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 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.