Stand By You

                                                              Stand By You

   This is another song analysis post. I'm not usually very into pop songs but the lyrics hit home hard. Think of it in the context of my friends and family supporting me both physically and emotionally. Unlike Humbling River, the idea is the song would be song to me rather than by me. For those not interested in song posts, don't worry, this is the last one for the foreseeable future.

Song link: https://www.youtube.com/watch?v=bwB9EMpW8eY

Hands, put your empty hands in mine. And scars, show me all the scars you hide: For anyone but the closest friends and family I have to avoid oversharing my medical issues. These issues can be depressing, and people aren’t looking for depressing thoughts when they hang out with their friends. It’s not like I’m posting pictures of me at my worst on my Facebook wall, that kind of openness is limited to my memoir closed group. Otherwise I just put on a happy smile and present that to the wider population because that’s what they want to see, for the most part. Those closest to me want to know the full picture which means I don’t have to hide my scars, mental or physical, 24/7.

And hey, if your wings are broken. Please take mine so yours can open too. 'Cause I'm gonna stand by you: In terms of independence, I do what I can. The key part of this line is, “So yours can open too.” It involves people giving me a push with their help so I can begin to strengthen and achieve things for myself as they support me. It’s the best way to feel productive.

Oh, tears make kaleidoscopes in your eyes. And hurt, I know you're hurting, but so am I: This acknowledges that supporting a sick family member is a team effort. Pain can be as contagious as laughter. It’s tricky reconciling this with trying not feel like a burden.

Even if we're breaking down, we can find a way to break through. Even if we can't find heaven, I'll walk through hell with you. Love, you're not alone, 'cause I'm gonna stand by you: This is one of my favourite lines because it rings so true. In my situation climbing up to a 'heaven' is unattainable right now. No matter how hard I try I’m not going to cure myself and as long as this pain continues unabated finding peace in 'heaven' is a distant dream. In my mind simply not having chronic pain would be heaven. Yet with all this knowledge I keep up the effort anyway with a family that dives into the muck with me and keeps pulling me in the right direction.

Yeah, you're all I never knew I needed. And the heart, sometimes it's unclear why it's beating. And love, if your wings are broken, We can brave through those emotions too, 'Cause I'm gonna stand by you. Oh, truth, I guess truth is what you believe in. And faith, I think faith is helping to reason: Truth is what I believe in. I believe that my salvation is best achieved by invariably telling the truth of what I feel. After the experiences I’ve been through I've learned complete trust is essential to making any real progress, whether it be with doctors, friends, or family.

          

I'll be your eyes when yours can't shine. I'll be your arms, I'll be your steady satellite. And when you can't rise, well, I'll cry with you on hands and knees 'Cause I, I'm gonna stand by you: When I’m at rock bottom, say during a particularly extreme pain spike, it becomes difficult if not impossible to maintain a rational perspective. During these times it’s helpful to lean on family to guide you through what your mind cannot process. I’m not very pleasant to be around in those moments. I can hide in my house away from friends but family is always there, no matter what, through the good and bad.

What Could Have Been

    I had finished the York Ted Talk X speech fairly quickly; I wanted to have as much time to practice as possible. The focus of the topic ended up being self-advocacy for medical patients such as me. I’ve learned so many lessons in that respect in the past 9 years that I’ll hopefully make sure others don’t also have to learn them the hard way like I did. It’s especially important for those with invisible illnesses to learn how to get the truth of what’s going on out no matter how long it takes.

    After the semester ended it was time to see all my doctors. I had 6 appointments in the span of 5 days, one of which was the second dose of ketamine. The first time I went to the clinic was before the semester started where I received a dose of 10 ml. This last time I was given 20. My appointment next month will be 30. According to my own internet searches the maximum dose is 100 so I still have a long way to go. Thankfully, the interval between appointments is finally shortening. I was a lot less tired on my second visit so I didn't get knocked out for hours like the first time but I did almost fall asleep even though I had just woken up. This continues what seems like massive potential for ketamine to work as a sleep aid. There still wasn't much of a difference in the pain itself so I have been feeling a bit depressed since that appointment. I wish they had told me the long term timeline at my first visit so I didn't put so much importance on this second infusion. Now I'm going to have to keep struggling, probably with only one course at Guelph, and even then there's no guarantee the pain will get helped anytime soon. I had to look up the dosages myself because the doctor refused to explain the different tiers. She just kept saying, "It depends on how you react to the treatments" over and over again. I understood that but just wanted to get an idea for where I might expect real improvement based on the average usual results. I think they are ageist and are worried I am so insistent on getting the pills is because I want to sell them. I still haven't seen anyone at the clinic under the age of 60. They don't understand how resistant to treatment my pain is. I won't improve if we don't make use of the sedating effects of ketamine so I can take a pill or something before bed so it's not like I want to take them during the day and be high all the time. 

