues, and thanked the expert for his interest, the expert said “Big problems require big attention.” Even still, my dad pointed out that most doctors want simple cases so they can give easy and simple solutions without getting off their educated butts. At the end of the call, my dad and I said “thanks for the help!” and he replied “I haven’t helped at all yet, but I will try.” Given the complexity of my problems he said he would contact his extensive resources, formulate a plan to help me, and get back to me with the details in three weeks’ time. I am saddened I have to wait that long given the intensity of my present suffering, but this is exactly why my next semester is doomed and I need to drop all my courses for the time being. 

    Waiting that long would be difficult even if insomnia was the only issue I’m trying to solve right now. There’s also my ketamine crisis, my stomach crisis, my frustration at having to cancel all my dates with girls while this is happening, putting university on hold indefinitely, trying to see if I can safely get back on cannabis at a lower dose, unprecedented (for me) and uncomfortable neurological incidents that almost make me faint, not getting to see friends as much as usual even though the semester is over, no travelling at all really, and the cherry on top of a cake made out of parasitic tapeworms and cyanide is worsening leg pain. I will elaborate on all these other issues in future blog posts given that this one may be just a little too long already... It will be a very long time until my situation improves enough to sleep well enough to be rested enough so I can concentrate enough on reading university textbooks again. Right now, I can’t even sleep well enough to concentrate on reading my recreational Warhammer books! How can anyone, including my own stubborn self, expect me to read a textbook or three under these conditions?!

    It may be obvious that I sent the sleep clinic a complete list of medications I am currently on. Everyone is always amazed at how I remember the names, dosages, effects, and side effects of the 16 medications I’m on. I don’t remember the dosages of about 4 of those because they’re supplements with no real side effects. What is less obvious and even more impressive is the fact that we also sent them a complete list of every medication I have tried over the past 13 years. I remembered about 23 of them off the top of my head, and also remembered why we gave up on me taking them. Sometimes it was lack of efficacy, sometimes terrible side effects, etc. Even still, there were another perhaps 17 medications I could not recall right away and we scoured my old medical records to find those and send them to the expert. The last thing we need is for me to try things that didn’t work in the past or even worse, things that threatened my life because they caused serotonin syndrome or persistent fainting. Going through all that old information, I was shocked at just how many different medications I have already tried and how almost all of them either didn’t help or clearly worked with my currently prescribed rebellious medications to make things 10 times worse for me. Does anyone remember those two times my medications interacted and tried to murder me again by causing serotonin syndrome? TWICE?! Cause I sure do. The North Remembers and the Mitch ESPECIALLY remembers. Unless it’s a short term memory, then the Mitch forgets within 5 minutes apparently… more on that later. 

    The expert’s assistant also accepted my offer of sending them the excel spreadsheet containing detailed sleep data that my current sleep doctor has me tediously fill out so he can use it to study me. I imagine the assistant will pass that data on to the expert if he finds it useful. Before I spoke to both the assistant and the expert I had to spend hours filling out an extremely detailed sleep info survey. I left one section blank, and at this point the assistant asked me why. The survey question asked me a hypothetical: if I could choose any time of day to write an exam, what would I choose? As I told them, it is impossible for me to answer that question because I wake up and go to sleep at totally random times each day. What I can say is that the ideal time would be 2 hours after I wake up, whenever that happens to be. This is because in the first 2 hours after waking up I am both groggy and have severe brain fog because my previous night’s sleeping and pain medications have not fully worn off yet. After that, each second I’m awake for the next 36+ hours sees me getting more and more exhausted. Therefore 2 hours after waking up is when I have the most alertness. The assistant says all of this makes complete sense. In fact, when he commented on how extreme the sleep problems I’ve dealt with for 13 years are, he promised to get me the help I desperately need as quickly as possible. I thanked him profusely and, frankly, nearly started crying again out of both hope and PTSD remembering all the shit I’ve dealt with for exactly half my life now. 

    I used to use a pretty standard Fitbit bracelet to track my sleep data like REM, deep sleep, light sleep, sleep length etc. Just this week, however, I got an upgrade and bought a Fitbit smart watch. It can perform basic ECGs and measure temperature, both of which are relevant to sleep. Plus of course all the features of the basic Fitbit. 

