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.

Rational Hopelessness

     I don't remember signing up for nightly torture; let me just check my notes here... Yep, no record or recollection of doing that. Then why oh why is that what's been happening?? Sleep deprivation is a literal real world torture method and obviously so is inflicting pain. My rebellious body has decided to do both at the same time every night, and the defective, rickety piece of crap likes to ramp up the intensity on a weekly basis. I am alluding to the fact that I am now unwillingly awake 32 hours virtually every single day. Last week it was 30 hours. Two weeks before that it was 29, and so forth. This isn't the way it's supposed to go! My last ketamine infusion seems to have no better long term effect than if I was infused with tap water. The preparation and aftermath of each infusion is incredibly uncomfortable, and to go through all that for literally no benefit is maddening.

    The last 6 hours I'm awake are always pure hell. I'm so exhausted I can't even read a book before bed, and watching TV isn't an option because the light will keep you awake longer. I just sit there doing nothing while vaping for hours on end. I can only fall asleep when I'm so tired that I can no longer keep my eyes open. Attempting to go to bed anytime before that will automatically ruin the night, which means ruining the next 32 hours since that's how long I'm awake for. Imagine lying in bed awake while more exhausted than you have ever been in your entire life knowing that because of a tiny mistake the next 2 days will be completely unproductive and indescribably uncomfortable. Another easy trap to fall into is getting to bed literally a few minutes too late and once again ruining the night due to microsleeps. Microsleeps are involuntary sleeps that last anywhere from 1 second to 30 second. They only really happen when you're incredibly sleep deprived. For whatever reason, when I get a microsleep it completely removes all my sleepiness but not my exhaustion, so drifting off for 5 seconds always means I'll be awake at least another 5 hours. This means I have to perfectly predict the right time to go to bed and I have to make this crucial decision while high, sedated, and sleep deprived. All on a nightly basis.

    There has been some good news since my last blog post, I had talked about how I was in a crisis due to the pandemic shutdowns because it meant I lost access to my vital therapeutic massage treatments. I had to gobble down methadone pills four times a day instead of one because my pain levels were a constant 9/10. I had to put the course I was doing on hold for quite a while. As soon as the shutdown ended and massages came back I was able to bring the methadone dose back down to one pill. Now I'm doing 3 university courses at once for the first time in my life though to be fair they're easy first year courses. I did a very difficult summer course on nuclear weapons history and managed to snag an 82 grade. The problem is I'm terrified that things will shut down again in the middle of the current fall semester which would be a complete disaster. I'd have to drop every course or find a way to defer them somehow. Even if things don't shut down, if I try to take harder courses again next semester I'll be screwed and almost certainly won't be able to handle 3 at once. 

    Honestly I think I probably feel more depressed now than I ever have been since my diagnosis in 2014. The primary cause is despairing at what seems like the complete hopelessness of my situation. Ketamine infusions were a last resort after trying everything else and even that has stopped working. I'm awake longer each week and it's legitimately driving me insane. I started seeing a therapist two months ago but temporarily stopped last month since I didn't feel I needed more of it yet. Now I'm far worse than I was then so I've decided to restart the sessions today. When you're shedding tears on a daily basis that's a good sign that you need help.

    When I feel this way other issues that have been weighing me down also come to the forefront. I was talking with some family members and someone who I have a history with was brought up. This individual and I were known for having frequent political arguments on Facebook. In one of these arguments the topic of my illness was somehow brought up. As you may know, if I had children they would have a 50% chance of inheriting Ehlers-Danlos Syndrome. I mentioned that I felt I can't have kids both because I wouldn't want them to have a 50% chance of suffering like I suffer and also that I'm aware that if I can't even take care of myself how am I supposed to care for an even healthy child whether biological through adoption. The response of the person I was arguing with and his friends was to call me a eugenicist. That would be true if I was saying no one with EDS should have kids but that's not what I think at all. I just know it's not a good idea for me to do it and would never tell anyone else how to make this deeply personal decision. To this day I'm extremely upset by this event. It's not uncommon for me to break down when I despair about the 99% chance I won't have kids, and to be labelled as a eugenicist for that is extremely infuriating. If someone with a genetic disease that meant their potential kid would not live past the age of 2 would that person personally choosing not to have kids make them a eugenicist? Now whenever I think about that person I remember what they said and that train of thought brings my mind to the no kids reality and so my mood darkens whenever that person is brought up. That thought process continues because I naturally think about the underlying reasons I won't have kids, that being the reality that my EDS symptoms will almost certainly worsen with age. It's hard to be optimistic about having a happy and healthy senior life when you have horribly defective joints. It's hard to know for sure how bad it would be because mass EDS diagnoses are relatively new so most elderly with EDS aren't diagnosed. I think all these worries are legitimate which is why my current depression or miserable state or whatever you want to call it is quite rational. 

