Although it was hard to see any progress on medical solutions being made, things hadn't come to a complete standstill. I was referred to another neurologist who was head of the pain clinic at Mount Sinai. He ran another electrocardiography test on my legs and I purposefully triggered an increase in pain beforehand by using my legs to stand up and do the slump test. I was so desperate I figured maybe increasing my pain level would make a difference on the test. It didn't. The test was negative like the one I had a couple years before. Then the doctor came in to share the results. He apologized that since I didn't seem to have an active neurological problem, he wouldn't be able to help. As I sat there despairing and gathering my things to leave I habitually cracked joints throughout my body. As anyone who spends time with me knows this is a common occurrence that I can't seem to help. The doctor noticed this and started asking me questions about my joints and flexibility. I demonstrated that I was hyper-mobile, meaning very flexible, but we were out of time and he needed to see his next patients. He told me to look up Ehlers-Danlos Syndrome when I got home and see if it fits with my story. I of course couldn't wait that long, the tantalizing glimmer of hope too great, so I looked it up in the car.
As I googled what this strange sounding Ehlers-Danlos Syndrome (EDS) was several things caught my eye. First off was, "In some cases, the severity of the mutation can be life-threatening." I found that rather alarming, but who knows if there's a chance I even have this thing so there was no use worrying about it now. "There is no cure for EDS, and treatment is supportive, including close monitoring of the digestive, excretory and particularly the cardiovascular systems." If I had gulped at any point during that day, it would've been when I read that. I noted that this thing can be bad news but still hadn't reached any symptoms to compare with myself. "People with EDS are often misdiagnosed with hypochondriasis, depression, chronic fatigue syndrome, and other conditions because EDS is considered an invisible disability and there is generally poor knowledge about EDS among practitioners. Many sufferers of EDS have psychological difficulties as a result of frustration with the medical system and the socially inconvenient combination of appearing normal while being in severe pain." Now I was starting to see some connections. Throughout my years of illness I had been accused of having all 3 of those mental or exclusionary disorders. Suspicions of mine from that time have been confirmed many years later in that it was revealed to me that family and doctors had considered giving me placebos after the medical search turned up fruitless. The wikipedia post read: "Unstable hyper-flexible joints (it is possible to be very flexible or have "double joints" however, this is not the same as EDS) that are prone to sprain, dislocation, subluxation, hyperextension, myalgia (muscle pain) and arthralgia, (joint pain), which may be severe. Tearing of tendons or muscles and hernias are common."There we go. After reading that section I knew I had finally found my match. After over 4 years of searching, after years of being told the problem was in my head rather than my legs, I found my diagnosis in May of 2013. The description of symptoms didn't just accurately describe my current problems, they explained my entire medical history as well. I had bilateral hernias when I was nine which is not not altogether uncommon. The catch is that a year later I had a recurring hernia on my right side. To have multiple hernias of the same spot at that age is very very rare. They had to stitch up the muscle the adult way which leaves lots of scar tissue. Since I still hadn't gone through my growth spurt yet, the growing muscle laced with scar tissue caused a lot of pain throughout my childhood.
I wasn't sure how I was supposed to react. On the one hand, I received the validation I so desperately craved after years of searching. I wasn't crazy after all. I learned that there are other people out there going through what I was. In addition, there were plenty of online tips on how to manage symptoms. Yet the other side of the coin could not be ignored. The disease was plainly stated as being incurable. It was autosomal-dominant, meaning if I had children they would have a 50% of inheriting it. I knew then that I would not, could not have biological children; at least not until a cure is found. Yes, although it is not curable now, progress is being made. They're still tracking down many of the culprit genes but gene therapy is on the horizon. Using an agent such as a safe virus or nanobots, someone's genes will be able to be rewritten much in the same way a virus spreads throughout the body. The correct overwriting genes are inserted into a medium, and they "infect" and change all the defective genes. I'd wager this cure is a few decades off, but there's no way I'd chance putting my potential kids through what I go through. I love them too much. As it turns out, by the time I reached home I was far happier than when I left. I learned I was suffering through something very real, that there are others going through the same I can start reaching out to. Most importantly, those I respect the most would stop questioning my sanity. Regardless of who was right in the age long argument of if I was ever depressed or simply miserable, I was neither by the time I walked through my house's front door.
This Mitch Martow's medical memoir/blog titled Bend or Break that was begun in 2010 to document my struggle with Ehlers-Danlos Syndrome (EDS). A documentary film under the Bend or Break name based on these posts will be released in December 2021! This is an honest and tell-all accounting of my thoughts and experiences as both a patient and an EDS advocate. You can join the Facebook group where I share each chapter/post at this link: https://www.facebook.com/groups/163290407054413
Wednesday, November 18, 2015
Saturday, August 29, 2015
Fists of Fury
My bout of Seratonin Syndrome left me more than a little rattled. I had always known how dangerous my pain was but now the very things that were supposed to help me deal with that pain have shown themselves to be just as, if not more, dangerous. By this point I had dealt with so many disappointments from the dozens upon dozens of different medications I had tried. There was always the hope that they'd bring relief and virtually all of them had either been ineffective or came with intolerable side effects (like death). Dealing with that constant disappointment was hard enough but having my own medications make me so sick was disheartening to say the least.
