I saw somewhere that it’s Invisible Illness Week this week. With my Long QT I’m in the position of having a illness that’s invisible to others, and also to myself. To be fair is not really an illness since it doesn’t make me ill. It’s symptomless, and hasn’t really affected me in any other way apart from emotionally. So I had, in fact, decided not to write this. And then I saw a piece in the Guardian last week about living with Long QT (Laughing Could Kill Me) so hey, if it’s good enough for them (also prompted me to think about what comedy show I would like to die from if I was going to go that way. Haven’t decided yet!) So I hope this doesn’t sound self-pitying in any way. Because I’m really not, although may have been on on occasion in the past.
Long QT Syndrome is a strange beast. When my brother died without explanation, I was tested as happens in these situations. I was given an echo and an ECG that were both clean. Instead of feeling relieved, I was frustrated. We were looking for an answer as to what happened to Gareth. I was then sent for what they call provocation tests. They pump you with adrenaline and see what happens. I remember the doctor was hot, the nurses were lovely and being pumped with adrenaline and getting that overwhelming fight or flight feeling from nowhere was very odd. I was warned not to punch the doctor if I felt like it, which I did a bit!
I sat around for an age then, until my mum made a fuss I think, and dragged the consultant electrophysiologist away from whatever he was doing to give me the results. And so, hurriedly, he told me I showed signs of Long QT, advised me to go on beta blockers, and left.
And so I was left to try and get my head around what this meant with good old Dr Google. Not the best idea! I was soon reading tales of how it makes the heart a ‘ticking time bomb’, and the sad story of a new mum killed by the shock of her baby crying in the night.
Through the fog I came to learn that Long QT Syndrome is where the recharging of the electrical system after each heart beat takes longer than normal, and this can lead to a very fast, abnormal heart rhythm which can lead to loss of consciousness and sudden death.
From the BBC website: “Characteristically, the person suddenly faints or passes out during exercise or when experiencing intense emotions, such as fear, but it can also occur during sleep or arousal from sleep. There is usually no warning, or sensation of feeling faint or dizzy beforehand. In one in three cases where death results, the person appears quite fit and healthy, with no symptoms at all before cardiac arrest.”
Initially I started out taking beta blockers but they made me feel like a big old slug. Although they did make my heart rate look super fit on the heart monitoring machine things when I managed to drag myself to the gym! I stopped taking them after a short while and haven’t been on them since.
And since then, the only really tangible effect is when it comes to filling out forms! Recently I’ve had to search out life insurance to go with our mortgage. I’ve been turned down as apparently someone who has a known chance of dropping dead without warning is not a good insurance risk. I quickly learnt how medical forms could be a pain when I was too honest on a form I was given to complete when I wanted to go scuba diving at the Great Barrier Reef. I was gutted to miss this chance. Luckily I learnt to be more creative and was allowed to jump out of a plane a few days later.
To be honest, form-filling is the main time I think about the dodgy ticker. Or when I think about having children (it increases my risk and more worryingly there’s a 50% chance of passing it on). It’s also proved to be a good way of talking myself out of exercise (when it suits me), although I haven’t yet worked out a way of avoiding alarm clocks sadly. I’m also supposed to avoid hard drugs like Beechams Flu Plus.
It’s a funny thing to get to grips with. I have no sign of it but there have been nights where I’ve been scared to go to sleep in case I don’t wake up, especially in the early days. I sometimes feel like I should be living each day as my last, just in case, but I can’t frankly as I would soon run out of money! It has made me more grateful for the little things and more aware of trying to live a life that is meaningful to me.
I read an article in the Daily Mail that made me sad (ok, most articles in the Daily Mail make me sad) about two girls with Long QT who were being wrapped in cotton wool, understandably, by their worried mum. The story described how they are avoiding scary movies, dancing too much and fireworks. I hope they’ve all read about Dana Vollmer, who won an Olympic gold in the swimming, despite having Long QT. Inspiring lady (even if she has spoiled my excuse for not exercising properly, damn).
So yes, a bit of a ramble, but a therapeutic one for me! I hope it’s not come across as self-pitying in any way, because as I said, I’m not. In fact, if I was in the position having to choose a condition, one where I am not affected in any way so far and that might cause me to die of laughter, would be high up my list.