    Since I came so close to missing this appointment, I am worried that I will surely miss future ones. And boy, are there plenty on the horizon. Ironically, until I get help with my sleep issues, my sleep issues will be so bad that making sure I’m awake for the appointments that will improve my sleep issues is harder than ever. A classic catch-22 is at play here. It is infuriating, but also perhaps a tiny bit amusing. I mentioned to them the medication I found online that treats the circadian rhythm disorder, the medication is called Hetlioz. In the past another medication was used by the expert to treat this, that being lithium. When the sleep expert saw the first case of this disorder in the 1980s, lithium is what he used to treat it. I am not yet sure which medication I will get if I do get diagnosed with this. 

    This is perhaps the best news to come out of the appointment: the expert has seen patients with this disorder who are not blind. As my own research showed, most people diagnosed with this are blind. This makes sense to me because if you can’t perceive light this surely messes with your circadian rhythm, which is the main component of a person’s sleep/wake cycle. Given that I am obviously not blind, it is a relief to hear there is a significant chance I have this disorder anyway. If I have it, we can likely treat it. At one point the assistant had me do a short term memory test. I had to remember a basic sentence. Right after he finished verbalizing the sentence I was asked to recite it. I recited it perfectly. However, 5 minutes later I was asked to recite it again, and I failed miserably this time. I could only remember the last word of the sentence. I have not kept the fact that I have a terrible short term memory a secret. The question is: why? To be honest, I thought using medical marijuana everyday was the main culprit. But given that I haven’t used cannabis at all for almost 3 weeks now, given that it tried to murder me very recently and almost pulled its assassination off, I would have thought that my memory would be better. It’s not. Is it brain damage from too much ketamine? Issues with concertation because I’m perpetually exhausted from insomnia? Maybe it’s brain damage from me overdosing on morphine as part of a suicide attempt which put me into a somewhat lengthy coma? Who knows at this point? It’s depressing to think that my short term memory loss may be permanent. 

    After all this, I’m left wondering why I didn’t get referred back to this expert years ago when I was also suffering horribly. Fortunately, my dad and sister who were in the room and listened for both entire multi-hour phone calls yesterday said I explained things perfectly both verbally and in my prior five page email. It was only sometime after hanging up that I remembered an old reason for loving this sleep expert when I was his patient over a decade ago. He was the ONLY doctor who believed me when I insisted my terrible chronic pain had a physical cause. He did not for one second believe the psychiatrists who diagnosed me with conversion disorder (mental depression causing physical pain) any more than I did. I doubt he remembers that detail by now, so next time we speak I’d like to mention it to him given how all these years later his faith in me was validated the second I obtained the EDS diagnosis in 2014. 

    We didn’t have time to go into detail on this, but every few days I seem to get some unusual form of sleep paralysis combined with nightmares that feel closer to semi-conscious daydreams rather than actual sleep. These disturbing episodes almost always happen from the same circumstances. I am resting in bed, trying to nap, perhaps. As I am starting to fall asleep, I suddenly remember some sort of reason why I should try to postpone or avoid napping. I then try to get up. Trying to get up when I’m already half asleep seems to trigger the paralysis. This doesn’t happen too often, but lately it’s been more often than ever, maybe once or twice a week. Why do I never get to have pleasant dreams when these things happen? I want to dream about puppies, sunshine, rainbows, and a body that isn’t as ticklish as mine. If I was a Jedi I would use my might to force-push all the little girls at camp away so that they’d fall over without me touching them, absolving me of all blame. “It was just the strong wind! I can hear it whistling through the forest trees!” I’d say. Screw curing genetic disorders like EDS, why aren’t philanthropists donating their fortunes to curing ticklishness! It’s a modern tragedy! 

    Alas, my persistent nightmares are almost always featuring topics I had thought about earlier that day. For example, I showed my sister scenes from one of my favourite horror games (Dead Space 2). I also saw a meme that features a quote from the game on reddit that very day. That night I dreamt I was playing through the game on my computer except I was somehow in the game and could not stop “playing” until the paralysis ended. Oh my god! As I was writing this just now, I thought of a new explanatory possibility. Some may not know that I put a lot of blame on certain doctors, including psychiatrists, for me ending up in my current life threatening crises and other problems. The quote from the meme is a psychiatrist saying to the mentally and physically disturbed player “Isaac, we’re all gonna burn for what we did to you…” then he slits his own throat and dies. Womp Womp. Could I subconsciously have fixated on that quote due to my extreme anger at many of my doctors right now? (More on that topic in future blog posts as well).  

