Dysautonomia Awareness Month – Monday

I started working a new job in August. Actually, because I am a graduate student and survive by gigging, I took on three part-time positions and crossed my fingers. Life circumstances have changed, and although I kept hoping I’d find my rhythm and start posting more regularly, mostly I’ve just clung to the tattered edge of my tired to-do list by my fingernails.

I really did want, though, to keep one “tradition” going: doing something for Dysautonomia Awareness Month. Dysautonomia is an umbrella term for any disorder of the autonomic system – the system responsible for the involuntary control over things like digestion, heart rate and blood pressure, temperature regulation, and far more. Some disorders can be fatal. Almost all disorders have the potential to be debilitating. There’s usually no cure for such disorders, and it’s estimated that around 70 million people around the world suffer from some type of dysautonomia.

A few attempts to get skyscrapers to light up turquoise or get a declaration from our city to go through have failed (thus far…), but I did get to go out last week and hand out information cards on campus and fundraise for a service dog to help me deal with my dysautonomia. Last year, I also blogged about what a week in the life of someone with dysautonomia is like.

I’m hoping to do the same this year. Without further ado, here is year 2 of the (chronically ill) graduate student chronicles, Dysautonomia Month edition!

Monday, Oct. 22.

I get up after about 3.5 hours of sleep. I don’t want to. My alarm clock is blaring, though – really blaring, and vibrating it’s little attached bed shaker device as well. I was always a fairly deep sleeper, and now with some ear trouble and the effects of the drugs I must take to manage my conditions, I can sleep through just about anything. When the pain lets me sleep, that is. There hasn’t been much of that recently.

I hurriedly throw everything for the morning together, guzzling cromolyn sodium in the shower and then filling up two more thermoses for my morning classes. I am still fighting medication side effects from Corlanor, and for the first few minutes I move half through a shadow world. Ghostly gold doubles following every flick of motion. Two mes throw back the covers, stretch, and then scream when it hurts. Two mes struggle into compression socks to support my saggy fat veins and keep the blood up where it is useful — nearer to my heart and brain. Perhaps I should mention here that in addition to Postural Orthostatic Tachycardia Syndrome, or a form of dysautonomia that means my body does not regulate my heart rate well when standing, I also have some form of EDS (and/or joint hypermobility syndrome). The collagen that holds my joints and body together seems to be breaking down, like elastic on a favorite pair of sweat pants that has gone through the dryer one too many times. My ribs are the most painful and sublux or even dislocate completely. Some mornings I still forget and stretch uncautiously. EDS also means that my veins are not as elastic and don’t tighten. One of my doctors compared it to a water balloon. Lying flat, the balloon is filled up fairly evenly. But when picked up, gravity pulls the water all the way to the bottom. The balloon becomes a fat teardrop. This is what happens with my blood when I stand up in the morning. Coupled with POTS, I used to struggle to stay conscious during the mornings, but now lifestyle changes and medications has helped that some.  Modifications like my butterfly-printed compression socks today, which should mitigate the brain fog of a chronically-ill non-morning person who teaches morning classes …  but hahaha, nope, it’s not improving my mental acuity any. I’m pretty sure I’ve forgotten something as I head out to catch a Lyft to work.

I LOVE teaching. I’m careful during class to try to go back and sit in between playing examples and writing on the board. Even with PT and working out, I sometimes have a short clock for how long I can stand before POTS or one of its charming comorbidities puts me down. I’m aware that at least at first, my class thought it was funny that I had two thermoses on my desk (is she really that into coffee?!?), was seemingly obsessed with my adorable white teaching chair, courtesy of the department (and the injured runner who taught before me), and sometimes staggered a bit or wall walked (wait… is that really just coffee…?!). By now, they’ve gotten used to it. They’re smart and observant. And so, so kind. I’m rather fiercely proud of these young adults. They’ll open and hold the heavy fire doors for me once I get them unlocked. There’s always a contingent that arrives ridiculously early and quietly turns on the lights and helps set up. Without being asked. They laugh with me now when I stagger and insist gamely that I CAN walk! And they don’t flinch when I finish one thermos of water and grab for the next, in an effort to keep POTSie, fluid-starved body hydrated and functional. I have yet to explain POTS formally to them, but I have had to explain about dislocating joints when I started the class with a dislocated wrist from stirring up almond butter. And word spreads fast in college music departments.

