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. 

The Aftermath of Ketamine

    Before I left the hospital following the infusions they set up an appointment with their pain psychologist to take place ASAP. I thought this meant I’d be following up with the lady I had seen to mentally clear me before the infusions took place. It made sense that they’d want to check up on me to make sure the mind-bending effects of the ketamine hadn’t driven me crazy. When I arrived I met an entirely new person who they also referred to as a “pain psychologist,” but the reality was quite different. She explained that she actually doesn’t deal with mental health at all. Her purpose is to advise me in figuring out how to make the most out of functioning in my new and improved situation. So, in actuality, she’s more like a pain counselor. I see the merit in this profession but did not at all view it as something I could really make use of. After 9 years of trying to cope with constant pain I’ve figured out my own limits with constant optimization improvements. I don’t need a professional’s help in this regard, maybe if I could have seen someone similar in the year or two after my pain started it could have been helpful, but no longer.

                I explained all of this to her in the span of about 5 minutes. She then told me that in that case we don’t really have much to discuss and so I went on my way. All of this pissed me off quite a bit. Keep in mind this is at Toronto Western Hospital, it takes up an entire day for me to get there from my house and back again. Luckily my mom was heading to work at Queen’s Park so I just got a ride with her. I would have been even angrier if I expended my leg pain threshold on navigating the subway for no good reason. Why didn’t they just call me and ask if I was interested in pain counselling so I didn’t have to go all the way downtown to have a pointless 5 minute conversation? Plus, they really should call her a pain counselor, not a pain psychologist. I’ve never heard of a psychologist with zero focus on mental health.

      The counselor was present when I next went to the hospital to see the ketamine doctor again as follow-up to the infusions. My primary doctor, the sleep specialist that had managed my prescriptions for many years, was extremely excited to hear I finally was able to reduce my dosages by half across the board. He shared my concerns that I would relapse if the ketamine was stopped and so messaged the ketamine doctor to help advocate for a refill for the long term. My dad cancelled work that afternoon so he could come with me. We discussed strategy because in our minds the main goal was to convince the doctor to extend the ketamine pill prescription to the long term.

               We were unsuccessful, but for good reason. The doctor explained that there have been studies on rats who were given ketamine long term. They ended up developing cognitive and memory issues, and this hasn’t yet been repeated with humans. What we found out was that he expects me to retain much of the ketamine benefits, even after stopping the pills. Part of the reason for this is that the ketamine was meant to reset my overcharged nervous system. For most people the infusions are enough and for others the pills are enough but there are very few instances of neither working in the long term. This was good to hear but I was still nervous that the doctor was underestimating the severity of my medication absorption issues since he had only met me once before and was not an EDS specialist.

             For a long time my leg pain would get worse when I needed to go to the bathroom which made me suspect there was compression on a sacral nerve. That problem disappeared with the ketamine which is best at treating neurological pain. I do think my nerve issues were reset with the infusions but EDS mainly causes issues with your muscles and joints. This means that over time my legs will keep re-injuring themselves, which will eventually again overcharge my nerves. This why my friends with EDS are having the exact same ketamine experiences as I did. The pain is gone during the infusions but quickly comes back because of our chronically damaged bodies.

    The counselor sat in on the appointment with the ketamine doctor so I again explained to her that I’ve worked with psychologists before and they’d play the soothing sounds of waves on a beach and told me to imagine myself on that beach. I would do so but it didn’t help in any way because I was just on a beach in horrible pain. The counselor then suggested trying hypnosis. I hadn’t tried that before so was willing to give it a shot while at the same time throwing the counselor/doctor a bone. We actually did a session then and there. She played soothing sounds while talking to me in that stereotypical monotone hypnosis voice. It did make me pretty relaxed but had no effect on my pain. She gave me a YouTube video so I could try it myself before bed that night and I did so.