    I could write a novel on everything that I’ve gone through in the past 3.5 weeks. In fact, if I can survive until then, I plan on a novel and probably even a second documentary as a sequel to the first that will be released sometime before summer 2022. With all of you supporting me, I might just make it there. We wouldn’t want these future projects to be posthumous, now would we? (Please don’t say yes). 

    I used to use a pretty standard Fitbit bracelet to track my sleep data like REM, deep sleep, light sleep, sleep length etc. Just this week, however, I got an upgrade and bought a Fitbit smart watch. It can perform basic ECGs and measure temperature, both of which are relevant to sleep. Plus of course all the features of the basic Fitbit. 

    At the end of all this is a link to extremely detailed information on the rare sleep disorder we all suspect, and maybe even hope, I do suffer from. Diagnosis first, cures second, celebratory pancakes, waffles, and French toast third. When you read the link on the circadian rhythm sleep disorder at the end of this post, you will see I have basically all of the major symptoms. It seems like a progressive disease where, without treatment, you will be awake for longer and longer periods each year that passes. It is therefore impossible to maintain any semblance of a structured sleep schedule. All three of my experienced sleep doctors each insisted I try to set an alarm at 9 am for 13 weeks at a time. I quickly learned it was never going to work, but they didn’t listen to me. Each one forced me to try again a few times each. This process took years, and I was so exhausted from it that I needed to drop out of school for most of those years. Thinking back on this infuriates me, especially now that I’ve had to put my studies on hold indefinitely. The fact of the matter is, if they had listened to me from the beginning and had realistic expectations, I am certain I would have graduated from university by now. This is a given due to how much time I wasted trying their doomed to fail strategies over and over again. Given that I may never recover enough from my current issues to graduate, these doctors and others may very well have stolen my chance at a degree from me. Each of those 13 week periods was among the worst months of my entire life, and that’s really saying something. I wonder if they feel guilty about it, especially if I might have that sleep disorder that dictates that their attempts to force me onto a structured schedule were never going to work. My mighty efforts to force it to be otherwise may always have been irrelevant. Or maybe more likely, they don’t even remember all that given that it happened so long ago. As for me? The Mitch remembers…

    It’s not like we didn’t try our best to follow their instructions. I set alarms at 9 am, and when those didn’t wake me up my parents would come in and make sure I did get up. They would take plastic baggies, fill them with ice water, and dip my toes in them to jolt me awake despite me barely sleeping the night before. They would tickle me until I got up, and many of my friends know that my extreme ticklishness has caused me more trouble in life than my god damned EDS ever has. Let’s just say summer camp sure was/is a hoot… If anyone reading this ever uses this information against me I will come after you harder than the doctors who failed me. 

    However, my parents were simply listening to what the sleep experts told them to do. Who were they going to listen to, a 16 year old miserable, angsty and maybe even hostile teenager? Or experienced doctors they can relate to given my dad is a doctor and my mom is an optometrist? Given this perspective it’s hard to blame them for it all now, but as you might expect, I certainly felt differently at the time it was all happening. I’m also sorry to say that either intentionally or by accident family members sometimes misrepresented my situation (which they fully admit to now), giving the doctors the impression that I wasn’t actually trying to follow their instructions. Obviously this wasted even more time because they blamed me for the subsequent failures of their tried and true strategies. Now those very same doctors call me an “unprecedented medical marvel” partially because what works for all their other patients never seems to work for me. Story of my life, right?