   As a side note, my inability to have kids is also why I'm so attached to the summer camp I attended and worked at as a writer, actor, or counsellor before the pandemic. Losing access to this creative outlet indefinitely is another hard hit on my mood. Many people are extroverted, meaning you feed off the energy of interacting with others. I feel that I am especially extroverted when it comes to entertaining kids. They don't care about my physical limitations. They just appreciate my ability to make sure they have fun. So when half a dozen campers separately come up to me to tell them I made their summer then that in turn makes my year. To lose that opportunity is a hard blow as well. Hopefully one can understand the nature of my current mental health crisis and why I'm worried there may be no resolution for it.

You'll Be In My Heart

It's been a while since I did a music post. For those who are new to the group, with these posts I take songs that have special meaning to me and explain why I relate to the lyrics. The song I chose this time is linked below.

                                                          You’ll Be In My Heart

https://www.youtube.com/watch?v=git6DCXSqjE

Come stop your crying it will be alright. Just take my hand, hold it tight. I will protect you from all around you, I will be here don’t you cry:
I see this song from the perspective of my parents trying to console me. This line says that I shouldn’t despair because we’re in this together.

For one so small, you seem so strong. My arms will hold, keep you safe and warm. This bond between us can’t be broken:
This translates to the fact that I may be fragile physically, but my will to persevere is anything but weak. I try not to think about myself as simply the runt of the litter who needs extra attention.

You’ll be in my heart, no matter what they say. You’ll be here in my heart, always: 
People who don’t know me may see the fact that I still haven’t finished undergrad as evidence of laziness. My family knows better and would never give up on me.

Why can’t they understand the way we feel? They just don’t trust what they can’t explain:
A disturbing amount of people believe my illness must be some sort of karma for being a bad person or even just for being an atheist. Some people can’t explain how a good person can be so afflicted, and so they mistrust the whole situation and are reluctant to give the benefit of the doubt.

I know we’re different but deep inside us. We’re not that different at all:
Our situations may be different but at the end of the day we’re all just trying to deal with the curveballs life throws at us.

Don’t listen to them, ‘cause what do they know? We need each other, to have, to hold. They’ll see in time, I know:
It’s unsurprising that people outside of your immediate circle will be judgmental about invisible illnesses and disabilities. One day an invention is going to be made where pain can be objectively measured and I’ll expect a lot of apologies.

When destiny calls you, you must be strong. I may not be with you, But you’ve got to hold on:

If your destiny is to struggle, your only choice is to be strong. Parents may not always physically be there, but their support never dissipates.

Always, I’ll be with you. I’ll be there for you always. Always and always. Just look over your shoulder:
Looking over your shoulder means looking backwards into your past. Doing this allows you to see what you’ve been through and more importantly: what you’ve overcome.

Ears, Teeth, and Virus, Oh My!

   Ears. We take em for granted. For something attached on our head, we don't pay much attention to them. We go to the dentist, we get our eyes examined, we get nose and lip jobs. But if you've ever experienced your ears getting completely blocked because your traitorous body likes to produce obscene amounts of wax... your name might be Mitch. What I'm trying to tell you is a few months back I lost virtually all hearing for a little while. Well, I could hear a loud screeching sound called tinnitus, so I had that going for me. I went to a party but had zero fun because I couldn't hear anybody. By this point Coronavirus was already on the move, so going to some random walk in clinic wasn't a very enticing prospect. I tried everything I could to fix it myself, with the help of my uncle. We put oil softener in and sprayed water into both ears numerous times, to no avail, so off to the clinic I went (wearing a mask.) The doctor tried spraying himself and that didn't work either. He told me to go home and keep using the oil for a few days to come back and try again. That didn't make any sense to me given my many previous efforts of doing exactly that, so I asked for a referral to go to the audiologist who happened to be in the same building. The walk-in doctor refused.

     Frustrated, I went to the audiologist anyway. Due to the lack of referral I had to pay them $60 to fix it... but fix it they did! They used this kind of sucking machine that just removes everything with brute force. As you might imagine, it was not a pleasant experience. My eardrums were already extremely tender from the previous attempts to clean it, but you can't put a price on being able to hear again! Basically every doctor says not to use q-tips but whenever I forget to this is inevitably the result. I've heard some others say the same, so oh well.
  In great news that did wonders for my general mood, my ketamine doctor indicated he'd be willing to consider more ketamine infusions every half year! Up until now I've only been able to get them once a year. After a few months it starts wearing off and after 6 months it's always completely worn off and so I get trapped in a cycle of entirely losing my functioning every 6 months. Due to that I had to completely drop out of school for the fall 2019 semester, which is the first time I had to do that since 2011 in high school. As soon as I got another infusion I went back to school next semester, so hopefully getting them every half year will break the cycle. Getting a summer infusion would also make going to camp again a possibility, but Coronavirus isn't playing ball when it comes to that this summer. Here was the letter I got from my ketamine doctor:

