Truths and Trances

   I waited for months to hear from the ketamine clinic after my neurologist said he had referred me. We all know how slow Canadian healthcare can be, so when months went by without me hearing anything I kept waiting patiently. Three or four months later I decided to take matters into my own hands. I was never told the name of the clinic so I spent a few hours online tracking down the contact information of likely suspects. Eventually I got a concrete name and I found out why I had never heard from them. Apparently they did receive my referral from my doctor, but they were never given my phone number so they couldn’t call me to book an appointment. I was obviously frustrated but they said they’d book one then and there so I tried to be diplomatic. It was hard to discover I had wasted months waiting for no good reason. If the health care workers didn’t mess up I would have been able to try ketamine before the 2017 school year began. I have to wonder why they didn’t just call my doctor’s office to ask for my number? The first 3 times I called them they put me on hold for 45 minutes and then dropped the call. It took hours of telephone tag to get in touch with them as a patient instead of a doctor but if I had done nothing I would have been waiting essentially indefinitely. The unfortunate reality of our struggling healthcare system is that patients sometimes must take matters into their own hands and be proactive.


    Weeks later the long awaited appointment date had arrived. The first thing I noticed is that I was the youngest person there by many decades. I'd peg 85% of the patients as over the age of 70. A funny truth I noticed is the harder you work to be healthy the more random people hate you for it. I look healthy because I work out whenever I can through the pain. It takes discipline not to get addicted to some of these long term medications like codeine. When you have an invisible illness the more successful you are the more hate you get. Society wants to see you suffer before they give their goodwill to help you. One of the many old guys in the room was glaring at me most of the time during the infusion. I got the impression he thought I was just there to get high or something. I was the only youth there and I didn't bring my cane so I looked to be walking normally for the most part. It's another funny truth that random people assume I'm a faker at the doctor or on the subway or whatever because I don't have my cane which then encourages me to bring my cane with even if I happen to be having a good day. It's quite the self-fulfilling prophecy. I also thought it was interestingly strange that it's mandatory for someone to come with to the clinic to drive you home and take care of you yet they make family wait in the waiting room rather than come into the infusion room.


    It was time for the IV to go in and even though the nurse admitted I have good big veins they had a lot of trouble getting it in. They had to try half a dozen times. They apologized but I matter-of-factly replied that the repeated needles are completely insignificant compared to my constant leg pain. They were half impressed and half sympathetic, they rubbed my head in a friendly matter and then the lidocane-ketamine infusion began. I had already tried lidocane infusions back in 2010ish but they didn't help at all. It's the ketamine that I'm betting on. I was warned that it can cause hallucinations. Since we were starting on a very low dose I guessed that it wouldn't have a significant effect, good or bad. I was wrong. The first thing I noticed was that I got double vision. There was a slight high feeling so I could see why ketamine is sometimes used recreationally(illegally.) It wasn't hugely different than medical marijuana. It puts you in a kind of trance where you realize every few minutes that you keep daydreaming. The most obvious effect was sedation more so than pain relief. When I got home I tried to stay awake but fell asleep for 3 hours in the middle of the day. I'd say the pain went from 8 to a 7 out of 10 but it didn't last long at all. It was far more powerful than the other medications I've tried. They noted I had a heart rate of 120. Overall it was a very promising start. The next infusion is in December. I had heard from the EDS Facebook group that there is ketamine in pill and nasal spray forms. If I could take those before bed the potential for helping me sleep is huge. They promised to look into those forms if the next infusion of a higher dose goes well.


    My memoir which is mostly comprised of these blogs posts is done. I've read 4 other similar memoirs so I can compare them to mine when sitting down with a publisher. I will be able to point at what made each successful and how my book incorporates all of those different strengths into one product. The next step is working with the professional writer who is helping me to create a high quality pitch. I was going to read a fifth memoir called Prozac Nation but by the end of the first chapter I found the author too insufferable to abide. Basically they were mentally ill and had pills that were very effective in managing the symptoms. She refused to take these pills just because she didn't like the idea of taking them. As someone who's life would be vastly improved if my pills actually worked and had a normal effect on me it's hard to feel empathy for someone who throws such a gift away. I don't want to read about someone's life getting destroyed simply because they don't like taking the medication that helps. Each of the other memoirs had something to offer. One called My Imaginary Illness had a story almost identical to mine but the writing style couldn't be more different. She has zero humor in her writing and her book is aimed toward health care profesionnals to show them the perils of doctoral arrogance. Another called Drunk Mom was extremely open and honest even when it made the author look like a horrible parent. One called The Boy In The Moon had a research element and was written by the parent instead of the patient. The last one was called Limbo and is well written but it ended with the author giving up her career dreams as a concert pianist and resigning herself to life in a wheelchair. I have recently come to the realization that my pain has been gradually getting worse over the years and so it wasn't a very uplifting ending. The lesson it should teach me is to accept reality and not hate yourself for it but I guess I need more time to get there because I am often told I'm too hard on myself. Before I actually began writing the pitch another more pressing opportunity presented itself. I was invited to be a speaker at a Ted Talk X event at York University!

