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Back to the light

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!  Or as I know now – in 2020 – the first part of the answer. I got well enough, thanks to her recommendations, finally, to track down a specialist in Mast Cell Activation Syndrome (MCAS) – and it turns out this is what I have.  MCAS was only identified in 2007, and recognised in the International Classification of Diseases in 2017 – so I managed, like so many other people with MCAS who’ve spent decades going from doctor to doctor trying to find out what is wrong, to get a disease before it officially existed.

I’m still very far from normal and I still have ups and downs – but my underlying improvement has gone 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.

An Australian Experience

I’m delighted to host another guest post, this time from Brandon in Australia. He had very similar burning symptoms, like me, with no visible sign. My name is Brandon Green. I am 34, male and from Brisbane, Queensland, Australia. I was very fortunate in finding Anna’s website right when I needed to in late 2021.… Continue reading…

And finally…it’s Mast Cell Activation Syndrome

Can you get a disease before it actually exists? Turns out you can!I first became ill in 2005 and ended up completely in the dark in 2006. For the next eight years I tried all sorts of things in the hope of finding a cure. Sometimes I managed to get well enough to go out… Continue reading…

Another Girl Out of the Dark!

I am delighted to publish this guest post from A. in the USA. She lived in total darkness too, and has found her way out. My journey back into the light also started with a friend called J. I was at my lowest point in my health problems and the closest I have ever been… Continue reading…

Sadly Not Unique

A black heart is a person living in the dark Since Girl in the Dark was published, I’ve had letters and emails from people all over the world. Some are from people leading normal lives, who simply love the book – thank you. Some are from people who’ve experienced chronic illness, who relate to the… Continue reading…

More about Food

Various people have been asking about the low-histamine diet. Unfortunately, there’s a lot of contradictory information on the web –  I’ve seen the same foods on a “do not eat” list on one site and a “totally ok” list on others; googling can send you quietly mad.  So I thought I’d share some info, based… Continue reading…

Holiday!

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… Continue reading…

The Pain of Incredulity

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… Continue reading…

Getting Better – The Science Part (2)

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… Continue reading…

“It’s all psychological…”

A girl and her mother, talking on the radio, stop me in my tracks. The girl had visual problems when she was eight years old, but specialists found nothing wrong.  They diagnosed her with “psychological blindness” and sent her home, devastated, confused, convinced she was a liar and a bad person. They found the brain… Continue reading…

The Difference that Day Makes

In a corner of our garden, just where the conservatory joins the brick wall of the house, a mysterious plant has taken root. It has elongated, slightly furry leaves that lie flat close to the ground, and tall slender stems, about 12 inches high, producing multiple branching flower heads.  Despite its elegant, aspirational appearance, it… Continue reading…