Bend or Break Instagram Link

Link to potential circadian rhythm sleep disorder that may have been totally destroying my life for 13 years: Rare Sleep Disorder Info Link

Resurgent Flashbacks

    This may be the hardest blog post I have ever had to write; certainly the hardest since my diagnosis of Ehlers-Danlos Syndrome. There will be no silly EDS memes. For the first time in my life I am extremely concerned about my mental health situation without being equally worried about my physical well-being. Historically, since my EDS diagnosis in 2014, my mental state has always had a direct linear relationship to my physical state. When my physical issues such as pain levels or getting sick worsened I would understandably have increasing amounts of mental distress. When I lost my therapeutic massage and ketamine infusion treatments during the first March 2020 pandemic lockdown I became suicidal for the first time since my diagnosis. As soon as the lockdown ended the thoughts about how death would be easier than coping with my illness immediately stopped being my constant companion. However, for the past week, this golden rule regarding my mental health has been utterly violated and has manifested as constant depressive episodes triggered by my PTSD.

    There are a variety of causal factors but the most unique one that became such a severe problem only recently is what I would classify as the second most painful memory of my life. The focal point of this memory is my beloved 10 year old dog Chelsee. You see, in 2011 I attempted suicide for the second time and due to what I learned from my first failed attempt I could not have been closer to succeeding without achieving the goal of death. The most important differing point is that unlike the first time I waited until I was home alone and told no one what I did. I utilized my morphine prescription for a far more deadly overdose. After I made my decision to die there was one thing I needed to do before I took an entire week’s worth of pills, and that was say goodbye to Chelsee.

    Chelsee was the only one I could say bye to without them being able to interfere with my intended plan. Moreover, even if saying goodbye to anyone else was an option, it would not have had the same importance. Understand that during this most terrible period of my life I had an antagonistic relationship with nearly all the people closest to me. Resentment over how people treated me before my diagnosis escalated to hatred. My doctors convinced my family I was physically healthy and mentally disturbed. When every medical test imaginable turned out negative it seemed that it was up to those who cared for me most to snap me out of my seemingly psychomatic (mentally induced) chronic pain. The instant I was diagnosed with a serious physical debilitating illness all that fundamentally changed. Today, I have the best support network anyone could ever ask for. There is an incredible amount of mutual love between me, my family and my friends. My doctors are more supportive than they have ever been in the past. But back then, 10 years ago, it felt like all I had was Chelsee.

    To my 16 year old self it seemed that Chelsee was the only one who didn’t look at me with judgement in their eyes. The catalyst for bringing her into our family was so that a dog’s love could be therapeutic for me. Did it help? Yes. Could it ever have been enough to dissuade myself from embracing oblivion? No. Accepting death meant accepting never seeing her again. So I steeled myself, exited my room, and went downstairs to find her. She looked up at me and her tail starting wagging, as it always did. I took hold of her and broke down into tears. In her eyes there was no judgment; only uncomprehending concern for my distress. After a few minutes I said a final “goodbye,” locked myself in my bathroom, and set about swallowing every pill I could find. I slumped down with my back to the wall and waited. First, ingesting so many narcotics completely took my pain away and a smile appeared on my face. Then came the welcomed drowsiness. I became comatose for an undefined amount of time until I was discovered at the last minute and woke up in the hospital emergency room, leading to my most painful lifetime memory. I woke up with a breathing tube inserted in me while my dad and a ring of 5 health professionals looking down at me with utter concern. The combination of witnessing my dad’s distress and the soon to follow realization that my suicide attempt had failed again led to my screaming “Why am I still alive?” thus completing the most traumatic memory.

    It took many years to come to terms with this memory. I was plagued by flashbacks typical to one suffering from PTSD. However the point of this post is to explain what suddenly changed this past week. The answer is that my mind has made a new connection that has linked the present to the past. Anyone who has owned a dog can tell you as they get older you think about the consequences of their inevitable aging more and more. You always knew you would lose them one day, but it persists in your mind increasingly often as the years pass by. A week ago I had a flashback of saying goodbye to Chelsee before my imminent death for the first time in quite some time. Then came the catalyst tipping point, thinking about how in a few years or less I would not have to say goodbye because of my death, but because of hers. In some way or another this doubled the vividness and intensity of my flashbacks as the past, present, and future overlapped, triggering a new depressive episode.

