My baby sister, J, turned 16 this year.
Sixteen.
Seriously, where did that time go?
One of the things I hate most about my illness is the way it steals not just from me, but from my friends and family too. Time we should have spent together, experiences we should have had, memories we should have made… chronic illness takes a lot of those away. Continue reading “I went op shopping and came home with crabs…”
This is the second of two posts about navigating the medical system.
If you haven’t read part 1, you can find it here: Captain of your health (part 1) Otherwise, read on!
Phew! You got an appointment! After all that effort, the last thing you want to do now is waste it. So how do you get the most out of an appointment?
Continue reading “Captain of your health (part 2)”
Imagine that, all of a sudden, someone kidnapped you and made you the captain of a large ship. Unfortunately, you’ve never learned how to sail. It’s foggy, and you’re desperately trying to steer through shallow channels, to maneuver through the currents while avoiding reefs and icebergs. At the same time, with no experience, you’re supposed to give orders to the crew about when to tighten the rigging, and when to let it loose, when to put out the oars, and when to throw ballast overboard. You’re standing with two feet on dry decking, but you’re so overwhelmed you feel like you’re drowning in the sea you’re supposed to be navigating. Continue reading “Captain of your health (part 1)”
It’s the classic tale.
Princess gets in trouble. Knight in shining armour comes charging in to save the day. Everyone lives happily ever after.
But when you grow up, you realise that’s not how it works in real life.
Especially in the medical system. Continue reading “Waiting for the knight in shining armour…”
Courage. Persistence. Grit. Backbone. Spunk. Heart. Tenacity.
There’s a lot of synonyms for the word determination.
Obstacles are never in short supply when you suffer from a chronic illness. Determination is the willingness to overcome those obstacles. It’s reaching deep down inside to that place where you keep your spark, and using it to push back a little. It’s prioritising your energy, making changes and adjustments that allow you to do things that are important to you. Continue reading “Pride comes before a fall…”
English is a funny language.
One bear, two bears. One horse, two horses. But one mouse, two… mice. One goose, two… geese. One octopus, two… octopi?! (I guess neither ‘octopuses’ or ‘octopeese’ would have worked…) Fish and sheep? Doesn’t matter how many. One fish, fifty fish. One sheep, a million sheep.
And what about that whole, ‘i’ before ‘e’ rule? Yeah, that works great: except when you want to run a feisty heist on a weird beige foreign neighbour… Continue reading “That little word, ‘tired’”
I know your life is bewildering right now.
There’s so much happening that you don’t understand, and you’re afraid.
You’re scared that you’ll never find out what’s going on with your body.
It’s okay; we DO find out. It’ll be a crazy ride, and we have to wait five years to be correctly diagnosed. But what you have is real, it has a name, and you’re NOT crazy. Turns out there’s a whole bunch of things wrong with your body, but the one kicking you around right now is called POTS, and it’s a kind of Dysautonomia. I know right, ‘POTS’? Who even named this thing? But you’ll be so relieved to find out what you have, that you won’t even care that it has a name like a saucepan. Continue reading “Dear 14-year-old me”
“SHUSH!” I yelled at my computer, frantically trying to turn off the background music I’d been playing while I was studying. It was too late. My brain was overloaded with messages. I passed out, falling off the chair and tearing the ligaments in my knee. I was 17 years old.
That was the first time I realised that Dysautonomia affected my body’s ability to process things happening in the world around me (known as stimuli). Continue reading “Warning! Warning! Sensory overload!”
When a newly diagnosed friend was confused about the difference between Dysautonomia and its subtypes, I looked for an infographic to explain. I was astonished when I couldn’t find one – it seemed like a really obvious thing to have a visual representation of. So I whipped one up for her, and posted it on my blog, thinking maybe it would be helpful for others too.
Less than 24 hours later, that infographic post has OVER ONE THOUSAND VIEWS! Continue reading “What is this madness?”
People often find it confusing when I use the words dysautonomia and POTS interchangeably in a conversation. They’re like, “Hang on, which one is it that you have?” I know that a lot of newly diagnosed patients struggle with this too, so I thought I’d make an infographic to explain. Continue reading “Dysautonomia: the umbrella”
Reflections Of A Bear 