Explaining What's Wrong With My Heart | How POTS Affects My Life
Are you curious about postural orthostatic tachycardia syndrome, AKA POTS, or just wanna learn about one of my chronic illnesses? Today I'm going to tell you about how POTS affects my body and my life.
Watch the video below or read on for the full transcript.
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Postural orthostatic tachycardia syndrome is one of many types of dysautonomia. According to the dysautonomia information network at dinet.org, "Dysautonomia means dysregulation of the autonomic nervous system. Dysregulation of the autonomic nervous system can produce the apparent malfunction of the organs it regulates. For this reason, dysautonomia patients often present with numerous seemingly unrelated maladies. Symptoms are wide ranging and can include problems with the regulation of heart rate, blood pressure, body temperature and perspiration. Other symptoms include fatigue, lightheadedness, feeling faint or passing out, syncope, weakness, and cognitive impairment. Autonomic dysfunction can occur as a secondary condition of another disease process like diabetes or as a primary disorder where the autonomic nervous system is the only system impacted. These conditions are often misdiagnosed."
More specifically, POTS "is characterized by the body's inability to make the necessary adjustments to counteract gravity when standing up. The defining symptom of POTS is an excessive heart rate increment upon standing. However, as you will discover, there are a multitude of other symptoms that often accompany this syndrome. As such, POTS can be a difficult disorder to detect and understand."
Before I dive into how POTS affects me personally, I want to go over the list of symptoms that dinet.org says are common among all forms of dysautonomia. Spoiler alert, I have each and every one of these symptoms.
difficulty sitting or standing upright
dizziness, vertigo, and syncope AKA fainting or pre-syncope
fast, slow or irregular heartbeat
chest pain
low blood pressure
gastrointestinal disturbances, nausea
visual disturbances
weakness
shortness of breath
mood swings
anxiety
fatigue and intolerance to exercise
migraines
sleep pattern issues
frequent urination
temperature regulation problems and heat intolerance
concentration and memory problems like brain fog
poor appetite
sensitivity to bright lights and loud noise
irregular pupil dilation (Side note: there's nothing quite like someone making eye contact with you and exclaiming, "Are you okay? There's something wrong with your eyes!")
Another side note: I bet that depression is another commonly shared symptom among dysautonomia patients, but I'll get to that more in a second.
If this is your first time learning about POTS comment below and tell me which common symptoms surprised you the most.
Now that you've had a crash course in dysautonomia, I wanna share with you how POTS affects me. I think the easiest way to do that will be to take you through some of my daily activities and explain how POTS affects them.
So first, when I wake up in the morning, I am never actually rested; POTS really impacts my ability to get deep restful sleep. I tend to sleep fitfully, have nightmares (which has also related to my PTSD). Oftentimes I wake up exhausted as if I haven't slept or on the worst mornings, I wake up feeling like I've been run over by a truck. So waking up sucks. And that's why I have such a long and extensive morning routine and I talk about that a lot in this post, so go check that out next.
But I have to take one to two hours to boot up in the morning in a way that gets my body ready to go and gets my brain ready to go in a way that doesn't make things worse. The first thing I do when I wake up, is I stay in bed for about half an hour, letting my brain wake up before I asked myself to get out of bed. And when I do get to that point, I take my time changing from a supine, AKA laying down position, to upright. I transition to sitting up first and hang out there for a while and then I stand up and that's really important. If I were to jump out of bed immediately after waking up, I would probably experienced symptoms of presyncope, AKA my vision would blackout and I would feel like falling over, and fainting. It's not fun! Having a long boot up process in the morning is super important.
As for working, I'm self-employed. I work from home and yes I have this office that you see here. But sitting here in this chair with my feet on the floor is really hard on me because of my POTS, because I struggle, my body struggles, to fight gravity. And so gravity takes all my blood down to my feet, to the floor. So I've actually discovered that working from bed is ideal for me. I am now able to work twice as many hours as I could before now that I work for bed. So if you wanna see my working from bed set up, check out this post.
Now let's talk about physical activity and exercise. First of all, I can only do structured exercise once a week. If I do any more than that, I will never ever recover enough to actually improve. This goes hand in hand with my EDS, which I talk a lot about in this video, but not only are the workouts themselves extra hard because I get tachycardic just standing up. So actually doing physical activity makes my heart rate go bonkers. For my workouts, I tend to do strength workouts and body weight exercises that I can do from the floor so I'm not having to stand up, 'cause if for example, I were to do just three squats would make me really ill.
I am so pleased I've gotten to a point where I can accept that I can only exercise like that once a week and I've actually been steadily getting stronger over the last year. Whereas before, when I would force myself to exercise more often to build my strength, I would just crash sooner rather than later, and need weeks, if not months of recovery. And then it would start all over again, and I would never actually make any long-term strength gains.
Cardio is another ball of wax because I essentially experience cardio when I'm upright. So you may notice in my videos that I get out of breath and that's because (gasps) my heart rate is high just sitting here and it sucks and I hate it, but then it also makes cardio more difficult because for one person doing cardio their heart rate gets up to 150 and it doesn't go above that if they're not working out extra hard, this is just an example.