    As I sometimes do during such episodes I turned on a comedy show to try to alleviate my distress; in this instance I chose Rick and Morty. Unfortunately rather than cheering me up, the episode was the most uncharacteristically depressing story the show has ever produced. At the very moment I was experiencing a flashback a sad song began playing on the show. It’s a catchy song and has been stuck in my head ever since. I will link it below. The problem is every time the song enters my consciousness it immediately triggers a flashback that connects the past to the present, triggering a mental breakdown. My pain still keeps me awake anywhere from 25-36 hours every day and the resulting exhaustion destroys my mental defenses until I finally get some sleep. Rather than my typical situation of having one depressive episode per week during such vulnerable moments, I’m having them whenever I think of the song. This has dramatically increased the frequency of the flashbacks which on a day such as yesterday happened seven times, including when I have not even been awake insanely long. My emotional attachment to Chelsee has extra emphasis because with my incurable illness the reality is I will probably never be able to have children adopted or otherwise. Chelsee is the closest thing I'll get.

My recent medical issues have not helped matters and are amplifying my mental distress. As you may know quite recently I received my second Covid-19 vaccine dose. With my compromised immune system, I should be happy that I can start easing out of my 1.5 yearlong isolation. However, my celebration has been marred because my reactions to vaccines are invariably extreme. For the sake of being concise I won’t describe the experience in this post, but it’s exhaustingly horrible. I don’t have to simply deal with the side effects, I have to deal with them on top of my usual severe chronic illness. First I had to spend a week shifting my sleep schedule (which is unimaginably uncomfortable given my insomnia) so that I would be awake for my vaccination appointment. This meant another week of awfulness dealing with my uniquely extreme side effects. After two weeks of such indescribable discomfort what I need most is a break. What I get is the exact opposite, because after two weeks of zero productivity I need to catch up on my university assignments.

    There are multiple other factors that are currently stressing me out even further, but I have done my best to explain the primary problems. My usual solution to things that trigger me is to deliberately continue to expose myself to them so I get desensitized. In the case of my current crisis that strategy has thus far failed. My next step is to restart therapy as soon as possible. For the first time since my diagnosis a large portion of my distress is primarily psychological in nature. This means a psychologist should have a lot more utility in helping improve my mental state than they have had in the past. To conclude I’d like to say thank you to everyone who is reading this for caring enough to take the time to do so and let’s hope my current troubles are a temporary setback. With my family, friends, and doctors supporting me I'm confident I make it through these new troubles.

Referenced Song: https://www.youtube.com/watch?v=EewB7xHHIvE&ab_channel=KishiBashi

 

Always Skip Leg Day

     I think it’s a pretty good sign that you have some pretty bad leg pain when you actually start to seriously consider getting both your legs amputated. I very seriously looked into this as a possibility and found others with EDS who had their foot or bottom half of their leg amputated. It worked out well for them but who knows how many hidden bad outcomes there have been by comparison. I used to fantasize about amputation all the time. When this was before my diagnosis and the mistaken consensus was that there is nothing physically wrong with me I knew it was hopeless asking my doctors about it and so didn’t bother. But then the other day I saw a video of a girl with a story somewhat similar to mine. She was born with an autoimmune disorder that her and her family were unaware of. I was born with EDS that me and my family were unaware of. She broke her wrist which triggered her congenital autoimmune disorder and caused permanent chronic pain. I got infected with swine flu which triggered my unstable EDS body and some sort of auto immune reaction. Her pain was in her arm so she got it amputated and now lives a happy pain free life. She even plans on going on to compete in the Paralympics. It sounded pretty good to me, especially since fully functioning bionic legs are going to be invented before EDS is cured by gene therapy.

      Even if, hypothetically, somehow my pain was not solved and only my sleep issues were I would still take that deal. I can handle the pain if I sleep decently so would actually be able to have some sort of sitting down career like my 911 dispatch operator idea. Aside from the suffering I can’t stand how so much of my life is wasted by the exhaustion of being awake up to 40 hours due to pain on a daily basis. I asked my doctor brother about it and he said it’s unfortunately not an option for me because getting both your legs fully amputated is a very different matter than just your foot or arm or below the knee. There’s just a too high volume of blood in your legs. It would have been nice to have it as a fallback option in case my pain gets worse. My pain already occasionally spikes to 9/10, there’s no law saying it won’t one day become that bad everyday; which I can tell you right now is an unlivable life. Everyone’s joints get worse as they age and having EDS doesn’t help matters. I expect if my pain did get worse I would try giving up on any normal functioning and start using pain medications during the day again. I do have access to fentanyl patches but currently don’t want to be high all day so I can have productive goals. I should try to stay hopeful that better sleep medications will be invented over time, in fact I’m going to be trying a brand new one within the next few months!