It was the winter break of 2013 and my family planned a ski trip in Alberta. I didn't really want to go. Why turn down an awesome family skiing trip you may ask? Well mostly because I can no longer ski. For a person who can't ski, one of the best ski hills in the world is the last place they want to go. Maybe my parents were still worried about leaving me alone at that point and so I was somehow convinced to go. Skiing was my favourite sport and I was quite good at it if I do say so myself. I would love going on these ski trips and would always be the youngest in the 'adult' group going down the huge double black diamonds of Alberta. I would go skiing every Sunday in the winter with a skiing school called Snow Hawks. To go on a ski trip in Alberta and not go skiing was unfathomable for me. Even travelling there and back was torturous. Having to wake up early, wait in huge lines and walk around the airport is not my body's idea of a vacation. I'm not sure if it was this trip or a different one but at some point my family just pushed me around the airport in a wheelchair. Most of the actual trip consisted of me staying in our hotel room on the computer but there was one shining highlight. We went dog sledding! I love animals, especially dogs, and so it was a great experience and something I could do despite my legs. Was it worth the trip? Probably not, but I haven't a clue if I would've felt better or worse if I just stayed home alone.
Soon after I had what would even by my warped standards be considered an especially bad day. It was one of those days where I couldn't sleep from pain but forced myself to go to school. My efforts turned out to be pointless because I couldn't absorb any information which in itself is extremely demotivating. Back then these days weren't exactly uncommon, but for whatever reason it was this day that culminated in me surpassing my tipping point. I got home very pissed off at my situation and found I couldn't bringing myself to turn on my computer and distract myself from my problems like I normally would. I simply sat there brooding for awhile, which eventually turned into weeping. It'd been years and my pain hadn't gotten any better. I couldn't manage a decent sleep even once a week. The medications I tried to fix it almost killed me and meanwhile my doctor's and family are telling me my pain is caused by a mental disorder which seemed to erase any hope of what I knew was my actual physical problem being fixed. I didn't know what was physically wrong, only that something was. I could only insist my mood was a result of my pain rather than the other way around. I couldn't possibly count how many hours I spent googling my symptoms trying to find something, anything, that would support my case. Even with all these things on my mind my sadness didn't last long... because it quickly turned to anger for all the very same reasons I was sad. What was different this time is that I wasn't angry at myself, I was angry at everyone else. I did what my doctor's instructed and it got me nowhere. I put up with them convincing my family I was crazy in the hope they'd be my salvation. They failed, and almost accidentally killed me in their failure. I was furious, and began pacing around my room kicking things over and pounding on the floor. I burst open my door and went downstairs. In retrospect I think a subconscious part of me wanted to go where someone might find and help me. Even if this was so, the rest of me had entered a blind rage. Now realize that I don't use these words 'fury' and 'rage' lightly. If you consider these things a synonym of 'mad' and 'angry' you are mistaken in the same way I was before this day occured. I had never even come close to being in such a raging fury my entire life and if that day never happened I likely would never know what those simple words truly meant. I imagine most people never will, for I was literally frothing at the mouth and thrashing wildly. I can only imagine this is the kind of state parents who see someone trying to kidnap their kid would enter. With the noise I was making those who were home rushed over and started trying to calm me down. My dog was attracted by the commotion and started rushing up to me until a parent shooed her away so she wouldn't get too close to my fists pounding on the floor. I was dimly aware of this occurring and as my mind processed it my emotions once more started giving way to sadness. The fact that my parent felt the need to shoo away the dog who I loved so much was heartbreaking and deflated me.
When I next saw my psychiatrist and told him about what happened he rendered me speechless by saying it was a good thing. When he explained his reasoning though, it made sense. He said up until that moment I had been taking my shitty situation out on myself by being miserable. When my sadness turned to anger I was redirecting my aggression on those who might actually deserve it. He said my doctors, including, him, were supposed to help me and so it is perfectly normal to be frustrated and angry with them. He also said the scale of the event can be explained because my frustration burst out all at once after I had internalized it for so many years. I think he was right because nothing even comparable has happened since that day in 2012.
It was the winter break of 2013 and my family planned a ski trip in Alberta. I didn't really want to go. Why turn down an awesome family skiing trip you may ask? Well mostly because I can no longer ski. For a person who can't ski, one of the best ski hills in the world is the last place they want to go. Maybe my parents were still worried about leaving me alone at that point and so I was somehow convinced to go. Skiing was my favourite sport and I was quite good at it if I do say so myself. I would love going on these ski trips and would always be the youngest in the 'adult' group going down the huge double black diamonds of Alberta. I would go skiing every Sunday in the winter with a skiing school called Snow Hawks. To go on a ski trip in Alberta and not go skiing was unfathomable for me. Even travelling there and back was torturous. Having to wake up early, wait in huge lines and walk around the airport is not my body's idea of a vacation. I'm not sure if it was this trip or a different one but at some point my family just pushed me around the airport in a wheelchair. Most of the actual trip consisted of me staying in our hotel room on the computer but there was one shining highlight. We went dog sledding! I love animals, especially dogs, and so it was a great experience and something I could do despite my legs. Was it worth the trip? Probably not, but I haven't a clue if I would've felt better or worse if I just stayed home alone.