Lessons Learned

   Throughout this entire 8 years (and counting) medical ordeal there has been pointless suffering and there has been constructive suffering. The random excruciating and unpredictable pain spikes would fall under the pointless category. The only lessons they taught me is to go to the damn hospital if you're having a breakdown purely from agonizing pain. To do otherwise is needlessly prolonging the pointless. Such experiences scar you forever. It makes everything worse, amplifying the feelings of "why me" and pushing you to get bitter towards the universe that lets these bad things happen to you. Then there's the constant dreading of the next inevitable pain spike. What if the pain spikes one day but decides not to go back down? When you go above 9/10 on the pain scale it takes mental strength to acknowledge there are literal unbearable levels of pain out there. It's not a very worthwhile lesson to learn.

   On the other end of the spectrum are bad experiences that serve some kind of purpose, intentionally or unintentionally. Take my accidental cannabis oil overdose for example; I can guarantee something like that will never happen again. One must never allow uncertainty when it comes to taking your medications. That doesn't just apply for something like measuring how much oil to take. Whenever you start a new medication you should be your own best advocate. Look up the medication to recognize the signs of side effects and drug interactions. My self-research is how I discovered I was experiencing the life threatening interaction of serotonin syndrome. Not once, but twice. I've prevented many more such incidents by looking up potential drug interactions myself. Failing to do so is especially problematic if you happen to have copious amounts of doctors like me. They are not always in communication to coordinate their actions and so are often unaware of what other treatments are being offered simultaneously. "Too many cooks in the kitchen," as they say.

   Perhaps the most important thing to take from this story is that honesty truly is the best policy. Before my diagnosis when we were running in circles from doctor to doctor like headless chickens I was often simply not believed whether because I was accused of being mistaken in my feelings or even outright lying. For this whole staying alive thing to work out I absolutely must be believed. This is a big part of why I simply don't lie (unless as part of something like a surprise party for example.) If people recognize I am doing my best to cope at all times they won't demand more than I can give; the past has demonstrated where the alternative can lead. The only time I can remember lying about anything related to my health was when I was in the psych ward and was asked if I was still suicidal. I said no because if lying was what it took to get out of that hellhole and then finally succeed in ending my life then I was willing to do it.

   Another lesson I've learned is to reign in impulsiveness. I am no longer suicidal but I am not 100% confident that it will stay that way forever. What if my worst fear comes true? A pain spike that starts and never stops. My second last resort is now seeking amputation. If my pain truly is caused by micro-tears in my joint cells then cutting my legs off might end the pain. All the way back in 2010 three years before my diagnosis I remember having a conversation with my cousin where I mentioned I'd rather be in a wheelchair without the pain than walking with the pain. He didn't think it a fair thing to say at the time because it was only me who truly understood the extent of the pain I was in. It's also impulsive for someone with my relatively fragile body to undertake reckless actions just to feel a bit more normal again. Going all out for that mattress game at camp was idiotic and completely not worth collapsing and feeling like my heart was going to burst.  The cliche lesson is to listen to your body, the risk vs reward is not worth it.

      This memoir is over yet my story continues, hopefully for many more years. I started writing this as a blog in 2011 for a few close friends and family so they could understand why I'm missing class or family gatherings. Now there are 54 people in the Facebook group and the blogging website has thousands of views. I hope this passes on the lessons I have learned so that whoever decides to read this doesn't have to learn them the hard way like I did. For the fellow chronically ill out there, I hope this helps you recognize that there's always hope. When it comes to those who are unhealthy the future is friendly. Scientists are actively working on cures even for conditions like EDS. Medications are improving every year and I heard a pill as strong as codeine but without the side effects is currently showing promise. The new EDS clinic will begin playing a vital role in future research. The lesson there is to always look for opportunities big or small to improve your lot in life as well as those suffering alongside you. My mother becoming a Member of Provincial Parliament and reading our EDS statement is a perfect example. Who knows, maybe in another 8 years I'll publish another one of these. After all, the learning of lessons never ends.

