It'll Take A lot More Than Words and Guns

     A symptom I suffer on occasion that is especially debilitating is costochondritis. "Costochondritis is an inflammation of the junctions where the upper ribs join with the cartilage that holds them to the breastbone, or sternum. The condition causes localized chest pain that you can reproduce by pushing on the cartilage in the front of your ribcage." It feels like something is strongly compressing down on your upper chest. Not only is it quite painful, it makes it hard to breath. That's what I consider the most debilitating part even though this specific issue is not dangerous. When you can't breath properly you always start to wonder, "what if it's something serious this time?" I'm pretty sure this only started happening a few years ago, which makes me worry about additional complications arising over time. 

    I have always been worried about my pain suddenly worsening one day which is why I thought up contingency plans to make myself feel more comfortable by knowing there would always be a way out. At my worst point in 2011 I looked up the least painful ways to commit suicide. Overdose seemed best, but I already tried that twice. Guns seemed like the next best bet but how would a 'depressed' teenager get one? Worst comes to worst I decided I'd jump from somewhere high. That changed in 2012 after a trip to Arizona. I got to shoot a gun for the first time and was tempted then and there out of fear I'd never get better and might continue to get worse. I thought it might be the best opportunity I'd ever get. I decided that if I really degenerated to that point I'd find a way back to Arizona and do it. I don't think I've ever said this to anyone because giving away these plans would have robbed my of my only potential escape. I was miserable back then because it is when I was judged for health issues out of my control. After I got my diagnosis I was no longer miserable, but I certainly wasn't happy. The first few months at university had been the first time I'd been truly happy since my pain started, and I eventually became comfortable enough to reveal these secrets. There were several reasons for my newfound happiness. Since I'd finally made it to university I had a social life again. I started to have more good days than bad but this is only because I'd been sleeping in ridiculously late (on certain days I woke up at 5 pm) along with taking dangerous amounts of pills. I was in the middle of what might have been my favourite book series of all time (there's around 45 books in the series and I'm halfway done and so am ridiculously immersed.) I'm obsessively excited about my appointment at the new EDS clinic. Because of my unique diagnosis confirmed by a skin biopsy there was a good chance they'd test the newest treatments on me, they told me as much over the phone. I was glad I'd probably be able to go back to a summer camp I'd been going to since 2007 for what was probably one last year. Lastly, I'm trying to contain nerdgasms from the prospect of upgrading my computer. I played video games far less often than i used to due to school studies and being in the vicinity of friends but I was looking forward to a little me time over the summer. For the other nerds out there, I'll be able to play in 4k resolution (far better than HD) which allows for truly next-level occasional escapism from pain. This happiness presents as me singing to myself on occasion and having more a spring to my step. I was also really proud of myself for being able to manage getting around campus on a regular bike. I thought I might need to buy an electric one or even a scooter but that had not so far been the case. Biking isn't easy however, it's still very painful, especially when going uphill. Still, it is far less painful than walking. 

    Recently I became ecstatic because I discovered that since September the medical community has been actively working on a gene therapy cure not just for Ehlers-Danlos Syndrome, but for my type specifically (Hypermobility Type.) I was under the impression that they wouldn't start working on a cure until they finished tracking down all the genes that cause it. Even then, I assumed they'd be prioritizing a cure for the vascular type, since half of the people who have that are dead by their 40s. I was wrong on both counts, but I was obviously not complaining. Essentially, the cure would arrive a lot sooner than I originally thought. In contrast to these joyous developments, I was getting more and more stressed about my medication overdosing issue. It didn't help that several people in an EDS group I joined kept trying to convince me I was going to die from the amount of quetiapine I took. I had written a post asking for new medication ideas that I haven't tried yet. When I mentioned my dosage they kept insisting I'm in serious danger. I told them I posted asking for medications, not advice, and that they should let me know once they're done medical school (my many doctors do not think I'm in danger of anything other than diabetes.) A typical high dose of quetiapine would be 300, which is what I used to be on a few years ago. I now take 1950, but the lethal dose for quetiapine is 30 000. Admittedly, I was on many other medication that can suppress breathing. I've been doing this for a long time though. I was hoping the upcoming EDS Clinic appointment at the end of April will be able to give me some answers as to why I need to take such high doses of medication to get such a small effect.