    As was mentioned in my previous blog post my last ketamine infusion was useless. Up until that point I had been getting the treatments once every 6 months but at the new ketamine clinic they were willing to switch to once every 3 months. When the infusion didn’t work we were worried that doing them more frequently had something to do with that. The plan was to wait longer again until the next one but my sleep was getting so out of control I convinced my dad of the merits of taking a risk and trying it again before it was 4 months since the last one. The one that didn’t work may have been a fluke and maybe if they raised the dose while trying again it would work better. I turned out to be very much right, as they raised my dose even further to a super mega dose that gave me instant results!

    I used to talk about how I had the problem of alternating days when it came to the quality of my sleep. I’d sleep well one day and then usually sleep badly the next day because it’s easier to get to sleep when you’re exhausted. Ever since they raised the dose of my last ketamine infusion even further in December of 2020 that problem has been solved! Now I wake up relatively rested almost every day! Aside from occasional pain spikes, the only time this doesn’t happen is when I miscalculate the best time to make my pills. There’s no consistency to when I go to sleep and half the time I’m nocturnal so it’s not like I can say “I will take these pills at 10 pm each night and these ones 10:30 and these ones…” I have to base it on purely how tired I’m feeling which is hard to figure out when you’ve been awake close to 40 hours already and have to vape before taking all your pills. As you might imagine, in that kind of state you’re not thinking quite as clearly as you might hope. And since I don’t take all my sleeping pills at the same time I get more and more sedated/high/disoriented as the process continues. If I take my pills even just half an hour too early they wear off because my body doesn’t seem to feel like absorbing medications or alcohol properly. If I take them as little as 10 minutes too late I’ll accidentally have a 10 to 30 second microsleep which somehow seems to get rid of all my sleepiness but none of my exhaustion. When that happens sleep is postponed by up to another 8 hours so although it’s very rare I’ve been awake close to 45 hours with just a few seconds sleep in between.

    Since I can count on more consistently restful sleeps I’ve settled into a productivity maximizing schedule that hardly ever changes from day to day. After waking up I have the peak amount of energy and ability to concentrate which slowly drains as the 40 hours tick by. Sleep deprivation and pain are the two most common real life torture methods so it really is like I’m being tortured on a daily basis which causes lasting damage no matter how well you learn to cope with it. Remember that “An abnormal reaction to an abnormal situation is normal behaviour (-Victor Frankl).

    With this in mind after waking up from my 19 hour sleep I start off with doing schoolwork for the first 9-12 hours. When I get too tired to focus on that I workout with weights for an hour and then play a virtual reality game called beatsaber for a couple hours that can actually be very good cardio exercise if you get skilled enough to play fast high difficulty songs. To understand how it works, pick a song and imagine a track of notes like in guitar hero moving towards you; except each note is a box that you have to hit from a specific direction. When there are 5 notes flying at you per second in beat with the song it can be pretty intense! After I’m too tired to continue that I read books for 3-6 hours until I can no longer concentrate. The problem is by this point about 18 hours have passed and most commonly I’m awake a total of 36 hours so I still have to find a way to pass the time for the next 18 hours until I can finally fall asleep. That’s when I turn on my computer and play games with friends or browse reddit until I’ve been awake about 30 hours and get too tired for games so I turn off the computer and watch trashy television shows on my phone through Facebook. I’m so tired by that point that I don’t have the ability to focus on an actual good show’s plotline. Two hours before I expect to fall asleep I start vaping and then one hour before going to bed I turn off my phone and start taking my pills and just daydream incoherent thoughts due to both the fatigue, the medical marijuana, ketamine nasal spray and the heavy doses of the sleeping pills building up.

    A very recent event has also been quite interesting. Seven years after my first test in 2014 I had another pharmacogenetics done since the technology has improved immensely over the years. As a reminder, pharmacogenetics is when you pay $300 so they can test your DNA to predict how you will respond to a huge amount of different medications. The first test showed nothing helpful but this new and improved one did. It showed I probably won’t properly absorb half the medications I’m on which explains why such high doses of things like Quetiapine, cannabis and ketamine are needed to have an effect on me. These kinds of issues are marked as yellow indicators in the test which I will preview below. Morphine, oxycodone, and tramadol all went badly for me when I tried them and are marked in yellow. They also have red indicators that represent a dire warning to avoid taking certain medications because they could either completely not work or even be dangerous.

