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.

The Hernia Surgery

     It was finally time for the umbilical hernia surgery. Remember that we had to keep postponing it until after the ketamine infusions because because of the side effect of constant violent shaking and/or vomiting that would surely rip the stitches. Remember how I said that my hernias from 2005 recurred until surgical mesh was used? Well I was very nervous this time because the surgeon said he wouldn't know if mesh would be viable for me until after he opened me up during the surgery and took a look. Normally it wouldn't be a big deal but having a connective tissue disorder can certainly cause additional problems. It turned out in the end that he couldn't use the mesh but the surgery was over a month ago and it hasn't recurred. It's hard to celebrate yet though because my other hernias didn't break right away either, it was a year afterwards.

  Coincidentally they used ketamine as the anesthetic and for the first few hours after arriving home the wound barely hurt at all. Then the effect wore off and it started getting very bad. I decided to do my best to avoid taking painkillers because I wanted to do everything in my power to avoid ripping the stitches. If that happened my pain would likely become even worse than it was before the surgery and I could not handle that. With my mind cloudy from the painkillers I kept making very stupid movement decisions like sitting on a couch with no easy way to stand back up without using the stitched stomach muscle area. Plus it just makes you way less careful with movements in general. I was given 27 opiate pills for the pain and only took 6 of them over the entire recovery process; pretty impressive I think. As a result, though, at times the pain was right on the verge of unbearable. I kept telling myself I can handle ridiculously high temporary pain levels, it's the thought of worsened chronic pain that terrifies me.
   It took me a very long time to make it up the stairs to my room. I almost couldn't do it even with my dad helping me. Risking going back down was out of the question during recovery so I was essentially trapped in my room. Ordinarily this wouldn't be so bad but my computer chose to stop working at the worst possible time. It added a lot of stress to an already shitty situation and I couldn't easily fix it because I obviously can't bend down to look at it. Thankfully I had family around who could follow my instructions to try and figure it out. Eventually my dad brought it to a computer store for me and they fixed it but by that point I was already mostly recovered.
     My stomach was also very uncomfortable because I desperately needed to go to the bathroom but could not because any pressure use could easily rip the stitches as well. The first night after the surgery was incredibly awful to the point where I'd rank it as one of the worst experiences of my life. The doctor had warned me the pain would be increased due to having EDS and I certainly believe that. As you know I vape every night to fall asleep and could not do that because I was perpetually groaning from being in so much pain. I also sneeze a lot as a consequence of constant sleep deprivation from being awake so long and that first night post-op when I sneezed it hurt my wound so much I started crying. I had to deal with increased leg pain too because I couldn't get therapeutic massage until I was able to lie on my stomach again.
    I showed my doctor the picture below after taking the bandage off and he said it's very swollen and there's lots of trapped fluid but didn't think the hernia recurred. Overall it healed well but we'll have to see what happens when I become more physically active again. I still haven't tried working out, for example.

    I went to see the surgeon a couple weeks later for follow-up and he agreed that it's healing well. He said there's a lot of hard scar tissue which is a good thing. There is, however, a concern for the future. My muscles were sutured together with knotted stitches. He said me being a skinny guy could be a problem in this situation. In skinny people the suture can protrude into the skin causing irritation and pain. For less skinny people it would just painlessly go into the fat instead of the skin. If this issue happened to me they'd have to open me up again to fix it. At least it would be local anesthetic only, not an entire new general anesthetic surgery. Below is what my new bellybutton looks like. I did request they keep it an innie, and they sort of did. I like the old one better but what can you do. 
    Next up on the chopping block was my second Tedx Talk. It was at York University again and I essentially gave the same speech as last time. The speech was received extremely well but there's just one problem: They didn't fucking record it again! Last time they recorded everyone's but mine because I switched spots with a guy as a favour to him when he asked (as you may recall he had an early flight the next day) and it confused the videographer. This time no one's speech got recorded and none of the people in charge can explain what happened, it seems like the people who were supposed to have the camera never showed up. They were aware that the only reason I was doing the speech again is because I wanted the recording yet they didn't even tell me it wasn't going to happen until I went up and asked right before the even was about to start. There were other speakers and since my sleep is unpredictable I requested to have the ability to go either first or last depending on when I woke up. They granted that request and I ended up going first.
    There was also the issue of speech timing. Last year there was also a 13.5 minute time crunch to give the speech but I was less practiced so couldn't go maximum speed even if I wanted to. By this time I was very well practiced and so had the ability to go a bit too fast and did so. At one point before the event they asked if I could keep my speech under 9 minutes and I said absolutely not but I promised it wouldn't go over the 13.5 of last year. I was determined to keep that promise and did so but the problem is no one else did. The last guy to speak gave a horrible show-offy speech about spending a month in Colombia with his buddies he started a company with. He told us it wasn't a good financial decision but that they did it because they could and then encouraged everyone else to act that way, as if it were that easy. Normally I'd just daydream during that kind of speech but it went on for almost 40 minutes! I can't believe I rushed my speech for that kind of crap. Rushing made me lose a lot of passion so at least when I record the damn thing myself I won't have to worry about that issue. So two years in a row I got screwed over for trying to be a good guy. The first time by switching speech spots with the guy who begged me to do so, and now by keeping my promise to keep the speech relatively short even though in the end no one else did.

