Dysautonomia Awareness Month: October 2015
Somehow, dysautonomia and all the illnesses under its umbrella have continued to be brushed off as a woman’s issue, exaggeration, not a big deal, “just live with it”, “I get dizzy sometimes too, have you tried drinking more water?”, “come on, I bet you’d feel better if you just got up and got out of the house”, or everyone’s favorite, “You don’t look sick, though.” As if every POTsie hasn’t tried slugging back a dozen bottles of gatorade and coconut water per day for weeks on end, as though we somehow prefer lying in bed or using a wheelchair to get around and depending on our friends/families for everything when two years ago we could bike or run as far as we wanted, as if we haven’t all tried to convince ourselves in the beginning of our illnesses that it might just be in our head and gone out to do the thing, only to pass out doing the thing, or before we could do the thing. And what on earth does sick even look like?! No one can answer that question, I’ve found.
I’m putting salt in my coffee as I write this, and I have 32oz of water in a quart sized mason jar lined up behind that which I must drink just so I can take a shower without falling on my face (again). After I get out of the shower, the heat will have made all the blood pool in my stretchy veins in my legs, which will be extremely puffy and swollen and sting like crazy when my feet touch the bath mat. I won’t be able to dry off, most likely, so I’ll wrap up in a towel and cling to the walls on my way to rest in bed for twenty minutes, at which point hopefully I will be dry and slightly recovered. I will still be dizzy, hot-flash-y, have a bright red line across my nose and cheeks, and I will probably feel very nauseous for a few hours, sometimes even the rest of the day, but I will push on, salting yet another cup of coffee, salting my food, chugging water throughout my afternoon and evening, and I will struggle through my physical therapy exercises, I will quite possibly be too weak to pull my own damn covers over my body tonight, and that’s life with a very mild case of POTS. I’m one of the lucky ones, I can count my falls on my fingers instead of by the dozens. I’m lucky because in the morning when the blood pooling is at its worst I can lift my own legs, lean them up against the wall and flex until the blood goes back where it needs to be. I’m lucky that I can take a shower by myself at all, even if it’s kind of miserable. I’m lucky that if I bend over I don’t necessarily land on my head every time. But I know so many wonderful people who are not so lucky. I’m lucky that I’ve had my symptoms my entire life and they haven’t taken the sudden turn for the worst that I’ve seen happen to so many friends. So I do all the things (just less often than I used to) that my autonomic nervous system make so very complicated, and I try my best to only state what my reality is, rather than complaining about it. Life is this way, I cannot change it for myself or my loved ones. All I can do is educate others, soak up as much knowledge as possible, and keep trying my best to reverse my symptoms slowly over time.
October is Dysautonomia Awareness Month.
Please help us spread the word about malfunction of the autonomic nervous system and the many chronic conditions it can cause. There is no cure for dysautonomia, it is an invisible illness, and from day to day the symptoms swing between severe and less severe, so life with any of these illnesses is a roller-coaster, to say the least.
No one bothered to teach me about the autonomic nervous system. In a perfect world, doctors would explain these things to patients who are experiencing classic symptoms of ANS malfunction, as I am, and they would explain just how involved the ANS is in so many processes throughout the body. Normally, when you are in pain or experiencing stress, your autonomic nervous system ramps up your blood pressure, makes you sweat, and elevates your heart rate. When the pain or stressor is gone, your ANS should quiet…
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