A Doctor's Trust

     A little while ago I had to see a different masseuse than the regular one I've been going to for many years. I told him what I tell to every masseuse, use as much pressure as possible. My muscles are so paradoxically tight on a constant basis that only extreme pressure can alleviate the knots in any way. I've found that most masseuses simply don't have enough arm strength to meet my needs. The therapeutic massages can be very painful, especially with the hip flexor muscles. That's a problem for new therapists because they're afraid if they hurt me too much I won't come back. On top of that I think I'm going to stop mentioning I have EDS because then they become terrified that they'll dislocate one of my joints. He told me if the first appointment goes well he'll use more pressure next time. I didn't mention the fact that I would never be seeing him again since my regular helper was available once more. He told me that most people can't handle a deep tissue massage let alone one with maximum pressure. I was annoyed because I thought I had just finished explaining I wasn't like most people, my pain tolerance is off the charts by now. I'm sick of saying, "I know I look healthy but..." They often think I'm exaggerating. With my regular massages I can't help grunting pretty much every few seconds and when I saw this temporary guy I didn't grunt a single time. It's hard to find strong masseuses these days.

     I'm happy to report that the sleep specialist I've been seeing for a few years finally fully trusts me now. My old sleep doctor ran out of ideas for solutions and so referred me to the new one. During my initial visits things didn't go very well. In large part due to certain family members misrepresenting my situation the doctor got a negative first impression of me. When he was falsely told my main issue is sleep hygiene he believed it. Over time I proved the truth of my words, that medications simply don't work properly on me. As he realized this his perspective changed and he gave me more freedom in managing my medications. This led to an improvement in functioning and he became happy with my progress. When I last saw him I told him about my excruciating pain spike that I have talked about in recent chapters, showing him the picture of me in agony. He told me to hang in there which I really appreciated. He himself has severe chronic spinal pain and so I think him seeing the picture was a bit like looking in the mirror with his own past experiences. During that visit he gave me many prescriptions to try out different combinations of medications in my own way when the time is right. He now agrees that maintaining my functioning is the most important thing. He doesn't like how much quetiapine I take, and neither do I, but we both believe that if taking copious amounts of quetiapine is what it takes to get me to function then it's worth it. The EDS clinic told me they know several patients with similar medication absorption issues as me but none are anywhere close to as extreme as me. We're all becoming a bit less worried because everyday it seems more than likely my body is just not absorbing most of the pills I take.

    A couple of months earlier I had been working with the sleep doctor to try to lower my quetiapine dosage for the umpteenth time. As always I was able to take less pills, I was able to wake up earlier, but at the cost of my functioning. I put up with this for a month before we gave up again. I think what made a huge difference in perception is that I was utterly exhausted at that earlier appointment with the lower dosages and full of energy at the next appointment when I was allowed to take as many pills as I needed. I was speaking fast, smiling, and telling tales of all the cool stuff I'd been up to since my functioning had returned. This showed him my potential. His main goal is now to help me reach that potential rather than always pushing the usual things that won't work because of my unique situation. Progress!

     While I was at camp I found it interesting to note the different ways people notice my health changes. Whenever I had a crappy sleep I would get asked by half the camp what's wrong. At home I have way more crappy sleeps than at camp because I can get away with losing functioning while working on taking less pills so the constant overdosing at camp made me have more good days than usual. Most people at the camp don't realize how much these things are apart of my life, they don't know what I'm going through when I'm locked in my room back home. This means them seeing my exhaustion is a rarity and so they assume it's a seldom problem for me. I used a bike to get everywhere at camp this summer, I didn't use my cane a single time. Biking is easy on the joints so biking without a cane is still way less painful than walking with a cane. The pain is still awful though and so when I limp people notice it. It's out of the ordinary for someone constantly on a bike to be limping and so people get confused. I am often limping to some extent on bad pain days, though the style of the limping changes day to day just like my pain does. Sharp pains that come and go are the most common causes of limping. It definitely seems that most people at camp assume I'm far healthier than I am because of the reasons mentioned above. I don't really mind that much as long as people don't make a fuss when I need to rest for a day.

