When someone thinks of chronic illness, they think of the physical stuff of being sick, right? Like having no sense of balance and totally failing at yoga and most forms of dancing, or always carrying my giant Nalgene water bottle with me, full of some unidentifiable substance that usually tastes like Alka Seltzer. They might even think of me with my pimp cane… yes, a pimp cane. It’s blue and silver patterned and is super duper cute, you know- if you’re into the whole 21 year old, old lady thing….
The funny thing is- as much as the physical stuff is completely apparent a lot of the time and everyone is always amazed at how “strong you are,” and how “you’ve come so far,” nobody really thinks about how hard it is to be “strong” and to “come so far.” So even though I don’t use my pimp cane too often anymore, I can work out again, and generally am doing a lot better than just a few months ago by any standard, I’m still exhausted. It takes up a lot of energy to peel myself out of bed every day, drinking fluids out of the water bottle strategically placed on the floor next to me the night before, from the minute I wake up. It takes a lot of effort to work out through being dizzy with a heart rate that just will NOT come down below 190, when I’m just trying to go for a slow jog around the track at my gym like a normal person, then go back to class and have to participate in discussion about a book that I really couldn’t care less about, while chugging fizzy drinky stuff so I don’t see stars.
Above all, right now, it takes a lot of focus to walk through the snow.
No, seriously- walking through the snow is really hard! Up here at school in western NY, we’ve got snow just like the rest of the Northeast at this point. The ground is uneven and invisible, which makes walking across campus an adventure for the most coordinated of people. (I saw some girl slip and fall right on her butt today… not gonna lie, I may have giggled a bit. After she got up, of course.) Now stick someone who is constantly ‘potsie’ in the snow…
I’m like a baby giraffe. A graceful baby giraffe. I should be my own one-woman show. A comedy act.
Funny as it is, whenever I get stressed or exasperated or frustrated about things as simple as walking through the snow or writing a paper for school, or even just being at school, I end up getting potsie. I get all the same symptoms as if I were having a POTS issue, though my vitals tend to be okay. It’s bizarre, but that’s what anxiety will do for ya. It’s a huge challenge because even if I don’t feel tense at all, my body might be trying to clue me into what I’m actually thinking and feeling (and repressing, in most instances).
I guess the point I’m trying to make is that the challenges of chronic illness, from my experience, are not only physical. The physical and mental aspects of life are so intertwined that it’s often extremely difficult to tell the difference between them. Yes, we may ‘come so far,’ but even that progress takes its toll, and I have found that it’s completely normal to push and push for months at a time to get better, then break down for a week. It’s incredible and incredibly frustrating at the same time….
I don’t mean to complain, merely to make it known that improvement is often more challenging than we, as potsie people, make it appear- it’s two steps forward, and one back. Sometimes two forward and three or four back, and it really sucks. But this is our reality, and it’s something I am still getting used to, even four years into my POTS adventure. I’m not sure that I’ll ever get to a point of really accepting that if I get even a little stressed, my body goes all wonky, but it’s just one more Potsie thing to handle, I guess!
As always, If there’s anything in here so far that you can identify with, keep reading as I post. If you can’t relate, but want to read more about my journey as I carry on, keep reading. If not, then I hope you learned something about POTS.
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To all my fellow Potsies, good luck out there!
PS- I know this is super late, but shout out to Uncle Michael, Aunt Ro, and Giovanni! Potsie has proven to be a faithful companion. Here he is on his first day with me, then going out to buy food for my guinea pigs, Polka and Dot!