Soon after I had what would even by my warped standards be considered an especially bad day. It was one of those days where I couldn't sleep from pain but forced myself to go to school. My efforts turned out to be pointless because I couldn't absorb any information which in itself is extremely demotivating. Back then these days weren't exactly uncommon, but for whatever reason it was this day that culminated in me surpassing my tipping point. I got home very pissed off at my situation and found I couldn't bringing myself to turn on my computer and distract myself from my problems like I normally would. I simply sat there brooding for awhile, which eventually turned into weeping. It'd been years and my pain hadn't gotten any better. I couldn't manage a decent sleep even once a week. The medications I tried to fix it almost killed me and meanwhile my doctor's and family are telling me my pain is caused by a mental disorder which seemed to erase any hope of what I knew was my actual physical problem being fixed. I didn't know what was physically wrong, only that something was. I could only insist my mood was a result of my pain rather than the other way around. I couldn't possibly count how many hours I spent googling my symptoms trying to find something, anything, that would support my case. Even with all these things on my mind my sadness didn't last long... because it quickly turned to anger for all the very same reasons I was sad. What was different this time is that I wasn't angry at myself, I was angry at everyone else. I did what my doctor's instructed and it got me nowhere. I put up with them convincing my family I was crazy in the hope they'd be my salvation. They failed, and almost accidentally killed me in their failure. I was furious, and began pacing around my room kicking things over and pounding on the floor. I burst open my door and went downstairs. In retrospect I think a subconscious part of me wanted to go where someone might find and help me. Even if this was so, the rest of me had entered a blind rage. Now realize that I don't use these words 'fury' and 'rage' lightly. If you consider these things a synonym of 'mad' and 'angry' you are mistaken in the same way I was before this day occured. I had never even come close to being in such a raging fury my entire life and if that day never happened I likely would never know what those simple words truly meant. I imagine most people never will, for I was literally frothing at the mouth and thrashing wildly. I can only imagine this is the kind of state parents who see someone trying to kidnap their kid would enter. With the noise I was making those who were home rushed over and started trying to calm me down. My dog was attracted by the commotion and started rushing up to me until a parent shooed her away so she wouldn't get too close to my fists pounding on the floor. I was dimly aware of this occurring and as my mind processed it my emotions once more started giving way to sadness. The fact that my parent felt the need to shoo away the dog who I loved so much was heartbreaking and deflated me.
When I next saw my psychiatrist and told him about what happened he rendered me speechless by saying it was a good thing. When he explained his reasoning though, it made sense. He said up until that moment I had been taking my shitty situation out on myself by being miserable. When my sadness turned to anger I was redirecting my aggression on those who might actually deserve it. He said my doctors, including, him, were supposed to help me and so it is perfectly normal to be frustrated and angry with them. He also said the scale of the event can be explained because my frustration burst out all at once after I had internalized it for so many years. I think he was right because nothing even comparable has happened since that day in 2012.
Saturday, August 15, 2015
Nightmares Both Real and Imagined
I started school at the small private school again in September and continued making up for the lost time spent in hospitals. I returned to see my sleep specialist with the complaint that although my sleep quality has improved somewhat I am still waking up so late (12-2pm) that I missed half of summer camp. Not to mention it's hard to make any plans when you start school at 2 pm and end at 7. He put me on a new medication called Tryptophan which is a naturally produced chemical like Melatonin. I didn't find it particularly effective and so we kept raising the dosage. Eventually something did happen but it was far different than what we were hoping for. I started having very strange nightmares, far more visceral than anything i'd experienced before. The one I remember is me being in a basement at the bottom of a staircase. I felt the urgent need to get up the stairs; perhaps something was chasing me. I tried to begin ascending the staircase but when I tried to move it felt like the force of gravity had increased one-hundred fold, pushing me towards the ground. My vision took on a dark green hue and was shaking as if there was an earthquake. As all this happened there was a high pitched ringing in my ears and when I tried to crawl up the stairs I woke up drenched in sweat. It was then I remembered I had an exam later that day.
The nightmare was pretty disturbing and left me feeling tired but I had enough physical problems to deal with to let emotional ones stop me from going to school and taking my exam. As I prepared to begin writing it I started feeling quite ill. My stomach was hurting and I had a feeling of malaise and feverishness. I was still able to think clearly and knew the material quite well ( I had worked my ass off studying the past week) and so began writing as if nothing was wrong. Over time my stomach continued to worsen, cramping awfully. I began to sweat but forced myself to keep writing. I suddenly urgently needed to go to the bathroom and so stopped writing to do so. It was horrible, and had by this point developed into the worst stomach ache of my entire life, diarrhea galore. I almost couldn't breath because of the cramping but went back to continue writing. Then I had to run to the bathroom again and this cycle of writing a page then running back and forth repeated many times. I was obviously very embarrassed especially when the staff had to come and ask if I was O.K. Eventually though, I finished the exam and rushed home right away. I think I asked a parent to pick me up because I was at that point extremely concerned.
