Wednesday 1 December 2021

Chronic

 

And I obviously failed my attempt to blog weekly. Last month I had an awesome weekend at Helsinki Book Fair, where my first novel was released, and on top of that I also had to help my mom pack, and send her to Saudi-Arabia, during the same weekend. After that, I pretty much crashed down, and any routine I had managed to build before that weekend fell apart as well.

So, I figured I'd write about why this happens to me.

I've always struggled with different degrees of burn out, fatigue and being overwhelmed because I'm autistic. It wasn't confirmed until this year, but obviously I've always been this way. That alone would be enough to make me tired after spending a weekend surrounded by masses of people, especially after social distancing for so long.

Unfortunately, there are co-morbidities.

These are also chronic and often linked conditions, but the symptoms can vary greatly throughout life. A lot of my fatigue has to do with how my heartbeat rises and my blood pressure drops abnormally when I stand up. It's called POTS (Postural Orthostatic Tachycardia Syndrome), and I was once tested for it by a nurse who didn't think I needed an official diagnosis. It's still not a very well known condition. Ever since I was about ten years old, this caused me to faint a lot, or my vision to black, sometimes for a long time. My worst symptoms with this have been in my early twenties (so far at least). Heat can also be a big problem with POTS, and at this point in my life it got so bad that I could rarely take a shower without blacking out: sometimes on the bathroom floor, sometimes I had time to throw on a bathrobe and stumble to my bed. Luckily, these symptoms have been a lot easier on me for the past few years! I think the last time I completely fainted was in 2018. Sometimes POTS gets less severe with age, so I hope I'm one of the lucky ones.

What has been getting worse during the past couple of years, however, are issues caused by my hypermobility. Currently, I'm diagnosed with a Hypermobility Syndrome, but it's likely that it's actually EDS, I just haven't been able to get to a doctor who would know enough about it to diagnose that one. I'm lucky that I've never had a full dislocation in any joint, but I have daily wrist subluxations that get in the way of drawing, writing and pretty much anything I'd like to do with my hands, and I have frequent rib subluxations, (Lol, I have one right now as I'm writing this) which are not very severe, they just hurt when I breathe deeply or cough, and sometimes I can't wear a bra. They go back in their own time. Other than that, I've only had very small and infrequent subluxations in other joints, such as my knees, ankles and shoulder area. Nothing I couldn't fix myself.

An example of hypermobility in the wrist. By the way, if you can do this, please don't do it, it's bad for you.
 

But, dislocations are often not the biggest problem in Hypermobile EDS, which is what I likely have. It's the pain, and the other stuff caused by the overexertion that hypermobility causes to your body. EDS causes differences in connective tissue, and my worst problems right now are foot and back issues. During the last couple of years, my feet have flattened so much that they've "grown" a full shoe size. Standing still is the absolute worst, and I used to cope with it by standing on the sides of my feet instead, which is obviously not good for my ankles. Usually I cook in a saddle chair now, because I can't stay on my feet for that long. Luckily, I can still walk and dance for a longer time than I can stand still. My back pain is also mainly caused by standing, sometimes sitting. I have mild protrusion and degeneration in my lower back, and Tarlov's cysts, which have not yet been proven to have a link with EDS, but it's suspected to. Obviously, I'm not a doctor, but it would make a lot of sense for there to be a connection in some cases, since I, for example have quite hypermobile knees, and that puts a huge amount of pressure on your lower back, so if the connective tissue in your back is also weak, it would make sense for you to have all of these back issues earlier than someone with no connective tissue disorder.

So yeah, this is not an exhaustive list of my issues or anything, but basically I have a lot of chronic pain and fatigue, and after a day at the book fair, I had to sleep through the next one. After that, I spent another day at the book fair, and helped my mom pack for the next one (it literally took an entire day). So, given that this weekend was also full of emotional stimuli and stress, it basically took me two weeks to really recover from it. This is a normal life for someone with a disability. You crash down, recover slowly, and just when you start to think you're doing okay, sometimes even fool yourself that maybe you're not that disabled after all, something comes your way and makes you crash down again, and then you repeat the process.

Not to sound doom and gloom. :D I just decided to write about these issues now, because I have a habit of only talking about the good things in life. I'm realizing it's partially due to the fact that invisible disabilities are often not recognized or taken seriously, which has led me to develop a coping mechanism of always pretending to be "normal", always pretending to be fine, no matter how much pain I'm actually in. Sort of like a wounded animal trying to hide its injury, because showing weakness makes everything worse: predators might pick you as the target, and your own kind might decide it's best to leave you behind, so you don't hinder anyone else.

Being able to pretend is a kind of privilege, but it's also not, because when you develop a coping mechanism early in life, you don't really know what you're doing, and you don't yet know the problems that this coping mechanism will cause you later in life. You don't yet know, that it will make your condition worse in the long run. I'm 28 and this is something I've learned only recently.