A New Hope, A New Pain

     As you might imagine I was quite excited to hear what the Head Neurologist at Sick Kids would have to offer me. In my mind I was thinking of all the possibilities that would come out of it. Would he have a miracle cure, or would it just end up being another setback? Well, in the end, it was somewhere in between. He decided to preform a nerve conduction test on me. This basically consists of electrocuting me and monitoring how my nerves react. While uncomfortable, it wasn't as bad as it sounds. The test showed normal results which in truth isn't surprising, and here's why: my problem is that my I have constant nerve pain in my legs; this is a result of my nerves conducting too much. The test he did is meant to check whether I have the type of nerve damage that consists of numbness,which would be indicated if the nerves didn’t conduct during the test. Since I have the opposite of that problem, the results on the test appear normal, since the nerves are conducting more than they should rather than less. After obtaining his results the doctor confirmed the diagnosis of Post H1N1 neuralgia and told me that he expects my pain will simply vanish one day, when my nerves finally realize that there's no problem now that the swine flu virus is gone. The catch is he couldn't tell me when. That was three years ago, which puts me at three and a half years in pain without any substantial sign of it receding. With this spark of hope the doctor sent me on my way, and I haven't seen him since. This hope lasted me quite a while,but frankly it has mostly burned down back to a distant fantasy.

     Grade nine ended and I passed all my courses, but not without quite a struggle. A struggle that was not only physically taxing but mentally, and this is where things start getting dark. This is how my days went for that year: I'd go to bed, spend a couple hours awake because I'd only be able to fall asleep if I was exhausted due to the pain. Then I would wake up still exhausted because the pain wouldn't allow me to have a deep sleep. Later sleep studies would show that I have an arousal bringing me to the surface of sleep every 14 minutes throughout the night. Then I'd be expected to go to school in just as much pain as before but now I'm also exhausted which makes it impossible to keep that mental barrier between you and the pain standing. If I push myself I'm able to make it through the school doors. Great, I'm at school, but now I'm expected tolearn things?!? On average days I'd fall asleep in class, on good days I'd go to sleep in the hall using my bag as a pillow during lunch, on bad days I'd beg my parents to pick me up and take me home where I can at least try to distract myself from my pain and exhaustion. As you might expect my marks were decimated but they were the least of my worries. Subjects like math that require focus and extra thinking were especially difficult, for how can a fatigued and in pain person focus? In terms of specific numbers, I went from a 98 in grade 8 math from before I was sick to a 63 in grade 9 math after I was sick. As I mentioned before, while I persevered through these hardships, they took their toll. For a while no one wanted to admit it but it became clear to my doctors that I had slipped into depression,and booked an appointment with a psychologist who confirmed this. I was never totally convinced. I knew without a doubt I was miserable but that and depression are two very different things.

     So began the vain attempts at therapy. Most depressed teenagers are distraught by emotional factors while in contrast my trigger was simply physical pain. I knew one can't treat my "depression" without treating my pain. Of course the psychologist felt otherwise. She'd have me imagine myself on a beach, to close my eyes and relax. I hated this. Try to imagine how someone in pain feels when they try to close their eyes and relax. What they feel... is their pain. Only now it's worse because that's all you're feeling when your eyes are closed. Her next step was to play the sounds of the ocean waves to help me imagine my way to a beautiful beach. Great, now I'm on a beach in pain. Hardly a success. It simply doesn't work (for me). This fact was eventually realized we then tried a more practical approach, a psychiatrist. I was prescribed anti depressants such as Prozac among others, which at first made me feel a kind of artificial giddiness. I'd laugh at everything even though I didn't want to and didn't think it was funny. I'd jump from medication to medication, with each one either not working or having their own infuriating side effects. Some of them actually helped so I took the good with the bad and went on to tackle another year of camp.

It seemed each year of camp posed a different challenge. 2009 was the time immediately after I was sick which involved me learning my new limits. I would find myself running to play sports and immediately regretting it due to increased pain. 2010 was the year where I was depressed without having working antidepressants, and the rest will become clear in later posts, so back to 2009. At this point all my hope of a speedy recovery had evaporated and I found I couldn't enjoy anything from a combination of pain and sour moods. I'd take copious amounts of Advil because I'd convinced myself they helped (they didn't.) I'd sleep through half the day's events because at this points my sleep cycle was fucked up beyond all recognition, and I'd start walking with a cane just to be able to get around the camp. They weren’t the fun summers I'd remembered. I'd finally made it through that year of school and told myself camp would be my light at the end of the tunnel, that I could still at least have a great time there. When at every corner I was proved wrong I'd fall into fits of despair and call home crying because I couldn't take the pain of the increased activity associated with camp. One night my parents weren't picking up the phone and I absolutely needed reassurance so I found a spot where I could be alone and called Kids Help Phone for my first and only time. They were clearly a bit dumbfounded because I imagine most calls they get are from bullied/abused kids, not kids with chronic nerve pain. I knew that but I think I just needed someone else to remind me that hope is a thing that exists and it tided me over for awhile. Unfortunately no amount of reassurance can act as a painkiller and so eventually my pain built up to a point where I had to leave camp for a number of weeks, this would be the first year I would have to do so and I had to do the same for several years afterwards. This is how the summer ended and so began Grade 10.