   In the fall 2017 semester one of the classes I was taking was a course that combined political science and law. I was very interested in the material and was doing well at first but as my pain and by extension sleep worsened I simply didn’t have enough good days to read the required heavily written material. I managed to read the entire law textbook but that alone wasn't good enough. Reading dense law texts takes a lot of concentration and when you only get a few hours of sleep that becomes impossible. The class was originally located in a building with many huge flights of stairs and no elevator. The Guelph Student Accessibility Services responded to my concern quickly and moved the whole class to a new building for me. Unfortunately I still ended up having to drop the course which was pretty depressing. I did well in my other political science course at least, ended up with an 87. I have the marks for law school but at my current rate it’ll take forever to get there. Hopefully getting to a decent dose of ketamine will change things. I still think becoming a judge would be perfect for me. I've already got a small bit of experience with that anyway, I was elected as the senior member on the disciplinary committee at the summer camp I work at for several years and am sworn to secrecy when it comes to specific cases, but I think I did a good job.



   I also finally saw the allergist that the EDS clinic referred me to almost a year ago. After the clinic's assessment they said they suspected that Mast Cell Disease, associated with EDS, was the cause of my extremely painful stinging rashes that would come on seemingly randomly. However, recently, I started noticing patterns. I observed that it would usually happen when I play a game of nerf or work out and so I proposed to my dad that maybe it's tied to exertion. He explained to me that certain people can become allergic to their own sweat and I said that makes sense because I also then remembered it got really bad in the hot weather of our trip to Cancun. The medical term for this is Exercise-Induced Urticaria. The allergist agreed with this diagnosis but said that the treatment for Mast Cell and a sweat allergy are the same: special antihistamines; so either way the medication I'm about to start could help. I hate not being able to do cardio out of fear from a stinging attack. We did many blood and allergy tests while at Saint Micheal's Hospital. The needles were for testing different insect stings and blood tests for underlying causes. I'd never been poked so much in my entire life. All those dots on my arms were each from a needle injection and I had just as many on my other arm. This was actually taken a few days after the test so it's not as pronounced, making some hard to see. I count 13 holes on that arm alone. The tests were negative but false negatives aren't uncommon. We would have to pay quite a bit to get the next more reliable level of testing. We're still deciding on whether to do it. While I was at the EDS clinic they explained that certain of my fingers locking in two positions is actually my tendon sliding over my bone. 

    I then went to the dentist and the receptionist wouldn't stop commenting on how tired I looked. It was mentioned five times in one conversation. It upset me a bit because I overall I was so mentally tired from the roller coaster of emotions when it comes to ketamine. It's likely that ketamine probably won't help for quite awhile butI just need the ordeal to end so I can stop feeling perpetually exhausted both physically and mentally.

   I love the Nerf Club at Guelph but it really does push me to my physical limits in terms of leg usage. Things only got more difficult after the gym was renovated and the new entrance was 10 times farther from the nerf gym. This meant there was a lot more walking involved right before the already straining nerf game. I wrote to SAS requesting a wheelchair to be kept at the entrance so I can roll myself to the nerf gym. They said they would do so and the first week I went there was no chair. The next week I went and there was a chair, but it wasn't one that you can push yourself. Everyone gets to the gym at different times so it's not like I can go with friends and have them push me. A push-less chair is essentially useless. It goes without saying I wasn't very impressed.

   My masseuses know my pain has been worsening just as much as I do. The tightness is a dead  giveaway and when we say hello it usually follows with them saying: "Feeling the usual?" "Yep," "That bad, eh?" While that's happening, I need disability accommodations more than ever. This year I started seeing a new family doctor who was reluctant to write a note to the university asking them to let me have medical parking like my previous doctor did. He thought a car being on the other side of the parking lot isn't a big deal and he would have been right. The issue is that on very busy days the entire parking lot is full which forces me to have to park significantly farther away. When I was insistent he simply said the extra walking would be good "exercise"... He eventually relented when I promised that if the parking lot was never full I wouldn't ask for medical parking in the next semester. Turned out there was no nearby free space on the very first day and since I hadn't picked up my permit yet I had to pay at a parking meter.

