Invisible Illnesses Suck

Wednesday, May 4, 2016

Disclaimer: I'm in the midst of a freaking flareup so this post might definitely will be dripping in sarcasm and hatred for my autonomic nervous system. Glad that's out of the way.

This is how my last week has been. Actually, how a lot of the last two months have been.  

About three years ago I took a nap and woke up to my heart racing. I didn't know it, but that was the beginning of having an invisible illness aka dysautonomia aka neurocardiogenic syncope and inappropriate tachycardia.

Invisible illnesses suck due to the simple fact that they are invisible.

It's doesn't make sense how simple every day things are so difficult and so exhausting when I don't look any different from before. Sometimes I feel crazy. And a lot of the time I wonder if people think I'm crazy. I wish the mess of me on the inside was more evident on the outside. Can I please look like a hot mess?! Even just ever now and then would be absolutely lovely!

My normal consists of chest pain, dizziness, irregular heart rates, palpitations, nausea and fatigue. I really mention these symptoms cause that's my normal. What's not normal is when my autonomic system decides to be a little psychotic and throw a tantrum or a flare up. A flare up is when I have chest pain that feels like a heart attack, I'm dizzy even lying flat, I feel like I'm going to pass out when I'm standing, I have really high and really low heart rates that I can't control with my normal medications, I'm so nauseated eating feels like a chore, and I am so exhausted that sleeping is exhausting. A flare up is when my symptoms are so out of control I cannot function. When my symptoms are so in my face I cannot ignore them any longer. I'm beat. I have to admit that my autonomic system got the best of me... again. I just wait and drink lots of water and salt everything and wear compression sleeves and rest. And desperately hope this will be a short flare up.

Chances are by just looking at me, you wouldn't know where on the health scale spectrum I am on a day-to-day basis. Remember invisible illness are invisible. I hate talking about how I feel to most people. It's so boring. And who really cares about what weird symptoms I'm currently having?! Who really cares about another doctor's appointment where I'm the youngest person in the waiting room?! Who really cares about yet another test or a new medication I'm trying?! How do you live with a chronic, invisible illness and not be consumed by it?

I read a blog post early today I'm Chronically Ill and Afraid of Being Lazy and a lot of what it said really struck a cord.
This is where I am now: too sick to go back to full-time work... and still alive enough to know how much I'm not doing.

After all, my work ethic and ambition haven't gone anywhere, despite my dedication to doing nothing for hours per day. It's my work ethic and ambition that call my "doing thing" laziness; and laziness or sloth is cause in our go-go-go society for shame of the highest order

In a society that holds productivity as unequivocally good, to do less feels like a moral failing.
Life with dysautonomia means reflecting, learning, adjusting and readjusting (oh yes and venting... lots of venting). I think the reason having an invisible illness is so frustrating to me is because I am terrified I will be perceived as lazy... dramatic... a hypochondriac... attention seeker... faker.... the list goes on and on. I am the same person I was before this diagnosis. Sometimes my autonomic system just kicks my feet out from under me, but you better believe I'm going to get up - as soon as the flare up passes of course - and while I'm lying on the floor I'm planning all the things I'm going to do once I'm back to my normal.

And that's the fun reality of living with an invisible illness. Thanks for the vent session friends. If you haven't read Dear Body I hate you but thank you...  check it out! Here's to living with the unpredictable and facing each day with a dose of sarcasm and lots of salt!


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