stuff i don’t talk about much.

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.

xxx

 

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18 thoughts on “stuff i don’t talk about much.

  1. So interesting Jo. Please you are well, I think I understand more now what makes you such a special person who observes and values life so much. I think we need to be show life is not something to be taken for granted, that we do not postpone living life until we have enough time and enough money to do it.
    Inlt when we understand that there may not be enough time or enough money and that we should not wait to experience life, do we really achieve out full potential 🙂

    You are doing so well, at experiencing and expressing life Jo

  2. wow. that is crazy. and i thought not being able to run because of a stress fracture was tormenting. perspective…

    i so admire your strength, courage and attitude! thank you for sharing this 🙂

  3. I knew you had been unwell at some stage…. I just knew it. People like you and me, who have been unwell, appreciate life SO. MUCH. MORE. (to quote you Jo). Your illness was just crazy! My heart was pounding as I read it. But I was so pleased for you when you (and your mum) were able to find a management plan that got you through.

    I also had CFS. It took a while to learn what I was doing wrong, and how to manage it. And I was so happy to be able to be part of every day life – every day!. Then recently I have got another illness that is debilitating (vertigo and dizziness), and it can go on for days without a break. I’m just coming out of a 7 week cycle of it – and am vertical today AND ECSTATIC! I have cried a lot, as I want to scream at all the doctors and specialists – I HAVE A LIFE (especially as Im a fitness instructor). Ironic isn’t it.

    Sadly it’s drugs that are going to control this – if the neurologist has the diagnosis right. I don’t care anymore – as long as there is some relief.

    Today was fantastic! Sheer bliss! Sheer, simple bliss. Was it a cure? Nope, it’s was just being out of bed, or off the couch. And not only that, upright without feeling dizzy. And not only that (it gets better….drum roll please) I was able to drive a car… and be with my daughter without crying! What a day! It was awesome.

    So I hear ya Jo. Loud and clear. Sorry, just re-read everything I blabbed on about and realised I did a me, me, me thingy there. I could delete it, but must say IM SO GRATEFUL FOR MY LIFE TOO that its good to yell it out! Have a great weekend! xxx Lisa

    • Hey Lisa,
      Thanks for sharing! And I hear ya – I have days when I’m thankful to just make it out of bed… It’s a challenge… But I think I’m getting better at being grateful for those chances to slow down, and take some time to get right again. Although it’s hard, and it feels awfully selfish sometimes!
      I’m glad you had a vertical day – may they become more the norm than not.
      Bless ya xxx

  4. I love your blog gorgeous girl, and the way that you make me stop and think. Your blogs are short, punchy, straight to the point and beautifully written….

    I am also so glad that you listen to your body, I mean to stay friends with you for many years to come….xxxx

  5. Oh Jo. I never knew. You, you are amazing.

    The way sickness, debilitating sickness hits us, obviously physically, but also emotionally and mentally – it shapes us.

    xx

  6. Hey Jo – this struck a chord with me big time. My hubby was diagnosed with a hole in his heart just before Christmas and has since had surgery to repair it. He spent Friday night in ED cos his ticker was palpatating too much and he is now on betablockers till they sort it out.

    I am SO pleased to read how your treatment worked. Who would have thought it seeing you now!

    You are right though – those crazy beating hearts just remind me of how precious and unknown our lives can be xxx

    • Hey Louy, thanks for sharing – it’s freaky scary when it’s your health hey… I’ll be praying for your hubby. It WILL settle down, and here’s hoping they can get him off those betablockers sooner than they think!
      Much love to you both xxxx

  7. Thanks for sharing Jo. I am really enjoying your uplifting blog – your creative, romantic spirit and emotional connectivity, certainly reminds me of myself – hits home, complete understanding of what you are talking about.
    In regard to this post, I appreciate your kindness in sharing. I have only recently discovered about my low thyroid condition, and some days I feel like death but no one understands. It is invisible. Sometimes it’s completely ‘woe is me’ and other times (on the good days) it’s always about loving life in it’s good, bad and ugly stages! Everyone has a secret, often about their health… it’s nice to know we are not alone. It’s also nice to know… your body loves you back. The same way you love life. It will do all it can to keep you well and happy – all you have to do is love it back. Learn it, nurture it, respect it.
    Peace x

    • Oh Ilsa, that is SO lovely of you to say. And a perfect day for me to read this, as it’s been a hard day.
      Thank you for taking the time to write.

      All the best with your own health journey – I have a few friends with thyroid issues, I feel for you.
      xxx

  8. hi there your storie was somewhat comforting to me because I to have the coxsakie viruse.. not just one strained of it unfortunatly three different types . I have coxsakie virsus b5 b4 and 3 sighhhhh. 😦 the thought of this frigten me day by day as I look up answers and peoples stories on who have it. I have large amount of the virus that attack the heart and the hand mouth desease one and I think the other is respitory. online it say it take a week or days for this stuff to disappear docs even told me..what a lie its been months and still n my blood. I mso afraid .I live in america your doctors method seem very smart but I doubt any doctor here would know to do that. How should I cope with this first I had one problem which is numbess in my arms and back ever since I was little and then this 😦

  9. Wow what an inspiring story. I know how you feel. My mother and I both have the coxsackie B virus which attacked our lungs and we ended up with heart palpitations. Our homeopath then found the virus in our kidneys and bladder too. It’s such a nasty piece and really painful. We are still trying to fight it but at least we are not so chronically fatigued like we were months ago. It is such a long process though. The way in which it can attack organs is crazy. I know a lady who found the coxsackie has attacked her thyroid and her hypothalamus.

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