     Just like last year many people in the audience came to speak to me after the speech to tell me how much they enjoyed it. A couple of people asked to join the blog group these posts are from because I mentioned them during the speech so they'll be reading this (hi). Someone who works for Sheridan college said they're posting my speech online to show their students. Best of all, a couple of amateur filmmakers approached me saying they'd like to make a short documentary about me and EDS. We're recruiting family, friends, others with EDS, and potentially even doctors to be interviewed about myself and my condition. They also agreed to film the Tedx Talk speech for me so I'll post that on Facebook when that happens soonish, hopefully within a month.
   On a random freaky note, when I take an extra quetiapine pill in the morning to fall back asleep after waking up too early I usually collapse after standing up to go to the bathroom or something. I feel faint and lose all control of my movements, like a really severe POTS (postural orthostatic tachycardia syndrome) episode. There's always a few second delay of it happening after standing up so I usually have something around to grab onto to break the fall but I need to be really careful when taking that extra pill somewhere that's not my room.
    Coming up any day now will be me trying the previously mentioned ketamine nasal spray. If I can absorb it better than the pills then it could be life changing. There's no absorption issues with the infusions because they go directly into the bloodstream but since they happen in the morning it's not going to help much for sleep. If I take the nasal spray right before I want to fall asleep and it gives me at least a good partial effect of the infusion that could be a huge deal. The ketamine infusion doctor has never prescribed the nasal spray version before but my dad found a colleague who has and so she sent my doctor the typical dosage amounts and just the other day my doctor asked for our pharmacy information so he can send in the prescription. I'll have my hands on it any day now!

Ketamine: Round Two

    Three months into the heat allergy injection treatments I still wasn't noticing any benefits. Forget about not being able to go on family trips to Mexico, I was having probably going to a theater to see a damned movie. Minutes after taking my seat with my family I started getting a rash and knew it would be far too painful to sit through. I was about to leave but my dad suggested trying to sit in the seat closest to the doorway where it might be cooler. I even took my shoes and socks off which got me tons of weird looks from the people walking in. My dad went to go get me cold water and ice which I put on my neck. All this still wasn't enough but right before I was going to leave my dad asked the theater staff if they could lower the heater and they did so which let me stay for the movie. I've also noticed that upsetting, and especially embarrassing, thoughts can also trigger an allergy attack. This is because being upset also raises your core body temperature. So imagine every time you got upset about something you got an extremely painful rash to make it even worse.

    It was time for the second set of ketamine infusions. I was in essence a test subject because they were doing it after half a year instead of a full year because of my special awful circumstances. Just like the first time the experience was pure hell. This time around they were able to start off at a higher dose and these massive doses would be a horrible experience for anyone. When you have my almost unprecedented level of insomnia it becomes a whole new nightmare. Since the pain keeps me awake for so long and I have to arrive at the hospital by 7 am I had to pull multiple all-nighters. The infusions are exhausting to begin with and since I went into it with zero sleep it was literally the most exhausting thing I've ever experienced. Now throw my constant excruciating pain into the mix and you've got a delicious recipe for super happy fun times 5 days in a row.

     Why stop there though? I was also the most hungry I'd ever been because once again you're not allowed food or drink past midnight. This caused quite the predicament during some of the nights before the infusions. I had to choose between hunger or exhaustion for the next day. This is because after one of the infusions I got home so tired I was ready to go to sleep right away if I took my sleeping pills. The problem is if I did so I'd wake up at midnight and like I said, you can't eat food or drink past midnight. You can't stuff yourself at midnight either because I erroneously did that the previous year and spent the next day constantly vomiting. So if I allowed myself to nap I wouldn't be able to eat for even longer. Instead of not being able to eat from midnight to 4 pm It would be from 4 pm to 4 pm, 24 hours without food to make even the infusions more unpleasant. Of course if I ate instead of napping I'd be as exhausted as can be again the next day. So choosing between extreme exhaustion and extreme hunger, I chose exhaustion because getting the IV on too empty a stomach will cause acid burn. Thirst was also an issue because my many sleeping pills cause dryness and you can't drink so I just sucked on some ice cubes.

Here's a message I wrote to my family while all of this was going on: "I like to think I'm a resilient guy but I just don't know how to handle choosing between doing kertamine every half year or allowing sleep to go untreated. Today it felt like I threw up more than I've eaten in my whole life which isn't that big a deal but handling the discomfort of the infusions in general is so impossible on essentially 0 hours of legitimate sleep 5 days in a row. Thank you everyone for your support, I would have given up fully long ago without it. I'm doing it but I just feel so damaged from the literal and figurative ketamine nightmares that I get when my body can't help finally passing out eventually."

    Like the first time, my pain went away completely during the infusions and immediately started coming back once the IV was out. I did have a few days of significantly reduced pain before it went back to "normal" again. I find that I'm able handle standing for longer in a shower longer than normal due to both being able to easily bend my legs (standing straight is the worst on the joints) and the warm water, but it still hurts a lot. During the few days of reduced pain I had to stop myself from enjoying crazy long showers because I knew it'd just cause the pain to come back faster. I once again had an extremely supportive family and my uncle spent most of the days beside me reading me one of my books aloud. It was very soothing and the mental effects of the medication made me feel like I did when my parents read to me as a child. I also had several friends visit which was really awesome. One of the evenings when I was still buzzed off the ketamine I watched The Girl with The Dragon Tattoo which is the most messed up movie I've ever seen and I chose a horrible time to watch something like that with my brain all fuzzy.