Summer Lovin', Had Me a Blast

   In terms of this crazy summer  the car accident was just getting things started. At camp there is a game that we play once a year called the Mattress Game. Usually there are 2 teams that send members to grab a mattress laid out in the middle of a field. Whoever gets the mattress to their team's side of the field wins that round. This year for whatever reason there were 4 teams instead of 2. This meant that anyone actually winning was far more difficult. Half of the time the round ended in a draw after a timer of a couple minutes expired. Since the mattress is being pulled in 4 directions rather than 2 it took far more strength to win. I suppose I was pretty naive about physical exertion, especially when it came to me specifically. I didn't think there was anything dangerous about full out exertion as long as it's for a short period of time. I thought that 2 minutes is short enough. Trouble was, I was going up against 3 people twice my size. I weighed only 124 pounds, I would not be surprised if they were over 200. It ended in a draw, though when the timer ended it was closest to my side of the field. Was it worth it? Not even remotely. I immediately collapsed and could not stand back up for 10 minutes. It felt like my heart was going to burst. Who knows, maybe it was actually close to that. When you have EDS that kind of thing is always a possibility albeit usually a rare one, unless you have vascular type (which I don't.) As soon as I could I stumbled into the nurse's office. The air conditioning was blessed. I fell onto the couch and witnesses who saw me lying there said I looked like death, worse than they'd ever seen me. The nurse gave me some gross orangey tasting liquid to drink. I had a lot of trouble breathing and was wheezing with a sore throat. We think I had Exercise-Induced Bronchoconstriction, a form of asthma. The doctors in my family said my body can absolutely not handle this and to never do it again. It was an hour before I could get back up again and it took a week for my body to fully recover from the ordeal. The moral of the story is this: sometimes trying your best is a bad idea. If my life was on the line I don't think I could have done much better except maybe from the adrenaline boost. One things for certain: I'm never doing that again and not playing that game unless they switch it back to 2 teams.

   But wait, there's more! Out of the blue my stomach starting aching. "Well, Mitch," you might say, "I get stomach aches all the time!" I'm sure ya do friend, but the problem is it got worse, and worse, and worse... What did I do? I moaned and groaned on my bed thrashing about for hours on end. I should have gotten help as soon as I was bed-ridden, but my experiences have caused more than physical damage. Every time some acute problem comes up we end up finding out what's wrong and by extension find out nothing can be done and so I would just have to wait it out. It's happened countless times; I thought this was just another instance of this. The main problem was I simply couldn't go to the bathroom. Imagine needing to go more than you ever had in your life and simply not being able to. It was the worst stomach pain of my life except for maybe Serotonin Syndrome. SS made me feel sicker but I think this was more painful. Unlike SS I was constantly vomiting my stomach contents since they were stuck. To make matters worse whenever I need to go to the bathroom my leg pain gets worse, presumably from compression on the sacral nerve. Eventually the discomfort grew so bad I felt I had no choice but to go to the ER. The camp director drove me to the hospital. The pain kept growing the whole time I was sitting in the waiting room. Eventually I'm told they're going to do a scan soon. Fortunately or unfortunately (depending on how you look at it) I was able to go to the bathroom twice 10 minutes before the scan and it was an awful experience. The next part is even crazier. The scan showed that there was an obstruction and when I asked if EDS related gastroperesis could be the cause they said yes and that taking codeine nightly was also likely a large factor. Gastropersis means the nerves that push food through your stomach aren't working and so things get stuck. Since the scan itself was pretty bad the doctor agreed my situation must have been ridiculously bad before I was able to go to the bathroom. My sister stuck with me through the mess, playing a harry potter audio-book for me to listen to. She covered me in newly warmed blankets because the cold IV fluids passing through me were making me shiver constantly. I was prescribed medication to prevent it from happening again but I hated having to add anything to an already overflowing cocktail. 

