What’s it like to have dysautonomia? Let me take you through a day in my compression socks so you have some idea of what I fight through on a daily basis.
Imagine it’s a new day. You wake up and get out of bed. You do your business and then brush your teeth (with an electric toothbrush, by the way.) As you’re doing this, you place two of your fingers over your carotid artery. Your heart rate is rapid, probably in the 120s, maybe pushing 130. And all you’re doing is standing up, brushing your teeth.
You take your meds and some salt tablets. You then go into the closet and fight with your compression socks to get them on, which leaves you out of breath.
At this point, you know your time is limited before things get worse, so you grab your phone, your iPad, your iPod, your journal, a couple books, your chapstick, and your 30 oz container of water and head into the family room. You set your things down on the table next to the armchair. As you are doing this, your head starts to feel detached from your body. Next you walk into the kitchen, when your feet briefly lose sensation every few seconds. Then you pour yourself a 16 oz glass of Gatorade (grape-flavored G2, of course) from the gallon container in the fridge (made from the powder) and also grab a few 12 oz bottles as well. It’s been about 10 minutes since you arose from bed, and your heart is still pounding away in the 120s range. More lightheadedness and dizziness assault you as you carefully stumble your way back to the family room, and as you approach the armchair, you feel the need to take huge, deep breaths. Setting your Gatorade down, you finally flop into the chair and turn on the electric blanket, reclining the chair so you aren’t sitting up straight because you can’t right now.
And that’s just the first ten minutes.
You chug your Gatorade and inhale half a bag of gluten free pretzels, trying to get as much salt into your system as possible to increase your blood volume. You’d like to write in your journal, but attempting to sit up straight brings a wave of lightheadedness crashing down upon you, so you return to your reclined position. You kill some time checking your emails, your Facebook notifications, Twitter, Instagram, and your blog stats, which have unfortunately dropped off considerably lately. Once you’ve completed those tasks, you realize you have to go to the bathroom. By now your heart is at a nice happy rate in the 60s. You dread getting up out of the recliner because you know what’s going to happen. As soon as you stand up and make your way to the bathroom, your heart rate is well over 100 in seconds. It stays there until you stumble back to the family room, lightheaded, dizzy, and short of breath. You flop back into your chair and recline again.
Realizing you don’t even want to read the book you brought over at the moment, you quite literally have nothing to do except start at the wall, waiting for time to go by until you feel well enough to adjust your position in the chair. You get up to go get something or do something, only to find yourself standing in the hallway ten seconds later with no recollection of what you were going to do, and you never remember what it was. Stupid brain fog. After a torturous trip to the kitchen to eat something, you find yourself feeling slightly better, so you sit up in a normal sitting position and write a bit in your journal, though you have to take breaks to recline yourself every few minutes to endeavor your heart to slow down.
Before you know it, it’s time for the daily ritual you’ve come to hate the most: showering. So far you’ve been able to determine that you have about eight minutes from when you step into the shower to when things start to go south. A shower is probably the worst thing you can do for yourself as someone with dysautonomia: you’re standing still, under hot water, with your arms above your head, occasionally bending over to do things such as washing your legs and feet. Sometimes you can make it all the way through without a rest, but occasionally you find the need to sit on the shower bench for a moment to recover before you can stand again.
But every now and again, you need to shave your legs to ward off the Wookie hunters. Your old way of shaving standing up with your leg stretched up the wall (former dancer) is no longer possible with dysautonomia. So now you have to sit on the shower floor, right on top of the drain and under the spray, which sometimes seeks to drown you depending on where you have to angle yourself to shave the right areas. But sometimes, even this is too much for your body. As your ears begin to ring and you feel yourself start to tilt forward, you throw yourself backwards out of the spray to collect yourself. It’s not the first time you’ve almost blacked out in the shower and it won’t be the last.
After this hateful experience, you need to sit down and take deep breaths on the bath mat as you dry and dress. The thought that possibly needing to sit on the shower floor for the entire shower in upcoming days floats through your mind. A shower chair wouldn’t help because you get lightheaded even in a normal chair-sitting position. Plus your shower is too small anyway.
Exhausted from the effort of just being upright, you eventually just decide to go to bed before your symptoms get worse again. And then you get to wake up and do it again. And again. And again. And again…
This is a true account of what a day looks like for me now. I do have some good days where I can sit up longer. I have days where I can walk around the house, although in a constant state of lightheadedness that I’ve just learned to get used to. Recently, I’ve even had some days where I can do multiple tasks, like two loads of laundry and shower and do some light cleaning!
At this point, because I don’t have an exact diagnosis yet, it’s hard to determine what my treatment options will be. There may be further improvements on the horizon, or my symptoms may continue to get progressively worse. I just need to wait for the results of the testing I had done on January 11th and January 13th and develop a plan moving forward. I’m hoping the prognosis is good because I need some good news in my life.