#postural orthostatic tachycardia syndrome
[Drawing of Potsie at a table, drinking glass after glass of water. Another girl cheers her on, “Chug, chug, chug!” Above them are the words “POTS Problem #1: Hydration!”]
How do you hydrate?
It’s been a long while since I posted my POTS Problems comics, so I figured it might be fun to post this series again! Of course, that also means that every time I look at the older ones, I feel the urge to redraw them… But, hey, it just means my stick figures are improving, right?
Hydration is important for everyone, and staying well-hydrated does lots of good things for your body! But it’s especially important for POTS patients because adding in extra water AND SALT to your daily routine helps to increase your blood volume. Many POTS patients (like me) have a low blood volume to begin with—add on to that things like blood pooling and low blood pressure—other common POTS Problems—and your body is in quite a mess. Increasing water and salt intake increases that low blood volume and can help with lots of symptoms.
Figuring out how much water and salt you need every day is a very individual process, as every body is different and has different needs—but a good place to start is 2 liters of water and 3-5 grams of salt each day, according to Dysautonomia International. Experiment with salt and water intake to find a balance that works for you!
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[Image description below the cut.]
NASA has done a lot of research on what happens to the human body in space, and here are some of the things they’ve learned:
1) Microgravity alters where your blood likes to hang out—on Earth, blood travels down and it’s our bodies’ job to pump it back up, but there isn’t really a “down” in space! Because of this, there’s more blood hanging out in an astronaut’s head, and this can cause changes in vision, along with feelings of dizziness, motion sickness, or even syncope (fainting). Astronauts also experience a decrease in blood volume, exacerbating these symptoms.
2) Because they don’t have to support their own weight in microgravity—or anything else, for that matter—astronauts lose muscle mass pretty quickly! They also lose bone density super fast—which are just a couple reasons why astronauts spend about two hours a day working out.
3) Astronauts also experience cardiovascular changes, because their hearts don’t have to work as hard to circulate blood. Exercise is very important for them. ♀️
4) Living in the International Space Station means astronauts only see the same few people for months—they’re super isolated, and they have to learn to deal with the psychological effects of that isolation.
5) After astronauts return to Earth, they may experience a change in cognitive function. Astronaut Scott Kelly spent a year aboard the International Space Station, and once he returned, researchers documented that his cognitive speed and accuracy declined.
Life in space creates a lot of symptoms in the human body—and POTS patients experience many of these same symptoms! …but for totally different reasons, of course.
I’m hopeful that more research on how the human body reacts to space—and how to help reduce the changes astronauts face during spaceflight—will help POTSies here on Earth!
But I also wonder if learning about POTS—what causes it, and how to effectively treat it—might benefit astronauts in space. If we have such a wide overlap in symptoms, maybe there’s a way we can learn from each other…
Just a thought, NASA.
[Image is a side by side comparison of two stick figures. The first is a POTS patient, who experiences dizziness due to poor circulation, brain fog, altered heart rate and blood pressure, loss of muscle mass due to fatigue, low blood volume, and is usually dehydrated and isolated from others. The second is an astronaut, who experiences dizziness/motion sickness due to altered gravitational states, alterations in cognitive functions upon return to Earth, altered heart rate and blood pressure, loss of muscle mass due to microgravity, lowered blood volume, and is prone to dehydration and isolated on the International Space Station.]
Doctor:Don’t worry, you’ll grow out of it when you’re older.
Me, a grown ass adult with a mortgage: *still waiting*
Becoming chronically ill because of a virus or infection is such a surreal experience. One day, you were fine, and then after developing a simple cough, cold, or stomach flu, your life was changed forever.
Your disability doesn’t make you weak, it makes you strong. You cope with way more than the average person and still manage to keep on going. You’re a badass.
You know you have a chronic illness when… you think your symptoms can’t get any worse and then the universe proves you wrong.
It’s fitting that we’re called patients, because we need lots of patience to deal with unhelpful doctors and wait years for a diagnosis.
You deserve doctors who won’t stop believing your symptoms are real after the first tests they run come back negative.
For spoonies the saying isn’t we make plans and God laughs… it’s we make plans and our bodies laugh.
When you work and have a chronic illness, most of your life is dominated by your job. On days that you’re not working, you’re resting and recovering so you don’t miss your next shift. You don’t have the energy to hang out with your friends or spend time with family. Work tasks also take you longer because of symptoms like brain fog and fatigue, so you may have to put in extra hours on your nights and days off to get everything done. Work bleeds into your personal life so much more than it does for a healthy person, and saps you of your energy so much that it’s often the only thing you have the spoons to do.