With my stomach temporarily cleared I was able to go to out for dinner with the family but this is when I began feeling irritable, which caused me confusion. Sure I had been irritable before like anyone else but it was always for a clear specific reason. I thought of anything else that was out of the ordinary which could be related and remembered the new medications along with my nightmare. I googled my symptoms along with my new and old medications and lo and behold, many results for something called Serotonin Syndrome appeared. This syndrome had occurred as a consequence of my Mirtazapine medication interacting with the tryptophan. I had never heard of it before but quickly learned:"Serotonin Syndrome is a potential Symptom of any number of life-threatening drug interactions which may follow therapeutic drug use, combination, or overdose of particular drugs."
Cognitive effects: headache, agitation, hypomania, mental confusion, hallucinations, coma
Autonomic Effects: shivering, sweating, hyperthermia, vasoconstriction, tachycardia, nausea, diarrhea. Somatic Effects: Myoclonus (muscle twitching) hyperreflexia (manifested by clonus), tremor." The progression of this typically starts with a feeling of illness followed by a severe stomach ache and then mental changes like agitation. At this point people mentally deteriorate very quickly, causing victims to essentially go mad until they potentially die. Thankfully I only got to the point where I started feeling irritability. To top it all off I found many people who went through their own episode of Serotonin Syndrome mention their own strange nightmares. The life threatening part was more than a little concerning so I got in contact with my sleep doctor who confirmed my suspicions as correct and of course advised to discontinue both medications immediately. I went back on Mirtazapine later but didn't touch Tryptophan ever again. Googling your own symptoms on the internet will end badly the vast majority of the time but this time thinking to do it may very well have saved my own life. At least it turned out with me getting 90-something on an exam I did while suffering a life threatening drug reaction. It just goes to show how awful I would have to feel to give up on something. If I ran away every time I felt like shit I wouldn't get anything done. Unfortunately it appears once in a while such perseverance can be dangerous...
The nightmare was pretty disturbing and left me feeling tired but I had enough physical problems to deal with to let emotional ones stop me from going to school and taking my exam. As I prepared to begin writing it I started feeling quite ill. My stomach was hurting and I had a feeling of malaise and feverishness. I was still able to think clearly and knew the material quite well ( I had worked my ass off studying the past week) and so began writing as if nothing was wrong. Over time my stomach continued to worsen, cramping awfully. I began to sweat but forced myself to keep writing. I suddenly urgently needed to go to the bathroom and so stopped writing to do so. It was horrible, and had by this point developed into the worst stomach ache of my entire life, diarrhea galore. I almost couldn't breath because of the cramping but went back to continue writing. Then I had to run to the bathroom again and this cycle of writing a page then running back and forth repeated many times. I was obviously very embarrassed especially when the staff had to come and ask if I was O.K. Eventually though, I finished the exam and rushed home right away. I think I asked a parent to pick me up because I was at that point extremely concerned.
With my stomach temporarily cleared I was able to go to out for dinner with the family but this is when I began feeling irritable, which caused me confusion. Sure I had been irritable before like anyone else but it was always for a clear specific reason. I thought of anything else that was out of the ordinary which could be related and remembered the new medications along with my nightmare. I googled my symptoms along with my new and old medications and lo and behold, many results for something called Serotonin Syndrome appeared. This syndrome had occurred as a consequence of my Mirtazapine medication interacting with the tryptophan. I had never heard of it before but quickly learned:"Serotonin Syndrome is a potential Symptom of any number of life-threatening drug interactions which may follow therapeutic drug use, combination, or overdose of particular drugs."
Cognitive effects: headache, agitation, hypomania, mental confusion, hallucinations, coma
Autonomic Effects: shivering, sweating, hyperthermia, vasoconstriction, tachycardia, nausea, diarrhea. Somatic Effects: Myoclonus (muscle twitching) hyperreflexia (manifested by clonus), tremor." The progression of this typically starts with a feeling of illness followed by a severe stomach ache and then mental changes like agitation. At this point people mentally deteriorate very quickly, causing victims to essentially go mad until they potentially die. Thankfully I only got to the point where I started feeling irritability. To top it all off I found many people who went through their own episode of Serotonin Syndrome mention their own strange nightmares. The life threatening part was more than a little concerning so I got in contact with my sleep doctor who confirmed my suspicions as correct and of course advised to discontinue both medications immediately. I went back on Mirtazapine later but didn't touch Tryptophan ever again. Googling your own symptoms on the internet will end badly the vast majority of the time but this time thinking to do it may very well have saved my own life. At least it turned out with me getting 90-something on an exam I did while suffering a life threatening drug reaction. It just goes to show how awful I would have to feel to give up on something. If I ran away every time I felt like shit I wouldn't get anything done. Unfortunately it appears once in a while such perseverance can be dangerous...