    Yes, things were going relatively smoothly. Until, oh no, disaster struck! Dun dun dun. I got a toothache. Quite a bad one, and for the first time. As I was quickly told, toothaches can be quite serious. If it's an infection and you leave it alone you could lose the tooth, or it can spread up your face into the brain. True story! I could barely eat anything. I couldn't see the dentist the next day because I was going to be asleep all day. Luckily, my doctor dad has a lot of doctor friends, including dentists, so that very evening I went to see one. They thought I had the very beginnings of a root canal infection. They said that having braces can actually cause damage leaving you vulnerable to infection, even 10 years after the braces come off. They also said such dental issues are associated with Ehlers-Danlos Syndrome. They gave me antibiotics and said it's very important I start them ASAP, so I went straight to a pharmacy. Not only did the pain interfere with sleep, but pre-sleep vaping was quite painful as well. Thankfully the pain got 70% better overnight thanks to the amoxicillin. My gums were still pretty sore so I went to my usual dentist to get x rays. The x rays didn't show anything but they said that a new infection could take months to show up.
    Throughout all this, progress on the documentary about my illness continued. In the end the fundraiser raised $3125 which is really awesome, so thank you to everyone who donated. Many hundreds of people are following us on Instagram. You can do the same here: https://www.instagram.com/_bend_or_break_/?igshid=1th8auxd73nst
Since I've been asked, no I'm not being paid anything for this. The funds go straight to the budget of the movie. It's purpose is to spread awareness, not to make money. Almost half of that money has been spent on hiring a professional contortionist to be featured in the film. I haven't seen this footage, but have been shown pictures which I'll post below. The sad thing is that the coronavirus pandemic has of course put these things on hold, but they are able to continue doing some final editing. Even if it was finished it wouldn't be released until film festivals are safe again.  Something really cool is that the University of Guelph heard about the film and shared it on social media! Didn't see that one coming. There's a few scenes left that they need me to film but I have to stay away from everyone.

    This pandemic is probably the scariest period of my entire life. Given that my chronic pain started
when I had swine flu in 2009, and my health is far worse now compared to then, who the hell knows what kind of damage this far more severe virus would do to me. The sleep deprivation I experience alone massively compromises my immune system. Whenever I get what's supposed to be a minor illness, like a cold, it shuts me down for weeks. This issue only gets worse the longer I go without my treatments. I can't get my ketamine infusions or weekly therapeutic massages, so my pain is spiraling out of control. It's usually 8.75/10 now and I'm back to being awake 26 hours everyday. Before I figured out that I suddenly needed to stay awake several hours longer than usual, I'd try to go to bed too early (too early for me meaning 22-24 hours of being awake). My sleeping pills would then wear off before I fell asleep and I couldn't take more. This meant I'd consistently sleep only 5 hours when my body needs 18 after being awake that long. Even after being more exhausted than I'd ever been in my entire life, I'd be awake 22 hours. This extreme deprivation led to me constantly being sick, which of course just made it all worse. You'd think that with such little sleep at least my REM % would be high, but it wasn't. In fact, it was so low that my fitbit wouldn't even give me an exact percentage, but it was around 5% when I need at least 20% in a super long sleep. If I got sick with coronavirus sleep would be even more destroyed because since it's a lung infection I wouldn't be able to vape to help sleep. That means if I got coronavirus I'd go back to being awake 33 hours everyday, which means my sickness would be very severe. Plus, my frequent vaping probably means my lungs aren't amazing. With the combination of being awake 26 hours, pain being unbearable, and having lots of risk factors for the virus, every night I get quite depressed. I have to vape for sleep but while I vape I think about how it makes me more vulnerable to the virus and all this shit piling on causes something like panic attacks. Usually I could read books to distract myself and help to fall asleep but my pain is so bad after being awake that long I can barely read now. I'm told by doctors in my family that I'd definitely need to be hospitalized so I can be given sedatives to allow rest to boost my immune system. Except, as you know, I don't absorb/metabolize medications properly so who knows what lengths they'd have to go to. As soon as the virus started spreading in Toronto I started thinking about fleeing to my family cottage in Peterburough. When my uncle who I'd been living with got sick after returning from France (which was being hit hard with cases) it was the last straw and I left. In the end he probably didn't have the coronavirus, but it's good to avoid getting sick with something else anyway. I've been here for almost a month now. At first I was mostly here by myself, but now that the legislature is closed my mom is here with me and taking good care of me. She's the only person in the world who's allowed to go anywhere near me until the danger has passed. I cancelled all my in-person doctor appointments. In other words, we're taking no chances when it comes to my safety.