            This time it went badly, first of all my ongoing issue of involuntary eye twitching (when they are closed) was an impediment since it was particularly worse that initial afternoon. The other issue was that the whole point of this was to help me sleep at night. When I’m finally getting exhausted enough to sleep through the pain I need constant distraction from how shitty I feel; so I typically read a book while vaping. When I can’t read anymore I try to go to bed. When trying hypnosis with my eyes heavily twitching all I can focus on is that and the pain made worse from fatigue. It’s quite counterproductive when you’re attempting to sleep. I promised the doctor I’d try a couple more sessions on the condition we did it online instead of in-person at the downtown hospital. I’ll do that and do all I can to make it work but have not had a great start.

The ketamine doctor wanted me to start stopping the ketamine pills one month after I last saw him. I decided to stop the pills now because if everything starts turning to shit again I wanted to know that ASAP so we could start dealing with it before the next university semester starts in September. As of writing this I have been taking the ketamine pills on and off for weeks. It's hard to gauge their effectiveness but things didn’t immediately fully relapse with the reduced dose. Unfortunately they certainly weren’t as good as those first few days after getting home from the infusions. (I think the infusions did have more of an effect than I realized, which continues to wear off.) Instead of my sleep problems being 10/10 horrible like a couple of months ago they’re now just 9/10. The ridiculous sleep pattern issues are still present. Every time I let myself sleep-in to function my sleep clock still gets immediately destroyed, just to a lesser extent.

On a Sunday I had a driving lesson so I slept in for 12 hours, going to bed at 11 pm and waking up at noon. Then on Monday, as a consequence of sleeping in, I couldn’t fall asleep until 6 am. This means my clock moved 7 hours later just from not setting an alarm for a single day. The next day it got even worse and I fell asleep at 9 am, forcing myself up at 3 pm to fix the clock in time for my appointment. 3 pm was still too late so the next night I only let myself get 4 hours of sleep, waking up at 2:30 am. This allowed me to get to the appointment but today I have another driving lesson so to make up the sleep debt I slept almost 13 and a half hours which means tomorrow the sleep cycle will be completely ruined yet again and will take days to re-fix.

This pattern just repeats over and over and it's going to make taking non-online courses at Guelph very difficult because to absorb the info in lectures I need to sleep-in while still waking up on time for the class. If I have at least one class every day of the week then weekends become my only opportunity for reset days. If I'm setting alarms every weekday to get to the lectures on time then I'll often be too tired to actually learn anything. My sleep doctor says we need to find an EDS pain specialist because there won't be any more improvement until the pain is truly helped long term. To that end, he thinks we should redouble our efforts to see the EDS/sleep/pain specialist in Washington DC. I’ve been on his wait-list for 3 years and he’s still not accepting new patients. He’s also quite expensive but if he has new ideas they’re without a doubt worth trying. I also need to find an EDS specialist who knows a lot about quetiapine so I can ask about what to do in a worst case scenario. We need to know if the effects of long-term ketamine are scarier than the effects of long term quetiapine overdose and sleep deprivation. We may need to look out of the country more. The UK is famous for its top of the line EDS specialists. If only travelling was easier for me…

I have no idea if it was related to ketamine in anyway but I did experience something new that’s very scary for first-timers: sleep paralysis. For myself and many other people this is often tied into nightmares. My medications prevent me from dreaming but maybe this occurred due to the lower dose… or maybe just the ketamine itself. I don’t think I was fully asleep by that point, it kind of reminded me of the sensation I got during the infusions where I was half asleep having strange nightmarish dreams. I think I was having a nightmare and somehow half waking up from it kept me paralyzed as if I was still sleeping.

 I only remembered the tail end of the dream. It was something about the government not wanting me to find out about a secret newly developed medication. Whenever I tried to think about the secret I’d hear an incredibly high pitched screech that made me think they had a device on me that screamed at and immobilized me whenever I disobeyed. I could only vainly try to shout for help until it passed and I fully woke up. I didn’t really understand what had happened and so was pretty terrified but now that I’ve heard about it from others I think I’ll be fine if it happens again. When it happens for the first time your mind naturally begins to wonder if the paralysis will every go away.

