Frustrated, I went to the audiologist anyway. Due to the lack of referral I had to pay them $60 to fix it... but fix it they did! They used this kind of sucking machine that just removes everything with brute force. As you might imagine, it was not a pleasant experience. My eardrums were already extremely tender from the previous attempts to clean it, but you can't put a price on being able to hear again! Basically every doctor says not to use q-tips but whenever I forget to this is inevitably the result. I've heard some others say the same, so oh well.
In great news that did wonders for my general mood, my ketamine doctor indicated he'd be willing to consider more ketamine infusions every half year! Up until now I've only been able to get them once a year. After a few months it starts wearing off and after 6 months it's always completely worn off and so I get trapped in a cycle of entirely losing my functioning every 6 months. Due to that I had to completely drop out of school for the fall 2019 semester, which is the first time I had to do that since 2011 in high school. As soon as I got another infusion I went back to school next semester, so hopefully getting them every half year will break the cycle. Getting a summer infusion would also make going to camp again a possibility, but Coronavirus isn't playing ball when it comes to that this summer. Here was the letter I got from my ketamine doctor:
Throughout all this, progress on the documentary about my illness continued. In the end the fundraiser raised $3125 which is really awesome, so thank you to everyone who donated. Many hundreds of people are following us on Instagram. You can do the same here: https://www.instagram.com/_bend_or_break_/?igshid=1th8auxd73nst
Since I've been asked, no I'm not being paid anything for this. The funds go straight to the budget of the movie. It's purpose is to spread awareness, not to make money. Almost half of that money has been spent on hiring a professional contortionist to be featured in the film. I haven't seen this footage, but have been shown pictures which I'll post below. The sad thing is that the coronavirus pandemic has of course put these things on hold, but they are able to continue doing some final editing. Even if it was finished it wouldn't be released until film festivals are safe again. Something really cool is that the University of Guelph heard about the film and shared it on social media! Didn't see that one coming. There's a few scenes left that they need me to film but I have to stay away from everyone.
This pandemic is probably the scariest period of my entire life. Given that my chronic pain started
when I had swine flu in 2009, and my health is far worse now compared to then, who the hell knows what kind of damage this far more severe virus would do to me. The sleep deprivation I experience alone massively compromises my immune system. Whenever I get what's supposed to be a minor illness, like a cold, it shuts me down for weeks. This issue only gets worse the longer I go without my treatments. I can't get my ketamine infusions or weekly therapeutic massages, so my pain is spiraling out of control. It's usually 8.75/10 now and I'm back to being awake 26 hours everyday. Before I figured out that I suddenly needed to stay awake several hours longer than usual, I'd try to go to bed too early (too early for me meaning 22-24 hours of being awake). My sleeping pills would then wear off before I fell asleep and I couldn't take more. This meant I'd consistently sleep only 5 hours when my body needs 18 after being awake that long. Even after being more exhausted than I'd ever been in my entire life, I'd be awake 22 hours. This extreme deprivation led to me constantly being sick, which of course just made it all worse. You'd think that with such little sleep at least my REM % would be high, but it wasn't. In fact, it was so low that my fitbit wouldn't even give me an exact percentage, but it was around 5% when I need at least 20% in a super long sleep. If I got sick with coronavirus sleep would be even more destroyed because since it's a lung infection I wouldn't be able to vape to help sleep. That means if I got coronavirus I'd go back to being awake 33 hours everyday, which means my sickness would be very severe. Plus, my frequent vaping probably means my lungs aren't amazing. With the combination of being awake 26 hours, pain being unbearable, and having lots of risk factors for the virus, every night I get quite depressed. I have to vape for sleep but while I vape I think about how it makes me more vulnerable to the virus and all this shit piling on causes something like panic attacks. Usually I could read books to distract myself and help to fall asleep but my pain is so bad after being awake that long I can barely read now. I'm told by doctors in my family that I'd definitely need to be hospitalized so I can be given sedatives to allow rest to boost my immune system. Except, as you know, I don't absorb/metabolize medications properly so who knows what lengths they'd have to go to. As soon as the virus started spreading in Toronto I started thinking about fleeing to my family cottage in Peterburough. When my uncle who I'd been living with got sick after returning from France (which was being hit hard with cases) it was the last straw and I left. In the end he probably didn't have the coronavirus, but it's good to avoid getting sick with something else anyway. I've been here for almost a month now. At first I was mostly here by myself, but now that the legislature is closed my mom is here with me and taking good care of me. She's the only person in the world who's allowed to go anywhere near me until the danger has passed. I cancelled all my in-person doctor appointments. In other words, we're taking no chances when it comes to my safety.
Lastly here's a very important video on what it's like to have illness related chronic brain fog. It helps explain what may seem like strange behavior:
https://www.facebook.com/watch/?v=884440745322184