Thursday, June 18, 2015
Desperation is the Death of Reason
My first visit to the naturopath started off pretty well. His office was
littered with pseudo-science hogwash, but he seemed intelligent enough. He used
some sort of machine that ran along my spine to test its tightness, and sure
enough it showed tightness that corroborated with where I felt it. He then went
to work on my back and legs, loosening muscles here, pressing on nerves
there. I was suffering from a bout of sharp leg pain at the time, and after he
did whatever he did that sharpness was gone for about 15 minutes but the dull
ache remained. Nevertheless, it seemed pretty promising so I booked a follow up
appointment. As you may have noticed from before, I said that my interactions
with him “started off” well. The implication that it ended badly is correct.
This is because my second appointment was nothing like the first. For starters,
it wasn’t private like the first one was. When I arrived there were nearly 20
people all lying on massage tables throughout a room. I was led to mine, and my
worries at that point proved warranted. He treated 20 people at the same time
in the only way that is possible for one person, by going from patient to
patient only spending 15 seconds on one before moving on the next. In total we
each got a minute or two of time spent on us for the half hour appointment we
paid for, because naturopaths aren’t covered by the Ontario Health Insurance Plan. It goes without saying I
didn’t get any of the relief I did in my first visit, and so I stopped seeing
him then and there. I still wonder how much bank he was rolling in by treating
20 patients at a time.
The osteopath was a little more
competent. He essentially acted as a chiropractor, physiotherapist, masseuse,
and naturopath all in one. He too focused a lot on my spine and gave me certain
exercises to do at home. At first it seemed like there was improvement, but
over time I came to the realization it was just a coincidental fluctuation in
pain. The only real benefit I was getting was from the massage aspects and I already
had a good masseuse for that. I decided there was no point in continuing to see him,
and him raising his prices didn’t help matters. Like the physiatrist, he
espoused the benefits of an epidurolysis procedure and told me the name of
which doctor he recommends that preform them. When I looked up the doctor
online I had saw a lot of people were extremely upset about doing the expensive
procedure, saying how their pain got worse rather than better. This gave me the
impression the surgery made problems worse just as often as it helped. Even
this wasn’t enough to disinterest me from trying it at the time. This is because I still held the belief that
if I didn’t find more pain relief I than I was getting I would eventually once again
decide the only escape is suicide. Essentially for me, any risk was better than
the status quo. I now know how wrong I was, because I now know what the
source of my health issues are. I discovered from the doctor who eventually diagnosed me that the procedure would have been
not just expensive and ineffective, but devastating for my body vulnerable. Furthermore,
as details about the doctor who was recommended to me emerged, I found out he
does the procedure for anyone who has the cash, regardless of if he thinks it
will help them or hurt them. This brought my dad and myself to the conclusion
that there was a bit of a referral racket going on between the physiatrist, the
osteopath, and the surgeon in the U.S. They probably received kickbacks from
each other for bouncing patients like me between them. We can’t prove this, but
it is the most plausible explanation of their reckless disregard for patient
safety. My personal lesson learned is that desperation is often the death of
reason.
Saturday, June 13, 2015
Summer Sleeps
Now that the sleep doctor had
seen how much my pain was interfering with my sleep he started prescribing me
medications to help my brain relax. There were improvements right away but
changing a sleep schedule as abnormal as mine takes time. Slowly,
minute-by-minute, I normalized my schedule. Eventually I was able to start
classes at 11 am rather than 2 pm, which while still isn’t even close to normal
is clearly far better. As my sleep improved, so did my marks. Finally I felt
like my mental functioning was returning, being on morphine and other sedating
medications not to mention being stuck in a hospital for so long had put me out
of practice.
It was summer, which meant it was time for camp once again. This was my
first year as a staff member, and I was assigned to be a counselor for the kids
in grade 6. This is nerve-wracking in itself but I was worried about how it would play out in terms of my health issues.This was a rather tricky business, since I was still often waking
up around lunchtime. It was a tragedy to miss every breakfast and all the accompanying pancakes. Thankfully I was assigned to a group of 3 other counselors
so hopefully my missing of the mornings wasn’t a bigger problem than I noticed.
Other health accommodations I needed were provided for me, a big one was being
exempt from being required to sleep in the same cabin as the kids I was in charge
of. There were two other counselors in that cabin, so that also wasn’t too much
of an issue I hope. When an empty cabin was available I would sleep there, but
when it wasn’t I was allowed to sleep with the adult specialists in a small
house on the campgrounds. There were very considerate about not waking me up at
night and I was able to function pretty well given the circumstances. Sure,
I couldn’t go on the canoe trips or play the sports, but I felt like I had a
good presence. Even with all my accommodations the increased amount of walking
required from at being camp took its toll, even more so than usual due to my
added responsibilities as a counselor. I was able to stay for the last 2 weeks,
but only by taking a break 3 weeks through the summer (the halfway point) and
going home for a week to rest up. I came back refreshed, and all things
considered had a pretty fun summer.