While all this was going on I got a message from Student Accessibility Services (SAS) at Guelph University, inviting me to come at the end of the summer to be on a panel to help incoming disabled students adjust to university life. I would be giving advice and answering any questions they may have. SAS have been a huge help to me so I’m very happy to return the favour. I messaged the friends I made from the chronic pain support group about it and both are interested in joining me on the panel. Worst case scenario, if I don’t sleep well enough to drive to Guelph I’ll be Skyping in to the event.

I have enough uncontrollable medical issues, but on occasion I unintentionally create more for myself. One example stemmed from my daily use of Q-tips for ear cleaning. Whenever I go for a week or two without doing these my ears get blocked and have to be annoyingly rinsed out. You pretty much need to be standing to effectively do that so I put extra effort into avoiding that situation.  I’ve done this for as long as I can remember with no issues, but I suppose it was only a matter of time until carelessness created problems. The only reason this became an issue now was actually my ketamine infusions. Showering with the IV block still in was difficult and so I didn’t bring Q-tips with me downtown. This meant I went quite awhile without cleaning my ears and, like I mentioned, both my ears got blocked.

 In my efforts to unblock them after I got home I pushed the cotton swab too far and it hit my eardrum. I suddenly couldn’t hear anything out of that ear, and it caused bursts of pain every few seconds. There was an extremely loud constant buzzing noise. I was very worried I had ruptured my eardrum. When that does happen immediate medical attention is important to prevent permanent hearing loss. My dad looked inside my ear and it was so blocked he couldn’t see the eardrum. Even after my parents helped me rinse the ears with dissolving oil and water syringes I couldn’t hear anything at all out of that ear but my dad did see the eardrum a bit and didn’t see obvious damage. We needed to be sure as well as fix my hearing so off to the doctor I went.

The first order of business was cleaning the ear. First the doctor tried scraping it out, which wasn’t very pleasant. Then he told me there’s still tons of wax stuck to my eardrum so he used a mini vacuum to get it out, which was even less pleasant. It felt like someone was scraping my eardrum with a knife over and over for quite a while. He said that he suspects my EDS made the pain worse than it otherwise would have been. He admitted this procedure was essentially torture but of course most find it worth it to regain your hearing. The important thing is that my eardrum was not permanently damaged. There was immediate relief once the gunk was removed. After that experience I tried to avoid using Q-tips and instead got a product called ClearCanal that the doctor recommended. It’s annoying to have to put the drops in in the shower, wait awhile, then spray expensive pressurized liquid into your ears just to keep them unblocked, but it’s worth it to avoid a repeat of this incident.

I had to see the EDS cardiologist in Hamilton again to do a Tilt Table Test. This was to find out more about what was causing my dizziness upon standing up. It confirmed that I don’t have POTS, (Postural Orthostatic Tachycardia Syndrome) but do have something extremely similar. My autonomic issues are relatively minor but I was told I’m still at risk for fainting and dizziness as part of EDS. To combat this he gave me some weird techniques to help with circulation when standing up. For example, when it got bad I was supposed to lock my hands together and pull my arms apart from one another. 

The test itself was pretty torturous. They strap your arms and legs to a table that they can control to put it on an angle to measure my dizziness in different positions. This was meant as a simulation for someone standing up from a lying position themselves. They monitor you for half an hour with the table in a resting incline and then bring it up almost 90 degrees with the floor, so that you’re basically standing. They then they monitor you for half an hour like that. Of course, with my leg pain, standing up for a few minutes with freedom of movement is hard enough. Doing it for half an hour while strapped down is excruciating. You might have noticed I often bend my knees while standing because it reduces the pain. Having your legs straight puts extra pressure on your joints. Since my legs were strapped down, bending my knees was impossible. Virtually all of the important results were gathered in 20 minutes of standing so we stopped the test 10 minutes early because of how bad the pain had gotten. By the end of it all I certainly wasn't smiling, but at least I was making great progress in getting all the doctor visits out of the way in time for another round at university! 

