Posted in Seizures

Strong

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!

Lipseaking for the paramedic

Hubby had a seizure in the early hours last Saturday. We were spending the weekend with mum-and-dad-in-law at a holiday cottage in Monmouthshire, Wales and had arrived the previous afternoon. By 1am I was on the phone to the ambulance service, trying to direct them to a building in the middle of nowhere when I didn’t have the full address, or clear headedness to think about giving them a grid reference. Fortunately they were able to find us from the information I was able to provide, whilst the lovely man on the end of the phone looked at holiday cottage websites for the map and postcode.

I knew there was something wrong instantly. Hubby had had a seizure 20 months ago and whilst we were hoping it was a one off, I’ll never forget the noises he made. Because of damage to his throat and tongue made during and as a result of previous surgeries, he tends to snore quite badly. He also has difficulty swallowing, especially when he’s tired, and has to drink so much water to get the food down that he tends to fill up on this rather than actual solids. During the first seizure he’d made noises that sounded like he was desperately trying to draw breath, and amplified by the plastic valve in his throat this created a sound that’s extremely difficult to describe, but not forget.

Waking to this sound again, at least I knew what to expect when I turned on the light. Seeing someone you love so physically vulnerable and exposed is never easy though, no matter how many times you experience it. Fortunately mum-in-law is a retired nurse and on both occasions we’ve been lucky enough to be staying with her, so she didn’t panic when I roused her. After we put him in the recovery position she stood guard whilst I phoned for the ambulance and had to keep running up and down the stairs to give the paramedic a status update, whilst making sure I was there to greet him with a torch on the remote country road.

I felt a slight relief when those blue flashing lights appeared, and guilty that I never asked the paramedic his name. But we’ll never forget him. Faced with a deaf man in the post-ictal phase of a seizure, he didn’t bat an eyelid about having to use me and mum-in-law to speak to hubby. Hubby is normally a brilliant lip reader, but in a confused state and despite having a wife with a strong South Welsh accent, there was no way he was going to be able to understand lovely paramedic man, at least not today.

My heart sank a little when hubby wasn’t able to say where he was and what month we were in, but then relaxed when the paramedic asked me for details such as his birthday. Given that I could only respond “it’s the week after mine, if that helps,” I realised that under stress it was no surprise that hubby was finding it difficult to remember certain things. Thankfully mum-in-law saved the day and prevented me having to locate my own driving licence.

Satisfied that hubby was stable, especially when he started grabbing the paramedic’s wrist to see what the time was, and asking about the ambulance car, we unanimously agreed not to force him to go to the local hospital. After the last seizure he’d had to stay in a different hospital for 5 days because they had little experience of NF2. At one stage he’d threatened to escape, so to avoid a repeat we decided that we’d follow up with his medical team back up north. We don’t know what caused the seizure. It could be a case of several triggers coming together, it could be the brain tumour, it could be a combination of all these things, or it could be something else all together. We may never know.

What we do know is that I’ll be watching him like a hawk again for a little while. He’ll no doubt get fed up of me reminding him not to drink too much, to go to bed earlier, to wear a hat and sunscreen and drink lots of water in the sun, to eat regularly and to rest when he needs to. But that’s a small price to pay, and he assures me that he married me partly because he likes assertive women.

Sleep has gone out of the window again for me as I’m up and alert at the slightest change in his breathing pattern or usual snore. As I work for myself I can sleep during the day though, and we’re getting into a routine whereby he knows that he has to get to sleep by a certain time, and I feel relaxed come 5am and he’s ok. Cat napping works wonders, and I’ve always been able to get by on very little sleep. I may be cranky as hell mind, and eventually collapse, but I can function better than most.

More than anything, hubby is gutted that he won’t be able to drive again for a wee while. Driving and rallying is a passion of his. It gives him an independence which is highly valued when some might consider him disabled. Thanks to a disorganised DVLA it took him several months longer to get his licence back the first time, so now he’s dreading having to go through the same. Fortunately we’d changed the car a short while back and ‘Skyra’ – our little 4×4, runs like a dream. So I’m happy to chauffeur hubby, and put the car through her paces, whilst hubby clings on for dear life and wiggles his finger at the speedometer.

The day after the seizure, not surprisingly hubby did feel low. When he started talking about “giving up” I had to go elsewhere and have a little cry, because if he gives up, I give up. He is my world, and I will be there every step of the way for him. I can deal with things like this happening. We’re both tough cookies. We both go into warrior mode very easily, and over the years I’ve certainly earned my nickname – ‘Dragon’.

Fortunately his low mood passed, and we’re dealing with the uncertainty and difficulty of living with such a rare and complex condition as NF2, by doing what we do best – planning lots, and lots of adventures. We now have a list that covers all bases. Different places that we can go to, and different things we can do, depending on how tired hubby is between chemo doses,  and if and when he needs brain surgery. In our eyes some of the plans seem quite calm compared to our usual adventures, but other people are still likely to see them as quite extreme, and it’s this pushing the envelope that helps keep us sane. No one knows what the future holds, but we do know that we can live fully in the present. When life gives us lemons, we make margarita’s.