I don't remember signing up for nightly torture; let me just check my notes here... Yep, no record or recollection of doing that. Then why oh why is that what's been happening?? Sleep deprivation is a literal real world torture method and obviously so is inflicting pain. My rebellious body has decided to do both at the same time every night, and the defective, rickety piece of crap likes to ramp up the intensity on a weekly basis. I am alluding to the fact that I am now unwillingly awake 32 hours virtually every single day. Last week it was 30 hours. Two weeks before that it was 29, and so forth. This isn't the way it's supposed to go! My last ketamine infusion seems to have no better long term effect than if I was infused with tap water. The preparation and aftermath of each infusion is incredibly uncomfortable, and to go through all that for literally no benefit is maddening.
The last 6 hours I'm awake are always pure hell. I'm so exhausted I can't even read a book before bed, and watching TV isn't an option because the light will keep you awake longer. I just sit there doing nothing while vaping for hours on end. I can only fall asleep when I'm so tired that I can no longer keep my eyes open. Attempting to go to bed anytime before that will automatically ruin the night, which means ruining the next 32 hours since that's how long I'm awake for. Imagine lying in bed awake while more exhausted than you have ever been in your entire life knowing that because of a tiny mistake the next 2 days will be completely unproductive and indescribably uncomfortable. Another easy trap to fall into is getting to bed literally a few minutes too late and once again ruining the night due to microsleeps. Microsleeps are involuntary sleeps that last anywhere from 1 second to 30 second. They only really happen when you're incredibly sleep deprived. For whatever reason, when I get a microsleep it completely removes all my sleepiness but not my exhaustion, so drifting off for 5 seconds always means I'll be awake at least another 5 hours. This means I have to perfectly predict the right time to go to bed and I have to make this crucial decision while high, sedated, and sleep deprived. All on a nightly basis.
There has been some good news since my last blog post, I had talked about how I was in a crisis due to the pandemic shutdowns because it meant I lost access to my vital therapeutic massage treatments. I had to gobble down methadone pills four times a day instead of one because my pain levels were a constant 9/10. I had to put the course I was doing on hold for quite a while. As soon as the shutdown ended and massages came back I was able to bring the methadone dose back down to one pill. Now I'm doing 3 university courses at once for the first time in my life though to be fair they're easy first year courses. I did a very difficult summer course on nuclear weapons history and managed to snag an 82 grade. The problem is I'm terrified that things will shut down again in the middle of the current fall semester which would be a complete disaster. I'd have to drop every course or find a way to defer them somehow. Even if things don't shut down, if I try to take harder courses again next semester I'll be screwed and almost certainly won't be able to handle 3 at once.
Honestly I think I probably feel more depressed now than I ever have been since my diagnosis in 2014. The primary cause is despairing at what seems like the complete hopelessness of my situation. Ketamine infusions were a last resort after trying everything else and even that has stopped working. I'm awake longer each week and it's legitimately driving me insane. I started seeing a therapist two months ago but temporarily stopped last month since I didn't feel I needed more of it yet. Now I'm far worse than I was then so I've decided to restart the sessions today. When you're shedding tears on a daily basis that's a good sign that you need help.
When I feel this way other issues that have been weighing me down also come to the forefront. I was talking with some family members and someone who I have a history with was brought up. This individual and I were known for having frequent political arguments on Facebook. In one of these arguments the topic of my illness was somehow brought up. As you may know, if I had children they would have a 50% chance of inheriting Ehlers-Danlos Syndrome. I mentioned that I felt I can't have kids both because I wouldn't want them to have a 50% chance of suffering like I suffer and also that I'm aware that if I can't even take care of myself how am I supposed to care for an even healthy child whether biological through adoption. The response of the person I was arguing with and his friends was to call me a eugenicist. That would be true if I was saying no one with EDS should have kids but that's not what I think at all. I just know it's not a good idea for me to do it and would never tell anyone else how to make this deeply personal decision. To this day I'm extremely upset by this event. It's not uncommon for me to break down when I despair about the 99% chance I won't have kids, and to be labelled as a eugenicist for that is extremely infuriating. If someone with a genetic disease that meant their potential kid would not live past the age of 2 would that person personally choosing not to have kids make them a eugenicist? Now whenever I think about that person I remember what they said and that train of thought brings my mind to the no kids reality and so my mood darkens whenever that person is brought up. That thought process continues because I naturally think about the underlying reasons I won't have kids, that being the reality that my EDS symptoms will almost certainly worsen with age. It's hard to be optimistic about having a happy and healthy senior life when you have horribly defective joints. It's hard to know for sure how bad it would be because mass EDS diagnoses are relatively new so most elderly with EDS aren't diagnosed. I think all these worries are legitimate which is why my current depression or miserable state or whatever you want to call it is quite rational.
As a side note, my inability to have kids is also why I'm so attached to the summer camp I attended and worked at as a writer, actor, or counsellor before the pandemic. Losing access to this creative outlet indefinitely is another hard hit on my mood. Many people are extroverted, meaning you feed off the energy of interacting with others. I feel that I am especially extroverted when it comes to entertaining kids. They don't care about my physical limitations. They just appreciate my ability to make sure they have fun. So when half a dozen campers separately come up to me to tell them I made their summer then that in turn makes my year. To lose that opportunity is a hard blow as well. Hopefully one can understand the nature of my current mental health crisis and why I'm worried there may be no resolution for it.
