Posted by Hayley Crawshaw

A little empathy

I’ve not posted on here for a while, mainly because I always worry about coming across as moany, but today I wanted to moan, so here goes.

We are currently experiencing a heatwave. Now as a gardener I know that plants need sunshine, and as a human I know that we need some exposure to sunlight, but unfortunately, not all humans can tolerate hot temperatures. I know that this might come as a shock to those who love the sun, worship and crave it, but unfortunately some people have medical conditions or are receiving medical treatments that mean that high temperatures can make them ill, sometimes very ill. For hubby, brain surgery for NF2 tumours has caused damage to his brain stem and hypathalamus. He’s also on chemo. All these things means that he can’t tolerate heat. For me, it’s the EDS and POTS which mean that I cannot regulate my body temperature when it’s above 24 degrees C.

When the thermostat rises, I have no choice but to make sure that I’m in a cool place, with access to a fan, ice packs and pillows, and when it gets close to 30 degrees C, an ice cold bath. Without exaggerating, I am constantly fighting heat exhaustion, and on too many occasions, have had to be brought back from the brink of heat stroke. For sun lovers, and those who’ve never seen anyone who experiences this, they seem to think that we’re moaning, that we’re just a bit hot and we should in the words of Peter Kay “just eat a Solero”. I wish. I really wish that eating an ice cream were all that it took. I hate not being able to travel to warm places, or to enjoy the sun here at home like many people do. I hate having no choice but to stay home after 11am so that I can ensure that I don’t get ill and collapse in public. I worry a lot that in the future, I won’t be able to find work that would accomodate me needing to keep cool – this is one of the reasons why I am fairly sure that I’ll go freelance once I have the PhD, so that I can manage my health without feeling as if I’m a liability, something which people with disabilities and chronic health conditions are often made to feel like. I worry too about people thinking that I’m being fussy, that I’m making it up. Sadly, empathy is often not forthcoming for invisible disabilities, even from those close to you.

Fortunately I now have sveral people in my life who don’t make me think as if it’s all in my head – (yep, I’ve had people say that in the past), and oftentimes this is through them having seen me when I’m not well. Strangers too have also stepped up to the plate. I recall a train journey last year where a man I had never met realised that I was in distress, and whilst everyone else ignored me (despite me not being able to stand up, and having spent the journey vomiting in the toilet) he helped me off the train and ensured that I was delivered into hubby’s capable hands. Other than those few people though, the ones who understand, I tend to make plans with as few people as possible during the Summer, so that I don’t have to cancel, and so that I’m not made to feel pathetic. I wear a false smile when people say “oh isn’t the weather lovely”, rather than being honest and then being seen as a grumpy old woman. I make sure that I don’t have to do anything too taxing intellectually, and that physically demanding jobs are done earlier in the year. Summer is very much something that I just have to get through. And it’s not just me who feels and experiences this. People with MS, other neurological conditions, anyone on chemo, they’ll all be suffering. So when it’s hot outside, spare a thought for those who will be debilitated by the heat.

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!

Alopecia and me

Long time no blog on this site. Mainly because I’ve gone back to school, and I’d forgotten how much time and energy using one’s brain in an academic setting requires. There’ll be an update on hubby’s Avastin journey within a few weeks though, once we’ve had the latest scan results.

Today I wanted to write about my experiences of alopecia. Fortunately I didn’t lose all of my hair, but at its worse I’d lost almost a third of the hair on my head. I’m not a proud person, and know many people, hubby included, who have to live with facial scarring, paralysis etc, so I was never going to get too worked up about something that to all intents and purposes is largely superficial. But when other people stared, or reminded me that I had large bald patches, even thought they meant well, it stung a little. I like to think that what matters most matters most, but unfortunately for many, this counts as appearance and image. After almost three years I’d gotten used to having bald patches, but I never quite got used to the ‘look’ when some of the other people who noticed, reacted in not the kindest way.

After being referred to the dermatology department I was given steroid injections in my scalp a few times (don’t listen to the doctor who says they won’t make you bleed – a nurse had to help me wipe the blood away), but they didn’t work. I’ve been using alternative medicine alongside conventional medicine since I was a teenager, so after spending some time researching therapies that I thought might help, I made up an arometherapy scalp massage blend consisting of grapseed oil as a base, with added cedarwood, lavendar, rosemary, and white thyme essential oils. I’d massage some of this into my scalp the night before I washed my hair. Not only does it smell gorgeous, it’s also great at helping to keep dandruff away, and at promoting relaxation before bed.