    Before everything went to shit again I was able to finish my political corruption course. That means I've now done 11 out of 40 courses. Since my pain is out of control I contacted my family doctor to request temporary painkillers throughout the day. Unfortunately since my professor is overwhelmed with the coronavirus fallout I won't be able to start another course for a while. Basically, it doesn't matter if painkillers cause me to be out of sorts mentally during the day since there's no work I can do right now anyway. I plan on going off the painkillers as soon as I have access to my treatments again at the end of the pandemic. For now, the doctor increased my methadone dosage so I can use it up to 4 times a day.

Lastly here's a very important video on what it's like to have illness related chronic brain fog. It helps explain what may seem like strange behavior:
https://www.facebook.com/watch/?v=884440745322184

REM Troubles and Solutions

In the previous post I mentioned that a case study is being done on my sleeping habits where I have to fill out every tiny detail in an excel spreadsheet, everyday. Here's an example of what that looks like. Read the rest of this blog post below the picture.

     I suppose it was good I had something to keep me busy, because around this time sleep issues started to spiral out of control again. The longer it had been since my last ketamine infusion, the worse things got. My functioning dropped down to essentially zero; no matter what I did, I'd wake up with a complete lack of energy to concentrate on anything. On my best days I could continue writing an essay, but that wasn't at all helpful because I couldn't absorb any of the information from the textbook that I needed to have the knowledge to write said essay. Forget the pain, imagine trying to read a dense and complicated law textbook after you've been awake for 2 days straight. No matter how much effort you put in, you won't learn anything useful long term. In essence, I had to completely drop out of school for the first time since 2011 when I was at the hospital psych ward. This didn't exactly help my mood a great deal.

      My doctors sensed my desperation and started getting bolder. The next step was trying a new painkiller, oxycodone. We'd replace my codeine with it. My 2010 morphine prescription didn't go... smoothly (if you don't remember: it didn't help, turned me into a zombie, and so I took lots of it to try and end my life) so I was definitely nervous about trying another powerful opioid. But hey, at least that doctor has gotten to know me and trusted me enough to try this in the first place. This was, after all, the same guy who was initially reluctant to write me a letter for medical parking at university. In his response he simply messaged saying "exercise." He did write it when my dad insisted, and our relationship is great now. Point of clarification though, I had no intention of using the oxy during the day (unlike we did with the morphine.) As it was with every single one of my pain and sedating medications, it was meant to help me sleep. I can handle the pain if I can get rested sleep. Sure, using it during the day would help with pain, but the goal was to get me back to school and being high all day didn't seem conducive to that. I had seen a study on using oxy to treat EDS pain and it said it should only be a last resort. That it was.
   So, what happened? The oxy let me fall asleep 4 hours earlier. You may think that's a good start, but it also completely destroyed my REM sleep cycles. On the first night it dropped by half, 28% to 14%. My sleep doctor, who had nothing to do with the oxy prescription, was not surprised. As with most opioids, he was aware that it can really mess with your sleep, doubly so for oxy. I had one not horrible night where it hit 21%, but with that I can only work for a few hours in a GOOD day as opposed to the 7 hours with the 28% and 12 hours in the aftermath of the first ketamine infusion years ago. Things were mostly bad though, so it was decided that we would double the oxy dose. I was aware it could be counterproductive, but without any alternatives it was worth a shot. And then... regrets.

Fitbit Report

  My REM dropped down to 5% after we raised the dose. After a second night of this, I immediately stopped all of the oxy, and things went back to the also crappy "normal." Essentially, to function, I need REM to be in the 20s, to live I need REM to be in the teens, when it drops down below 10% you simply start losing the will to continue on. You can enjoy nothing, and are just killing time with distractions until something changes. Here's a quote I sent to my family while all this was happening a few months ago: "Now this is just ridiculous. I took double the OxyContin for the first time last night and look at how insanely awful my sleep architecture was. I only got 5% REM. That's by far the lowest I've ever gotten. On top of that I only slept 10 hours so that means I only got 39 minutes of REM and I was awake for over 2 hours of those 10 hours. It was mostly entirely light sleep at 62%. I can't overstate how frustrated I am. Not sure if I should even bother trying again tonight. This crap is why I'll have to drop at least one of my 2 courses. Compare all this to a good night's sleep where I get 28% REM after sleeping for 14.5 hours for a total of 4 hours 35 minutes of REM. And my light sleep is only at 40%. It's unbelievable." I put a lot of effort in manipulating sleep so that'd I wouldn't sleep through my cousin's wedding in Montreal, but noise in the house a few days before from Rosh Hashanna celebrations woke me up and ruined my plan. This caused me to miss 95% of the wedding. I went to the party for 20 mins, then left to go back to sleep. Meanwhile, we were messaging the ketamine doctor about trying another infusion, but he refused saying I'm already on ketamine nasal spray. The spray helps, sure, but it wasn't nearly enough. I felt like I was officially out of options. Such news would usually make me have suicidal thoughts but my family and friends had been so understanding that it made it far easier for me to accept my own limitations.
     I got back from the wedding and so was finally able to return to the family doctor to report the disastrous oxycontin trial and the fact that I had completely dropped out of school. There I learned I wasn't quite out of options, yet. Just like me he was dismayed at how rapidly I lost my functioning, and proposed a few things. We agreed that patches like a Butrans or Fentanyl patch were a bad idea. This was because for those meds to work you have to build them up in your system, and that means wearing them essentially the entire day. As I've already said, being high all day may be more comfortable pain-wise but wouldn't improve functioning. There were two other things to try. The first was changing my codeine pills to slow release forms. Maybe that would help me stay asleep. This meant we had to raise the dose, though. If that failed, we'd try Methadone, a more powerful opioid. Well, it failed. My REM dropped to 8% on the first night and on the second I was only able to sleep for 3 hours. Basically, it was almost as bad as the oxy. It was time to move on to merthadone.