     Interestingly a medication I was on in 2010 called amitriptyline was indicated with the red warning. This is significant because when I was on that medication I kept randomly fainting repeatedly. Two fainting events in particular stick out in my mind. In the first one I was a camper at a winter camp run by the same people who run the summer camp which I attended and now work at. To explain what happened I need to give some pretty silly context leading up to the moment I fainted; keep in mind I was 15 years old.

    I was playing a game of air hockey with my friend and that friend cheated and said they won but I vehemently disputed this. I then started to get extremely dizzy and so lied down on the ground. My friend saw this as an opportunity and sat on my back and gave me a wedgie to try to coerce me to admit they won the game. Obviously normally I would fight back in that situation but I was slipping in and out of consciousness and so kind of just lay there. Don’t blame my friend because she had no way of knowing what was happening to me. Eventually another friend pushed her off me and as I got up and fled I started to get extremely thirsty. I never figured out how this related to the fainting but I doubt it was coincidence. I’m talking drinking 5 cups of water in the span of a few minutes. I called my dad to tell him I wasn’t feeling well and was on my way back to my room to lie down when I opened the door and unfortunately at that very moment a third friend was rushing through the other side of the door and accidentally opened it into my face. This was the last straw in terms of me trying to stay conscious and so I fainted again and this time didn’t stir for quite some time so the counsellors came and took me to the hospital. I forget what occurred there but all I know is we must have not made the connection between fainting and the medication yet because I stayed on amitriptyline. Not long after that indecent I fainted in class in high school and they called an ambulance after which we finally stopped amitriptyline along with the fainting.

The Documentary Journey

     The documentary about my struggle with EDS has finished! First my dad and I watched it together and were both moved to tears, it really did exceed all our expectations. Ordinarily the rest of my family would have attended a screening so they could see it as well but due to the covid pandemic we had to settle for watching it online together again with most of the extended family. As you might expect more tears were shed but incredibly even as a select few non-family watched it being moved to tears was also the most common reaction! There were even things my family didn’t realize about my past until they saw it in the documentary. For example, they had assumed my first pill overdose suicide attempt was a cry for help rather than serious because I had messaged my brother Evan and told him what I had done. As I explain in the film this was not so he would save me, rather I did that because I was unaware of all the methods the hospitals possessed to save someone who overdoses. I thought as soon as I took all those pills my death was inevitable and I simply was scared like any 16 year old would be and did not want to die alone. This came as bit of a shock to my family and it was why I didn’t tell anyone what I had done after my second nearly fatal and even more determined attempt.

     The next step for the documentary was to enter the film festival circuit and as of writing this one festival (the Calcutta International Film Festival) has concluded and already blown our minds. The film won an Outstanding Achievement Award and was also a finalist for Best Picture! The more awards it wins the better the chance that the film will get a great distribution deal, with the best case scenario being Netflix. The film festivals are expected to continue all the way until the summer of 2022.

     The excitement does not end there however, as I sent the film to my sociology professor and the response was greater than I could have ever expected. She thought the film was so touching that she asked if she could add it to her curriculum for her classes! I explained that the film can’t be released publicly until the festivals are all finished because that would disqualify the film from the festivals. She then requested to interview me as we wait for the film to go public. I took her class last semester and she has case study assignments where she interviews people with interesting stories and then asks the students to answer questions based on those interviews. She wanted to use me for one of the case studies! When the interview phone call started she said they usually last about 15 minutes. By the end of the call we had been talking about my journey for one hour! She teaches possibly the biggest class in the entire university with close to 1000 students and so for them to see the interview and the documentary each semester will be amazing for EDS awareness! What follows is the message I received after her viewing:
“I just finished watching the video..Oh my goodness... thank you for sharing this with me. 

I have no words to express my compassion and empathy for you, and further, I thank you for being such an amazing human.. you have taken this unbelievably painful life experience and turned it into something beautiful with the work you do with the support network and your role in bringing about the opening of the clinic. That’s extraordinary.

