Today I had my first severe “episode” in a while–about a couple months or so. For me, an “episode” is when my dizziness and weakness are so severe I cannot walk or use my limbs (my hands often freeze up and my body goes limp) as well as mild seizure-like convulsions. This one happened while I was in the shower, with little warning. My legs gave out from under me, and I had to shout for my mom. After she helped me into my bed, she positioned me ( propped up and legs bent, to help with blood flow) half my body frozen and the other half twitching, while I waited for it to pass. This one lasted over an hour. The longest I have ever had lasted almost four.
This is not the first time this has happened, but the first in a long time, and I have been feeling better for a while. I guess I got lulled into a sense of security. Outside of my episodes, I still experience the more general symptoms–nausea, weakness, fatigue, etc–nearly everyday, but I have learned to mostly manage them (I still have my good and bad days).
I haven’t been taking as good of care of myself as I should be. I have been lax on my meds and supplements, not doing my exercises, not drinking as much as I should, and been way more stressed lately than is healthy. But with everything in my personal life, plus work, and the end of the semester coming up, I haven’t had time.
Today was a little bit of a wake up call.
While I may go a month or two feeling “healthy” I have a chronic illness that I will have for the rest of my life. Sometimes when I am feeling better, it is easy to forget that I am sick. I want to forget that I am sick, and be normal for as long as I can. I am so stubborn and independent, I think that if I act normal and healthy enough, I will be. But apparently it doesn’t work that way.
I am recovered (for the most part) now, and am hunkered up in bed, making the most of my vegetable status..
With Netflix (Parenthood, Season 3…if you haven’t found this show yet, go watch it now) Gatorade (salt, to help blood pressure), chips (salt), and my adorable, fat, furry nurse (who is here for the chips as much as for moral support).
My illness is a very rare and unknown condition, even among the medical community. The average time it takes for a diagnosis is 5 years (mine took over 7). It is called postural orthostatic tachycardia syndrome (or POTS) and for those of you (most of you) who haven’t heard of it, it is essentially a heart condition that means my heart is weak and has to work twice as hard to pump blood, especially when upright. This leads to tachycardia (rapid heart rate) which equals dizziness, fainting, seizures, and all sorts of other fun things.
For more information, check out: http://www.dinet.org/index.php/information-resources/pots-place/pots-overview