I got sick. Very sick. In high school.
I was crazy active until then. I swam for my state, played hockey, did horse riding and jumped in gymkhanas, chopped my way to a purple belt in karate… with good grades at school, playing the piano, writing songs, and making plenty of time for fun and frivolity with my friends.
At the same time, my mum was sick. With ME. Myalgic Encephalomyelitis(also known as Chronic Fatigue Syndrome. Or CFS). And because she was bed ridden for A. VERY. LONG. TIME. something in me screamed out to remain active. Maybe so that I couldn’t be rendered INactive. Or maybe because I didn’t want to face what she was dealing with. Probably both.
One night, I went to bed. And then I couldn’t breathe. It was that simple. And that quick. My dad had to take me to hospital, and after a barrage of tests, I was finally released… with a verdict. And it was harsh. Although I didn’t understand it in words for a while. Just in the incredibly awful way it made me feel.
I was very sick for months. MANY MANY MONTHS. And when you’re a teenager, one month is a long time, let alone many months…
I had a coxsackie virus. Part of the ‘coxsackie B’ strain, for what it’s worth. Oh, and this particular virus is resistant to most treatments. Joy (insert a sarcasm font right there if you will). It affects your central nervous system. And there is no vaccine. You just have to wait it out…
It can also become an autoimmune disease, whereby your body starts attacking itself instead of the virus. Double joy. In most cases, with Coxsackie B strain, your body can attack the heart wall, causing things like myocarditis and the likes…
You can take betablockers. But then you’re on them for life. Supposedly.
In my case, it affected my heart. And my breathing. I couldn’t do a single thing without having violent heart palpitations. NOT. A. SINGLE. THING. I couldn’t lift, or even turn, my head without feeling like my heart would burst out of my chest. I couldn’t eat, because chewing would make my heart race. I’d lie dead still. I couldn’t lie on my side, because I could hear my heart beating violently through whichever ear I was lying on. And it’s not the heart palpitations you know of in everyday life, like when you’ve run up three flights of stairs. It’s way worse. It’s indescribable.
Needless to say, it was not so much fun.
And because it wasn’t something anyone could ‘see’ as such, it was hard to ‘prove’ I was sick. If that makes sense… It was also hard to ‘be’ sick. I needed something tangible I could pinpoint. But it was inside my chest. Invisible.
And here’s a spinner. You see, somewhat ironically some would even say, my (young)uncle had only just recently died of heart problems. He contracted a flu virus, which damaged his heart, and he died. Turns out he’d had a heart condition nobody had known about, called a mitral valve prolapse. Which is not necessarily going to kill a ‘normal’ person, but his heart just hadn’t coped with the strain of the virus. That’s the short story.
And then I got sick. And all I could think was that I was following in his footsteps. We all got tested for his heart condition. I have it. So does my aunt Lindzi, who was often sick as well. But up to that point, I hadn’t been sick.
It was scary. That’s the long and the short of it. Think cardiologists, and ECGs, and other such fun activities. I was put on betablockers. They made me feel like death warmed up. Or not even warmed up. Just sheer DEATH. And I could still hear my heart beating. Way too loudly. To the point where it would keep me awake. And consume all my thoughts. And make me cry. Which would only make it worse…
My mum took me to her homeopath, who had done wonders for her CFS, and for my sister over the years. He took me straight off the betablockers. I won’t even go into how hard that was… He also took blood(mine), kept it(yuk), mixed it with some weird stuff(double yuk) and then, FOR MONTHS ON END, I had to go back to him EVERY WEEK, and have MY OWN MIXED UP BLOOD CONCOCTIONS INJECTED BACK INTO ME….eeeuw.
This concoction – in which he mixed my blood(which obviously had traces of the virus in it) and other fun stuff – would sit and ‘blend’ in his labs, and the fun stuff he threw in would help my blood to learn to fight the virus rather than itself, and then once injected back into me, the small amount of my now-well-taught blood would charge forth and ‘teach’ the rest of my blood to recognise the virus as the enemy, rather than attacking my own heart and blood… (that’s ‘coxsackie virus demolition 101 for dummies’ right there. ie: me.)
So. I got better. Mostly. After a LONG time. Lots of injections. And lots of working out what worked for me.
My heart still sometimes goes NUTS. When I’m really tired. When I do too much. When I get stressed. I know when it’s happening, and I know how to fix it. It always means slowing down. Changing gears for a bit. Sleeping properly. Eating properly. All the things I should be doing right all of the time…
All that, to say two really simple things:
1. Why share?
Because I needed to write it down. It’s been a long time.
2. The prize?
LIFE. In all of it’s exquisite difficulty. It’s a beautiful, powerful, supremely wonderful thing.
I am grateful for my crazy beating heart. Every single day.