 If you haven’t already, please take a moment to honour your courage and strength.

I feel blessed to have had you in my class and to have learned from you. 

If I can ever do anything to support you or if I can be of help in whatever way, please feel free to reach out.

Please also send my regards to your beautiful family.

 

     The stakes for me personally got even higher because as all this was happening the head of EDS Canada, a large non-profit that advocates for EDS patients in Canada in many different ways saw the documentary herself. Afterwards she messaged me saying that she was so impressed that she sees me taking over the reins of leading the EDS Canada organization one day! Her response to the documentary was just as touching and meaningful to me:
“I watched the Bend or Break movie today and I must say that not only was I blown away but it was also super emotional for me. It's taken a couple of hours to 'get over' those feelings. I want you to know how important you are and that I see you taking the reins of this movement over when the time is right. I really do. I have fortunately lived long enough to now see that each difficult passage(s) that we go through is a stepping stone for what's to come. It all culminates into something that we can't see at the beginning of our lives and journeys but someday when you are looking back it will make total sense. I have so much to say about the movie, too much to really to write here. I hope we can connect someday soon or when the movie comes to fruition to discuss. Your story matters, your experiences matter, YOU matter.”

    Even my doctors saw the documentary and thought it was excellent. My original ketamine doctor who was responsible for prescribing my ketamine nasal spray started to distance himself from us when he heard the last infusion turned out to be useless. However after I said the nasal spray still has a significant impact on my functioning and he saw the film he fully reaffirmed his willingness to continue prescribing the crucially important nasal spray. Although he referred me to my current ketamine doctor a long time ago, he was the only one still willing to prescribe the spray. My current doctor explained that no one else does it anymore because it was so heavily abused in the U.S. that prescribing it was heavily discouraged. Stuff like that nearly screwing me over is why I admit to having a hard time sympathizing with addicts who abuse their prescription drugs and ruin it for the rest of us. I recognize it’s slightly hypocritical given that I abused my medications by attempting suicide with them but I was very young and never abused them due to an addiction.

 This was his message:
Thank you for sending me the link to the documentary. I was very moved to see and hear Mitch, you, your wife and Mitch's siblings talk about his struggles with EDS. As physicians, we often detach ourselves from our patients' and their family/friends' emotions to allow us to focus on the clinical issues in front of us. This documentary is a powerful reminder to me (and I am sure for everyone who will see this) that our patients represent not just their medical condition but also their feelings, and emotions and those of the people who care for them.

     Things have been going great academically as well. For the first time I’ve been able to do three courses at once for two semesters in a row and I’m doing very well in all of them! Last semester my 3 course average was 87% and this semester it is so far 96%. My overall GPA is 82.5% and 80 is more than good enough for law school. If I can keep up the momentum this semester I expect my GPA to be bumped up to about 85% which could land me a law school scholarship! Waking up rested consistently has more than made up for the lost productivity of being awake so long since I am only able to be productive for a fraction of that extended wakefulness cycle. At my current rate I expect to graduate in two years and on top of that at the end of the current semester I will have achieved a Certificate in Public Policy and Administration which will look great on my application.

    The Dark Knight (batman) is my favourite movie of all time and some of the scenes make me think about my illness whenever I rewatch them. The most important of these is the scene where batman interrogates the Joker. I’ll link it here: https://www.youtube.com/watch?v=jane6C4rIwc&ab_channel=FlashbackFM

    Batman eventually gets so frustrated with Joker’s taunting that he starts beating him up. However Joker doesn’t care, the harder batman hits him the more Joker starts laughing. This reminds me of my struggle against my own defective body. Every time I push harder to achieve my goals my body throws ever increasing levels of pain back at me. Imagine the frustration that every time you punch someone in the face they laugh harder with each hit. This brings us to Joker’s most important line: “You have nothing on me! Nothing to threaten me with. Nothing to do with all your strength!” My body might as well be saying that to me. I have no leverage in this battle. The harder I fight the more things can lean towards self-destructive actions. I may be strong but what am I supposed to do with that? My opponents are my own joints. It’s not like I can punch myself in the face to get them to work properly. With that all said I certainly relate to Batman’s frustration in facing an enemy immune to brute force.