A cup of coffee – such a simple thing, most of us drink it every morning. Stumbling on auto pilot to the coffee maker we go through the motions, flip a switch and get on with getting ready for our day while it brews.
In my bedroom I have my own coffee pot not more than a foot, if that, from my bed. I want some independence. I wake up and since I’ve set it the night before I hit the switch on the way to the bathroom. By the time I’m done it’s not quite ready so I sit on the bed to wait. Unfortunately I begin to feel palpitations, nausea and dizziness within seconds and am forced to put my legs on the bed and lie back.
Finally coffee is done, yes! I sit up and stand, whoa, bad idea, shaking legs, so I grab a cup, sit down cross-legged on the bed (better to keep my blood pressure up), reach for the coffee pot and shakily poor my coffee. Really not feeling good but I want my coffee and I want to do it myself!
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I shakily pull the sugar off the stand and the half & half out of my mini fridge. I’m feeling like hell now, shaking, clammy, nauseated, dizzy, but, I am on a mission. So I set my coffee cup on the floor and lie on my stomach (super grateful that I chose a platform bed!). In putting in my half & half and sugar and making adjustments, I’ve had to stop stirring, put my head down and rest a few times. But finally I’m done, I did it! I put the half & half away, the sugar can wait.
Panting, I crawl carefully with my coffee across my bed to my “spot.” I am bed-bound and yes, I have a preferred spot for the day. Feeling as bad as I do, I decide to take my blood pressure and pulse. My barista moment raised my blood pressure a bit, always a good thing, it also raised my pulse.
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Remember, I wasn’t standing for any of this. It took me well over five minutes to fix a cup of coffee. Between sitting and lying down I have managed to hit a heart rate of a major cardio work out.
This, my friends, is postural orthopedic tachycardia syndrome, better known as POTS. It is a spectrum condition, some are mildly affected, some have episodes but feel pretty well most of the time. Some can play sports, continue to work and just need extra rest. Some are unable to work as their body can’t handle the regimented day, it needs to rest when it needs to rest, but they can go out for short trips to the shops or to visit friends. You might even see them visit an amusement park with their families – what you won’t see is the week in bed and the symptoms they must go through to pay for it. Then there are the 25 percent who, like me, are completely and totally disabled by it.
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There is no cure for POTS, although for some it does seem to go away. There are treatments but no one-size-fits-all treatment, and unfortunately sometimes the treatments just don’t work for some. We are caught in a catch-22 because exercise can help us tremendously but some exercises can also make our symptoms much, much worse. Finding a happy medium is difficult and disheartening especially when it can mean starting with one minute of exercise a day. Most patients are said to gain some functionality after many years but some continue to get worse.
The hardest part for most patients is not being believed, by our doctors, our friends, our families… or having someone compare their “fatigue” to ours. When you sit down you get relief, when most of us sit down out heart rates are still around 100 bpm or more. We are still at the gym, plus we’ve woken up numerous times during the night and me personally, I made 13 bathroom trips last night because I can’t fully empty my bladder each time I use the bathroom.
I could go on but this is long enough. Before you are tempted to blow off your loved one or make light of what they are telling you, please, do some research on a credible site like Dysautonomia International or DINET. Not only will it help you understand, it will mean more to your loved on than you could ever know.
POTS is a lonely place, it doesn’t have to be.
The Greek Comedy (and Tragedy) of Life With POTS
12 ‘Embarrassing’ Symptoms of POTS We Don’t Talk About
From the Chronically Ill Teenager Sitting in the Corner of the Party
Taste The Coffee 2019