    Did you think that was everything insane that went down that summer? Nope. On the last night of camp I went to take my usual nightly cannabis oil like I do every night to help me sleep. I have a measuring syringe that lets me squirt the exact amount I need into my mouth, 0.8 ml. Trouble was, the bottle was almost empty; meaning I couldn't get the syringe far enough to get the last of the oil. I had already taken my other sleeping pills and so wasn't thinking particularly clearly. I decided that since I can't get at the oil there must be very little left so I'll just drink the last bit straight from the bottle. What I should have done was pour the oil left into a fuller bottle. Honestly I probably ingested 10 times the oil I was supposed to, accidentally. I fell asleep pretty quickly (duh) and thought all was fine. Then at around 6:30 am  outside I woke up feeling beyond wasted. I couldn't stand up, I could hardly move, and I couldn't shout. I literally felt like I was dying. Imagine the slow awkward movements of a sloth and then you'll have a clear picture of what I was doing. I knew something was very wrong and so I fell out of bed and started trying to crawl towards my roommate on the other side of the room. When I got to his bed I tried banging on it, saying his name over and over. I was only able to use such little force that it took some time for him to wake up. When he did wake up he saw my lying on the floor and knew I was fucked up. With my last bit of energy I told him to get help and then passed out. I remember nothing beyond that, everything else had to be told to me after the fact.

     The camp director came again with my sister and quickly packed up some essentials like my pills and drove me to the nearest hospital. They told me I was conscious but completely unresponsive during this time. I was completely disconnected from reality and before I passed out it felt like I was going to die. I woke up what I think was hours later at the emergency room. It was just my luck that I woke up right before they decided to transfer me to a different hospital. They couldn't figure out what was going on and so felt anxious about keeping me there. It was a very uncomfortable ambulance ride. I was at the same time extremely nauseous while incredibly hungry. I hadn't eaten anything in a while since I was completely incoherent. I asked how long the car ride would be and was miserable when they said 50 minutes. I was brought to the intensive care unit and was given many IVs while they tried to figure out what happened. I had to stay overnight and was only allowed to take a few of my pills so I woke up at 7 am exhausted. A couple of hours after waking up and being able to speak I had finally remembered what actually happened the night before. I made the connection of the oil with the fainting and we were all quite relieved to find out this would be temporary. My stomach got very messed up again as the oil made its way out of my system. My sister stayed by me for over 12 hours, most of which I was asleep for. Almost all of my stuff was still at camp so my mom had to drive many hours to get it all and bring it to the hospital and then bring me home the next day. I felt like shit over the next few days but eventually got back to normal.

   It goes without saying I learned a lot of lessons this summer.

1. Don't listen to random witnesses, they might make you call the cops on yourself. 

2. Remember that everyone is friends with each other in small towns. You won't beat friends.

3. Don't drive too close, apparently people can exit dangerously like that on highways. It's legal to not take the ramp.

4. Remember that licenses are automatically suspended if you have your full G, consider pleading on compassionate grounds.

5. Don't always do your best. Don't over exert yourself, especially if you have EDS. It doesn't matter if it's a short period of time.

6. When you are in so much pain you are bed-ridden unexpectedly get help without waiting many hours for things to get worse.

7. Never take cannabis oil without a measuring syringe. 

Getting Off Easy

     I tried replacing zopiclone with zolpidem and codeine with nucynta but they simply don't work as well. The nucynta also suppressed my breathing more than codeine ever did and caused more stomach problems. Still, enduring the withdrawals and discomfort wasn't totally pointless. I gave my body a break from my more helpful meds to reduce tolerance at least somewhat. I've now switched back to the same meds that I've had for years and they seem to be working better, for the time-being at least. Since the new pills weren't very effective I have been figuring out when I should to go to bed with a simple test. I stop vaping and reading, lie down in bed, and close my eyes. If I struggle to keep my eyes from fluttering shut that means I have a good shot of falling asleep soon. If I open them without issue then that means I screwed up and tried going to sleep too early. I've also noticed that on bad days I would never do something like sing along to the radio in the car. If you see me doing that there's pretty much 0% that I'm extremely fatigued on that day. As for my over-medication crisis continuing unabated I am of the opinion that I'd rather live to 70 with mostly good days than 100 with mostly bad days. Even so, I sometimes worry I'm on the same path as Micheal Jackson. If you didn't know, many doctors think he had some form of EDS. He was obviously very high functioning and so when his pain got worse he demanded more and more medication to maintain functioning enough to be able to preform concerts and whatnot. It also explains his flexibility/hyper-mobility.