    Unfortunately these second infusions did not at all help with my sleep scheduling. Before the procedures I was awake for 26 hours everyday. Now almost 2 months later it's 28. However, they did help with my quality of sleep. The infusions took place at the end of January and I had lost all my productive functioning since early December which caused me to defer an exam. I now have some functioning again and finished the exam but it's very minimal. With my insane sleep schedule of awake 28 hours then asleep up to 21 hours I doubt I can handle being away at university in the fall unless things improve. I'm about to try a ketamine nasal spray because people with EDS say they absorb it way better than the pills I'm on. I was also told that they won't do more infusions until January 2020 and they usually only do 3. So that would be the last one unless huge exceptions are made. If the nasal spray doesn't work that's a very scary prospect. 

     I decided I'd try to go to camp this summer as a sort of test run for attempting to go back to Guelph but they might not be able to accommodate my sleeping needs this year. Even if I am allowed to go, I'd say there's a 50/50 chance I have to come home early. I bought many boxes of Soylent (a meal replacement drink) because at camp in the last bunch of hours I'm awake I'd be too tired to leave the area I'm sleeping in to go get food and  I can't make meal replacement smoothies instead like I could at home or university. Plus I can't be walking around outside after taking my pills and marijuana since kids would see me.

     I've had to increase my meds back to their maximum doses just to not be awake more than 30 hours and so much of the brain fog I used to experience is back. Even with those doses after the infusions there was a day where I was awake 32.5 hours! Due to this craziness I may not work as long hours in total as others but for me to do my best to catch up I have to spend all my energetic moments on working. Let's say most people have 9/10 energy levels on waking up by default and I wake up with 2/10. Most people will spend 6/10 of their energy on working and end the day with some left for themselves whereas most of the time I spend it all on playing catch-up and can only stop when I have nothing left to give. This whole idea is what a lot of disabled people call "Spoon Theory."

     Due to the entire week of infusions I had to go far longer than usual without therapeutic massage. This meant my pain was even higher than normal following the aftermath of the infusions and since the pain was so relatively low in the first few days after leaving the hospital it was really jarring and overwhelming to go from one to the other so quickly. I couldn't even get a massage booked right away because the increased pain from no massage made my sleep even worse which caused me to keep sleeping through alarms. If I'm sleeping through my alarms I can't control when I'll be awake and so by extension can't book a massage until that stops. It was a horrible cycle that was not easy to break. When I finally made it my massage therapist said I'm their only patient that can tolerate and requests them using their full force of pressure. I do that because the harder they push to undo the knots the less my joints hurt after the fact.

    In case anyone is interested here is a short article that I think is really good and I definitely relate to. It's about mourning who you were before your chronic illness. I definitely miss not being so snappy when tired. When I'm simply in pain I can avoid it (with strong effort) but when you add fatigue into the mix it becomes in possible. Plus I have trouble finding the balance between telling new people about my health issues so they don't judge me for my oddities or sharing too much and scaring people away.

Article Link

    Something interesting took place over winter break. I went to two parties and at both had 13 shots of fireball whisky. Following this when I was ready to go to bed I fell asleep instantly without taking a single sleeping pill. It seems that alcohol is a more effective sleeping aid and painkiller than my 20 (I counted, there's 20) pills combined! Instead of being awake 30 hours I was awake 9 hours and didn't use marijuana either. Without the pills it was a very disjointed sleep but that gave me an idea. Sometimes I'm put in impossible situations where I need to wake up at specific time the next day for an appointment or something but my sleep schedule is all wrong. On occasion I need to pull an all-nighter like with the infusions because if I take my pills I won't be able to wake up on time for the appointment. In those rare situations, what if I took no pills and just had alcohol? This kind of emergency would only happen a couple times a year, so don't worry, I have no intention on becoming an alcoholic. I brought the idea up with my sleep doctor and he of course can't officially condone it but implied it's not a horrible idea if I want to try it on my own. I haven't yet had a reason to do so but I will if needed. With the infusions out of the way next up on the roller-coaster ride was my long awaited umbilical hernia surgery.

This picture was taken on my birthday in 2011 while I was on morphine. It may be less easy for others to tell but to me I looked very drugged up and my smile doesn't reach my eyes.

 

A Tactical Retreat

Someone with EDS created the following artwork to try to convey what EDS pain would look like if it were visible. There's arrows through the head, neck, chest (costochondritis) and knee joints. It can be so bad that I take even the tiniest shortcuts. For example, you know how they advise you to wait a little bit before drinking from tap water? I don't do that because even just the few extra seconds of standing make it not worth it.

 

     To start off, my doctor brother gave me some really cool news. A patient of his mentioned she had EDS and so my brother mentioned that he has a brother with EDS who has a blog named Bend or Break. Turns out she recognized the name and had read my blog all on her own, she wasn't in my special little Facebook group of friends and family. I had never met her or spoken to her. She just found it randomly online and followed it from there. This was really encouraging and awesome to hear; I wasn't sure if anyone outside the group I run read it but apparently there are some out there. How many? I have no idea. 

