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I am 24 years old, in a happy relationship, working at a part time internship, searching for full time jobs, passionate about the environment, have an adorable pet hedgehog named Falafel, have a Master’s degree in Environmental Law and Policy, and I have a condition called Postural Orthostatic Tachycardia Syndrome (POTS).
I’m really bad at talking about it. Most of the people who know me know that I get migraines. Only people I’m very close to or went to high school with know about POTS. I should be telling people to raise awareness about this syndrome, but I haven’t quite figured it out yet. I was diagnosed with POTS when I was 16. Eight years and I still don’t know how to talk about it.
POTS is a syndrome that is caused by disfunction of the autonomic nervous system. (It’s a type of dysautonomia). The autonomic nervous system controls and regulates all unconscious (or automatic) functions of the body. (Autonomic=Automatic. Easy to remember right?) Things like blood vessel dilation and contraction, heart rate, sweating, pupil dilation, digestion- all that good stuff that you never actively think about or control.
Autonomic Nervous System
The basic problem in people with POTS is that we can’t tolerate standing. When a normal person stands, the blood vessels in their extremities (arms and legs) contract to counteract gravity. Their heart rate might increase temporarily, but it stabilizes. When a person with POTS stands, the blood vessels in their extremities do not contract. Their heart rate has to increase to make up for the blood pooling caused by gravity. In some (but not all) POTS patients (including myself) this is accompanied by a drop in blood pressure.
This is just the basic diagnostic criteria for POTS. The other weird autonomic nervous system issues are also symptoms- things like difficulty regulating body temperature, trouble with digestion, dizziness, headaches, and fatigue (to name a few on a long and varying list). Read more about POTS on the Dysautonomia International website.
Why isn’t it socially acceptable to wear ice packs on your forehead in public? I would also like to point out to my sister that there is now an additional photo of her in my apartment (see yellow frame) so maybe she will stop complaining.
POTS is an invisible illness. This means that you wouldn’t know anything is wrong with me based on how I look. I am a rather pale person and I always have dark circles under my eyes, but a stranger might just assume I am slightly sleep-deprived. No one would ever expect someone who looks healthy to have many of the issues I have.
I remember reading in a medical report about POTS patients that every time we stand, it is comparable to expending the amount of energy a normal person does when they are running in place. Now imagine that as you are going about your daily life running in place all day. Think about how tired you would be after the most basic of activities, like showering, cleaning your home, and cooking.
The best analogy I have ever found is called the Spoon Theory. The spoon theory is actually about a person with Lupus, but it applies to people with POTS. Go take a few minutes and read it.
You’re back! What did you think? It’s pretty brilliant. All the best explanations are simple.
I don’t intend for this blog to be only about POTS. It’s just what I felt like writing about today, because I’ve been going through a tough time these past few weeks. Living with POTS, some days are worse than others. Sometimes I will feel great for a day and terrible the next day. Weather has a little to do with it, stress affects it, but it is often unpredictable.
So, I hope you learned a little something today. In future posts, I plan to write about all different kinds of things that interest me. I am a huge fan of pinterest. I’ve been making my own hair and cleaning products for the past year or so. I love organizing. I hope you enjoy reading about all the different things that I think are worth sharing. Until later!