The End of the Infusions

Continued from previous Ketamine chapter: 

    After learning the lesson on the first day not to stuff myself with food I had to deal with a whole other issue: heartburn. This can become quite severe when you have such an empty stomach because it causes extra acid to be produced. It felt like my heart was being crushed so they did an ECG to make sure I wasn’t having a heart attack. It was clear so the focus switched to issues like acid reflux. They had me take some type of sodium drink, which tasted awful, but helped a lot with the chest pain. It tasted like a mixture of salt water, too-powerful sour candies, and wasabi. My heart rate and blood pressure both took a turn for the worse so they lowered the ketamine dose from 80 back to 60.

    The higher infusion dose of day 2 made the pain relief last slightly longer. Instead of the pain returning by the time I was able to stand up, this time I was able to walk around for a short time with almost no pain. It was a glorious half hour. Every time the pain would come back in an unusual way. First, my legs would get a massive tingly rush of feeling. Have you ever ever slept weirdly on your arm, cutting off circulation, and woke up with no feeling in it? It was kind of like the aftermath of that, just far worse. You get the tingling and rush of sensation as blood rushes back into the limb. Multiply the intensity of this by a factor of 10 and then you have what I experienced. Calling it overwhelming is an understatement. It was sort of like your whole legs falling asleep except it was 50 times more severe and lasted up to an hour. There was also a weird sensation of fluid running through my legs even though the infusion was over by that point. It was all extremely unpleasant and as it died down the chronic joint pain reemerged in its place. 

    The hunger was at its worst the day after I threw up. Like I said, after throwing up losing everything in my stomach the nausea was still awful so all I could manage eating was a piece of plain toast at 8 pm. This means I had to go 20 more hours without food, even though my stomach was already empty to begin with. As a result of this, after my discharge, I broke my record for most food eaten at once by a large degree. I had 3 meals worth of stuff in the span of an hour and food had never tasted better. At one point in the day after taking no pills at all I felt well enough to play a video game. I was actually having trouble deciding if I was manic or simply had most of my brain fog removed from no pills. In the game I kept trying to think too fast, because having a clear mind all of a sudden takes getting used to. I wasn’t taking the time to stop and truly think before implementing a decision. I later decided I wasn’t manic because I quickly got used to the swifter decision making and willfully slowed myself down to properly ponder any actions.

    At the original ketamine clinic I wasn’t sure if the nurses were having so much trouble getting my IV in because of my unstable EDS veins or because they were incompetent. Now I’m more confident that my elasticity is the main issue. All the nurses at all the hospitals describe the same thing while repeatedly poking me: that my veins keep rolling away from them. Never once has it taken them less than half a dozen tries to get it in. To counter this they decided that I should keep the IV block in between infusions. This essentially rendered me one handed. I was desperate to shower because the physical stress of the ketamine caused excessive sweating. My cousin helped me wrap up my bandaged hand within a plastic bag to avoid ruining it with wetness. Later on the IV got out of place and it was very painful. I suppose I should be grateful they had to remake the block only once rather than every day.

    After the last infusions I fell asleep for most of the long car ride while driving back home. Even so, the moment I reached home I immediately started getting ready for bed. I was so exhausted I couldn’t even stay awake long enougg to vape the medical marijuana. I took half my usual sleeping pill dosages as well and was able to sleep 11 hours. Before ketamine that would not have been possible without weed alone, let alone only half dosed sleeping pills. This all led to the next day being the best I’d felt any on any day ever since my pain started. With so much fewer meds the brain fog was nearly entirely gone. I filmed a video showing this off on Facebook and over the next few weeks everyone had told me I was like a completely new person. I had actually underestimated how much the years of constant brain fog were slowing me down. Such chronic sleep deprivation had made me often cranky and so I hoped things would stay different. I was filled with gratitude for the healthcare staff that looked after me so I suggested we make a donation to the hospital in their honour, and my parents agreed.

