Recently a bunch of friends have been asking me why I have a cane and if I’m alright. Well, no. Not really. I’m surviving, but recently just hasn’t been very good.
Last week (7/14-20/13), my vitals (heart rate and blood pressure, henceforth referred to as hr/bp) started going a little crazy, and my POTS symptoms started behaving rather unkindly. But I’ve been through worse with this, so it was okay. Until it wasn’t.
As the week went on, it started getting worse, so that by Friday, my vitals were very, very bad. They kept crossing back and forth between extremes, from high vitals, to low vitals, getting worse and worse each time.
Understand, I can take either-or. I’ve had really low vitals before, and I’ve adapted to them. I’ve also had really high vitals before, and I’ve adapted to those as well. I can generally deal with either extreme. But understand, going back-and-forth, back-and-forth all day, and going from vitals so low I should be passed out, to vitals so high, that if sustained, I would have a heart attack or stroke… that’s just exhausting. Eventually it got so bad that when I started becoming unresponsive to my family, the EMS took me to the hospital. I don’t remember anything between 8:30 Friday evening, and 2:00 Saturday morning.
I remember bits and pieces, but not anything very clear or whole, except one thing…
About the time I got to Duke, I crashed. All I remember is suddenly being very awake, and it felt like they had just given me some kind of medicine through the IV. I asked them if they did, slightly freaking out because my whole body went cold, starting in my head, then plummeting down the right side of my body, then moved over to the left side of my body through my chest, so that I was entirely numb. This happened in about five seconds. I remember them answering that no, they had not given me anything, and then taadaa, nothing but snippets.
Apparently my vitals had crashed. I don’t know what happened (obviously), but I remember at one point there being a bunch of doctors and nurses in the room. At about 2:00 AM I actually woke up, and I remember stuff from thereon. Anyway, to say that my weekend has been rocky is an understatement.
Hopefully this week won’t be too bad, considering I have a play that I’m doing! Anne of Avonlea, put on by Legacy Productions. But thankfully, Stephen is just absolutely fantastic and is allowing me to do half-days, by coming in the afternoon to practice my part. Plus, I have a great part! Uncle Abe Andrews, a crazy old Avonlea man who predicts the weather. So I get to sit down the entire time, have only about two pages of lines (which are dialogue anyway), and my cane fits the character if I need it that day! The church we’re in is also allowing us to use one of their refrigerators, so I can keep my own water and Gatorade cold. Plus, most of the cast are friends that I’ve known for a while and who know about the POTS. Hopefully I’ll be able to do this.
So, to the cane and the POTS. What is POTS? Why do I need a cane? EXPLANATION TIME!!!!!!!!!!!!!
First off, I have Dysautonomia, which is a dysfunction of the autonomic nervous system (ANS). The ANS controls those things that are automatic, and that we generally have no control over. However, there are some functions that can be slightly controlled consciously, such a breathing, blinking, etc. But overall, anything controlled by the ANS is now functioning improperly.
I’ve found it’s helpful to think of dysautonomia like cancer; cancer and dysautonomia are both umbrella terms, with much more specific illnesses classified therein. I have three diagnosis that fall under dysautonomia.
1) POTS– Postural Orthostatic Tachycardia Syndrome. Here’s an explanation of the Latin:
“Postural orthostatic” means my blood pressure changes when I go from a sitting-to-standing position, or any other change in position. This is because of NOH, or neurogenic orthostatic hypotension. It’s quite simple, actually. Basically, when I change positions, my blood pressure will drop because the mechanism that normally would regulate the expansion/contraction needed upon posture change doesn’t respond in time to my change in position. This could cause me to black out, or possibly pass out (I black out on a daily basis and have passed out about three times now). However, I’ll get to that part in a few paragraphs.
“Postural orthostatic tachycardia” means that not only does my blood pressure change, but my heart rate drastically speeds up as well to try and compensate for the lack of blood to the body. My normal heart rate for my age, weight, gender, etc. should be about 75-77bpm. However, folks who have POTS normally see their heart rate jump about 30+ beats sustained over a five minute period, so now my normal heart rate is about 115-125bpm, the equivalent of my body running, except I’m not. I’m sitting down, or just standing up. You can see the problem with that… And as you can imagine, it’s very tiring.
“Postural Orthostatic Tachycardia Syndrome:” it’s a syndrome because it is a collection of lots of annoying things all thrown in together. Fun, eh? This leads to the other two diagnosis.
2) Chronic Fatigue and Immune Dysfunction—
Um, just follow the link. They do a much better job describing it than I do.
3) Neurocardiogenic Syncope–
So, because of the nervous system causing my blood pressure to drop and the heart rate speeding up to counterbalance this, I pass out. “HI MR. FLOOR WANNA HUG??????” 😉
Now, why exactly do I need a cane sometimes? ANSWER:
Since the ANS controls the expansion and contraction of blood vessels, one of two scenarios happens:
A) The blood pools in my legs because the veins are too expanded, or
B) The veins and arteries are too constricted.
Both of these scenarios will lead to one of two results: either I pass out, because the poor heart, though trying it’s best, just can’t get enough blood in the brain, or my legs will go out from under me because they are too weak. The latter happens more often than the former. So, my legs are actually a lot weaker than they used to be, which is really annoying considering I used to run. I never ran competitively, but I was actually considering it before I got ill.
And sometimes, I’m just too weak to walk. So like several other POTS patients, I have a wheelchair for those bad days. Of course, I try to walk as much as I can! I don’t want to get deconditioned. But I just can’t walk long distances like I used to. So when I would have a bunch of walking to do, I use the wheelchair. But trust me, that’s not often.
So that’s why I have a cane, and that’s why I haven’t been around much in public the last year or so. But I’m starting to take my life back now. POTS won’t have me! It’ll take a while, as I take slow, but fully involved steps. But it’s worth it. For example, I just can’t do a full day at drama camp. But since I can do a half-day, that’s great! It’s a great first step to take. A little bit of a challenge, but definitely worth it, and definitely better than sitting around the house.
I know it’s quite stressful on my family, particularly my mother. But they keep reminding me, and so I am reminding myself, to take it slowly. Plus, I have great friends at drama camp, and I have no doubt that if they think I’m pushing myself too far, they’ll tell me to stop (they have already done that in other situations, actually, and even today, they still asked me how I was holding up). I am also really happy that my mom left me there by myself for most of the time today, since that shows that she trusts me to be taking care of myself. And trust me, I don’t intend on abusing that trust, because it means I’d be abusing my body. And trust me, there are very real consequences when you push your body.