Life with Dysautonomia Part 1

Laurie5I may look “fine” to you on the outside but what I’m experiencing on the inside is not “fine”.

I have a couple of different forms of an incurable invisible illness called Dysautonomia. Pronounced Dys~auto~no~me~a. I also have Fibromyalgia and a slew of other things but I’ll get more into those on another post.

The types of Dysautonomia I specifically have are POTS which stands for Postural Orthostatic Tachycardia Syndrome, Hypovolemia which means my body doesn’t make enough blood so my blood volume is very low, NCS which stands for Neurocardiogenic Syncope and OH which stands for Orthostatic Hypotension. Say what?

I’m sure there are a lot of words in there that you probably don’t recognize. For those who do understand, you might live with this and I’m sorry for your battles. Please know that you’re extremely strong and brave. If you’re not living with this, then you know someone that’s living with it and have cared enough to learn about it. Huge kudos to you for taking the time out of your life to help your loved one! Last but not least, you’re a medical professional and have also taken the time to learn and understand. Thank you so much from the bottom of my heart! Seriously, finding a medical professional that cares enough to research and understand Dysautonomia is like finding a Leprechaun’s pot of gold at the end of the rainbow!

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For those that don’t know what all that means let me it explain it in layman’s terms for you. Think about all the things that you take for granted that your body does for you without ever having to think about it. Your heart pumping, digesting food, breathing, blood flowing through your veins; literally everything that you never have to think about. That’s all controlled by your body’s autonomic nervous system (ANS).

Now imagine if your system malfunctioned and couldn’t do those things that are vital for living properly.

Yeah, that’s what I have. Fun right? My heart rate increases 30 beats or more per minute upon standing, my blood pressure drops very low, my blood pools in my legs and stomach, and if I stand too long I will pass out because my heart can’t pump the blood back up to my brain. That’s the shortest version and pretty much sums it up.

So how do I live like this you must be wondering?

Well, in all honesty I fake being well.

Any school aged child or idiot can fake being sick. It takes real skill to fake being well and I pretend that I feel much better than I do. I usually also always have a smile on my face but that doesn’t mean that I’m “fine”. You’re probably wondering why I would ever want to do that? I do this for a few reasons.

1. Just because I’m [feeling] miserable doesn’t mean I need to project it onto others. The world is filled with enough sour pusses already.

2. My mother, God rest her soul, taught me to always think before I judge and to be nice no matter what because you never know what someone else is struggling with or going through in their life.

3. I don’t want to hear how good I look or [any] cockamamie, voodoo medical advice from [a] degree in Make Believe-Land. If someone walked a mile in my shoes they’d understand.

Let me explain.

I’ve been poked and prodded like cattle and I’ve gone through more tests than a crash test dummy by some of the best doctors in my state. I’ve tried all the home remedies, diets and what great-aunt Martha did in 1905. I can’t help but think “Please stop telling me I don’t look sick, I’m too pretty to act this way, just drink more water, take a nap or hot bath, exercise more, try this diet and whatever else you may think will help me– because it doesn’t.” Especially the hot bath suggestion; Heat is a huge no-no for POTS patients.

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Those statements help the person giving them, not me.

These words are comforting for only that person because it’s hard to accept that someone they know and love is suffering. Advice like this might also be comforting a doctor who is at a loss for words, who doesn’t know what else to say or do.

Let me help you, a caregiver, supporter, friend or doctor, empathize and understand what chronic illness feels like.

Can you remember the worst flu you’ve ever had? Do you remember how sick, tired and weak you were not being able to get out of bed and take care of your responsibilities? Now imagine having someone tell you to suck it up! How would that make you feel? That worst flu you’ve ever had is nothing compared to what someone with a chronic illness lives with daily. It’s just the tip of the iceberg of what it really feels like. Now that you can relate, how would you like to be treated and what would you want someone to say to you?

Instead of receiving advice, what truly helps a chronically ill patient is understanding and support. Listening to what they’re saying without interruptions.

If you know someone with dysuatonomia, call them up to see if they might need anything at the store because you’re going out and know that they’re stuck at home. Research and learn about their conditions. Simply let them know that you care, are there for them and think that they are strong for fighting back against their illnesses and not letting it get the best of them.

Most of all, we really just need you to love us unconditionally!

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Stay tuned for Part 2 of Life with Dysautonomia by Laurie, the same time tomorrow. Additionally, look for more articles to come by Laurie Lelacheur who is struggling with Postural Orthostatic Tachyardia (POTS), Hypovolemia, Neurocardiogenic Syncope (NCS) and Orthostatic Hypotension (OH). She is very involved in the Dysautonomia community through The Dysautonomia Project, Standing Up to POTS, the Dysautonomia Advocacy Foundation and the Dysautonomia Support Network, to name a few!

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