Always Skip Leg Day

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

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

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

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

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

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

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

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

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