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  • The Member Stories section of our site is a place where members can submit the stories of their experiences as a person living with dysautonomia.  We also link to member stories that have appeared in our newsletter.  Please note that Member Stories are not edited by DINET and the views and beliefs expressed in the articles are strictly the views of the member.   Please note that the stories submitted are reviewed for content and should follow the guidelines of the site.  We do our best to publish each story submitted,  but publication is at DINET's discretion. If you would like to submit your story, please write to webmaster@dinet.org - include "member story" in the subject line. 

Ever Been Hit by a Wet Kipper?


by Lady Amelia Noble 
July 2006

I remember my 13th birthday as if it was yesterday, but it’s not because of the cake, presents, or any of the normal stuff associated with this special day.  No, I spent the day before my birthday, the actual day, and the following day in bed with what my grandmother said was ‘wind.’  It made no difference to her that I had consumed vast amounts of milk of magnesia, Epsom salts, and rennies.  None of these made my chest pain, sweating, inability to eat or walk dizziness go away.  It was still wind.

So there I was, fifteen years old and never been kissed.  However, when my grandmother found me unconscious one day on the hall floor from yet another episode of my profuse sweating and passing out, I was immediately taken into the women’s gyne ward as a suspected eptopic pregnancy.  Boy, oh boy, did they have red faces and shuffle their feet when I was found to be virginal intacto!!!!

And this is when it all started-- the tests, x-rays, bloods for everything you can imagine.  They prodded and poked and had long consulting conferences with my grandmother about what she thought was wrong with me.  None of this helped me.

In the end, they still couldn’t put a name to what was wrong with me. They all agreed that I did have a medical condition, but to cover their ignorance, I was branded as a teenager who was attention-seeking and sent to see a psychiatrist.

I spent many happy afternoons talking to this lady about everything under the sun, and after six months of this, she declared me saner then herself and sent me back to the clutches of the hospital consultants.  Ah, but this time a new tactic was brought into play, and I was sent to the national hospital in Queens Square to be seen by a famous man by the name of Sir Roger Banister.  Hope was at last on the horizon.

But after even more extensive tests, he discovered I couldn’t stand with my eyes closed or touch my nose with my index fingers.  My blood pressure kept doing strange things, and my heart beat was that of a top class Olympic athlete.  After he discovered all this, he declared that there was something very wrong with my autonomic system, but he didn’t quite know what!  You have to understand that this was when the tests for our condition were in their infancy.  My tests at the time were a case of trail and error to find anything wrong.  Since then, 35 years have passed, and they actually know what they are doing now, or so we are lead to believe.

Having a mystery illness with strange symptoms made my life very eventful from then onward.  Illness after illness followed me about as if I had a sign over my head inviting bugs to take up free residence in me.  The local hospital had more of my internal organs in jars on shelves than I actually have left in me.

I married and had a daughter.  I had terrible problems in labour, but this was put down to being a first-time mum.  And since I’d been seen by that psychiatrist all those years ago, I was still battling the old ‘its all in her mind syndrome.’

My second baby was more of a problem, which they still tried to ignore.  However, 10 days after my second child was born, all my main organs started to fail.  That shook them up a bit, and it wasn’t pleasant for me either.  But still, the hospital kept making claims that it was somehow a quirk of fate that I kept having all these illnesses and conditions.

I was divorced and then remarried, so I wanted another baby.  Once again, terrible problems with my health began, and I was at risk of having a stroke.  Because of this, my son was induced weeks early.  After he was delivered, I spent 6 months going through another session of chronic health problems, but yet again, I was ignored by the medical profession.

I suppose, after this, I just accepted that whatever it was that I had was never going to be given a name, and I got on with my life as best as I could.

In 1997, I was in involved in two car crashes within 6 months of each other.  Both of my cars were written off by the other party’s inability to drive correctly.  As well as loosing my cars, I suffered broken bones and whiplash from the crashes.

Within a couple of months of the last crash, my husband (now ex-husband) took a liking to my family’s property and money.  He decided he would like to have total control of this wealth, but without me.  And so he spent many days amusing himself trying to ‘get rid of me by fair means or foul,’ and I incurred more injures on top of those from the car crashes.  All of this, in addition to my ongoing, underlying problem, meant I was really starting to suffer.

In 2000, I made the courageous decision that enough was enough, and I left him high, dry, and penniless.  By now, he was facing actual bodily harm and attempted murder charges against me.  He was arrested and committed to a psychiatric hospital.  In the mean time, I packed up most of the house and moved my son and myself to wonderful, glorious Devon.  This was a place where I had spent many years in my youth and where I felt safe again.  This was the turning point in my life.  