    The few times over the years that such a massive change takes place, it takes many months to adjust my habits for optimum functioning. With my full-blown insomnia things were unpleasant, but more predictable. It was only possible for me to fall asleep through the pain by waiting until I was so exhausted that my body didn’t have any choice in the matter. That’s why I’d be awake for so long all the time. Once I could fall asleep without being unbearably exhausted it became harder to figure out when to try going to bed. In the following weeks I kept trying to go to sleep too early. When I say early I mean early for me but still quite long for a healthy person. Instead of being awake for 33 hours I only needed to be awake for 19 maximum. I kept my pill dosages low to stave off brain fog but this gave me less control over figuring out what time is right to at least attempt falling asleep.

    I used to only be able to swim about once a week for half an hour but my new energy surge and minor pain dulling had allowed me to begin swimming multiple times per week for up to 2 hours, with occasional couple minute breaks. I wish I counted how many laps I did when my body finished recovering from the procedures, but it was around 100. I didn’t stop there because I was out of energy; I did it because my leg pain was rising. My parents told me to take things easy but I felt great so after an hour of rest I was able to also do my usual entire workout routine even after the 100 laps. I had never exercised so much in a day in my whole life, before and after the chronic pain began. I expected the body aches to be horrible the next day or two but oddly it was very minor.

    I was speaking faster, I was typing faster, I was thinking faster, I could exercise more, and I wasn’t making quick reckless decisions or lots of typos like during the first days of having no brain fog. In the following days I also had much better cognition, but these improvements became significantly less prominent. I believe this means the infusions did have some helpful effects, though it was almost impossible to tell because getting nearly no sleep for an entire week was slowing my mind down all by itself. My pain was a bit better too. I easily fell into the trap of overdoing things. While trying to fix a TV issue, I had to go up and down stairs repeatedly, which wasn’t difficult to manage at the time. The problem was that as the infusion’s benefits wore off it took days for my legs to recover from the sudden overuse. I believe that about a week after arriving home the infusion’s aid had unfortunately worn off.

   In the time before things wore off a bit, I was of course ecstatic at the new situation. Being awake for 33 hours in such pain on a daily basis had become literally unlivable. You lose all your ability to cope when you’re awake that long every night so I’d often be in tears while lying in bed awake. For every decent sleep I got I had 4 day of total life-hating awfulness. It seemed more and more likely I wouldn’t be able to manage university at all anymore. Since starting the ketamine I still have very bad days more often than good ones, but I haven’t had a single day that I would classify as unlivably terrible. Even when I set my alarm to get only 6 hours of sleep, I’m still usually able to drive myself to local doctor appointments. The only time tears have happened since getting home from the infusions were actual tears of joy when I finally accepted that this huge improvement appears to likely be permanent. Tears of joy were a first for me, and I’m sure my family is very happy too that for now it looked like I’d need to ask for rides way less.

   Before ketamine, if I got 6 hours of sleep there would be a 100% chance that I’d accidentally nap in the middle of the day, thereby completely ruining my sleep cycle and whatever plans I had made for the next few days. Still, when I get 6 hours it’s not like I can write an essay or hang out with friends but I can at least actually somewhat enjoy my temporary distractions. I would only use TV as a distraction when I had no energy to do anything else since it’s non-interactive. My TV watching is became almost non-existent, which is awesome. Life is still hard as fuck, but at least I have a fair chance at attempting to cope with it now. I thought that maybe things would continue to improve if the doctor agreed to raise my ketamine pill dose. Instead, we soon found out the exact opposite was going to happen.

   Something I was very proud of was my ability to convince the doctor of the merits of letting me try ketamine pills, despite the fact that my mind was cloudy and exhausted from the ketamine combined with the sleep deprivation. We agreed that since the ketamine helped my pain but didn’t last long, a prescription for taking 3 pills a day would be a better option so it stays within my system. I believe he may have told me my prescription was for 6 weeks, but there was a miscommunication. I’ve been told that phrase many times by many doctors and it had always meant that after a certain time period I needed to follow up with the doctor to renew the prescription. This time that was not the case.

