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 to giving up hope, when my friend told me about a radio interview she’d heard with a woman named Anna Lyndsey, whose situation sounded awfully similar to mine.

My descent into darkness started when I was diagnosed with Lyme Disease in 2003. I took a 3-day course of the antibiotic Zithromax for a diagnostic test, and a week later was burned very badly on my face while riding in a car. That initial burn triggered my sensitivity to sunlight. Not knowing what I was in for, I nevertheless treated for Lyme disease for four years, using many different antibiotics. In 2007 I went off them, hoping my phototoxicity would go away once I stopped the drugs. Instead it persisted, and eventually became even worse, the worsening always triggered by light. At first only sunlight burned me, but in 2010, I had to take a few days of antibiotics and regular room lights started to burn. By the time I heard about Anna in late 2016, I was living completely in the dark, with blackout fabric over all my windows and my house so dark I couldn’t see my hand in front of my face. It would take me months to recover from an accidental flick of an untaped light switch. I used flashlights modified to be dimmer to navigate daily life, and had been completely housebound for seven years. When my family mentioned stories about someone who had recovered from an illness, I rolled my eyes and struggled to be polite. When I heard about Anna, however, I was interested. My husband, who had also experienced a milder case of phototoxicity from antibiotics, dutifully looked her up and discovered she had a blog where I could contact her. So I strapped on my several layers of dark face masks and went to my computer with the monitor covered by four layers of dark films. Using my few precious minutes of light, I looked up her book and took a sneak peek at the first page.

When I saw the first line, “It is extraordinarily difficult to black out a room,” and then went on to read about her contortions with blackout fabric, my interest deepened. Other accounts about photosensitivity typically sounded different from mine. They did not seem to describe the levels of darkness I required, but they also spoke of other symptoms like rashes and fatigue as a result of being exposed to light. I, on the other hand, only experienced the deep sunburn-like burning, and my fatigue did not seem linked with light.

I left a comment on Anna’s blog and bought her book. I wasn’t sure I wanted to read it. It was too close to home. The first few pages made me cry. But it was wonderful! Here was someone describing my experience, but so much more eloquently than I ever could have. We shared so much. I too consumed massive numbers of audiobooks. I too had attempted to knit blindly without success. I too had developed a love of words games to keep sane. Anna also responded to my plea for help.

She called me, and we chatted, her with her lovely British accent, and me feeling like a twangy American, and she put me in touch with her J. I had read Anna’s blog, so was already learning about a low-histamine diet and after contacting J began reading by flashlight about mast cell activation disorder (MCAD) in “Never Bet Against Occam,” by Dr. Lawrence B. Afrin. Mast cells are responsible for releasing histamine, and there is a spectrum of disorders in which they can become inappropriately activated. I had never heard of histamine intolerance or MCAD before, but once I was aware of them, I noticed here and there a mention of MCAD linked with Lyme. I had already done genetic testing and knew I had problems methylating, but when I tried supplements to support those pathways, they all exacerbated my other symptoms. This was generally true of my prior attempts to recover. I had grown so sensitive to pharmaceutical drugs and supplements, I was never able to pursue the treatments my doctors prescribed without getting worse. Nothing improved my light sensitivity. It felt like banging my head against a brick wall.

I started the low histamine diet and histamine-reducing probiotics. I also tried antihistamines and diamine oxidase, or DAO, an enzyme that breaks down food histamine, but in the beginning even a sprinkle of DAO caused a Herxheimer reaction. (If you come from the world of Lyme disease, you are familiar with Jarish-Herxheimer reactions, where you experience a worsening of symptoms due to the toxins created from die-off of the bacteria.) My husband happened upon a supplement called Neuroprotek that is a mast cell stabilizer (see reference below). Between the diet and probiotics and Neuroprotek, I was able to get back onto the computer regularly, and this opened up new avenues for me. I found a new doctor who began treating me for MCAD and diagnosed me with mold illness. His expertise is in patients who have become hyper-sensitized like me, and he has observed, along with other doctors, that Lyme and mold illness can trigger a “secondary” form of MCAD that is a bit different from what is described in Dr. Afrin’s book. He also started me on a neuroplasticity therapy to treat a maladaptation in the limbic portion of my brain due to the endo- and mycotoxins from Lyme and mold, and I have found it to be very helpful in my journey back into the light.

As for that journey, I started with ten seconds per day of exposure to a red light bulb. (Red light is the furthest from UV in the visible range of the electromagnetic spectrum, and thus the least likely to cause skin burning). I bought “party” light bulbs of different colors and with a dimmer switch worked my way up through the color spectrum. In December of 2017, I was very excited to have a string of Christmas lights. I screwed in more party bulbs and upped their wattage. I began to open my blacked-out window shutters a minute earlier every day. I cried from pure joy the first time I saw the sun again (while listening to The Cure). I hadn’t seen the sun in fourteen years. And I have had many other crying-from-happiness moments along the way.