We survive class. I’m hopelessly charmed when, before the second section, another girl sits down to hurriedly eat her applesauce-pouches. I ask what they are (there’s so many cool pouch flavors), and she shows me. I show her my snack, a pomegranate fig bar. Allergy-friendly. We looked at each other and then traded half of our breakfasts with the other. I was so touched. Apple(sauce), a completely allergy-friendly, organic variety too, for the teacher. I think that’s a first for me. ❤

Office hours, in which I showed off the new textbook to my department head and caught up with friends. Also yeeps, roommate was on the road sooner than expected and I’d left the kitchen a mess. I catch a Lyft home at lunch.

And then comes the rest of the afternoon. I call up the rental insurance company, my health insurance company with two questions, get bounced over to pre-cert and talk to them, phone the nurses at the place doing my procedure Tuesday afternoon, and chat quickly with my mom. My body gives out before the list of chores does, predictably, and I’m taking a breather and drinking more cromolyn when my roommate arrives, exhausted and mussy. She laughs at the kitchen and heads off for a nap.

I flop for a couple hours and then, wonder of wonders, get a writing gig. It’s editing, it’s going to be something like an 18 hour turn-around, and it’s not the best timing for me, although I can’t quite remember why. I take it.

To bad it didn’t come in a wee bit earlier. It’s time to grab my jacket and head out, via shuttle and then an entertaining the-sidewalk-is-lava! stagger (thank you again, POTS and EDS, for messing up my body’s proprioception) to a Great Clips hair salon. I get to explain to my hair stylist about Ehler’s Danlos and Mast Cell Activation Syndrome (or MCAS) while we watch my skin turn bright red, even without using any hair care products. MCAS means that my mast cells, which release all the lovely chemicals that make your nose run when it’s pollen season, are overactive. Also, I seem to have a little more than the normal amount of them as well. While for most people, allergies are an annoyance, my mast cells plunge me into anaphylaxis at odd triggers. I wonder about taking Benadryl before my next hair care appointment. Instead I walk into campus and go to the gym. I won’t get to shower for a few days following my nerve block Tuesday afternoon – or at least not good, hot showers – so I want to enjoy my pool time today. And get whatever floating chemicals are about off my skin – I am thankfully not allergic to chlorine.

I can swim, partly because it’s horizontal. Blood stays in a nice, even layer. I shower using the disabled areas so I can sit, because after a workout I’m generally off-balance and staggery. I will leave if there is not enough room and there is someone else more in need of it, but so far I haven’t run into that situation. I find myself thinking about wheelchairs as I fight to make it to the bus, but I do make it. My ribs are screaming at me. I’m still grinning from the joy of the pool and my applesauce-fig bar exchange this morning. Sometimes you really can be about ready to scream from pain and still be able to dredge up a happy memory to make you smile. It might be more of a grimace, though. The other bus riders at least give me a lot of space…. ooh, I should remember that.

Dinner. And then I remember: I need to fill up med cases tonight. My medication schedule is complicated. One doctor tried to suggest having a pharmacy fill up med packets for me, to save me the trouble (and reduce any errors I might make, I am guessing). But it didn’t look like it was covered under my insurance, my pharmacy wasn’t able to support it, and after reviewing my meds and schedule with a pharmacist, he recommended I keep on as I had been. I have to take medications frequently.

It’s already very late but there’s nothing for it, so I sit down and spend an hour and a half filling up containers that are advertised to septuagenarians for holding seven days’ worth of pills … they hold one day for me. It’s not exactly boring, but it’s not exciting and I find it emotionally draining. I split that load by putting in a TV show. I go through two and a half episodes and I really have no idea what went on in any of them, but I’m not as frustrated with my task either.

Then I start to fight through my next job, trying not to whimper when pain stabs. I have pushed pain med boundaries quite far now. When I get up, I want to rip the compression socks from my itchy legs. I can see bright splotchy rash/hives across my neck, chest, and yes, stomach as I brush my teeth. I have pushed pain tolerance too far and am too tired, and my mast cells are in revolt, joining forces with POTS and EDS. I send in some frantic requests for information, read for a half-hour to wind down from work, and then try to get comfortable. And try again. And again. It’s 3 am.

Happy … Monday.




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