A Sleep System

      Kid Waking up   

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

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

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

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