I also started seeing a reflexologist every few weeks. I love having my feet rubbed and it seemed a bit unfair to ask hubby to do it all the time. I realise that treatments such as this are a luxury, and not cheap, but you can pay to have cheap treatments at local colleges where they teach students reflexology, or you can buy a good book on reflexology and ask someone who loves you enough to touch your feet, to get busy. Alternatively, you can do it yourself. I have Laura Norman’s book: ‘Reflexology’, and to me it’s a foot rub heaven bible. The reflexologist I see is phenomenally good, and I always leave feeling like I’m floating on air.

The upshot of all this is that a few weeks ago, I was discharged as a dermatology patient because after over two years, my hair has started to grow back! I’m not yet the wild haired woman that I was a few years ago, but I’m getting close. The dermatologist just said to keep on doing what I’ve been doing, and whilst they cannot prescribe alternative treatments, these treatments definitely helped me. Yes this might well be down to the placebo effect, for those of you who think this way, but my gut instinct says otherwise, and it’s finely tuned.

The look

I’ve seen it a few times now. That look I get when I tell people that I want to work with victims of sexual violence. It’s a sort of quizzical grimace, and it’s hard to hide no matter how fleeting. To some extent I understand it. After all, why on earth would I want to leave behind a well paid job sector, for one that despite being necessary, isn’t? Why would I put myself through the agony of helping others at what will quite probably be the lowest time in their lives? Why would I want to remind myself that evil things happen, to women, children and men, and that they happen on our doorsteps?

Because I  no longer have a choice. For years, I secretly harboured this desire to help those who’ve been subjected to sexual violence in all its guises. When I met my husband, I told him, but kept it quiet from friends and family. That passion however, has now become so strong that I have to give in to it, and I no longer keep quiet about my aspirations. Training as an ISVA (Independent Sexual Violence Adviser), has stoked the fire, and whilst I’ve no idea where this journey will end, I know that I’m so determined, that I will find work in the field, and work that’s right for the skills and qualities that I have to offer. It’s unlikely to be well paid; I will have to deal with other people’s sorrow, anger and pain; and I will time and again realise that I’m not as worldly wise as I thought I was; but I will be making a difference. And for me, that’s what it boils down to. I’ve never been materialistic, I don’t hanker after designer goods, and I have a pathological fear of luxury hotels. I just want to help, even if it’s one person.

Shrinking tumours

Before hubby started chemo in August 2014 for one of his NF2 tumours – the one in his brain, we spent many an hour researching the side effects and prognosis. The general medical consensus was that Avastin stood a good enough chance of shrinking and then stabilising the brain tumour (schwanomma), but was unlikely to have an effect on the one in hubby’ spine.

After an MRI scan last week – one of the special ones where his head is wrapped up like an Egyptian mummy’s to stop the ABI device exploding out of his skull and making a bit of a mess, yesterday we were told that the spinal tumour has also shrunk a little! The brain tumour has as expected now stabilised rather than shrinking any further, but in the NF2 world stability is good. No scrap that, it’s bloody brilliant, because the alternative is major surgery, and we want to delay that as long as possible.

Normally a very optimistic person, even hubby is suprised that both tumours have shrunk. He’d been expecting to see no change in the spinal tumour at best, and likelier still to have to start talking surgery. So to come away with such good news has left us a little shell shocked to be honest. Despite always appearing cool, calm and collected, with not a care in the world, hubby has faced four lots of brain surgery so far, one of which saw the surgical team fighting to save his life when he developed a bleed on his brain stem. I hadn’t met him by this point, but I cannot imagine what that must have been like for mum and dad-in-law. Or for hubby, waking up unable to speak or eat because he’d been fitted with a trachy and breathing tube. It’s only down to his sheer bloody mindedness, and that of his parents, that he’s now able to eat normally. Admittedly sometimes there’s a bit of spluttering when he gets tired, and I have to try not to start performing the Heimlich maneuver as soon as he starts choking, but otherwise we enjoy our food.

The previous surgery was unavoidable because sadly NF2 tumours can still lead to an untimely end, and yes accidents happen in surgery, but knowing that he doesn’t have to go under the knife again anytime soon is such a relief. He’ll have another chemo dose in two weeks, and then as far as we know he’ll move on to four weekly doses, and they’ll scan him again in May. So between now and May we’re going to get busy planning our summer adventure. Something that involves lots of walking, wild swimming, and me freaking hubby out with my driving on the ‘wrong’ side of the road.