    I told the family doc that we had emailed the ketamine doc again, explaining that I'd lost all my functioning and would be willing to stop the nasal spray if it meant getting another shot at the infusions. The family doc remarked that he thought the ketamine doctor was being too conservative. He said that ketamine only stays in your system for a week so if the nasal spray was preventing another infusion (and infusions have been temporarily amazing in the past) I should just stop the nasal spray for a week and do another infusion. He also didn't understand why the infusions have to be a year apart in the first place. He wished he could prescribe them for me himself. But then, a miracle. At the same time as I was starting the methadone the ketamine doctor responded saying he would in fact do another infusion, but this time it would only be over 1 day instead of 5 days. I'd stop the nasal spray a for a week before it since I didn't have any functioning to lose anyway. With the methadone my REM went back up to 25% but I didn't actually feel rested yet because I needed to stay awake as long as psychically possible to change my sleep schedule to make sure I made it to the hospital on time for the ketamine. A promising start, though. I was actually surprised because I had read that 3 quarters of those who use methadone reported clinically significant sleep disturbances. Figures that that ends up being the one that works best.
    It was time for my third high-dosage infusion. Since it was over a single day they went full throttle right away with the dosage. Balls were tripped. Keep in mind, this is done at a hospital under constant nurse supervision because the dose is dangerously high. If you've heard from anyone who's taken ketamine recreationally, you know you see crazy things, but picture that effect doubled. Sure you do get very high but there's more to it than that. Your vision gets high too, but more literally. I'd describe it as floating through the ceiling into different rooms where the outlines and walls are more like liquid than solid objects. As your brain gets higher, so does your floating consciousness. Each room is more vidid and disorienting than the last as the pain drops to 0 for a while. Then once the IV is stopped it slowly starts morphing back into boring old reality and the pain immediately starts flooding back in. As per usual, in my more lucid moments, I spend a lot of time cycling my legs as if on a bicycle just because of how novel it felt to move them without getting an immediate pain response. The doctor was nice enough to come visit me again, a pleasant surprise. Due to the rapid high dosage the nausea was awful, I couldn't eat or drink a thing for many hours afterward even though you have to starve yourself before each infusion.

    So how did it all end up? It worked! Again! I had my first decent sleep in half a year and right away started doing schoolwork again. It's indescribable how good that felt. To wake up and realize "Wow, I can think relatively straight for the next bunch of hours." Now on good days I can work for around 6 hours instead of 0, and on top of that I'm only awake 18-20 hours instead of 24-26. My REM was 29% and it was over a 16 hour sleep so it makes sense that I finally felt rested. The bad news was the alternating days issue theory still applies. For those who don't remember, this is the idea that I can never have 2 good days in a row. The better I sleep the harder it is to sleep the next night. Being awake longer incurs more sleep debt so it's guaranteed that I won't wake up rested the following day. This all happened 1 month ago from the time of this post and I still basically get a good day once every 3 days on average. It's kind of crazy that we're at the point where that's amazing, but there you have it.
    A few other things of note:
1. My sleep doctor had me start taking multivitamins because he thinks I have a hyper-metabolism. It would certainly explain why I need such high doses of medications to get any effect. Funnily enough, insomnia and hyper-metabolisms have been found to be related. I've also started GABA and Magnesium which some say can help with sleep.
2. They recently updated the diagnostic criteria for EDS. I meet both criteria but apparently only 15% of EDSers can say the same. Most do not meet the new criteria which you can view here. https://onlinelibrary.wiley.com/doi/abs/10.1002/ajmg.a.61459?fbclid=IwAR39ZNmFl-0OBRxkU3DlQJHD6hRFjMUrSpDV5lgOG8nQs1kdfd5ZFO3rE7I
3. The neurologist who clinically diagnosed me was just arrested for sexual assault of his female patients. Most people diagnosed with EDS are with females, I wonder if that's a coincidence. Read about it here: https://toronto.ctvnews.ca/mobile/toronto-neurologist-charged-with-several-counts-of-sexual-assault-1.4739409?fbclid=IwAR1VoDIhtTHxYHgjA-O0qf-9l_PRsm4kkTU1EGNJMx5wanWBRtHotD9NGXU
4. News of the documentary featuring my struggles with EDS is rapidly spreading! The head of the Ehlers Danlos Society, the largest EDS group in the world, posted our doc trailers on her instagram page and said she's very excited. She was the star of the EDS documentary where she ran an entire marathon (With big complications, don't try this at home kids.) Thousands of people have seen the teasers for my own doc and hundreds have commented their excitement. $2420 has been raised so far for making it as great as possible. You can see her marathon doc here: https://www.youtube.com/watch?v=wd6EojcCMDA

