Category archive

Carpe Nubem – Seize the Cloud

“The condition waxes and wanes,” says Mast Cell Action’s useful and informative website. And goodness, how true that is. Since I last posted here, I’ve had a good phase, a bad phase, a good phase, a terrible phase and a period of wild oscillation.  I’m now in an in-between phase, which is so weirdly particular it deserves its own post:

The key question in my life at present: “Is it reliably dull?”

My top two websites: BBC weather and the Met Office.

The phrase that irritates me most: sunny intervals.

My most unexpected object of aesthetic appreciation: the wonderful variety of overcast skies – from flat white to puffed and wrinkled grey to ordered stripes stretching into the distance like waves on an upturned sea.

My best recent meeting with old lost friends: the red kites circling over our suburb, giving their long melodious whistling cries. They are nine-to-five birds, and for a while I have been crepuscular again, a creature of dawns and dusks. Our paths have not crossed.

The strangest part of all of this: the need for me to play against type. I am obliged to become wildly spontaneous, to act without delay or deliberation on the promise of a cloudy morning or afternoon. If the weather looks promising, I throw on my coat and hat, bundle my husband into the car, and head out. Sometimes our destination is unglamorous: Boots the Chemists or the big Post Office in the nearby town. But one day, we drive along winding back roads to the Vyne, where, in the walled garden, the daffodils are in bloom.

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

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

Getting Better: The Science Part (1)

Here’s how the miracle happened. It’s such a totally cool miracle, it’s got scientific references…(see end of post) 1. J, wife of friend and newly trained nutritional therapist, persuades sceptical, grumpy Anna (who is pretty ill at this point) to write out a detailed medical history, describe all the treatments she’s tried, muster the results of… Continue Reading