     In terms of academics the lecture professor saw how I was struggling and looked for ways he could help. The biggest offer was to do reading courses with me. I had never even heard of reading courses before. Basically you choose a topic in your field (political science) and research the hell out of it. That of course means a lot of reading, hence the name. The point of it is so you can work at your own pace. It's one on one with the professor and can be done online so due dates and such are far more flexible. This was invaluable to me because due to the renewed horror of insomnia we decided it'd be best for me to do the winter 2019 semester from home. I look at it as a temporary tactical retreat.

       A big factor was that the problem of sleep deprivation combined with being at university meant I was sick from the extra germs and weakened immune system more often than not. Being sick in turn makes my pain worse which in turn makes my insomnia worse which in turn... To make matters worse I was told my allergy injections may further weaken my immune system. Thankfully, with a doctor's note the university gave me my residence deposit back as a refund. If needed I could extend the reading course into the summer. During all this I kept breaking personal sleep records; a few days ago I slept 21 hours and 10 minutes. The whole day just goes poof. 

     I started transferring to a new sleep specialist who was the colleague of my old one and he said at some point we should do an overnight test that checks what my melatonin  blood levels are throughout the day. He also prescribed 2 new sleeping medications to help me try to lower the consistently ridiculous quetiapine dosages. The quetiapine had been causing brain fog which I would successfully treat with vaping CBD cannabis. The new saphris medication is very similar to quetiapine and helped me lower it from 2000-2300 to 1350-1650. The new silenor medication is similar to melatonin and helps me stay asleep. They didn't help reduce my wakefulness periods at all but they did help me fall asleep with my quetiapine dose almost cut in half again. That dose kept rising as the ketamine infusion effects continued to wear off. I always have to wonder what the bigger factor is between my body not properly absorbing medications or my pain being so high that it takes extra doses to help at all. As my functioning decreased again I was forced to defer one of my final exams into the end of February next semester. Why so late? I needed time to recover from an upcoming surgery because...

     An old issue suddenly reached a tipping point: my umbilical hernia. I've had it for many years but it didn't start being painful until a couple of years ago. I mostly ignored it because it didn't appear to be dangerously strangulated and most of the time didn't hurt at all. No longer, now it hurts badly almost all the time. Hernias are a very common problem in those with EDS. I had 3 inguinal hernias when I was 9 and 10 years old, this was my first umbilical. My worry was that the hernia would become strangulated (which is life threatening ) at a very inconvenient time, like in the middle of a difficult semester or while travelling. I was examined by a surgeon who agreed we should get surgery out of the way now. 

    I'll have another scar to add the collection and was told my innie bellybutton might become an outtie. I barely cared, but found out there's a simple method the surgeon can use to keep it an innie. I have a very slight preference for that if it's no trouble anyway. Since the xolair allergy injections tamper with the immune system I'll have to be given extra antibiotics for the surgery. That's probably the smallest of the many problems surrounding this. Of course my shitty fragile EDS skin also increases the risk factor. According to the surgeon the general population has a 15% chance of the surgery going wrong and I have a 20% chance. Even with that, I'm worried my number might be significantly higher because even for someone with EDS my skin is really weak. He may be a great surgeon but knows very little about EDS itself. Recall that that was how I got diagnosed in the first place. Skin biopsies are usually non-conclusive for this kind of thing but my skin was so deformed the dermatologist said there's no doubt I have EDS. As you might imagine, I don't exactly trust my skin to do its damned job after the surgery. To add on to that, I will need extra antibiotics because the allergy injections mess with your immune system.

    Something especially problematic was that the surgeon said he can't use the mesh procedure to repair the hernia and so would need to solely use stitches. When I had my groin hernia repaired in 2004 it broke and recurred in 2005 and they had to do it the mesh way the second time to keep it safe. I worry this foreshadows that without mesh my bellybutton hernia will also recur. To make matters worse, the surgeon said another risk factor is that I have very little fat in the area to work with. I'm still not sure if he means me being fit is a bad thing in this way or if the lack of fat there is just biological chance and nothing to do with fitness. My cousin who is also a doctor said that if it does recur there's a high chance it will be worse than it started. When I heard that, I almost called off the surgery but when the pain continued to worsen and significantly impact functioning I made the decision to stay the course. 

     The same cousin suggested that I talk to my old EDS specialist to ask if there's any special surgery precautions we should take given all my known issues. The head of the only EDS clinic in Canada said: "Surgery: Patients with EDS have fragile skin that is more prone to wound dehiscence and delayed wound healing. If the patient requires surgery the  following should be taken into consideration for: Skin closure should be  performed in two layers with minimal tension, a sufficient amount of sutures, deep stitches, and supportive Steri-Strips or skin glues. Skin clips/staples should be avoided.  Finally, sutures should be left in twice as long as normally recommended in 

order to avoid wound reopening. If anesthesia is required, refer to PubMed PMC4223622." I also asked him about if they're now willing to look into pharmacokinetics medication absorption testing as a study with me but he said they still don't have the funds for such an undertaking. At least I take that to mean they might one day be interested in using me as a test subject if the required cash ever materialized ($10 000 I think). 