Emergency Room Traditions

     It should come as no surprise that working at a summer camp is extremely challenging when you have severe leg pain and sleep problems. Last year I was unable to go for the first time since 2007 because my sleep and heat allergy situation was too awful. Getting around these days is only made possible through constant usage of my bike. When I was a camper I didn't really have the idea to bring a bike with and tried to get by by scarfing down advil. Not a recipe for success, which is why I had to go home for a week's break most summers. I had to go home sooner than expected this summer too, but it was when the campers left so not the worst thing in the world. The problem is that even with my bike I'm extremely dependent on my weekly massages. I had a couple of appointments in Perth but the first one wasn't a registered massage therapist and so refused to push hard for deep tissue work. The second place was better, where they told me that the only other patients they use maximum pressure on besides me are those who weigh 400 pounds and so they need extra strength to get through the fat. Unfortunately, all of the massage places in the area started becoming fully booked. Not having massages brought my pain up to 8.75 out of 10 so I went back home for the summer just to get one. During these pain spikes, it's not so much that I want to die, because the consequences of that would be terrible. More so, even outside pain spikes, I wish I never existed in the first place. This quote does a good job of explaining this perspective:

      Most of my official job this year was essentially being a writer and actor. On most nights counselors would perform plays for the kids and that's what I worked on. I became pretty adept at adapting popular tv shows and movies to work in a kid friendly camp setting. This year we chose Harry Potter, Brooklyn 99, and the Princess Bride. This job turned out to be a great fit for me because it mostly doesn't require standing and if I'm occasionally nocturnal I can just write the scripts at night. Since I sleep through entire days it was definitely a challenge to make scheduling these programs workable but my coworkers did a great job of accommodating me so I didn't miss any of the super important stuff.
     Acting has always been a favourite activity of mine and camp is a great welcoming place for that kind of thing. It wasn't just limited to the plays, though. Interacting with and entertaining the many children is essentially constant improv acting. It's one of the most fulfilling feelings when kids come up to you to say things like "Mitch, you're really nice. You made my camp experience way better. Are you coming back next year? Are you going to winter camp?" I even had kids ask me to take them on their trip counselor-in-training to Israel and had to explain I couldn't even go on my own group's trip to Israel in 2011 because of my health issues. Aside from the great feedback I'd know the plays were good when the cast was too busy laughing at the jokes during rehearsals.
     I loved doing silly things like creating an army of children with water guns at the local splash pad and directing them to attack other counselors. Of course they inevitably eventually turned on me but for awhile they were running around literally chanting my name. One group of little girls figured out I was ticklish and took full advantage of it. The problem for me is my legs are not capable of simply running away like anyone else would. One or two I could handle, but they had an entire squadron. There was one instance where I made the mistake of trying to run away, for just a few seconds, to the staff only area. Even this tiny burst of quickness made me deeply regret that decision because of the extra leg pain over the next few days.
    In the rare instances I got serious about something they'd listen; which allowed me to make rules like "no tickling Mitch while he's eating so he doesn't choke to death." I'd make deals like "I'll tell you what the play tonight is about if I get a temporary break." They'd agree and then gleefully tell me their fingers were crossed. My goals were simply to make sure they had a good time and that certainly happened because when I approached the kids to say goodbye at the end of the summer their parents said they'd already heard all about me, even though I wasn't even a counselor. Other staff would observe my shenanigans and said sent me messages saying things like "You are amazing! The kids love you and you always somehow have the energy for them." This is interesting because the main reason I always seemed to have energy for them is that when I didn't have the energy I'd stay away from camp at an Air BNB in Perth. Usually I'd be sleeping on the camp grounds so I'd be visible even when I'm not well enough to be productive but since this year was different people only really saw me when I was at my best.