Chronic illness introduces a whole new set of worries and fears into our lives. We worry that our doctors won’t take us seriously. We worry that our medical tests and procedures won’t go well. We worry that the treatments we’re trying won’t work. We’re afraid that we’ll get worse and be unable to work, leave the house, or leave our beds. We worry that we won’t be able to provide for ourselves financially. We worry that some of the people in our lives won’t be able to understand what we’re going through, because they’ve never had to worry about health like we have.
Dealing with all of those very real worries and fears can get pretty exhausting, so remember to take care of yourself.
I recently had a doctor tell me that I should “stop seeing doctors” because a treatment I received has eased some of my symptoms. I didn’t say anything to him at the time, but I wanted to tell him how wrong he was.
I can’t function nearly as well as I was able to before I got sick. Why should I stop seeking treatment just because I’ve improved some and am no longer totally bedbound or housebound? I don’t think that my doctors would accept such poor health for themselves or their family members, so why should I?
I think doctors also don’t think about the fact that my health directly influences how much money I earn. I want to have the option of working full time for someone else to increase my paychecks, but I don’t think I’d be able to sustain that kind of employment right now. I can’t support myself on what I currently earn online, and I don’t want to live on a below poverty level income if I don’t have to.
So, sorry doctors, but as long as I’m on my parent’s health insurance, I’ll be seeking out new treatments.
Making a little bit of income every month has greatly reduced my stress.
Before I started “working” online two months ago (I use the word working loosely because I mostly use survey sites and “beermoney” apps to make money), I was constantly stressed out about money. I knew that not being able to work because of my chronic illnesses was nothing to be ashamed of, but that didn’t change the reality that not being able to support myself financially was incredibly stressful.
I’m not making enough money to support myself yet, but each month I’m seeing my income increase as I learn more ways that I can earn money from my bed without tiring myself out too much. A few months ago I didn’t believe that was even possible. I’m worrying about money less and less and my mental health is improving a lot.
It’s incredibly sad that anybody has to worry about how they’ll put a roof over their head and put food in their mouths. I wish things weren’t this way. But if anybody needs some help figuring out how they’re going to make ends meet with limited spoons, or just wants to vent about their financial stressors, I’m here for you… just reach out to me over chat.
Accepting your limitations when you have a chronic illness or disability doesn’t mean you’re lazy or pessimistic. It’s more than ok to acknowledge and respect the fact that there are things you just can’t do. Don’t listen to anyone who tries to put you down or make you feel guilty for saying “no” when you aren’t able to do something.
Sometimes I feel like being tired all the time isn’t “that bad.” That I should be able to push through fatigue and get things done like everybody else. But then I remind myself that extreme tiredness and sleep deprivation are forms of torture. I once read a study that suggested that healthy people would have to go without sleep for 3 to 4 days to experience the kind of fatigue that chronically ill people feel.
Chronic fatigue is real, disabling, and not just something to “push through” or “get over.”
That feeling when you’re trying to swallow a really big pill and you’re afraid you’re going to choke on it.
Sometimes, it’s ok not to be “nice” when you’re advocating for yourself.
The appointment I booked with a geneticist five months in advance was cancelled, but I wasn’t notified by the hospital. I only found out it was cancelled because I called the hospital a week before the appointment to ask which day it was on. The receptionist didn’t say when the geneticist would be able to see me.
Instead of speaking up for myself when I was on the phone, I was polite and didn’t make a fuss, which is the “nice” thing to do. I hung up and called my dad to vent about the situation instead of getting frustrated with the receptionist.
He decided to call the hospital back for me and wasn’t quite as nice as I was… but he got my appointment reinstated.
“Just lose weight” is bad medical advice, especially for chronically ill patients. Many chronic illnesses directly cause weight gain or make it too difficult to exercise. Doctors know this, but still tend to view a patient’s excess weight as the cause of their health problems rather than a symptom. They’re less likely to run important diagnostic tests on overweight patients and more likely to dismiss their health concerns. I’ve been taken more seriously by doctors since I lost a significant amount of weight, and that’s definitely not the way that things should be.
Doctors do get things wrong. That’s why their advice is called medical opinion, not medical fact.
You know you have a chronic illness when… symptoms that might alarm other people, like dark purple feet or unstable joints, seem completely normal to you.