I dreaded being judged for things out of my control and so before camp gave a little explanation of my situation to the current staff. I explained that I take lots of pills at night and so will be really out of it for about an hour before going to bed. I mentioned that there are a lot of physical things I can't do and so if I am asked for help I might need to refuse but not out of a lack of wanting. Finally I said that just being at camp is far more walking from place to place than I'm used to and so I may get occasionally grouchy or exhausted from pain spikes. I was received warmly and didn't have many issues that I noticed with my co workers in that respect. Another challenge is that the kids I had were 11-12 years old who like to run around a lot. When they wouldn't go to where they were supposed to I would sometimes feel the need to chase after them which would aggravate pain levels. Despite the difficulties, I had a great time and found being a counselor manageable with some adjustments along the way to the next year.
I dreaded being judged for things out of my control and so before camp gave a little explanation of my situation to the current staff. I explained that I take lots of pills at night and so will be really out of it for about an hour before going to bed. I mentioned that there are a lot of physical things I can't do and so if I am asked for help I might need to refuse but not out of a lack of wanting. Finally I said that just being at camp is far more walking from place to place than I'm used to and so I may get occasionally grouchy or exhausted from pain spikes. I was received warmly and didn't have many issues that I noticed with my co workers in that respect. Another challenge is that the kids I had were 11-12 years old who like to run around a lot. When they wouldn't go to where they were supposed to I would sometimes feel the need to chase after them which would aggravate pain levels. Despite the difficulties, I had a great time and found being a counselor manageable with some adjustments along the way to the next year.
I also started looking for new solutions for alleviating my pain; after all, my psychiatrist stubbornly insisted there was still hope. As a start I began getting weekly massages. This may sound like a pleasant, relaxing experience, but you’d be surprised at how untrue that is for me. As I now know, due to my defective connective tissue my muscles locked in place to compensate. Untightening those muscles to that degree is quite painful, particularly the hip flexors. Despite that it is still very worthwhile to get even a short relief from my locked tendons, even though they inevitably get just as tight again after a few days of use.
The next specialist I saw was a physiatrist on the recommendation of my psychiatrist. When he examined me he got me to do something he called the Slump Test, though it is more commonly known as the Straight Leg Raise Test. It involved me sticking out my legs while sitting down in the straight line of a 180-degree angle. I was then told to lean forward, which caused my leg pain to get worse to a great degree, but this was followed with immediate relief once I put my legs back down. This is supposed to be a sign of neurological hyper-sensitization, because it positions your spine in such a way that it will cause pain for people with neurological issues but none for those without. This essentially just showed my nerves were firing when they weren’t supposed to, causing something he called neurological tension. He had five potential solutions for me to try. First I tried acupuncture, which had no effect except making me really tired. I literally fell asleep on the table while they were sticking needles in me. The next idea was a pain medication called Cesamet. This is a synthesized THC pill (THC being the main active ingredient in marijuana.) The pills didn’t reduce my pain, but they did make it bother me less. The physiatrist also told me of a procedure called Epidurolysis, which in simple terms involves the flushing the spine. Here’s the short official explanation: “Epidurolysis procedure is used to loosen and dissolve some of the scar tissue from around entrapped nerves in the spin, so that medications such as cortisone can reach the affected areas, and so that scar tissue is less painful.” He said that they only preform this procedure in the US, and that it is quite expensive. To my then desperate self it felt like a miracle solution, and I was eager to try anything and everything to alleviate my pain. As a doctor himself, my dad was more skeptical. We put it on the back burner for the time being. Lastly, the physiatrist referred me to an osteopath and naturopath colleague of his. I booked appointments with both immediately.
Thursday, May 14, 2015
Depressed or Miserable?
With my recent hospital
discharge and my online careers course 'training wheels' complete it was time
for me to get back toschool for realsies. I knew going back to my previous
normal high school wasn't an option. I would need something more accommodating.
My brother had taken a summer course at a small private school with very
flexible hours, so that seemed like a good place to try. At this point my
sleep schedule was so out of whack I had to start classes at 2 pm, but the
system worked. Unfortunately it's rather inconvenient for other important
things, like having a social life, to switch schools in grade 10. I was leaving
all the friends I had been with since nursery school and didn't really have the
opportunity to make new ones since the only way my crazy sleep schedule would
work is if I took private classes. Even when I switched to regular classes there
were only a few kids maximum. I had also come to realize there were only two
types of students at this school. There were those with some sort of life
crisis who needed accommodations. Sometimes it involved health issues like with
myself, other times a parent dying, etc. If you didn't have to switch to this
school because of a crisis, chances are (though not with
everyone!) you had to switch because you are a poor student who needs to
be watched closely to get any work done. As someone who fought like hell for
the chance to be back in school I had trouble getting close to these students
and didn't really look to them as new friend material. Speaking of social life
inconveniences, having to start school at 2 pm wasn't helping things so I got
referred to a sleep doctor specialist.
To see what exactly was going on with my sleep I had a sleep study
done. Sleep studies require you to sleep over at the doctor's clinic and are
rather unpleasant. Why are they unpleasant? Well, for starters, they involve
dozens of electrodes being glued all over you. Just putting them all on takes
half an hour and they all have wires leading to a receiver box placed next to
your bed which severely restricts your movement. Every time you need to go to
the bathroom they have to unplug and re-plug most of the wires while carrying the rest
with you. After you're all set up they make you go to bed at 10 pm; even with
the knowledge there would be no way I would actually fall asleep before 2 am.
