Betrayal

I have so many things I can choose to write about; either through firsthand experience, witnessing something, or thinking about a topic I want to drum up conversation for. Yet, I keep circling back to one topic in particular, as it becomes more urgently pressing itself to the forefront day by day. It is my opinion that betrayal is the second worst emotion humans can experience (outside of devastating grief). If you’ve ever been cheated on, or straight up lied to, or abandoned by a friend group, you know exactly what I mean. While I have experienced all of those and consider them to be traumatizing experiences, the worst right now is the betrayal of my own body. Once so healthy and vivacious and full of life has now been reduced to being hindered by daily task and chronically ill. I seem to never feel good anymore.

I implore everyone to treasure their health while it remains; things really can and do change in the blink of an eye. I swear I went from feeling practically invincible (except for my knee), to now feeling permanently handicapped. I don’t mean that lightly, it’s just that as of lately, my normal routine is disrupted and I can’t function at a regular capacity on any given day. What started as debilitating migraines has progressed into so much worse than that. Things such as driving, sleeping, walking, going to the gym, training jiu jitsu, etc., have all become daunting and difficult tasks. I never know when one of those will suddenly be rendered impossible in my current state.

There is nothing that could have prepared when me when these migraines began for the things to come.  I know I have written about some of my health issues before, but now I am starting to get answers just as my symptoms are increasing in severity. A type of dysautonomia called adrenergic POTS. Regular POTS is when people experience syncope (fainting) upon positional changes, such as standing up. Usually they experience a sudden drop in blood pressure and an increase in heart rate and will get light-headed and then faint. For me, this type of hyper POTS causes my blood pressure  to actually spike quite high and I am unaffected by different changes in position. It effects my adrenals (which is why they initially thought I had an adrenal tumor), and jacks up my norepinephrine, which basically means my body is in a constant fight-or-flight mode and can’t regulate stressors like epinephrine and cortisol. This is a  blood vessel disorder, so some of my blood vessels constrict at the wrong time and some dilate at the wrong time, leading blood to pool in some areas of my body and be cut off from other areas of my body.

When I first started having my dizzy episodes, beginning approximately one year ago, it was pretty scary. Out of nowhere my vision would blur, particularly in my right eye, which is where I also have an astigmatism. Like, literally out of nowhere, I wouldn’t be able to see straight and my entire environment was spinning. I definitely couldn’t drive, and even walking proved difficult as I would be leaning a certain way and not in a straight line. I looked and felt as inebriated as your token drunkard.

More and more frequently, I started getting these bouts of extreme jitteriness and feeling “amped up” as if I had taken a bunch of caffeine or amphetamines. It used to happen sporadically, with plenty of space between episodes. My hands would shake like someone with a mild tic. Then, I started losing consciousness and not being able to regulate my body temperature. I’ve had actually quite a few more symptoms outside of those mentioned, but these are the only ones that truly terrified me. In the past, these would only happen after a certain trigger (none that I could pinpoint specifically), but some type of food or drink and exercise seemed to catapult these episodes if I was already feeling “off” that day.

Lately, I haven’t even needed a trigger. The past few weeks have been some of the most frightening of my life. Training even remotely hard would make my chest all tight like I couldn’t get oxygen quick enough, and my body temperature would be burning up, and I would either pass out or get close to passing out. Last week this took place, and I seemed to suffer from facial paralysis for 10 minutes. I couldn’t move my mouth well enough to speak, and I was super close to going to the emergency room, but I didn’t want them to dismiss it as anxiety again and send me home without running any tests, nor did I want to spend hours in a waiting room. These episodes seem to pass after some time, 10 mins until the most severe dissipate, and about 30-40 minutes total until I feel normal again. Or at least, what I consider my version of normal.

The past couple of weeks, I have woken up smack dab in the middle of the night on a few separate instances, with my head utterly throbbing in pain. Felt like my old college hang over days. Then I am stumbling around in the dark, desperately trying to navigate to the location of my sumatriptan-filled syringes, and having to finagle administering the injection while half asleep. This occurred last Thursday evening, and on Friday, while waiting to head up to our Open Mat at the gym, something strange occurred. I was sitting at the kitchen table doing some type of word puzzle, when all of a sudden I was overcome with a whoosh of severe exhaustion. So much so, I was worried I was going to pass out. I went to lie down on the couch, and next thing I know, I am waking up 2 hours later. I was sad about missing Open Mat.

I have had a pretty stressful week thus far, and made the dumb mistake of voicing out loud that it could only go up from here. So then of course, I go to bed last night, already not getting the best sleep because this type of dysautonomia messes with so many different signals in my body, and one of them causes me to have to pee pretty much every hour if I am having an episode, which like I said, is pretty much daily now. Last night was one of those nights, and at about 3 in the morning, I woke up to pounding head pain. Then my brand new puppy unfortunately had explosive diarrhea and I was cleaning that up. I pretty much gave up on sleep and was just eager to get up already and have some coffee.

I was driving to my dermatologist appointment this morning, which I now go to due to adult hormonal acne. All this time I was wondering why none of the treatments worked, only to discover that my hormones are now completely out of whack because of this illness, which explains the (tmi) sudden need of laser hair removal and total absence of my period since early May. It’s about a 45 minute drive, and when I had approximately 10 minutes to go, I started to get extremely dizzy. Luckily I was close, and was able to make it to their offices before the dizziness got so bad to the point where I could no longer make out the road. I always keep Benadryl on hand, because for some reason, those antihistamines seem to help alleviate my symptoms quicker. I was hoping it would kick in before needing to get back in the car.

Unfortunately, as with most things, it got worse before it got better. While in the doctor’s office to discuss my skin regiment, I again got hit with the extreme fatigued and exhausted feeling, very similar to an adrenaline dump people experience with competition after the initial spike dissipates. They had to pull out the table so I could lie down because I knew I was going to pass out. They gave me a cool, damp rag to help, and after about 15 minutes, it subsided enough to the point I could function again. I was not only very scared by this ordeal, I was also so incredibly embarrassed and I am ashamed to admit that I cried. Some tears out of fear, some out of worry and frustration, and some because I am in dire need of these specialist doctor appointments that my insurance just canceled me on.

It’s truly terrifying to feel betrayed by your own body. I have no idea why it’s happening, and there’s no rhyme or reason to it either. The unpredictability makes it difficult for me to live day to day; scared to drive, unable to get proper rest, and always living in fear that it’s going to happen again. I sometimes don’t know if I am more scared for it to happen when I am by myself at home, or more fearful for it to occur in public where I would be embarrassed by all those who witness it. I’d say I wouldn’t wish this on my worst enemy, but if you’re evil enough, I hope this happens to you because it is absolute misery. I hate suffering like this and I feel so extremely defeated. I hope beyond hope I can get in with some specialists and experts in this field too. Until then, I will choose to remain hopeful that someone out there can help me find some semblance of relief.