Today, the lights are back on in my house, and I am blackout fabric-free. I’m able to go for sunset walks in the park, a little earlier each day. I have been eating out for dinner like mad and going to concerts, movies, and plays, and reconnecting with old friends. I can see my family again. I can see again. Like Anna, I experienced the mix of joy and wariness at seeing myself in the mirror for the first time in seven years. I have been caught several times by my neighbors dancing in front of my windows. I have also finally met my neighbors after living in my house for five years without ever having been seen. They probably suspected my husband of making me up! I think I will never tire of looking at the sky.

It is somewhat surreal to think back on myself reading Anna’s blog for the first time while all covered in darkness, and to be writing a guest post for her now, a year and half later with sunlight all around me. Words cannot express how grateful I am to her and the J’s…. I can say this, though—finding “Girl in the Dark” changed my life.

Resources I found helpful
For MCAD and histamine intolerance:
– “Never Bet Against Occam: Mast Cell Activation Disease and the Modern Epidemics of Chronic Illness and Medical Complexity,” by Lawrence B. Afrin M.D.
– “What HIT me? Living with Histamine Intolerance: A guide to diagnosis and management of HIT – A patient’s point of view,” by Genny Masterman. (Recommended by Anna in earlier posts.)
– www.histaminintoleranz.ch/downloads/SIGHI-Leaflet_HistamineEliminationDiet.pdf
– https://drruscio.com/mast-cell-activation-syndrome-clinician-researcher-dr-lawrence-afrin/
To read more about neuroprotek and MCAD, see
http://www.mastcellmaster.com/
www.ncbi.nlm.nih.gov/pmc/articles/PMC3314669/

For Lyme and Mold:
https://www.betterhealthguy.com (He has blogcasts you can listen to. Of note are “Mast Cell Activation Syndrome with Dr. Jill Carnihan, MD,” and “Mast Cell Master with Dr. T.C. Theoharides, PhD, MD.”)
http://www.neilnathanmd.com/events/ (He has radio show archives that you can listen to.)
http://lymemd.blogspot.com/2015/06/mast-cell-activation-disorder-mcad-new.html
– “Mold & Mycotoxins: Current Evaluation and Treatment 2016,” by Neil Nathan. (For a printable PDF version, contact the author.)

For Limbic Impairment:
https://retrainingthebrain.com/
– “Wired for Healing – Remapping the Brain to Recover from Chronic and Mysterious Illnesses,” by Annie Hopper.

For software that cuts down the amount of blue light on your computer monitor:
https://justgetflux.com/

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 frustration, isolation, wild joy at tiny improvements, utter devastation at relapses, absurdity and guilt.

Some come from people with other light sensitivity conditions, less absolute than my own.

A few are from people who are living in the dark.

These dark contacts give me the strangest mix of sensations: an overwhelming sense of kinship and fellow feeling, the primal comfort of not having been alone; a strong desire to stick two fingers up at those who said I must be imagining it, because such extreme sensitivity could not exist; deep tearing sadness that others are having to live in my particular intimate hell.

There are different ways in, and, let us hope, different ways out. I am so lucky I finally found mine.

Send a thought to the others, now and then, as you wander through the world.

 

The Pain of Incredulity

number-4I 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.

Café, with People

20131122-25nforgladeWe pick a dull morning in November 2015 for my first go at a café. Pete and I drive to the New Forest, to a wildlife park set among tall trees.  We arrive early, at 12pm, so there won’t be many people about, and we choose a table out of the direct glare of the fluorescent lights.

Pete goes to the counter to order our food. I have a baked potato with salad, and peppermint tea.  (Some things, I find, don’t change – those small metal flip-top teapots STILL pour water all over the table whenever you fill your cup).

The place fills up, and I stare and stare as I eat. I’m fascinated by people’s faces and smiles, their different sizes and shapes, their gestures and clothes.  I eagerly listen in on conversations in person and on phones. I even spot my first hipster beard, a phenomenon that, up til now, I have only read about in magazines.  It’s a fine example, black, silky and luxuriant, worn beneath large-framed spectacles in cherry red.

For so long I’ve had real people only in controlled doses, people I know, in ones or twos, very rarely more, and in my house. New companions joined me in the dark, as I listened endlessly to talking books, and for several intense hours I would follow their trials and tribulations, look on at significant moments of their lives.  But these were phantasmal beings, formed from the ectoplasm of words, edited, pruned, consistent, their very idiosyncrasies designed to facilitate the plot.

Real people are wild and weird and wonderful. They are hairy and bulging and scrawny and toned.  They discuss obscure matters with ferocious intensity but a maddening lack of specifics.  I feast on them as I eat my potato – I’ve been starved too long.

I still need to be prudent about the light, so we don’t hang around. After 20 minutes we get up to go – and I have the exquisite pleasure of discovering that not only did I not have to cook this meal, but I can leave the remains on the table, for somebody else to clear up.

 

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!

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.

 

 

Sticked