Not only is simply lying there for so long excruciatingly boring, it was
horribly uncomfortable due to all the god damned electrodes and of course my
pain. That wasn't even the worst part, not even close. The worst part is they
make you wake up at 7 am despite the fact if I woke up before 2 pm I would be
so fatigued I couldn't hold a conversation. It gets worse because they make you
stay until the early afternoon so they can do what they call a series of
daytime sleepiness tests. This entails filling out a bunch of forms gauging how
shitty you're feeling and then trying to fall asleep for half an hour 5 times
throughout the day. Despite me being unable to properly describe how exhausted
I was, I didn't fall asleep once. This happened for the same reason naps were at the time never an option for me, that reason being the pain. My pain was so severe it
was impossible for me to fall asleep without the aid of many sedating
medications. Since I don't take those medications during the day, I couldn't
fall asleep despite my fatigue, which is what the study results confirmed.
The results also showed that I was having what they call an
"arousal" about every 14 minutes throughout the entire night. Before
you ask, no this isn't a sexual arousal, you pervert. It means your body has
reached the surface of sleep. It basically means waking up except it only lasts
a few seconds and you usually aren't conscious and won't remember it.
Obviously, if your body reaches the surface of sleep every 14 minutes for the
entire night every night, you aren't going to be getting much deep sleep. This
also explains why the results showed my REM (Rapid Eye Movement) deep sleep was
far less than what is normal. The assumed reason I woke up every 14 minutes was
that my pain was preventing me from falling into a deep sleep. Go figure, but
unfortunately it wasn't like we hadn't already tried everything we could think
of to reduce the pain. I had just got off morphine for Christ's sake! Anyway,
to sum it all up: how could I not be constantly fatigued with
results like that? Apart from the obvious chronic pain problem, the doctor's
diagnosis was Phased Delay Syndrome. This disorder essentially just involves
your biological body clock being completely thrown off. Getting it back on
track is a long tedious process that involves slowly shifting your sleep schedule
night by night. Well, I had to start somewhere.
In a very interesting turn of events the sleep doctor also gave his
opinion that I wan't depressed, merely miserable, which was a very unpopular
opinion at the time. He said that anyone in my situation would be miserable,
and that the goal is all about improving my quality of life to improve my mood.
Of course being miserable for an extended period of time puts someone at risk
of depression, but they aren't the same thing. Being sad or miserable is both
not necessarily chronic and is usually in direct response to some sort of
problem you have. In contrast depression is the problem itself
and can continue even when the supposed problem is solved. Sometimes there's
not even a discernible problem at all. I agreed with the sleep doctor's
assessment. After all I had been fighting to keep my focus on my pain issue
rather than my supposed mood issue every step of the way. It raises an
interesting question: do you need to be depressed to attempt suicide? Surely
every human has his or her breaking point for something like pain. Does
exceeding that point and then seeking to end the pain automatically mean you're
depressed? Depression is by definition a mood disorder. A healthy mind
gets sad when something bad happens, which is a very simplified version of the
situation but definitely isn't disorderly. When someone can't take their pain
anymore and their pain is so severe that they can no longer enjoy life, is it
not a logical and rational response to end the pain in the only way available?
Even if that sole escape is ending one's own life? I thought so, though I was
perhaps slightly biased on the matter.
Wednesday, March 11, 2015
Outrunning The Past
During my stay in the hospital some of my family members gave me books to pass the time. One such book was Unbroken, a true and harrowing World War Two story of resilience. If it sounds familiar it's because they just released a movie adaption of it. If you are planning on reading or watching it and want to avoid spoilers feel free to skip to the end of this paragraph. As a book about resilience and the will to survive I imagine it was gifted to me on purpose for inspiration during my darkest times. And it gave me some, at first. The main character Louis is a bomber pilot that gets shot down over the Pacific Ocean. Using an inflatable raft, he survives sharks, the sun, and starvation for over 40 days. On one of these days he made a promise to god that if he made it through this ordeal he will always be his loyal servant. Two of his comrades were with him, and one of them died while at sea. Eventually, they got spotted and captured by the Japanese. After being tortured for information Louie was sent to a particularly brutal prisoner of war camp where he was singled out by a sadistic Japanese officer. Louie survived all of this, barely. At first glance it seemed like a good source of inspiration for me right? Well, the problem was the ending. Louie kept the promise to god he made while stranded at sea and became a born-again preacher after returning home. Now I have nothing against those who choose to follow a religion, but it is simply not for me. Turning to god to make sense of the horrible experiences you've had to endure can be a great coping mechanism when faced with tragedy, but it's never something I will be capable of doing and so I couldn't help but feel a little cheated after finishing reading the story.
Books weren't the only gifts I received from my concerned family. Earlier on in my extended hospital stay a family member drew pictures traced from actual photographs of happier moments in my life from both before and after I got sick. These moments ranged from eating at a favourite restaurant to my bar mitzvah, the pictures were captioned with the message "Remember all the good times... and the good times yet to come."