     That's right, for my first time ever I didn't sleep on the campgrounds this year. The person in the place I usually slept in was an older guy and not willing to share the space with me. Instead I found a very cheap Air BNB in the nearby town. I had my car with me so I'd drive to camp whenever I happened to be awake. Since my sleep schedules are very random I'd often take over the night watch job if those assigned to it wanted to go to bed. Normally I would have declined a paycheqeue because I don't do this for the money and it's a non-profit camp. However, paying a few hundred dollars for a place to sleep so I can do work isn't the best situation. So myself and those in charge agreed to a compromise. Since I'm awake roughly half the time, I'd take half of what my paycheque would have been and put it all towards partially paying for the rent. That covered around half of it.
     As for the place itself, it luckily had a very loud air conditioner right outside my room which masked all the noise from downstairs where the owner would hang out. I helped take car of his 2 cats and 2 dogs which probably would have been a problem for most people but I didn't really mind. His neighbors were supposed to watch them while the owner was gone but I felt they were often lacking diligence. There were a few weird rules too. When you finish taking a shower (which is also the room where the cat food is) you'd have to make sure the door was propped open enough so that the cat can get in but closed enough so that the dogs couldn't get in and eat the cat's food.
    It's almost tradition at this point that I have to get sent to the emergency room for one reason or another whenever I go to camp. I've had to go every year for the past 5 years except the one summer I wasn't at camp. This year the problem was an unexplained very strange rash. It was a bunch of tiny vescicles that were sometimes white and sometimes red and they appeared all over my body. They could be scraped off but I was warned by the camp nurse not to do that in case they were dangerous pustules. They only mildly stung but was told by doctors to get it checked out quickly. The emergency room doctor said they'd never seen this kind of rash before and didn't think it was related to my heat allergy. They thought it might be inflammation of the hair follicles, but I noticed that they also appear where there's no hair so myself and the docs in my family disagreed. I have inflamed hair follicles on my feet and they present very differently.  They gave me antibiotics but said not to take them unless it doesn't go away in 48 hours. It didn't go away permanently but I started to strongly
suspect it was in fact heat allergy related, so I never took them. The doctor got very excited when I mentioned I have Ehlers Danlos Syndrome and said she'd never seen one of these before either. This has happened to me several times now. Pictures of rash below:

     Eventually I noticed that these vesicles tended to appear in concert with my regular red hives heat rash. It seemed like it was just a sudden new symptom of an old problem. I don't know why it decided to get worse now, but the dots are quite ugly and bothersome. I'm getting quite sick of new symptoms popping up with no explanation while lacking in potential treatments. In contrast, very little seems to be improving. My lactose intolerance is getting better, so there's that. What threw me off about this new problem's causes is that my regular heat rash hives go away quickly once I cool down but these lasted for another 24-48 hours.
   Overall, camp is both an extremely challenging and fulfilling experience. On the one hand, the pain was at times so bad I was in tears. On the other hand, it's a huge mood boost because writing scripts and entertaining kids is something I can excel at despite my health problems. Sure the kids were curious, asking about why I use a cane and bugging their counselors about where I was when I would sleep through the day. Ultimately, they didn't care about my associated baggage, they just cared that I was fun and were upset when I wasn't around. It's almost therapeutic in its own way to be a strong presence at the camp despite everything and expressing my creativity in a productive manner. It's rougher than you can imagine, but somehow definitely still worth it.

Mitch the Guinea Pig

     The most interesting recent occurrence that took place just a few days before writing this was the agreement between my sleep doctor and I to do a research case study on lil' ol' me! The doctor had already been studying me since I started seeing him a year ago when my previous two sleep doctors ran out of ideas to help me. Most chronically ill and seemingly visibly healthy people encounter the problem of doctors ignoring them or, even worse, mistrusting them. I have the opposite "problem", the doctor is so interested in my case they text me to try to book new appointments. It happens so often that he agreed to do tele-medicine appointments, which is kind of like Skype calls. At every appointment I'd be asked the same questions about how I was doing on a day-to-day basis and told to provide sleep data from my fitbit. This showed the doctor how insane my sleep and pain situation is and so his interest only increased and that's when he asked to do a wider official study.
      As exciting as this is, I know it's going to be a tedious process. I have to fill out an excel spreadsheet everyday that would show all the tiniest details about my sleep and pain cycles. When exactly did you take your pills? What dose were they? What was your pain level that night and the next day? How's your mood? What's your energy level? When did you wake up and fall asleep? Did you use the special wakefullness light after waking up? How stressed are you? How well can you concentrate? What does your fitbit say about awakenings, REM patterns, and deep sleep amounts? Did you take any naps? All this information needs to be filled out on a daily basis for the study. The hope is that this data will convey how unprecedented the severity of my issues are. As the doctor put it, we've been sailing in uncharted waters because no one anyone knows of takes the amount of sedatives that I do while still not falling asleep until I've been awake 24 hours. Remember, the maximum dose for quetiapine is 300 and I take 2300. My parents and I were watching a show called Homeland and at one point one of the characters get a normal dose of this medication and are warned "It will knock you out for days." We started laughing because here I am taking 8 times the maximum dose and I still can't sleep, yet this character is totally knocked out.

