Happy Dysautonomia Awareness Month! I’ve been trying my best to spread awareness to others…every October I make it my mission to educate as many new people as I can…just ask anyone on my Facebook friend list! I’m sure it’s becoming a bit obnoxious…but it’s so important! It’s because of this awareness month that I decided it was time to sit down and get the blog juices flowing again…so here we go…
If you’re looking for a blog entry about being positive and fighting your way through this, today’s edition may not be for you. If you look back over my journey you will find many posts with this positive undertone, but not today. No, today is dark, but it will be honest.
After a stretch of time of feeling really good (for me…which is probably 60% like my old self) this flare has totally knocked me on my ass. It started with a few days of back to back (blinding, sleepless nights, dizzy, vomit inducing) migraines, followed up with days of palpations and inability to control my own body temperature, and topped off today with extreme fatigue, dizziness, and bradycardia. For those who don’t know what bradycardia is, it’s when the heart rate is too slow. Typically, a POTsie has tachycardia (postural orthostatic TACHYCARDIA syndrome…) but because our systems are so out of wack, spells of our heart rates being too slow aren’t unheard of. Let me tell you though…it is scary as hell. My body has been trained to not totally panic when the tachycardia sets in. I can tell myself “you’re not going to die, it’s okay, just breathe, sit down and breathe…” and I can push through the 175-200 beat per minute heart rate. This afternoon, when I was *lucky* to hit 50 beats per minute, I was terrified. I was so scared that my heart was actually going to stop beating. How unfair is this?! I have to chose between feeling like my heart is going to beat so fast it’s going to explode, or beat so slowly that it just may stop?! No thanks, body. I’d like a refund!
Anytime a new symptom pops up like this so does a new level of anxiety for me. I know that with this syndrome I’m supposed to “expect the unexpected”…but holy crap…a person can only take so much before the darkness sets in. I could feel the depressive thoughts as they started to creep in…it felt like a wave that washed over me and the pressure was too much to stay afloat. Through my sobs this afternoon my eight year old asked me, “do doctors ever put people to sleep when they are sick…like they did to Gabby?” (his beloved Pug) Great. Now my baby is worried, which makes me worry even more. My four year old came over and put her hand on my chest and said “it’s okay, Mama, your heart is just broke today.” How unfair that a four year old even has to think about this?! And then the depression and fear increases by the second because I worry that I’m impacting so many other people negatively. It’s a rabbit hole that feels endless.
So, why share this? If there is no silver lining, then what’s the point? Because chronic illness isn’t just happy quotes and funny memes. It’s not just being strong and powering through..it’s a life altering, at times debilitating, depressing, scary, self-esteem crushing, roller-coaster from hell…and I want to get off the ride!! (if only that were a choice!) I guess my point is this…it is okay to NOT be okay. And instead of pretending (for other people) I’m choosing to lay it out there. I know my fellow POTsies will understand…sometimes it’s MORE exhausting to pretend you’re okay than it is to have POTS. Today was bad. Really, really bad. Tomorrow may be too…but eventually the ride will twist again and I’ll be back on top…even if it’s just for a moment! Hopefully I’ll remember to write that day too…thanks for reading and coming along for the ride!