   I only learned weeks later that the doctor had no intention in letting me use pills for the long term. It didn’t make sense to anyone! On top of that they were again suggesting that I retry CBT (Cognitive Behavioral Therapy.) These mental exercises can be very helpful in assisting people with depression or anxiety. You learn the basics like breathing techniques, thinking positively, making a routine, etc. The problem is I don’t have depression or anxiety and my routine has been optimized with years of experience. Have I ever felt the emotions of anxiety or extreme sadness? Of course, but I don’t get panic attacks and there’s always an extremely clear reason to explain the anxiety that is not related to emotion imbalances. The last time I got a true panic attack was in 2010 because I forced myself to go to school to write tests I knew I would fail because I had missed so many classes and was on morphine. I did fail most of those courses since my high school didn’t put much effort into being accommodating.

   At first my dad was pretty assertive in pushing me to try CBT again; after a long discussion I explained my reasoning on why not to do so. I was just as sure I was right when no one believed me about the source of my pain being a physical issue over a mental one before my EDS diagnosis. It’s not that hard to tell when your mood has always had a direct linear relationship with your pain and insomnia levels. CBT won’t help me because I’m never lying awake at night in bed due to anxiety. I’ve never had to cancel an upcoming action because I’m depressed about something or in a bad mood. I’m extremely strict with my sleep hygiene, no phones before bed yada yada. The only time my mental state has clearly interrupted sleep is when I would do something like get involved in a Facebook argument in the morning which lasts until nighttime where continuing to respond distracts me, but this is not a frequent occurrence. It’s because of this that CBT has nothing to offer me, and I’ve already tried it many times in the past to appease various doctors. It was insisted that I pay hundreds of dollars to sign up for an online CBT sleep program, and it was utterly useless. If there was even a single night I was lying in bed awake due a troubled mental state I’d have a different outlook. I tried it with an open mind but am now very against continuing to waste my time with that kind of thing. I’m not saying it’s an ineffective program, studies prove that it is helpful for many, but it’s ridiculous for me to be forced to keep trying it over and over.            

   Both my parents said they believed me, and we were able to convince the doctor that CBT isn’t a good idea at this point. I couldn’t believe that the doctor had the gall to both end my prescription while advocating for CBT. I was raising my voice when discussing this with family to blow off steam but my dad warned me that when we saw the doctor I need to remain calm and collected. Otherwise I’ll come off as a kid throwing a tantrum because he wants more ketamine pills. I assured him I can and will remain calm when it is needed. We both thought it was fine to vent with each other before seeing the doctor. I became furious over the prescription ending and needed answers ASAP so we emailed the doctor and nervously waited for an explanation.

    When the pursuit of trying ketamine first began I made posts in many online EDS groups to find out as much as I could about what to expect. Most knew very little, so I promised I’d come back with a report once I tried it for myself. These are just some of the amazing responses people wrote:

The Infusion Week Begins

    I knew the high-dosed ketamine infusions wouldn’t be a cakewalk, but they were even harder than I had expected. Only time will tell if the 5 days of incredible discomfort will have been worth it in the end. Waking up to get to a hospital at 7 am or earlier five days in a row wouldn’t be particularly pleasant for anyone. For someone like myself, with insomnia so severe I’d ranked it as a 10/10, it was literally almost impossible to do. The only reason I was able to pull it off was the unlimited support from my family and friends. I was permitted to stay at my aunt’s house, just 10 minutes away from the hospital. She and my cousins would take turns driving me to and from the hospital, which has rules saying you’re not allowed to leave for your own safety unless someone comes to collect you. It went beyond that, though. Everyone, including the nurses, did everything in their power to minimize my discomfort. I can’t overstate my gratitude!