     I had to go to the dentist for a regular checkup though I have been experiencing gum pain. It became pretty obvious why. Upon examination they told me I have 32 bleeding spots in my mouth. You're supposed to have none or just a few maximum. It could have something due to with people with EDS bleeding more easily. My blog notes say they cleaned my mouth with some sort of laser but I should give a disclaimer that I don't remember that part just in case as it was some time ago.

   No matter how you look at it, 2017 was a fucked up summer for me. I went to camp again for 3 weeks and shit started going wrong before I even got there. I was on the highway passing through a small town. Already that's something I'm not used to. On the highways I always go on there are no intersections where you have to slam on the brakes to turn right, there's just ramps meant for exiting. There was actually a ramp for exiting right turns on this highway but the driver in front of me chose not to take the ramp which is there so you can exit without having to slam on the brakes to slow down fast enough. Instead he did slam on his brakes and turned out of the intersection. I was paying attention and not speeding but I might have been driving closer to his car than I should have because I wasn't expecting any sudden right turns. As a result I hit the driver in front of me from behind. The damage to his car was almost inconsequential, one nearly invisible dent. My car on the other hand will cost thousands to repair... It functions fine but the front is very messed up. A witness also got out of their car and told me it wasn't my fault because the other guy didn't take the ramp and was speeding which is why he needed to slam on his brakes so hard. The witness told me to call the police so I did. This was a big mistake. The police said yeah the other guy should have taken the ramp but it wasn't illegal not to. I knew I was screwed when the cop and the other driver were laughing and reminiscing about something. I realized that since I was in a tiny town everyone that lived there knew each other, including the officer. I was sitting on the grass waiting for the police to write their report and he walked over to me and told me stand up. He seemed to think I was being disrespectful but I was just resting my legs. Still, he told me I was getting off easy so I didn't say anything. He said he could charge me with distracted driving (which is bullshit) but charged me with driving too close (which is fair.) It got worse though, because I think the officer didn't realize I didn't have my full G yet.

     As I found out 3 weeks later, if you get charged and don't have your G then your license gets automatically suspended for a month. I also got a $310 fine and 4 demerit points even though my damage was 1000 times worse than the other guy's.The demerit points go away after 2 years. The repair cost alone isn't "getting off easy," it's so expensive! If I knew about the incoming suspension I wouldn't have plead guilty. I would have gone to court explaining the aggravating circumstances and how much losing my license in August would screw me over. The reason I went to camp for only 3 weeks instead of 5 is that I decided to set aside August to see all my doctors before the university semester starts again. I have a lot of doctors and most are very far away downtown. Now I'll have to uber to them all which on its own will be very expensive.  I know a judge I met through my high school field trip that said to ask him if I ever need any help, I would've asked him to write a letter or something. I have no prior charges so I think there would have been a decent chance that my suspension would have been cancelled or postponed on compassionate grounds because of how disproportionate the punishment is in my case. Too late for that now, so I guess I'll simply have to contend with "getting off easy"...

A Sleep System

      Kid Waking up   

Click link here ^

    This is a kid waking up to a new life following surgery. After seeing something like this I can't help but be hopeful I will one day be in this situation. I wouldn't be my honest self if I didn't admit I also have to suppress envious feelings of those who have the ability to fix their chronic pain by having a surgery, it would make things a lot simpler. Whenever I think about a day where my pain ends I don't know what to do with myself so I'll often just bury my head in my arms lying on my desk while just sitting there for a few minutes to bring myself back to the present. I know with a condition like mine treatment even in the  distant future won't be an instantaneous thing. Medications will slowly improve, there will be stronger pills with less dangerous side effects. As we learn more about EDS it's likely more surgical options will open up. I won't wake up one day with all my pain gone but I have to believe I'll get there in an extremely gradual process. I have already experienced a tiny fraction of this outcome a couple of times. Whenever I'm given general anesthesia I wake up free of pain which then slowly returned over the next 15 minutes. That's a moment to cherish so I still have a video someone took of me pain free floating around Facebook somewhere. You can't imagine lying there in bliss knowing it's all going to come crashing down again very quickly. I often wonder if it's better to have your pain taken away for a few minutes only for it to come back again rather than the pain being constant. Either way, I think it's an important experience; it reminds me that there are even now ways of making pain go away. I just have to try and hold out until they can do so permanently 

This is a conversation I had with a friend explaining the sleep system I developed to maximize my chances of having a decent night's sleep:

           Anyone that goes to summer camp with me knows that I was a frequent target for teasing. Let me be clear though, it was lovable teasing, not bullying. Tickling and whatnot. The main difference is that I am confident I could have put a stop to it at any time if I got serious about it. I don't want to do that and look back on those exchanges with positive feelings because this started happening in 2008, which was a year before my pain started. When I think back on all the teasing I associate it with time where I felt healthy. This is especially true because I'm unable to tell if the craziness stopped because we grew out of it or because when my medical issues became prominent people keep their distance out of fear of hurting me due to false expectations of fragility. The only thing that has a massive impact on my pain is how long I've been on my feet rather than sitting down, along with the natural uncontrollable fluctuations. What I do while standing up is mostly irrelevant unless it's a high impact action like jumping or running. For example, carrying a duffel bag for 5 minutes isn't that much more painful to me as simply walking 5 minutes. I look back at myself and see someone that appears perfectly healthy so of course people would be comfortable teasing me as a healthy kid. In essence, It's a pretty nostalgic time period. Whenever those memories pop into my head I both smile and shake my head at the same time. A smile because I associate it with good health, a head shake at the sheer incredulity of how much stuff went down. For my non campy friends, picture this scenario. There's an age group of what seriously felt like 23 teenage girls and no boys. I became the first boy to join that group. I think it's fair to say one of the teams was just a little teeny weeny stacked. (That team being me of course.) Not actually though, just did my best against overwhelming odds. ¯\_(ツ)_/¯ The amount of stories from that time I remember is ridiculous. I should probably write them down somewhere, oh the memories. Could tell some funny ones but this is a medical blog so I should probably try to stay on topic. Feel free to message me if you have a preference either way and I shall definitely take it into account.   I guess the most appealing part of those past days is how relatively care free it was. If the biggest thing I had to worry about back then was avoiding tickling it's a pretty good life. Times change and I'd hate for people to treat me differently because of my medical issues (with some major obvious exceptions of course. I often need extra help getting around and don't want people to be mad if I have to cancel plans for example.)

    The pain spike was pretty unbearable on its own but it was made even worse from unfortunate circumstances. I had sinusitis since for half a year which was finally starting to clear up. The headaches were absolutely torturous, they got worse when you lean forward or strain to do anything. The doctor has said mine was initially very severe. We tried several nasal sprays, each one stronger than the last. It could just be coincidence but the strongest spray he had might have helped a lot. Went in for a nasal scan a shortly aferward and there was just a bit of gunk left in my head but it's not infected and is shrinking. Then there's the opioid issue. I had been taking codeine every day for half a year so the tolerance very likely made it useless by that point. We got the replacement as I mentioned in the last post and would have taken only one codeine pill instead of two to minimize withdrawal symptoms. The problem is I noticed the new pain pills were making breathing rather laborious so we couldn't risk taking the codeine because I'd be screwed if I stopped breathing in the middle of then night. This resulted in me having to stop codeine cold turkey while the 9/10 pain spike was happening so it was quite the recipe for disaster. I'm glad that even on on my absolute worst days I don't destroy anything. I don't smash stuff as an outlet, I expend pent up energy by doing harmless things like slamming my sweater onto my bed or pounding on my desk. I was still up until 4 am because of the pain even though I was exhausted from a crap sleep the previous night. Blessedly my pain is returning to its usual 8/10 levels and pain spikes such as the one pictured a few days ago only seem to happen a couple of times a year. It's not like I'm in that state every time I have to cancel plans. It's simply far more uncomfortable than people might realize.

The Bad Days

A quote from someone else with EDS:

                                                                                                                     

"I’m faking being sick? You must be confused because what I’m actually doing is faking being well. I don’t always talk about all my symptoms, I don’t always admit when I'm not feeling well and I often put on a happy face because it’s just easier that way. Any idiot can fake being sick, it takes real talent to fake being well."

"Insomnia sufferers look on the bright side, only 3 more sleeps till Christmas."

      The sinusitis continued to stubbornly refuse to go away. I went back to the nose doctor several times and each time he gave me a stronger spray. After using the strongest nasal spray he had for a few days I noticed some improvements in the headache but I was still constantly sneezing. Eventually I had a nasal scan done to get a better look at what's going on. My sleep doctor mentioned that he too suffered from Sinusitis while he himself also has a chronic pain condition. Despite that he said the sinusitis headaches were one of the most uncomfortable experiences of his life.

