I shall cut right to the chase this time, because there’s a lot to cover. I had another one of those infamous FD autonomic crises.
For those of you who may not know what that is, here is a super brief explanation:
Basically, my vitals go crazy all of a sudden… Heart rate, blood pressure, etc. All of these things can affect my organs, and not to even mention, my LIFE.
These are random… Super fun, right?
Can be caused by pretty much ANYTHING (i.e. a big emotional event, a common cold, or simply seemingly out of the blue ) … Again, super fun!
I know this was a very short and nondescript explanation, but well it’s hard to explain.
Long story short, I can wind up in the hospital from anywhere between a few hours to a few days (longest I can remember was about 8 days).
Because of an operation I had as a baby, I can’t vomit, so this whole thing involves a lot of retching instead… It’s really a lovely sight, as you can imagine.
The treatment? Sedate me! Valium does the trick, so I just sleep on and off and am very drugged for the duration of the hospital stay.
Then? It ends just as quickly as it starts. I wake up from my drugged sleep, and bam.. I’m me again. Only a more tired / weak version for a little while.
Side note: my vitals sometimes still are out of whack once I’m out of crisis, meaning hospital staff never want to let me leave right away. This is when the most frustrating part begins… I feel all back to normal, yet am still stuck in a bed, hooked up to monitors. Have I mentioned how fun all this is?!
So! This one was about 48 hours, all of which I spent in an ER bed, as the hospital was way too busy to find me a room. Thankfully, it was fairly private with a curtain and my own little space. I was also lucky because I had people with me while I was there (my wife and my mom). We also got a ride home from my wonderful in-laws. Guys, I said it then, and I’ll say it again… You may want to fumigate that car.
Anyways! These events always make me think about a lot of things. Without boring you all to death with my many ponderings, I will just stick to a few of them.
The hospital staff was amazing, I felt well taken care of, even amidst an insanely busy pandemic, so thank you to The General Hospital in Ottawa, Ontario.
I really REALLY hate FD sometimes. I know I always advocate for disability pride and acceptance, which is all true and valid, but it is also okay to get frustrated sometimes. My disability can suck at times. Period. These random crises can, without warning, really throw a wrench in my life. Life has to stop for both me, and those around me. As someone who loves keeping busy, this is very hard for me. I hate asking for help and having to rely on people. I know, I know, this is something I need to work on. However, it was important for me to be honest with all of you. It is okay to hate your disability sometimes.
I feel very lucky to have people around me that are willing to step in and help. This means the world.
This one might be TMI, so feel free to skip if you don’t enjoy bathroom humour. I really cannot stand using those commodes in the hospital. Not only are they super uncomfortable, but it also results in others around you (including staff) having to experience things that I would really rather they didn’t. Also! I need to ask for help… NOT FUN.
These crises always come with self doubts and guilt.. What caused this? Could I have avoided it? What did I do wrong? I hate uprooting everyone’s lives, etc.
I do feel like I’m getting better at talking about my disability with strangers. This is huge for me, because I used to always shy away from these conversations. This time, even in my groggy state, I was happy to chat with nurses about FD, and even my work. So, I shall take this as a win!
Okay, I’ll leave you guys with a light one: The hospital actually had ready made thickened drinks for me! This was so exciting, as I thought they had been discontinued. Pre-thickened apple juice is amazing. Still dreaming about it days later.. Highly recommend 🙂
Hope you all enjoyed my ramble… Here’s to not having to share these stories ever again.