Hi, I’m Sarah! Part girl, part bear. I’m 27, with a pacemaker, but still have to show ID to buy spray paint. I’ve been married to Mr Happy for nearly seven years *mushy sigh and starry eyes* I love crafty, creative, DIY stuff like cooking, sewing, painting, writing, sketching, woodworking and gardening. I love words (I even have a list of ones that I’m fond of). I play piano. I’m a Christian. I’m half Lebanese, half Australian (born in Australia). Oh…and I have dysautonomia (specifically NCS/NMH/VVS) among other illnesses.
It’s the perfect place to live…unless you have dysautonomia, because a hub of medical facilities, this town is not.
I got sick with dysautonomia when I was 14. None of my local doctors had a clue what was going on with my body. So I spent my teens making more and more 6hr round trips to the city for tests and specialist visits.
What was that like? Well, imagine you’ve got the flu. You ache everywhere. You’re shivering. The light hurts your eyes. You’re nauseous. When you move, everything spins. Your heart thumps lamely. Your legs feel like concrete. A trip down the hallway to the toilet exhausts you.
Feel like going on a 6hr car trip? No? Tough. When you’re chronically ill, and live in a small town, you don’t have a choice.
Even with all those trips for testing and appointments, it still took six years before I was correctly diagnosed (and another year on top of that before we found someone who could start treating me). There’s a particular kind of despair reserved for when you’ve dragged your sick self 6hrs away for answers…but got none.
*squints and peers through screen*
I can see you shaking your head at me, saying, “Well, duh! Move to the city!”
I shake my head back at you, because it’s not that simple. When Mr Happy and I got married, we did discuss moving away. But here, in this small country town, we have wonderful family and Church family. The benefits gained by moving closer to specialists are easily outweighed by the loss of that support network. Plus, even if we wanted to live in the city (which we don’t!), there’s no way Mr Happy and I could afford to live there and pay for all the medications / testing / treatments we need.
Living with dysautonomia is hard, no matter where you live. But, in my experience, living in the country seems to add another layer of difficulty. I don’t have any solutions though. We’re happy here, surrounded by green paddocks. We’re part of a Church that really looks after each other. Our family is close by. Mr Happy loves his job. Those things matter too.