It’s been a while since I last posted here, mainly because so much seems to have been happening, but also because, well I was afraid that writing about vulnerability might unleash the waterworks, and then that they won’t stop.

Just before Christmas, hubby had two seizures whilst asleep, and after the second, stopped breathing long enough for the emergency call operator to have to ask me to perform chest compressions. After a few seconds of doing this, fortunately he started breathing again. That they were the most terrifying moments of my life, goes without saying. Having to wait ten minutes for the ambulance to arrive, felt like ten hours, and only then did it feel as if I myself could breathe. That they were paramedics who’d attended a few weeks previously when hubby had developed breathing issues as a result of a chest infection, meant that I felt even more reassured – I wouldn’t have to explain all about NF2 again, the brain tumours, restricted airway and what not – they knew and remembered.

Whilst slightly annoyed that the hospital had discharged us after the first seizure, saying that a second was unlikely, despite not having let hubby sleep, we now know that ‘after-shocks’ are likely for that exact reason – if sleep is denied. What was more annoying, was that after the second seizure, and once on the ward, the nurses couldn’t seem to be bothered to try and communicate with a profoundly deaf patient. After six hours of waiting, and having heard the doctor’s instructions to the nurses that morning, I kicked up a bit of a fuss and asked why they’d been sitting on the chest x-ray results, and why they hadn’t bothered updating us, when the doctor had said we could go home if the x-ray was clear. One of the nurses accused me of lying, not a good move given by that point I hadn’t been to sleep for two days. Needless to say however, shortly after a doctor said that we could go home, knowing that the NF2 centre would take over from Monday.

After rest, I felt able to tell a few friends and loved ones about what had happened. Their responses were all the same: “you’re so brave, I couldn’t have done that”, as if there’d been some sort of choice, and I’d decided to play the hero. I hadn’t – I just wanted hubby to live. Being told that I was “so strong” made me feel even less able to admit that actually, I felt scared, and isolated, and wasn’t sure I’d ever be able to relax properly again, at least whilst hubby sleeps. I didn’t cry for days, until I found myself gasping for air over the bathroom sink, after thinking about what might have happened. By then though, loved ones have started to moved on with their lives, and don’t have space to think about other people’s problems, about things which are difficult to comprehend unless you’ve gone through them yourself. So I battened up the hatches, and got on with things, trying to convince myself that I’m resilient, and that it’ll get easier. It does and it did, but not because I’m strong, but because time heals most wounds, and because I did tell a few people that actually, I felt a bit crap, and needed a cuddle and some cake, rather than being told I’d done well.

Hubby is now on anti-seizured meds, and he’s had an EEG which showed that he hasn’t developed photo-sensitive epilepsy, and that the cause is most likely the NF2 brain tumours. Whilst initially he felt quite down about having been given yet another ‘label’ –  someone with epilepsy, we’ve now accepted it as yet another NF2 side effect, one that with certain lifestyle modifications, doesn’t have to impact on our enjoyment of life. Indeed we’ve started planning lots of adventures, and treat the modifications as challenges. Can’t drink wine because of the high alcohol content? No problem, let’s start sampling British ciders. Need people around when hubby first falls asleep? No problem, let’s start inviting people over more often, and treat it as an excuse to decorate the bedrooms. Can’t drink coffee at night because of the caffeine content? Not a problem with a tub of real Belgian hot chocolate in the cupboard. So we’re making lots of lemonade with the lemons, and looking for ways round the obstacles. Instead of strong, perhaps you should tell us we’re determined!

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