Mine, when I go dancing, which is such an important part of who I am, I am a West Coast Swing dancer, and that's one of the greatest loves of my life, (exhales deeply) my heart rate will get up to 200 dancing one song and it's exhausting and it breaks my heart how much (exhales deeply) dancing really hurts me, but I can't not dance. (exhales deeply) Okay, that was tough.
Let's move on to cooking. Unfortunately, humans need to eat. I hate it. I cook as little as possible because again, standing in the kitchen to cook; exhausting! it's like a cardio workout for me. And then don't even get me started on eating. So I talked a lot about my gastrointestinal issues in my hypermobile Ehlers-Danlos syndrome post, but POTS also contributes to the gastrointestinal issues because when you eat, all the blood goes to your digestive system to prioritize digestion. But my body sucks at recirculating blood adequately to super crucial parts of the body like the heart and the head. I am more likely to get sick when there's food in my stomach. Yay!
Same goes for drinking water, which is super annoying because with my postural orthostatic tachycardia syndrome, I am supposed to stay more hydrated than a camel. I have to keep my blood volume up 'cause the idea being that if I am fully hydrated, there is enough blood to go around. If I'm dehydrated, POTS will just get so much worse. So I'm supposed to drink a lot of water and particularly a lot of electrolyte water. Lots of sodium for me! 'Cause if I don't, my body doesn't hold on to it. So annoying!
So I've already talked about dance, which is one of my main hobbies, but like I said, I can't do that very often. Even if the pandemic were to end tomorrow and there were suddenly social dances every single night, I could not go. I can handle maybe one, two tops, a week and that would make me really ill, I would need to recover from it. I have to do much less physically active recreational activities for my free time. So I tend to do FPS gaming here at this desk. But even that, I can't sit here with my feet on the floor that long. So I can't play all day. I can read, I can watch TV or movies.
I have to do really passive recreational activities and that has always been really painful socially because a lot of my friends throughout my life have been able-bodied and I live in the Pacific Northwest, so they like to do things like going hiking or climbing or; (gasps) stuff that I can't do. And it gets pretty lonely sometimes.
All right, now let's talk about sleep. I mentioned it earlier, but not only do I not get very restful sleep, if my sympathetic nervous system gets over-activated, it kind of gets stuck in the on position and it makes it impossible to fall asleep. What often happens to me is if I go out and I have a good night dancing, it's my one night a week. When I get home, I am so ill from just that one evening of dancing that I cannot fall asleep and I also happen to be in a significant amount of physical pain and deeply exhausted to the extent that not being able to sleep and experiencing so much pain, that pain medications won't do anything to, is actual torture.
I am no stranger to suicidal ideation, and I would say that experience is the one that I have experienced the most suicidal ideation with throughout my life. Because that is a nightmare. And then add insult to injury, and if I do fall asleep, I'm pretty likely to have a nightmare 'cause that's just me, whee!
So I have a few more like daily activities on my list that I was planning on talking about in my script. But, I think this is the part where it's really important to talk about mental health and chronic illness. I've already mentioned a lot of what contributes to my depression in relationship to my illness, and that's social isolation, experiencing pain and not being able to do anything or take anything to really manage it when it's super bad. (breaths deeply) It gets really lonely.
And it's been my experience that able-bodied people just don't get it. They look at me and they see someone resilient and strong, someone to look up to which I appreciate. I consider those compliments, but I wish there is a switch I could flip so those people could also understand that I am someone that needs accommodations and help.
For example, when I go dancing, the later in the night it gets the more symptomatic I get and the less able I am to be mindful of how bad my symptoms are getting. And I need someone to tell me, "Hey, maybe you should sit down and put your feet up. Can I get you some water?" 'Cause I've noticed in the past, when I'm super symptomatic with my POTS in a dance environment, I get almost manic and I will find myself standing and talking to people, and I really should be sitting down with my feet up, not talking, having water and resting in between dances. And when I get really bad, I literally do not have the capacity to care for myself in that way.
And I've always dreamed of having people and friends in my life who could be the mindfulness part for me. But, instead they just see me as strong and resilient and yeah, I have these chronic illnesses, but they're no big deal 'cause I "don't look that sick" all of the time. (breaths deeply)
So yeah, the symptoms suck. But the social stuff, that really sucks.
So now you know a great deal more about my body and the symptoms I deal with every day. And if you've been around a while, you may now be able to see why helping people such as myself go from stuck to unstoppable so they can finally live their lives, is so important to me. Because I spent way too many years of my life without the help and accommodations I needed. And if I can help just one person not waste years of their life in that same pursuit, everything I do will be worth it.
If you want a better understanding of what it is I do as a coach, please check out my free masterclass where I teach you three mindset shifts and one simple three-step system to help you overcome procrastination and resistance, because procrastination and resistance can be really hard on those of us with chronic illnesses.
All you have to do to get access is go to this link and sign up.
This is the part where I usually say I'll be back next week with another video, but for the foreseeable future, I'm gonna switch to every other Tuesday for videos so that I can have the time and energy I need to focus on building my course that I have been researching and working on behind the scenes for awhile. But I now I'm at the point where I need more time to make it come to life.
Check out this post next to learn about my other chronic illness, hypermobile Ehlers-Danlos syndrome.
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For the foreseeable future, I will be back in two weeks with another video. I'll see you then. Bye.