     My dad added this, saying "I don’t have expertise in this so I am basing it on theory. They would assume that the connective tissues don’t have normal support so they would avoid using those tissues to close the gape in muscle. They would suture muscle to muscle and use extra sutures to close the internal wall." He warned me that this special method will mean a more painful recovery but I say bring it on. As long as the entire hernia doesn't recur I am perfectly fine with dealing with temporary increased pain. When you suffer severe constant chronic pain anything that's temporary seems minuscule in the overall picture. 

     These worries of mine increased when I again turned to the EDS group. I asked about people's hernia repair experiences and received some crazy stories. Almost all of them got mesh. This one person had the stronger mesh repair and it STILL recurred 2 weeks later, and no mesh for me. Now they have to live with this: 4 prongs sticking out of their stomach.

      

      Lastly came the most important occurrence: I got approved for more ketamine infusions! After begging for the entire semester they finally agreed to another 5 day stint at the hospital at the end of January. It's a shitty feeling to have to beg for something you hate. It's not as if the infusions are remotely pleasant. They suck, hard. I wouldn't ask for more unless I was truly desperate. If you are reading this before the end of January 2019 and want to visit me at the hospital of downtown Toronto then the dates are January 21-25 from early morning to afternoon. Just shoot me a message and we can coordinate.They normally do infusions once a year but I need them once every half year, evidently. Yes there are brain damage risks but if the doctor (reluctantly) agreed that means they're acceptable. I'd rather have some functioning and risk brain damage from ketamine than have no functioning and risk brain damage from constant sleep deprivation. 

      I was really hoping to do the procedures over winter break but the best they could do was put me on the cancellation list. Thankfully, before we began finalizing things, I realized a very major concern: how the infusions would impact the surgery. As you might remember from my original ketamine infusion post, the flood of high dosed ketamine into your body makes you shake uncontrollably for hours on end as if you were having a seizure. If I were to do the infusions after the surgery I'd surely rip my stitches back open and ruin everything. Therefore we booked the surgery to take place a few days after the infusion. This unfortunately meant I'd have to put up with the hernia pain a bit longer, not to mention it completely screws over the next semester. 

     At the very start of the new semester my productivity will be low all of January because of the insomnia and hernia pain until infusions and surgery. Then I have to set time aside to deal with the week of infusions themselves followed swiftly by surgery recovery. Like I mentioned earlier, my recovery will be twice as long. Then there's the time needed to re-study for the deferred exam. Then there's the allergy injections which may become once every 2 weeks instead of monthly. Then there's my important weekly massages and a constant barrage of other doctor appointments. With all this going on it's very valuable that I have access to reading courses because I'll probably have to extend them into the summer. My productivity will hopefully skyrocket again from the infusion treatment and hernia going away but I'm not looking forward to  another period of constant work and no social life. I'll put effort into being social over winter break, that stuff's important. I just have to hope I haven't built up a tolerance to ketamine or something. Still, I may struggle to complete even a single course next semester. Maybe my some miracle I can do one and a half courses if I recover quickly and then finish the second course in the summer. Wish me luck! 

The Deterioration Begins

     Although the amazing ketamine results allowed for a triumphant return home from the hospital (I was shouting from the rooftops about the new and improved Mitch) it was not to last. The first 2 weeks were incredible and everyone was quite happy for me. Recall that I was far less grumpy and even cried tears of joy for the first time when after a suitable amount of time I finally began to accept that the improvements seemed permanent. Although even after those initial weeks things were relatively great I did quickly start to notice everything I had gained had started to scale back. Every week it’d take a little longer to fall asleep. By extension, the total amount of time I needed to sleep to make up for it kept rising. Of course, this was slowly sapping at my productivity. Fully aware of this, I started scrambling to take advantage of my higher functioning while I still had the chance. 

         For years I was unable to begin driving lessons to get my G because of the persistent insomnia. There are things I can force myself to do despite exhaustion, but obviously driving is too dangerous for any of that. As soon as I felt up for it I began lessons. Thanks to the improved situation I learned so much more quickly than when I did my original G2 many years previously. Thanks to lower medication and therefore lower brain fog levels within a fairly short amount of time I took the test and passed on my first try.

        Suddenly I was well enough to visit my beloved summer camp for a weekend. I had desperately wanted to go for the whole 3 week summer but between the pre-ketamine troubles and my heat allergy it seemed completely impossible. That would lead me to regrettably not sign up for staff in the months leading up to the summer beginning. At first I was just happy to be able to visit in the end, but after a hellish year being there made me realize how badly I needed to stay longer. I feel very little judgment while there and not only does no one seem to mind my leg difficulties (which were made worse because I didn’t have access to my bike) but people were incredibly helpful in dealing with them. From simply heading to my cabin to grab something for me to literally carrying me on piggy-back up hills there’s always someone around happy to help. It goes beyond that as well. Though the kids are curious of my cane as expected, they mostly look past it. Both they and I are more focused on my successful attempts to entertain them.