   It's become a rarity but on certain occasions someone tries to venture themselves as an inspiration for me by bragging about their own medical achievements, especially relative to mine. A relative called me and said I should be strong like them. They like to remind me how old they are with the implication being they are way older yet doing better than I am. He even said he's not trying to belittle me but that's exactly what he was doing. Funnily enough, as part of the boasting, they told me I have"no idea how many pills," he has to take. I'm pretty certain I take more but it shouldn't be a competition. I take up to 20 per night. When I mentioned I had just woken up they told me I "can't just lie in bell and waste the day away," without having the slightest clue what was going on at the time. That day was actually a massive improvement, I had woken up at 10:15 am. I went from waking up at 4:30 pm to 1 pm and then 10:15 am in the span of 3 days. It was torturous because lack of sleep worsens my pain. I had to put up with the same kind of crap from others before I got my diagnosis but I refused to stand for that any longer. Some people just really don't get it.

   My dad and I talked to the doctors at the nascent EDS clinic and they expressed interest in using me for studies to find out why medication hardly affects me. Even Xyrem, the synthetic version of the date rape drug, had absolutely no sedating effect. It's supposed to knock you out cold in 60 seconds. The clinic was still in the patient acquisition phase and they expected to begin research in August. Unfortunately they informed me that two out of three of my referrals will have a waiting list of 6-8 months. Only the least important one will go through any time soon.

    I also saw my neurologist for the first time in half a year who prescribed a topical analgesic cream but my pain is far too deep for that since its musclo-skeletal. It's not my bones or muscles that hurt, it's the tissue that connects them together. So the worst of my pain goes down in a line at the back of my legs which on top of aching also feels like there are little knives all along in each tissue cell of that line. This is because people with EDS often have micro-tears on a microscopic level. The medical marijuana helps me ignore it but using it every night leads to funny scenarios like my vaporizer screen falling off causing me to suck in a mouthful of herb. Tasted as gross at it sounds.  

   I'm starting to realize that a couple of times a year I seem to get some form of a massive pain spike for no particular reason, just part of the fluctuations with EDS but to an insane degree. My pain is really bad at the best of times so when I say a massive pain spike I'm talking 9/10 on the pain scale or higher. 10 is the highest pain I can imagine, like being doused in gasoline and ignited. 9.5 would be some CIA agent methodically torturing me. A few days ago my pain was at 9. It's usually 7.75-8. It resulted in nights like this.

    Some of you might be a bit shocked to see this but should you really be? Those days where we had plans but I had to cancel, those days you noticed I didn't make it to class, those days I seem more irritable than usual over Facebook are days I'm in incredible pain and so I shut myself in my room and stay there until it passes. This means only my immediate family truly knows how bad my worst days are. While I have more bad nights than good thankfully the situation the picture depicts happens around twice a year. This isn't very reassuring though because every time it happens I'm terrified it will stay that way and never get back to 'normal.' It's not particularly likely but not unheard of in people with EDS. This is after years of my pain tolerance continuing to rise so I'm confident if someone healthy were to suddenly have what I consider a 9/10 level of pain they'd be screaming rather than crying. The whole ordeal has left me a bit depressed because when the pain becomes that unbearable I inevitably begin to develop suicidal ideation again. The pain is starting to recede so those thoughts are going away but I have had a rude reminder of my own mortality. I understand that there are many things to try before ever going through with that. I can try stronger unorthodox painkillers again until it passes, I can go to the emergency room, hell I'd even try amputating my own damn legs if it is indeed micro-tears causing my pain. I think most would agree it's better to be in a wheelchair than dead. 

    My neurologist wants to try ketamine infusions when I get back to camp. Point is, there are still things left to try. My family doctor prescribed an opoioid called nucynta which is stronger than tramadol but weaker than morphine. It's going to replace codeine because since I'd been taking codeine every day for almost a year the tolerance has probably made it useless. Jury is still out on how useful it will prove to be. I will have to be very careful though because it can cause life threatening serotonin syndrome which I've already experienced two too many times as well as dangerous respiration suppression. Of course, once again, I wasn't warned about these things from the doctors. I looked it up online and confirmed with them after. It will be up to me to monitor any change in symptoms.