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 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.

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.

Getting Better – The Science Part (2)

anna-lyndsey_steps2One 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.

“It’s all psychological…”

pugl_green shutterA 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 tumour eventually.  By the time it was removed, she had lost most of her sight.

My consultant never told me my condition was psychological, and my partner and close family, who knew me, and saw the evidence at first hand, never doubted the physical reality of the extreme photosensitivity that had devastated my life.  But in the space between the two, I was constantly bumping up against the “it’s all psychological” attitude.  People with minimal knowledge of my situation – beyond that it was rare, terrible and continuing – felt entirely entitled to pass this judgement, this casual invalidation of my whole experience.

Via the telephone that became my lifeline, I got to know other people with chronic conditions.  The same thing had happened to all of us.

What’s going on here? Two strands of thinking, tangled up – I’ll call them the ‘strong’ and the ‘weak’ hypothesis.  I had my purest experience of the former when a Reiki healer came to my house.  After asking whether, when I went into the light, I felt “exposed… lots of eyes looking at you”, and whether I might subconsciously believe that my relationship only kept going because I was ill, she announced “Ah well – there’s always a benefit, isn’t there, even if we can’t see it.” – i.e. my blacked-out room and agonising burning skin were manufactured by me to gain some obscure psychic payoff.

And the same applies to all illness, everywhere, according to hard-core New Age bibles (bowel problems manifest a fear of letting go of the old, back pain indicates guilt…).   I have even heard it said that a woman aged 59 whose cancer became inoperable could not face retirement with her unpleasant husband, and thus took this way out.

This position seems to me to be a turning away from the tragic reality of life.  We are psyches embodied in the material world, liable to be knocked about by genetic susceptibility, environmental exposure, or simple chance; loving, loved, contented people, bursting with plans for the future, are cut off, every day.  The theory is also absurdly narrowly focussed historically and geographically – I have not yet seen a metaphorical theorisation of the Ebola virus, or bubonic plague.  It seems a necessary adjunct to the New Age theory that you can get whatever you want in life, and that therefore whatever you get (such as a massively frustrating chronic illness) must in some way be what you wanted.

For me, the following gets closer to the human condition, whether you believe in God or not:
“Grant me the serenity to accept the things I cannot change, the courage to change the things I can, and the wisdom to know the difference.”

So much for the ‘strong’ hypothesis.

The ‘weak’ hypothesis divides illnesses into two categories.  High blood pressure, heart disease, cancer etc. are ‘respectable’ diseases with an underlying physical cause.  However, unusual conditions that people have not come across before, and illnesses for which doctors do not have direct treatment, especially those that go on and on, boringly, for years, without either killing you or getting cured, are in contrast thoroughly disreputable and must therefore be psychological in origin.  “Can’t the doctors do anything about it?” a visitor asked me incredulously, as we sat together in my black room.  Ah, there speaks one of the blessed, whose faith in the capabilities of human knowledge is as yet unbattered by experience.  The sea of what we know is vast; the ocean of the unknown vaster.  We could all use some humility in the face of the as yet untreatable or unexplained, rather than reaching so quickly to close the door and bar it with a psychological explanation.  As research progresses, conditions push their way through the barrier – Gulf War Syndrome, for example, dismissed for years as psychosomatic, until finally a distinctive abnormality was found.

Such ‘explanations’ frequently support the vested interest of an establishment unwilling to change entrenched policies or compensate those harmed.  In a more intimate sphere, the associates of a chronically ill person – who is often demanding in terms of sympathy and care – gain the pleasure of superior insight, a justification for withdrawal, the spurious comfort that ‘this could not happen to me.’