I’ve just been on holiday. In our caravan. In the part of Hampshire where the South Downs is just beginning to roll. In a week of crazy totally unseasonal September heat (30° on some of the days). Under glorious blue skies and strong sun.
We saw the majestic pines on Lepe beach, the arboretum and herbaceous borders at Exbury, strolled round the property-lust-inducing village of Chawton and visited the museum in Jane Austen’s house. We went on a steam train on the Watercress line from Alton to Alresford, had fish and chips in a pub, watched ducks float serenely on the beautifully clear chalk stream.
I wore a long-sleeved jacket and a below-the-knee skirt and a large-brimmed hat and put my UV-protective but nonetheless excitingly lace-trimmed parasol up when the sun was strong and direct. But I had sandals on my feet, and no additional layers.
2010 was the last year I went on holiday. During one of my better periods, we visited the same caravan site, a small square field bordered by tall trees. I knew the sunrise and sunset times by heart; we had a run of early starts and evening strolls, and for the rest of the time I stayed in the van and Pete went off on his own.
This time we dozed luxuriously through the dawn, watched dusk from the caravan windows and went on day trips like normal people.
At last I’m seeing the world in its true colours. Someone has taken away my box of subtle pastels and given me a primary school paint set.
Red orange yellow green blue purple
Rowan dahlia sunflower grass sky blackberry
Wham! Kapow! I’m still reeling.
Hooray for low-histamine diets, histamine-reducing probiotics, and dna-test-targeted supplements.
Hooray for my wonderful J, who gave me back every last leaf.
I am on the phone, talking to one of my telephone friends (this one has fibromyalgia and an autoimmune disorder and she lives in South West London). She is describing how badly she is affected when aircraft fly low over the house; it is getting so bad she may have to move, with all the disruption that entails.
And I feel it starting. Deep down in the centre of my brain: the embryonic stirring of a question mark, a tiny curl of doubt.
Aircraft? Really? Surely things can’t be that bad…. It’s a natural human reaction. Then I remember my own experience. I am ashamed, and I immediately suppress the thought.
For so many years, my situation was so rare, extreme and unusual that when I described it to people, often in an attempt to seek help, the response was usually incredulity. Somebody once said that three of the most powerful words in the language are “I believe you.” Their implied opposite is no less powerful. Repeated over and over again, the incredulity became a sort of psychic flaying, a periodic acid bath on top of the agonising burning of my skin.
I learnt all sorts of things during my years in the dark. I learnt how to locate and identify clothes and talking books by touch; how to find ecstatic joy in being well enough to clean the loo; how to sift, from a day of crushing boredom, a tiny nugget that might make my husband laugh.
The biggest lesson of all has been the importance of listening – really listening – to what people are telling me; keeping my mind open, no matter how what they are saying differs from my own experience of life; resisting the temptation to pull up the shutters of scepticism and think “this cannot be”; remembering that we understand only one small part of this wonderful, terrible world.
I needed this so much. And I’m just immeasurably, immeasurably grateful that the people closest to me gave it, absolutely, freely and without question.
I know many others are not so lucky.
One morning in June 2016, we get in the car in Hampshire and Pete drives up the motorway towards central London. The journey takes 2 ½ hours – most of that time spent crawling in traffic from the Hammersmith flyover. We drive slowly along the river in intermittent rain and I squeak with excitement as I spot landmarks from my previous life – the Tate Gallery, Millbank Tower, the Palace of Westminster, Hungerford Bridge – and marvel at the cranes and new apartment blocks now canyoning the Thames. It is a significant day in many respects: 23 June. We spot the Labour Remain Battle Bus, and ‘Independence Day’ posters.
Finally, I’m in the hospital and I’m talking to the consultant I haven’t seen for 10 years.
He is most interested in the histamine approach that has led to me being well enough to come back to the hospital. In his view my extreme skin burning in response to light with no visible sign would be classified as a type of cutaneous dysesthesia, a group of conditions characterised by very severe neuropathic pain sensations (including intense burning, itching and pain) – i.e. nerves responding inappropriately in a variety of ways. In some people this happens without particular triggers, in others there are triggers such as light, heat or touch. This is a developing area and this group of disorders is not yet fully understood; the current conventional treatment for such cases would be a drug such as Gabapentin, which is prescribed for neuropathic pain, and referral to a Pain Clinic. Given the success I’ve had, and the continuing upward trend, we agree it makes sense for me to continue doing what I have been doing, but bear the alternative approach in mind if things should become worse again.
Now I know, however, that I’m not the only burning person out there; that, actually, we are acknowledged by orthodox medicine, if not yet fully understood; that we have a name.
I was pretty normal until my early thirties. Then my skin gradually became excruciatingly sensitive to light. The condition grew so extreme that I had to spend most of my time in a totally blacked-out room.
Over the years I’ve tried everything to get out of the dark: acupuncture, meditation, hypnotherapy; spiritual healing, strange diets, internet pills; private doctors who could be persuaded to offer a telephone consultation or paid to come to the house. Sometimes I did manage periods of improvement when I went for walks, Dracula-fashion, at dawn and dusk. But these patches of hope were fragile and never sustained. Lying in the dark with my skin on fire I often planned my suicide.
I survived because of the love of my partner and my family. Because of talking books – I’ve listened to hundreds – that took me to different worlds. Because of unexpected telephone friendships with other people living with chronic illness. And because at my absolute lowest ebb, desperate to find something to do in the dark, I started to write about my experience [Girl in the Dark, published by Bloomsbury 2015]. [In USA, published by Penguin Random House]
Then something amazing happened.
The wife of a friend trained as a nutritional therapist.
She persuaded me to be her client number 2.
She looked at my whole case from first principles.
And she found the answer!
It’s not an overnight cure – I’m still very far from normal – but a steady, sustained, continuing improvement, going far beyond anything I’d dared to hope.
I’m coming back to light, to life and to the world, after so long alone in the dark. Each new step is intense and surprising and crazy and beautiful. That’s what I want to share in this blog.