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.