    Remember that at this point my sleep issues were so awful that I was unable to sleep at all for 33 hour periods on a consistent basis even with the copious sedative dosages. Since the ketamine infusion’s pain reducing effects wore off completely within hours of leaving the hospital I had no relief from these problems. Without the huge doses I was taking I’d be unable to sleep for even longer than 33 hours. As you might imagine, it’s not something I was willing to test. One of the many problems with taking so many sleeping pills is that it’s physically impossible to wake up at a normal time without the resulting sedation making you fall back asleep 5 minutes later after forcing yourself out of bed. Such an occurrence has happened to me countless times. As a result of this there were multiple nights where the pain prevented me from getting sleepy until 5 am so I had no choice but to take 0 pills and pull all-nighters to make it to the hospital on time 2 hours later. Chalk up withdrawal to one of the many simultaneous obstacles I had to endure.

    Then there was the fasting. Pulling an all-nighter when you have chronic pain, connective tissue fatigue problems, and withdrawal is difficult enough. Now add in the fact that I wasn’t allowed to eat or drink anything past midnight for all 5 days. On the couple of nights where I did take pills the side effect of dryness was intolerable to the point where I couldn’t even talk, so I just sucked on some ice cubes. The infusions lasted until 2 pm, but my body needed a couple hours to recover so I couldn’t leave or eat until 4 pm. If I didn’t wait I am certain I would have immediately thrown up upon standing up. Some recovery days were easier than others, but every time I was very out of breath. I was panting like a dog for hours after getting home. On certain days I needed a wheelchair to get to the car; on others I barely needed my cane. On some days I was starving and wanted to eat immediately after the infusions, on others I needed to wait many hours to tolerate eating anything at all. My nausea was worst on the first day so I waited a long time before attempting to eat anything but apparently still didn’t wait long enough. I had a bowl of soup that took me literally 2 hours to finish. I quickly threw it all up along with most of my pills. Losing the pills wasn’t a big issue because I ended up with extra due to the no-pills all-nighters.

     On the first day of the infusions my sweat allergy was a problem. It’s a good thing my mom came with me that day, because the registration room’s high temperature made me break out in a full body rash within seconds of stepping inside. I left the room to wait in the slightly cooler hallway while my mom signed me in. Even this wasn’t enough to reduce the rash so I took my shirt off while I waited to be called in. I’m glad it was so early in the morning so that the hallways weren’t very busy. Only a few people saw me and some gave me strange looks but the stinging was way too painful for me to put my shirt back on. I insisted on removing layers from the usual multiple layered hospital gowns; I minimized the clothes wherever possible. The only not perfectly pleasant hospital staff I encountered throughout the week was the registration nurse, but I can hardly blame her. She was incredibly short-staffed that day, trying to do the job of 3 people by herself. Everyone else was incredibly kind at all times.

    In terms of nausea, the first day was the hardest. It was partly my own fault. The doctor had given me those instructions not to eat or drink past midnight and I followed them. What they didn’t tell me is that if I do eat at midnight it should only be a small amount. I had thought that it was advisable to eat as much as I could at midnight, so I wouldn’t be starving throughout the infusion or get heartburn. I learned through experience that this was not the case. The registration nurse for a moment considered cancelling the infusion altogether when I mentioned I had eaten a lot the previous night. At least I didn’t get any heartburn that day. As I said, I ended up vomiting that night after barely eating anything. After throwing up the soup I just had a plain piece of toast at 8 pm until the end of the next infusion. This meant I had to go without food for four hours longer than they instruct, which caused my hunger to be at its worst the second day. For other nights I figured it would be safer not to use my foul tasting cannabis oil medication.

    The first infusion started at a relatively low dose, 60 I believe. Even so, towards the end of it my pain was completely gone. During one of my more lucid moments I messaged various people to let them know the pain was gone, but also included my suspicion that the relief would begin dissipating immediately once the IV was out. That’s what happened during my previous less intense infusions. I knew I’d forget most of the experience and I enjoy having reminders that it’s possible for my pain to go away (even if just for an hour or two) so I had the nurse record me testing my pain free legs with a smile on my face. After having constant pain for so long it’s a surreal feeling to just use leg movement without having immediate pain feedback. The nurses were entertained watching me rotate my legs like I was riding a bicycle just to enjoy the sensation of movement not instantly giving pain feedback for once.