      Usually when I’m at camp it’s as a member of staff and so we always work out sleeping accommodations before the fact. This time that wasn’t possible and so I had to receive last minute help that went above and beyond the call of duty. The camp director has the only true house on the campgrounds and he offered to temporarily move into a different room with his family so I could sleep where he usually does. This was especially important because I needed a place with air conditioning to prevent heat allergy problems. I did need to hide in the cold during the hottest parts of the day but overall the allergy issues were less severe than I expected given the record outside temperatures. The temperature of my house back home is far cooler yet my allergy seemed to be worse in my house than at camp. My cousin and I came up with a theory: humidity plays just as much a factor as temperature. 

       With sleep improved and my heat allergy better than expected I started to wonder if I could potentially stay for the last week of camp. The head of staff said that'd be awesome and the camp director said he thinks it could work but that he needed to talk to someone on the board to confirm. I was given the impression that it was very likely doable and got very very excited. I started making plans to have someone else who was about to visit take my stuff from home up since I had only brought supplies for a few days. Then, alas, I received the bad news. I was told no it actually couldn't work because they didn't want to make an exception for me since I didn't fill out the application form before the summer started. Given all my issues I never imagined the possibility that I could stay at camp until things started improving when camp had already begun. In hindsight, I should have submitted the form anyway on the tiny chance things could work out. I started bargaining, saying I'd work for free and if they couldn't make sleeping arrangements I'd sleep in a nearby hotel for the week. They still said no, which really boggles the mind. A friend of mine who was also visiting went on a rant saying I'm a positive presence at camp who works hard and that turning me away is ridiculous. I felt legitimately depressed for a solid week after returning home, in that I was having trouble enjoying anything.

      At one point after arriving back home my ketamine pill bottle fell somewhere and I couldn't find it for a good 5 minutes. By the time I found it I was literally hyperventilating because I highly doubted they would replace the medications if the pills were lost. As young as I am with an invisible disability they'd probably assume I sold them on the street or abused them by taking more than I was supposed to. The worst thing in the world for me is being accused of something I didn't do, or basically being called a liar. What's the point of putting great effort into never lying if they still don't believe you? The reason I have such sensitivity in this is that in the 4 years before my diagnosis life was unbearable because of not being believed and so I received psychiatric treatment instead of physiological treatment. Being in that situation creates a singular horrible feeling and experiencing that again forces me to remember that awful time period. It's hard not to take it very seriously.  I found this old conversation relic from right before I was forcefully admitted to the psych ward after the intentional overdose. It's between myself and a friend. As you can see my cryptic response was understandably misunderstood. I had already decided that the pain would end one way or another, and as we now know, it didn't end. 

        In late July I went to a Blue Jays game with my brother. We really should have Ubered right to the entrance but I had no idea the walk from the subway to the stadium was so incredibly long. I'm talking 8 times more walking than I can really handle. To make matters worse it was also incredibly hot in the crowds, triggering allergy attacks. I was almost relieved when it started pouring rain because it cooled me off. With my legs I couldn't truly run through the rain and so got ridiculously drenched. The icing on the cake: the game was a shutout against us. The Jays scored 0 points. At the time I expected there to be a week or two of recovery from the ordeal but I honestly think I never really recovered. The ketamine acted as a neurological reset and I think subjecting myself to such high pain levels may have reversed that reset. My sleep got notably worse in the immediate aftermath of that trip and hasn't improved again. I almost wanted more ketamine infusions then and now, telling the doctor this time I'll be more careful not to repeat the mistake of walking too far. He unsurprisingly refused, even when I suggested we do a one day infusion instead of the full 5. The whole time my insomnia slowly continued worsening but the Jays Game seemed to have accelerated the process.
       We then began the process of getting insurance to accept our new allergy treatments called Xolair. They would entail monthly subcutaneous injections on both arms once a month. This all took months to set up, as you might expect our insurance company looked for every conceivable excuse to deny us the coverage. They set up half a dozen different hoops for me to jump through to get it to happen. My dad, a doctor, said that they do this because most people would simply give up and forget about coverage. My allergy was far too severe for that. If they somehow denied us we'd resort to paying it out of pocket. Eventually we got approved but the new semester had started and the allergy became extremely problematic. When I visited back home the house was too hot causing one of the worst rash attacks of all time. I was very sleep deprived and I'm pretty sure I yelled "If you don't lower the fucking temperature I'll just fucking kill myself!" This was after some time of me insisting it's simply to hot for me to cope even when staying in the basement in only boxers with a fan. When I'm in residence at Guelph it's tricky because in the winter all my suitemates agree that the heater being on makes it too hot and the heater being off makes it too cold so we're always going back and forth between the two and I often just open a winter window for relief. 

 

      I ended up taking 2 classes which is way better than the 1 I managed in the semester before starting ketamine. One was online while one was lecture. Unfortunately for me, the lecture hall was the hottest one I've ever been in. To my credit I didn't miss a single class the entire semester, except the last one to go to a doctor appointment in Toronto. Still, my classmates and professor were horrified at my allergy rash. Above is a recent picture of myself in the university cafeteria. I assure you, it's even more painful than it looks. In class I had to stifle grunts of pain. If you saw a dude who's entire upper body looked like that how will you react? Most others give me fearful glances as if they're worried I'm contagious. In class at least most heard me discussing the heat problem with the professor and so were fairly supportive. It made me very grateful I had such an angry rash to go with the pain because all those little relevant annoyances would otherwise be very hard to explain and justify. On many occasions it took all my willpower not to flee the class even after taking many preventative measures. The professor told me he'd fully understand if I chose to just get up and leave in the middle of class but I never did it.

