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.
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.
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