    I knew beforehand that hallucinating was a strong possibility and so steeled myself for it. Blessedly, I didn’t have complete hallucinations, like when you see and hear things that don’t exist at all. Rather, it was more like seeing a severely distorted reality. The white curtains around me turned into people dancing in white dress-skirts. Colours became more vivid and blended together into each other. Sounds were inconsistent and had a weird buzzing noise to them. I had never done shroom drugs before but I’ve heard stories from people who have and I think there are certain similarities to what I experienced. To my knowledge the main difference is ketamine is far more sedating rather than stimulating. It was too overwhelming for me to find it enjoyable, but at the same time I can see why some people use ketamine as a street drug with far lower doses. It makes you feel like your mind is suddenly open to new possibilities. After each infusion a specific doctor would come and ask me the exact same questions every day. “Did you hallucinate? Was it tolerable? Did you feel nauseous? Was it tolerable?” Etc. I said everything was tolerable because there was no way I wanted them to cancel the infusion or lower the dose which could interfere with the pain relief.

    One of the more unpleasant aspects of the infusion got really bad when they raised the dose to 80. I’m referring to the near-constant blend of shivering and shaking. The ketamine infused fluids rushing through my body made me feel like I was freezing. Everyday once they reached a stable dose I would begin shaking uncontrollably. No amount of heated blankets could effectively counter it. As you might imagine shaking violently for over 6 hours straight is utterly exhausting. Most of the time, by the end of the infusions, I could barely move from fatigue. On the better days I heavily relied on a cane and human support, on the worst ones I could barely plop myself into a wheelchair. People with EDS have big energy problems to begin with since my body needs to work harder to stabilize itself, and this was a whole other level.

    The ketamine itself also caused extreme fatigue throughout the infusions. Standing up was completely impossible to the point that I never even attempted it or was expected to. I was given a cardboard urinal to pee in and much of the time I could barely lift myself up enough to use it. Scrounging up the energy to manage it took every bit of strength I possessed. Just lifting my upper body up with my arms was so taxing it made me feel like I had run a marathon. Since the infusions just suck the energy right out of you, they have to roll you onto your side after to make sure you didn’t accidentally piss yourself at all. The nurses put extra effort into helping me keep my dignity throughout the ordeal. I stopped caring about physical modesty a long time ago anyway. My heartrate was rising which did worry the staff a bit along with the heartburn issues. It was 117/115, which is high, but nothing dangerous yet. They were concerned because they were going to be raising the dose the next day. I can’t blame them for deciding not to.

    Aside from family, I had a couple of friends come down to visit me. The first one came early on in the infusion so I was mostly lucid enough to have some form of conversation. She kindly set up some audiobook/podcast stuff on my phone for me to listen to after she left but my mind eventually became too muddled to make use of it. My other friend came with a book I had lent to him. I was really excited for him to read it so he read it aloud to me by my bedside, which I very much enjoyed, especially after I lost much of the lucidity. In my drugged state I was shouting out phrases I remembered from the book but I was the only patient in that hospital room that day so the staff were just glad I had something cool to focus on other than my obvious discomfort.       

    As I was waiting for the infusion preparation the next day I was reading a different book from the same series which actually ended up becoming a coping mechanism. It was after an all-nighter so I was totally exhausted and quickly fell partially asleep during the infusion. For many years now I haven’t dreamt at all as a side effect from my medications. The ketamine led to a weird mixture of actual dreams and daydreams that were being influenced by the goings-on around me. Since I hadn’t taken any meds the night before I did dream during the infusion and it was, of course, a nightmare. The books take place in the year 40 000 where there are demon-like creatures trying to corrupt humanity with various temptations. The humans are led by a psychic emperor who is trying to prevent this. Since I was partially hallucinating and shaking uncontrollably (I kept drifting in and out of sleep) I dreamed I was the emperor trying to fend off psychic attacks from the demons. It was hella nerdy, but it was effective in helping me coat with the craziness I was seeing, hearing, and feeling.