       The seasons changing helped but I was still forced to take precautions. In my backpack I'd bring a change of clothes into shorts and tank-top as well as a mini quiet fan I specifically bought for such a purpose. Though the fan may have been relatively quiet it still certainly made noise, so I always apologized to the person I was sitting next to. You could still hear the professor perfectly clearly but it's still a bit annoying. When that still wasn't enough I'd open the door to cool the room, though usually eventually someone said it became too cold and closed it (which I was fine with, job was done). It very nearly reached the point where the professor was going to look into moving the entire class but by that point the cold late-fall weather had already begun. 

    Back to the injection treatments, I was naturally very excited to hopefully put the heat allergy issue behind me but I eventually learned that it takes 3-5 appointments for the effect to start working, meaning half a year more of waiting. The first 3 appointments (as of writing this I've done 2) require you to hang around the clinic for 3 hours afterwards to make sure you don't get an anaphylaxis response to the treatment. This was especially a concern for me since I've had anaphylaxis once before due to a wasp sting. So far that hasn't been a problem but after 2 injections I haven't received any benefits either. 

      I asked people in the EDS group if they've done these treatments and did get a very promising response, they said: "“I have been taking the shots once per month since December. Before the shots, I could not go out in the sun for more than 5 minutes without having a reaction and a rash pop up on any Exposed Skin. Now, I can go in the sun for as long as I want without any problems. It took four or five months before I started seeing the benefits of the shots, but my doctor had warned me about this. I know that the shots are working, because the one month that I missed the shot and then was exposed to the Sun, is the only time I have had a reaction to the sun this year. My allergist explained that it's not like normal allergy shots where you build up a long-term tolerance. Instead, you have to have the shot every month for it to continue to work.”

     I also found a study that confirmed what I always said about the benefit of cannabis THC, that it doesn't reduce the pain but does make it bother you less. "Findings: This systematic review and meta-analysis of 18 studies including 442 adults found that cannabinoid drugs were associated with modest increases in experimental pain threshold and tolerance, no reduction in the intensity of ongoing experimental pain, reduced perceived unpleasantness of painful stimuli, and no reduction of mechanical hyperalgesia." 

      As the insomnia worsened the picture above is what I'd look and feel like in the last few hours of wakefulness every night. I kept facing the problem of being overly exhausted and optimistically trying to go to sleep as early as I felt possible, causing me to take my pills too early. As I've said in the past, when this happens the pills wear off before I even fall asleep which entirely ruins any hope of productivity the next day because I'll wake up constantly throughout the night. The longer my potential wakefulness period is the harder it is to accurately predict the optimal moment to take pills. On the other hand, if I wait too long then I build up so much sleep debt so that even if I had a decent night I'd still feel awful the next day. 

    The window of opportunity is incredibly small because in a very short amount of time after starting to wonder if I'm sleepy enough to stop reading and go to bed I will start to experience micro-sleeps. Here's the definition if you haven't heard that term before: "Micro-sleep is a fleeting, uncontrollable brief episode of sleep which can last anywhere from a single fraction of a second up to 10 full seconds." I always read before bed and as I get sleepier reading gets harder which helps me gauge the timing of things such as when to take each batch of sleeping pills. Inevitably I get so tired that I start drifting off while barely even noticing because while the micro-sleep lasts up to 10 seconds, it feels like an instant. 

    Both micro-sleeps and napping seem to have a disproportionate effect on me. If I'm so overly sleepy I feel no choice but to take a 15 minute nap  it can completely eliminate all feelings of sleepiness for the next 18 hours (remember, sleepiness and fatigue are very different for me). The same goes for micro-sleeps, but to a lesser extent.  Just a few seconds of nodding off can ensure I won't be able to fall asleep for several more crucial hours. I've trained myself to immediately hurry into bed once I feel that micro-sleeps are about to occur. Taking the last of my medications ensures that I get actual sleep rather than just a micro-sleep once in bed. There have been times in my stupor and haste where I forget to take the very last batch immediately before hitting bed and those are the most frustrating because it means lost functioning that could have been prevented. This happens VERY rarely though.

      It was time for my next appointment with the ketamine doctor where I explained the deteriorating situation. He said we can go back on ketamine pills long term. My dad and I took note of how it seemed we had been deliberately misled. As you might remember I was furious when told without warning that I'd have to go off the pills because taking ketamine long term is unsafe. Now we were being told that's only true at the higher doses. Evidently they made it seem like we had no choice but to go off the pills because they wanted me to unknowingly give my best effort in tapering them off by making me feel like it was the only option to avoid brain damage. As a result, being allowed to go back on a low dose of pills was a bittersweet feeling. The prescription was originally for up to 3 pills a day as needed but I asked instead of taking 3 a day occasionally, could I take 1 at night everyday with a second pill in emergencies to help with insomnia and even out pain spikes. Unfortunately, going back on the pills made me realize their effects were close to insignificant compared to the actual infusions. Rather than generally reduce my overall pain, the pills just seemed to even out the fluctuating spikes. If my pain is 8/10 the pills do nothing. If the pain is 8.5/10 then it will get reduced back down to 8 or 8.25. 

