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.
