Dear Dysautonomia

Dear Dysautonomia,

I grew up thinking I understood chronic invisible illness.
After all…Mum was sick.

She has Chronic Fatigue Syndrome, brought on by the Glandular Fever she had when she was in her twenties. As a child I had a front row seat. I watched her wage a daily war with her body, just to be able to do basic things. I saw that she was in constant pain and had bone-sapping fatigue. And though she tried to hide them, I caught sight of some of the tears of disappointment and frustration when she missed another event, or was too tired to help with the latest school assignment. My favourite thing to observe was the big beaming smile on her face when she could do something, and I was happy for her… but I didn’t understand.

I was healthy, before you came. I always struggled with weight, but hey, I’m half Lebanese – generous boobs and hips are a part of life. I had a few strange dislocations when I was growing up, and discovered I had hypermobile ligaments. And I did get the occasional migraine, but they’ve run in the family for generations. Apart from that, I was fit and strong. I got up early several times a week to swim laps, and did squad most afternoons after school. I was in the school softball and basketball teams. Academically, I was the top of most of my classes, every year. I’d studied piano since I was six, and was always complimented on my musical touch.

I was fourteen when you came, Dysautonomia. I was just a kid. You didn’t come with a big fanfare and parade, like you do for some. There was no big banner to announce your arrival. Instead, you snuck in; you slunk in, and then you proceeded to slowly ruin my body. It started with random head spins in class, and a feeling like someone had poured a bucket of hot water over my head. Then came the fainting. The fatigue. And then the seizures. I started seeing my local GP a lot. But, because of you, I didn’t fit into any of his neat little boxes. EEGs were clear for epilepsy, and despite the stink-eye he gave me because he was sure I must have been making it up for attention; I knew I wasn’t. I was a bubbly girl who loved school and had a great home life. But I was sick.

You were so sneaky, Dysautonomia. You hid when I had blood tests, x-rays, MRIs. Everything looked so normal. You made me doubt myself, often. You made me feel like I was crazy. I saw many doctors – some wanted to help, but just couldn’t work out what was wrong. Some didn’t really care about helping, and just wanted to use me as a guinea pig. Eventually, we found a doctor who could help me. In 2009 I had a tilt table test, and you were discovered. My spirits rose: I knew your name now. Postural Orthostatic Tachycardia Syndrome: POTS. But this wasn’t like the Rumplestiltskin fairytale. With one breath, the doctor told me your name, Dysautonomia, but with next breath explained he that he didn’t have any way to help me evict you. All I could hope for was to find things to minimise your impact, to reduce the frequency of your toddler-like tantrums.

Over the years, I’ve tried lots of different things: salt, fluids, compression stockings, beta-blockers, fludrocortisone, Midodrine, SSRIs, Ivabradine, mild exercise, no exercise, avoiding different triggers, cutting out different foods… Some helped a little, some didn’t help at all, and some made everything worse.

But no matter what I do, you’re there.
Always.

Even if I take all my tablets, supplements and probiotics; even if keep up my fluids, wear my expensive compression stockings, eat small meals (from the list of the limited foods you allow me to digest), take lukewarm showers, get plenty of rest and carefully conserve my spoons, there’s no guarantee you’ll behave. Last year you had me in hospital on the day I was supposed to host and celebrate Christmas with my family. You’re a jerk, Dysautonomia.

You mess with my blood pressure, my heart rate, my temperature regulation, my circulation, my oxygenation, my digestion, my vision and my energy levels (among other things). You make simple tasks like brushing my teeth or showering seem like running a marathon to my body. I’m sure you snicker when I go to the cardiologist and she asks if I’m there to pick up my Grandma…but I’m there for an appointment at 25 years old, because of you. I have hiking poles that I’ve used for support walking around the block more times than I’ve used them on actual hiking trips. When people point at me down the street, it’s not because I’m good looking – it’s because I’m driving a mobility scooter that old people are supposed to use. And apparently, that’s hilarious.

You’ve crushed my dreams, Dysautonomia. Gleefully stomped all over them.
I battled with you through school, but still came out with good marks. I decided on studying to become a music teacher, ended up getting a scholarship and early entry to University. But you managed to mess that up. You were an unwelcome tagalong to every class, to every practice session, to every commute. I barely managed my first year of study, and then I had to stop. No completed University degree here. No license. No full-time work. No hosting family and friends for dinner, no regular board game or sewing nights, no overseas travel, no serious hiking trips. Most heartbreakingly, no pitter-patter of tiny feet. You get in the way of everything.

I married a wonderful guy who is loving and supportive. He knows about you, but he refuses to let you keep him away. I love him dearly, with every beat of my tantrum-throwing heart. But you get in the way of my ability to love him with my actions. I hate you most for that. You get in the way in the bedroom: you’re the unwelcome third wheel. You hinder me in the kitchen: when I want to use my passion for cooking and whip up a beautiful meal for my husband instead of something simple again. You thwart me in my own house: instead of the neat and tidy, tastefully decorated home I envision hubby coming home to, there’s clutter and dust because I have no spoons for such things. You even block me outside of the house: despite my love of flowers and fresh grown fruit and veggies, there’s no garden here.

So, why haven’t you won, Dysautonomia? That’s what people always want to know. Why do I even bother fighting? How can I possibly keep going?

Firstly, this world is broken, and bad things happen to nice people all the time. If that were it, I’d probably have thrown in the towel long ago. But I don’t believe it is, Dysautonomia. I happen to know the guy in control, and He’s promised that you’re only going to be allowed to hang around for a short time. Your days are numbered. In heaven, people will never have even heard of you. And I don’t mean “haven’t heard of you” like most doctors here haven’t heard of you. I mean you won’t even exist. I trust Him who gave His life for me: with His help, I know I can keep going.

Secondly, I don’t always lose to you. My life is not what I’d planned, and you’re always messing things up, but in the midst of that, beautiful things still happen. I’d be different without you, Dysautonomia. Don’t get cocky…I still hate you. But I have to admit that, without you, I’d probably be less focused on the things that really matter. I’d be less compassionate and patient, having never travelled such hard roads myself. And, do you know what? When I do go hiking with my husband, and I do reach the top of the mountain, the accomplishment is that much sweeter (even if I did have to sit on every bench seat or flat rock available along the way, and have hubby carry my stuff and push me up every stair, and then sleep for days to recover).

Thirdly, I am surrounded by love and support. My family, my husband, my local friends, my online friends: I’m surrounded by people who “get it”. They support and encourage me when I feel that I just can’t take one more day of you, Dysautonomia. They cheer me on every time I get back up again for another round. They get excited with me when something’s working to defeat you, and they boo and hiss at you when you land a blow. Having that cheer squad in my corner really does make a difference. Because dealing with you, Dysautonomia, is tough. But doing it alone? That’s pretty much impossible.

Finally, My Mum has spent nearly three decades doing battle with a chronic invisible illness. She’s a warrior. It’s only because of her tenacity that I even got to the stage where I could get an accurate diagnosis. How do I know I can keep going, Dysautonomia? I see her do it every day.

I grew up thinking I understood chronic invisible illness.
But that moment when you first crawled into my life, Dysautonomia, I realised…I didn’t understand a thing.

It’s been over a decade since then. There’s still a tiny corner of my heart that holds a secret hope that one day, someone will find out how to kick you out for good. But until then, I’m just going to keep learning.

Yours reluctantly,

S xx

Experience is the teacher of all things.
Julius Caesar