      My sleep doctor on the other hand, who is a world-class expert that goes on talk shows, said I'm the most severe patient he's ever dealt with. He was the third doctor to tell me that. At that time he thought I was doing pretty well all things considered since I was handling 2 courses again with high grades but I had my doubts with that assertion. The reason I seemed to be doing so well is that I only had one long lecture per week instead of over 3 small lectures on different days in a week like in the past. The other course was online which meant I only needed to be up at a specific time once or twice a week and the class started at 7 pm (lecture and doctor appointments). Due to this I could sleep in as late as I needed to function for the vast majority of the week and so it didn't matter that I was nocturnal literally 50% of the time. It all would have fallen apart quickly if my second course wasn't online. 

     He was a bit dismissive when I explained this saying I should be happy I was managing school at all in the first place given the degree of my issues. Imagine the frustration of giving up your social life and sanity to work constantly to complete just 2 courses (when almost all your friends have already graduated) as you race against the clock of your worsening pain and insomnia. By the end of the semester I was awake for more than 24-27 hours everyday and only in the first chunk of that did I have enough energy to be productive, not to mention sleeping entire days away. In the first 40 days of the semester I played perhaps a total of 9 hours of video games with my cousin when I was too tired to work. 

      As my sleep worsened and the periods of being overly exhausted grew lengthier I slowly slipped back into playing a lot of games, and watching TV when I became too tired for even that. As it took longer to fall asleep I'd read for longer periods at night again. The entire semester I didn't workout a single second because if I felt well enough for it I had to spend every possible second working. The online course's required reading material amount was alone triple anything that can be considered difficult but reasonable. It shows all the things I'm willing to give up to try to catch up with my peers in the month and a half where my functioning was relatively high. At the beginning of the semester I'd work for up to 15 hours, game for 0 hours, reddit/facebook for a couple hours, read for an hour, then sleep for 11 hours. Towards the end of the semester I'd work for 12 hours, game for 9 hours, reddit/facebook for 2 hours, read for 2-4 hours, then sleep for up to 21 hours.  Quite the difference in a few month's time, no? In the second situation, in total do I work as many hours as others? No, but since I spend every iota of energy I have on working I'd argue I work just as hard if not harder. Most people start with 10/10 energy or maybe as low as 8/10. I start with 4/10 energy and spend it getting work done until I hit 0 and collapse.  Hence why my social life disappeared. Having such a crazy schedule really warps your sense of time and since I'm awake for over twice as long as a normal person it's hard to remember when you last showered, brushed your teeth, what you've eaten today, etc. Here's a fitbit report:

 

    Though I couldn't exercise a single second the entire semester (I don't think a few minutes of biking across campus really counts) I was doing quite well in that department over the summer. Most people with severe EDS can't fully workout at all because of dislocations but that's one area where I seem somewhat lucky. Sure I can't do massive benches or huge dumbbells to easily bulk up because of joint instability but sticking to many sets of 12 reps of medium weights seems to work quite well. Regular push ups put too much stress on my hands/wrists so I use push up bars. These make the strain harder on the muscles but easier on the hands because you have to go farther down to touch nose to floor but the bars help you grip easily. Dead-lifting is too dangerous because something can give out and I have no spotter. Pretty much every sport I can think of is out of the question (I used to love playing sports). I also maintain a lot of discipline in eating very healthy though it may not always appear that way. When I'm at home it's quite easy but when I'm going out with friends or family I treat myself. Watching what I eat was especially important during periods where actually exercising isn't possible.

      I obviously can't run or even spend a significant length of time on my feet so for cardio I swim in the summer and use an ergometer hand spinning machine otherwise. You can set the resistance and spin it with your hands, completely eliminating the need of legs for cardio. I use 25 pound dumbbells and stop when I feel any instability within the lifting. My biggest problem is finding ways to workout abs. I can't do sit ups because it destroys my back and makes me dizzy. On not as bad leg days I do planking but although most of the work is on the abs, straightening my legs out like that hurts a lot and I can pull that off less and less often. To balance out the sleep deprived selfie here's the opposite. Nothing special in general but not too shabby for someone with chronic illness. After 4 months of zero exercise it will take some time to work my way back so I'll do my best over winter break because it's going to be another workout drought after surgery. 

     Out of curiosity I wondered how my functioning truly compared to others with EDS. Given that even among other Zebras (EDSers) mine is considered extremely severe, it all has to be taken with a grain of salt. Also remember that probably 95% of the people in the EDS group are females. 256 who responded were completely unable to function/work/study. 249 work full time. 62 are housewives. 59 work/study part time like me. The main reason i think I can function at all despite my severity is that thanks to being a male I dislocate a lot less than some others with EDS. I subluxate very constantly which does suck but have only dislocated some several times overall. If getting out the house puts you at high risk of dislocation then of course your functioning will be heavily impacted. It's one way for me to count my blessings. I dislocate more than most but not to the point where people need to treat me as overly fragile. Just don't tackle me and we should be fine.