       What would be amazing is if this study catches the eye of other researchers who will want to know even more. The assumption is that I just don't metabolize medications properly so if we could fund the pharmacokinetics study I mentioned in the past we could find out what the hell is going on in my body. If we can't get it funded we might just pay the $10000 and do it ourselves at this point. At the very least it would tell us when the optimal time to take each of my pills is based on how my body absorbs them. Perhaps it would even show that I can safely take far higher dosages of my medications because most of it isn't actually making it to my brain.
    The next step in this plan is being referred back to my very first sleep doctor from 2010. He still runs a sleep study clinic so I'll get another one done with him to see how things have changed from the previous sleep studies from many years ago. We're also going to do a melatonin blood test for the first time. I'm interested to see if I have low melatonin levels that explain my insomnia or normal levels that are essentially cancelled out by my ridiculous pain intensity. This first doctor is the one I saw before I was diagnosed with EDS and the only one to agree with me that I was miserable, not clinically depressed, so I'm excited to see him again. Unfortunately this sleep doctor is away for the next while so I may have to do this all in the middle of the next semester which will already be a struggle with my horrible sleep patterns. The plan is to keep doing online courses because ensuring I'm awake on time for each lecture with a 24 hour sleep schedule would be impossible, particularly if I have 3 1.5 hours classes in a week instead of 1 3.5 hour class.
     I had to come back from summer camp a bit earlier than I planned because all the massage therapists in the area of the camp were fully booked up and my legs were killing me. I saw one once while there and they said what they all say, that the only other time they use maximum pressure is with 400 pound patients. My muscles are just that tight as a response to the pain.  I became really sick the day after getting back and it lasted for 16 days because of how crucial decent sleep is in getting better. Not only is my sleep and pain bad to begin with, it gets even worse when you're fighting off a virus. My doctor confirmed that the sickness was causing problems when I showed him that my fitbit said I was getting 10 hours of sleep instead of 16, almost literally no REM or deep sleep, with the REM being so low it wouldn't even assign a percentage to it.
     My shoulder problems have also increasingly come to the forefront of things in the past year. It burns a few times every day so I went to see a shoulder doctor about it. He said my trapezius muscles were atrophied and so physiotherapy might help with the pain. I'd seen this doctor many years ago when my right shoulder first started sublaxating and he said my rotator cuff muscles were atrophied and so I did physiotherapy for that and now when I saw him again he said the cuffs are fine. I went to a new physical therapist and my strength has greatly improved; he said I had perfect exercises form when I saw him again. Unfortunately, my pain hasn't been helped much despite the strength improvement. However, I do think I've been subluxating a bit less. I'm seeing the doctor again in October, hopefully we can find ways to avoid another surgery. I had hernia surgery in February so am not too keen on the idea of having two in one year. Note the asymmetry and winged scalpula:

     You may remember the theme of my hopes being built up with different ketamine solutions only to be somewhat dashed soon after. Not only were the infusions not the permanent solution I hoped for, but the nasal spray I was recently given has its own problems. I had to fight to get a second infusion 6 months after the first one when it was supposed to be one year and then that infusion wasn't nearly as helpful as the first one. Then I'm told I'll only be allowed one more infusion next year so it doesn't screw up my brain too much. That's understandable, but I wish I was given this disclaimer beforehand. Then I'm given the ketamine nasal spray, and while it wasn't as helpful as the infusion, it helped. But wait! Cause now it turns out you can't use it everyday or it will stop working and also destroy your brain. Almost every time I don't use it I have a crappy sleep so the impact on my functioning was very much different than what I hoped for and expected. Stop building my hopes up, man! To prepare for camp I stopped using it for the whole week before, which of course sucked. Though this allowed me to use it everyday while at camp, which the doctor said was a reasonable compromise. He had concerns over nasal perforation from the spray but I looked into this and apparently it shouldn't be a huge concern. The worst thing is breathing in the nasal spray too hard and it going down to your throat. It stings and tastes awful. The doctor had never prescribed the nasal spray before but people in the EDS Facebook groups swore by it so I was able to convince him to make yet another exception for me. I quickly realized I could raise the dosing frequency because a day for me is twice as long as a day for regular people so if I use it once when I'm awake it will be around 38 hours until I want to take it again instead of, say, 20.
    Something else kinda concerning only really happens when I take an extra quetiapine in the morning to fall back asleep, which is very rare. I'll wake up to go to the bathroom or whatever and a few seconds after standing up and walking I'll just completely collapse on the ground. I lose complete control of my body for a second and just plop right down. So far I've never fallen into anything but it's a scary sensation for sure. I only ever take that extra pill when I know it will ruin something important coming up that day if I don't get the extra sleep. It's a weird feeling because it's not really fainting, you're fully conscious but lose all feeling and strength in your body for a moment. I should do what people with POTS do and stand up slowly but when I wake up in the early morning after taking all those sedatives I'm not exactly thinking clearly. Hopefully this is all harmless.