The first time I looked at the drawings was extremely emotional. It forced me to confront the unconformable but important truth that in my efforts to end my own pain I was creating more of it for those who cared for me to bear. The optimism of the message was so conflicting with what I felt at the time that I would often simply stare at the line, "And all the good times yet to come," for minutes at a time. I think I was waiting for the moment that I felt the same hope for my future that others did. The drawing now sits next to the door in my room so that I see it whenever I walk out. It will always be a reminder of the darkest pits that I came from, and the highest heights to which I'm going.
During one of my last few days in the psych ward I experienced a migraine like no other. I had brought my Game of Thrones book with me but couldn't even think about attempting to read it. I lowered all the blinds in the room because even the tiniest speck of light was blinding. I curled up on a sofa chair, put a blanket over my head, and laid there for literally 4 hours. I must have looked especially wretched because all the super strict staff left me alone for once. At that point it seemed like some godly force was just trying to cram as many bad experiences into my time in the psych ward as physically possible. It was a fitting send off for my final trip home.
The car ride of my homecoming was an emotional one. I could finally say the worst part of my journey so far, and hopefully forever, was behind me. This milestone moment of course called for listening to a relatable song, aptly named: Setting Sail, Coming Home. https://www.youtube.com/watch?v=GDflVhOpS4E
Unfortunately escaping your past involves more than just psychically removing yourself from it. I learned this from the many nightmares that would come even while sleeping in my own bed. Most of the nightmares would focus on a single specific moment, the moment I woke up from my coma following my suicide attempt. Re-experiencing that moment was torture both physically and mentally. Physically I would compare what I felt to the mythical creatures known as Banshees. If you don't know, banshees are spirits of those who have died that have been ripped from the peace of death to roam the physical world. Their weapon is their voice which wails in pain and confusion, horrifying and incapacitating all those who hear it. Their cries are fueled by the feeling of being ripped from the underworld, or in my case a coma, back into a reality with the chronic pain I've endured for years. If you don't remember the specifics, after waking up in the intensive care unit the first thing I did was start crying and ask the doctors and family starting at me with concern "Why am I alive?!?" I imagine that is about as close in reality to an undead banshee wailing as you can get. Living through this moment once was hard enough, reliving it every night even in the supposed safety of my own bed took its toll. It also made me realize that the past cannot be forgotten so easily. If I couldn't erase the bad memories, I would simply have to use my new-found freedom to replace them with good ones.
Books weren't the only gifts I received from my concerned family. Earlier on in my extended hospital stay a family member drew pictures traced from actual photographs of happier moments in my life from both before and after I got sick. These moments ranged from eating at a favourite restaurant to my bar mitzvah, the pictures were captioned with the message "Remember all the good times... and the good times yet to come."
The first time I looked at the drawings was extremely emotional. It forced me to confront the unconformable but important truth that in my efforts to end my own pain I was creating more of it for those who cared for me to bear. The optimism of the message was so conflicting with what I felt at the time that I would often simply stare at the line, "And all the good times yet to come," for minutes at a time. I think I was waiting for the moment that I felt the same hope for my future that others did. The drawing now sits next to the door in my room so that I see it whenever I walk out. It will always be a reminder of the darkest pits that I came from, and the highest heights to which I'm going.
During one of my last few days in the psych ward I experienced a migraine like no other. I had brought my Game of Thrones book with me but couldn't even think about attempting to read it. I lowered all the blinds in the room because even the tiniest speck of light was blinding. I curled up on a sofa chair, put a blanket over my head, and laid there for literally 4 hours. I must have looked especially wretched because all the super strict staff left me alone for once. At that point it seemed like some godly force was just trying to cram as many bad experiences into my time in the psych ward as physically possible. It was a fitting send off for my final trip home.
The car ride of my homecoming was an emotional one. I could finally say the worst part of my journey so far, and hopefully forever, was behind me. This milestone moment of course called for listening to a relatable song, aptly named: Setting Sail, Coming Home. https://www.youtube.com/watch?v=GDflVhOpS4E
Unfortunately escaping your past involves more than just psychically removing yourself from it. I learned this from the many nightmares that would come even while sleeping in my own bed. Most of the nightmares would focus on a single specific moment, the moment I woke up from my coma following my suicide attempt. Re-experiencing that moment was torture both physically and mentally. Physically I would compare what I felt to the mythical creatures known as Banshees. If you don't know, banshees are spirits of those who have died that have been ripped from the peace of death to roam the physical world. Their weapon is their voice which wails in pain and confusion, horrifying and incapacitating all those who hear it. Their cries are fueled by the feeling of being ripped from the underworld, or in my case a coma, back into a reality with the chronic pain I've endured for years. If you don't remember the specifics, after waking up in the intensive care unit the first thing I did was start crying and ask the doctors and family starting at me with concern "Why am I alive?!?" I imagine that is about as close in reality to an undead banshee wailing as you can get. Living through this moment once was hard enough, reliving it every night even in the supposed safety of my own bed took its toll. It also made me realize that the past cannot be forgotten so easily. If I couldn't erase the bad memories, I would simply have to use my new-found freedom to replace them with good ones.
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