Lying Awake

Something to ponder: The loneliest people are the kindest. The saddest people smile the brightest. All because they do not wish to see anyone suffer the way they do.

    Whenever I try to make some sort of concerted effort on something like reducing the dosage of the medications I'm taking to safe levels my functioning is badly affected for an extended period of time. This can lead to what might be considered moments of (mental) weakness though I don't think that's giving myself enough credit. I think I prefer the term "moments of vulnerability" where I don't just have to contend with pain but with exhaustion. In these moments I can't think clearly and I'm more reckless and uninhibited. This is just a fancy way saying I say stupid shit. At night there's a third issue to deal with, sedation from meds. This is when I'm at my most vulnerable and why I tried to stay off social media after taking my pills. It's also why I sometimes see a message and won't answer until the next day. It protects myself from myself.

    On certain days it's easy for me to realize just how much my mood depends on how well rested I am from the night before. For example, on a day where I got bad news about an exam I took I was still singing and had a skip to my step because I had energy levels a lot closer to a healthy person. The opposite is also true, on days where I'm apathetic about something I was extremely excited about the previous day just because I had as shitty sleep that night. Something you might not think about is that feeling rested is such a rarity for me that it's all it takes for me to be cheerful. There was even a day where I felt great but knew I had to wake up early the next day which I knew would be so uncomfortable I just wished I wasn't alive for that specific day. A time travel machine would work wonders for those days. At the end of that specific great day I actually cried a bit in pure dread of what tomorrow would be like. Part of the reason I was feeling better than usual that day is that I had finally gotten back to my normal weight again after throwing up so much for so long. At one point I had dropped down to 114 pounds, and eventually clawed my way back to 130. 

     The worst part about my insomnia isn't just lying in bed awake for hours, it's not being able to think about anything other than the fact I am totally screwed not just for that night but the following day. Typically, if I'm lying awake for hours, that means I tried to go to sleep too early. In terms of being able to fall asleep it's not just overdosing on pills that makes it happen. I also have to be legitimately sleepy to sleep through my pain. Some of my pills take a long time to work, so a lot of planning goes to when into when I take them each night. If I take my pills too early and am lying awake then it's not like I can just get out of bed and try to get some work down while I'm awake anyways. The pills are too sedating. If I take them too early then I still lose all productivity for that night since I can't work or sleep. Of course having a shitty sleep also means I won't be productive the next day either. This kind of trap was the main reason I was unable to take more than 2 university courses at a time, at least for the time being.

   
    At the beginning of the winter 2017 semester I contracted either strep throat or the flu. This would not be a huge deal for a normal person, but if you happen to have an already excruciatingly painful condition the experience becomes a catastrophe. At first I was pretty sure I had the flu because my throat wasn't so bad at the beginning. I went to the campus clinic and they gave me tamiflu to be safe because of my fever/typical flu symptoms and the fact I have EDS which puts me at higher risk for complications. Then things got worse. I couldn't eat anything without immediately throwing it back up. My throat got worse and worse, to the point where I completely lost my voice for days. I mean that literally, I was totally inaudible. Whenever I get sick, even with just a common cold, my pain gets significantly worse. When I'm very sick it gets far worse. On average I would rate my pain an 8/10, but understand I have developed a very high pain tolerance and that average is only accurate when I am inactive. If I walk or stand for more than a few minutes the pain goes up to 8.5. As I learned, if I have the flu/step throat, the pain goes up to a 9. Realize that I didn't dish out 9s lightly. The last time my pain was a 9/10 was when I tried to kill myself in 2011. It was so agonizing I literally could not stand up without using my arms for support. That's only happened a few times since my pain started in 2009. Aside from my leg pain being horribly debilitating my throat kept getting worse. This made us suspect strep throat over the flu and so my sister's friend drove me to the emergency room along with said sister. My lack of voice prevented me from speaking to the doctor so we got some lozenges and sucking on them helped slightly so that my sister was somewhat able to translate what I was trying to tell the doctor. He didn't swab me but suspected strep throat so he prescribed antibiotics. I kept taking the Tamiflu just in case he was wrong. Over the next few weeks my pain started to recede back to "normal" levels. Being at university with a chronic illness is rough. Being at a university when you have both chronic and acute illnesses at once is simply the worst. It's lucky my sister is at the same university as me because when I can't even stand unsupported it's obviously hard to take care of yourself.