   Due to unlucky coincidences I kept getting nose bleeds while driving my car which is obviously distracting and therefore dangerous. It got to the point where I decided it was warranted to get a third cauterization in the same spot (right nostril) as the previous ones. We think a combination of EDS causing easy bleeding and me breaking my nose so many times contributed to the problem. It definitely hurts a bit while it happens but the recovery is relatively easy, nothing like the deviated septum correction surgery.

   There was a specific moment I finally accepted the reality that my pain is worsening. I had woken up at 6:20 pm and had important events coming up early in the upcoming days and couldn't afford the time it would take to slowly wake up earlier each day like I usually do. For the first time ever since my pain started I decided to try doing an all-nighter so I could fall asleep and then wake up early. Things didn't go as planned. I found a getting fan blowing on my face helped me stay awake but as I should have foreseen I started getting very sick. Yet after pulling it off and staying awake all day I still couldn't fall asleep because of the pain. I took the realization well at first but as it sunk in that changed. It's not really possible when at university but while at home I've started using the opposite strategy when I accidentally become nocturnal. I set no morning alarms and let myself sleep in as long as possible each day. Each day I wake up later and so eventually the clock comes back to normal for a little while. It's far less unpleasant than an all-nighter and lets me avoid getting sick but is only doable when I have a few days where I can afford being nocturnal as the clock shifts.

   Sometimes it feels like good days can be harder than bad days. I get to thinking about all the things that I could have accomplished if every day was a "good" day. Hell, maybe I'd even be taller because apparently sleep deprivation can impair growth. I can so easily imagine myself having the freedom to pursue my interests. I was just starting to learn how to spar at martial arts when my pain started, I felt like I had a talent for it and was excited to train and compete in tournaments like my older brother. I actually still have good response reflexes from those classes. I 100% would have taken swordfighting lessons for fun, I like watching tournaments once in awhile. Sure I have been trying sit-skiing now but I'm definitely still envious when I see family ski trip pictures. Since I used to love hockey I still like to ironically wear a shirt of a hockey player with the tag line "Once you start, try stopping." I'm also certain my relationships would be vastly different if I was healthy. Reading old Facebook conversations from the period I was on morphine is particularly upsetting. I did keep apologizing for it but many relationships ended during that time period. Nowadays illness gets in the way of dating apps because most 22 year olds aren't mature enough to accept all this medical baggage, they have different priorities. The future is friendly in that respect. I also feel like all my hugs are awkward because all I can focus on while standing up is sitting back down again. I was never particularly graceful to begin with but when in such pain it's a whole new ball game of minor but noticeable deviance.

Setting Sail, Coming Home

                                                       Setting Sail, Coming Home

This is a song I listened to on my way back home after being discharged from the hospital. As a result I strongly associate the song with that car ride. Link: https://www.youtube.com/watch?v=GDflVhOpS4E#t=1m2s

I set my sail; fly, the wind it will take me, back to my home, sweet home. Lie on my back, clouds are making way for me, I'm coming home, sweet home: Pretty self-explanatory, I’m finally going home after a multi-month involuntary internment in a psych ward.

I see your star, you left it burning for me; mother, I'm here: Finally returning to my parents was emotional, but my path wasn’t my own. At this point the official diagnosis was mental rather than physical so I just had to go along with things I knew wouldn’t help and actually often harmed. I was allowed to sleep at home but still had to go to the hospital during the day so I could lie about all the amazing progress I was making.  

Build that wall and build it strong, 'cause we'll be there before too long. I dig my hole, you build a wall, one day that wall is gonna fall: Being discharged from the psych ward didn’t mean my situation had improved at all. My experiences were making me hateful towards doctors, towards family, and most of all towards myself. The last time I can remember lying was when I did so to get discharged from the psych ward. After the discharge I continued digging myself deeper into a hole of misery while the barriers in understanding between me and those trying to help me only became more concrete. It was unsustainable and everybody knew it, that wall was always going to fall.

Eyes open wide, feel your heart and it's glowing, I'm welcome home, sweet home. I take your hand, now you'll never be lonely, not when I'm home, sweet home: Going back home after facing the brink of death wasn’t an easy transition. Blame for the situation was being thrown around like hot potatoes, mostly by me. My absence left a void that needing filling.

Gonna build that wall up to the sky, gonna build that wall up to the sky, one day your bird is gonna fly: Like I said, the buildup of pain both physical and mental was unsustainable. I had left the hospital alive but the destructive cycle had not been broken. As long as the wall remained then another suicide attempt was only a matter of time. It finally fell in 2013 with my EDS diagnosis and I no longer had to defend my mental state.

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.