I'm going to say it like it is today, so if you don't like to hear the truth, it's probably best you exit this page. When it comes to any form of illness; disease, condition, syndrome, whatever it may be, there is a good chance people just do not care what you're going through. Unless, of course, it's terminal. See, another hard lesson I had to learn because of my health is just that – nobody wants to be around you or act like a friend unless you're dying or dead. What they don't seem to understand is that there is no guarantee any of these illnesses won't be the reason anyone of us dies. Sure, there is a good chance we'll all be miraculously cured someday. Nobody talks about all of the people who don't end up better though. Another thing none of those people understand is how frequently your body can convince you that you just might be dying this time.
Something I've had an incredibly difficult time explaining to people is how sick I really am, and how POTS affects my entire body. Everyone laughs it off when I say it affects everything, literally every part of my body somehow, because they assume I'm just fed up and exaggerating. I'm really not. In general, POTS patients can experience any of the following, at any given point, with no warning at all. The main symptom of POTS is having a ridiculous heart rate, and by ridiculous I mean it increases to over 120 bpm, or more than 30 when you change from lying down to sitting/standing. There have been quite a few days where my “resting” heart rate was between 130-140 bpm, and that was lying down. Following this abrupt change, any or all of these can happen; nausea, lightheadedness/dizziness, chest pain, shortness of breath, ringing in the ears, heart palpitations, fainting, disorientation, brain fog, inability to exercise, fatigue, cold fingers and toes, blood pooling in the legs, weak muscles, low or high blood pressure depending on your body's reaction, headaches, bloating, diarrhea/constipation, stomach cramping, tremors, visual disturbances, insomnia, overheating/chills, nervousness, and more.
To put this into perspective, I'm currently experiencing all of the following at this very moment; increased heart rate (it was 136 last time I checked), nausea, recurrent chest pain, shortness of breath, brain fog, inability to exercise, fatigue, cold fingers and toes, weak muscles (I'm forever dropping everything, including myself), low blood pressure, bloating, tremors, visual disturbances, headache, and chills. When things get really bad for me, I can experience premature ventricular contractions (essentially heart skipping a beat which results in strong palpitations – feeling a strong beat). In terms of brain fog, I've forgotten my birthday, my address, my phone number, parts of well known routines, and more. So when it comes to remembering short term things, such as where I put my purse down, it could end up lost forever. On top of all of these symptoms, many of us have multiple other conditions with POTS (or another dysautonomia condition) and experience multiple symptoms from each of those as well.
Despite all of this happening, when people ask me how I'm feeling or doing, I almost always answer with “I'm okay”. Why? I've learned to accept my most common symptoms as normal life for me, so I'll only ever admit to not doing too well when my symptoms get out of control or I get a virus on top of my usual symptoms. Plus, most people take it at face value and wouldn't care to hear you list off the 20 symptoms you're currently feeling as an explanation for why you're not doing well. Back to my original point, I spent a long time pretending I wasn't that sick, mostly because that's what people want to believe. Have you ever noticed the only awareness campaigns that turn out successful are centred around death? Cancer, suicide, tragic accidents, whatever it may be.
Now, in no way am I saying we should all abandon these causes or that these people don't deserve recognition. I am saying we could all do a little more to recognize those that are doing their absolute best to survive and push through conditions that may or may not kill them. Just because most of us aren't on our death beds does not mean there is nothing equally as troubling happening to us. Many of us are grieving just the same, many of us have been forced to watch our goals and dreams die along with the healthy version of ourselves, and many of us would just like to hear someone step up and recognize that once in a while.
No, POTS is not terminal that we know of, but yes, we are all fighting very hard to make sure of that. As I'm certain all of you have learned in your lives, fighting against something that seems never ending seems nearly impossible without a support system. That goes for all struggles, not just health. If you accomplish nothing else today, do your best to support someone - whether they seem like they need it or not. Even if they don't seem to value your support much right now, I'm sure that will become a moment they will look back on in a positive light. There is always room to grow into a better person than you were yesterday, and you should never prevent yourself from trying.
As always, rest easy spoonies.
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