Saturday, May 4, 2013

What's POTS Like?

Among my alphabet soup of diagnoses is a condition called POTS, which stands for Postural Orthostatic Tachycardia Syndrome. POTS is a type of dysautonomia, a disorder of the autonomic nervous system. Because of POTS, I have a high heart rate, I'm dizzy, shaky, exhausted, confused (haha! A medical excuse for my scatter-brained-ness!), unable to regulate my body temperature, have GI issues, and probably other stuff that I can't think of right now (did I mention confusion?)! ;) Right now, the POTS is the biggest thing that's keeping me in bed - I simply feel like I'm going to pass out if I'm not horizontal! And even when I am horizontal, I still feel pretty crummy.

People ask me what I do all day long - I don't know how to explain this, but I simply am unable to do ANYTHING on bad days. The POTS magnifies my pain to the degree that it feels like my body's on fire. I can't even read (arms are too tired, hands shake too much, mind can't focus), and since I can't think straight, I usually can't even watch a movie. I don't answer my phone because I don't have the energy to even have a conversation. My sweet mom often has to bring me everything I need because I can't make it out of bed.

What does POTS feel like?

My mind is perfectly calm... but it feels like my body is having a panic attack - sweating, trembling, heart pounding, and I can't seem to convince it to quit freaking out! 

I feel like a week-old leaf of wilted spinach that got left out in the summer heat! 

If I stand (or sometimes, even if I sit) for more than a few moments, I start feeling confused - I feel like nothing makes sense. I start seeing black spots, and I have to try to hide how badly my hands are shaking and that I'm sweating. 

I feel like a failure because I simply don't have the energy to much of anything - most days, getting dressed is a major undertaking. If I shower, it usually leaves me so exhausted that I end up needing to rest for an hour afterward, often sweating through my clean clothes. I quit making social plans because I'm so tired of having to cancel because I don't feel well enough to go.

I sometimes wonder if I'm just laying around because I've gotten lazy... and then I have a day where I feel semi-decent... and I'm always amazed at all that I accomplish!

I have no idea what to say to the people who tell me they are glad that I'm better, as if I've been sick with the flu instead of chronic illnesses. I'm not sure how to respond to the well-meaning people who tell me how I "look so good!"when I had a sleepless night due to pain, ate nothing because I'm so nauseated, am struggling to remain upright, and counting the minutes until I can lay down again. Just because I made it somewhere doesn't necessarily mean that I'm feeling good. I probably spent all my "spoons" (energy) for today (and tomorrow) just getting here! ;) It's just frustrating to feel so crummy and have everyone around you assume that you feel great. 

I'm thankful that I look normal and healthy - there have been times when I probably DIDN'T look healthy (e.g., when I was pale as a sheet and doubled over in pain before my first surgery, or when I was approaching double digits on the scale back in 2011, or when I was overloaded with fluid weight from steroids this past summer and fall). And I'm not trying to be a downer - some things HAVE gotten MUCH better - it's been almost a year since my last surgery. My arthritis is doing really well. I have no inflammation in my intestines and no abscesses in my abdomen! But my reality is that I haven't eaten solid food since the end of March, I have so much pain that I don't sleep, and my heart races so much that I must spend over 18 hours of my day in bed - on a good day. I mostly leave the house only for doctor's appointments and I rely on a smorgasbord of medications to allow me to function as well as I do.

Sorry, soap box aside...

This post has a happy ending... I had an appointment last Monday with the only other POTS specialist in the area (the one who diagnosed me is primarily interested in academic medicine as opposed to patient care). The appointment yielded some very interesting results... stay tuned!!

Hannah ;)

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