Now divorced, I bumped into a man I had known when I was sweet 16.  He was divorced and had also returned to Devon to start a new life.  It took just one look, and ‘I just knew.’  From that day until this, the emotional, security, and financial side of my life was settled.  Together, we are like cheese and pickles, Beauty and the Beast, Romeo and Juliet…made for each other.

In 2002, we married at a very emotional ceremony by the sea.  It was supposed to be a quiet family affair because I was so ill at that time, but our village had other ideas.  The registry office was packed to the rafters as we recited our own special vows (hand written by me) to each other.  Everyone in the whole room started to cry, including the registrar, our local vicar, all of our own children, and us…not a dry eye in the place.

However, all was not well in paradise.  A wonderful, romantic trip around the Caribbean set off the worst bout of autonomic problems I have ever had in my life, and I ended up in the ship’s hospital with more mystery symptoms.  Since that day, my health has been in a downward spiral.

So, it had been some 35 years since Sir Roger Banister declared that he knew I had something, but he did not know what it was.  In 2002, I was diagnosed with Autonomic Nerve Dysfunction, by chance.  A doctor was running tests for geriatric patients and heard a group of consultants discussing my ‘strange problems.’  He suggested that he test me as well, as there was nothing to loose.  I was given a tilt table test…The rest is history.

The worst thing about being like this was that I had to give up running my own companies.  But then I discovered that I could write and make people laugh, so one cancels out the other, in a way, and now I write for a living.

My condition has its good days and bad days, and then there are the days when I just cannot cope because every single nerve in my body is screaming at me.  I was once asked by a very eminent professor to describe to him the face/neck pains I feel.  ‘Tell me in as much graphic detail as you can,’ he said.  Thinking about it for a couple of minutes, I replied:

‘It’s like being hit on the side of the face with a large wet kipper that’s been dipped in sand.  You have the sharp dragging pain followed by the side of your face being highly sensitive, like the skin’s been taken off with sandpaper.  You feel like your eyes are being dragged out of the sockets, each tooth has an abscess under it, and half a gallon of water is cascading out of you eardrum.’ …He said nothing.

So when I have one of my really bad days, I think of my sandy kipper smacking all those doctors around the ears for all the years when I was treated like a raving lunatic-- their eyes popping and teeth screaming.  Oh, that makes me feel better.

I do try to cope as best as I can with all the little nasties to which my body subjects me.  The tiredness is overcome by sleep, sleep and more sleep.  The pain, which has now reached a rather chronic level, is treated with high-powered painkillers.  Oh! ...Pretty lights and shapes, and why is the room moving?!!!!

The sickness and bowel issues are a bit more of a problem.  The sickness is sometimes held back by drugs, but more often than not, I don’t take them soon enough.  This leads to my hubby, with his nose covered by his t-shirt, ready with his plastic bucket to assist me.  He cannot stand the sight or smell of sick and has, on many an occasion, merrily joined me in the bucket.  We have had a husband and wife session while poor 15-year-old son was left with the aftermath.  Now that adds a new twist to sharing everything together!

As for my digestion system, well by now I must have taken enough laxatives to move the entire bowels of the world.  I’ve eaten a plantation of pineapples and kept Jamaica banana industries in profits for years.  This is in addition to the hundreds of stewed prunes that have unceremoniously been stuffed down my throat at night in an effort to ‘shift the problem.’  I can tell you that there have been times I wondered how I haven’t pulled the radiator off of the bathroom wall or bitten a chunk out of the towel rail with the bowel contractions I’ve had.  Any poor soul entering my house on such an occasion would think I was giving birth with the amount of noise coming from the bathroom.  They would have to be quickly assured that hot water, towels, and a midwife is not necessary at this time.

My sweats leave me dripping all over; little trickles run down my back.  Bigger trickles run on the insides of my legs, making me leave strange wet patches on people’s chairs if I sit down.  Of course, I do tell them that I’m not incontinent and that it is due to my sweating.  I get a nod of the head and a knowing look followed by an ‘oh, of course dear.’  Hubby has had many an incontinence pad quietly offered to him from friends.

Along with the heart problems, headaches, arthritis, and Raynaud’s, I’ve had tumours that like to attach themselves in strange places (so strange that the surgeons almost have to stand me on my head to evict them).  And then there are all my other problems that have attached themselves over the last 35 years, all intent on trying their hardest to bring me down or finish me off.

But, through all this, I still hold on to the same philosophy of life I had when I was a child:

I will only pass this way once. However bad I feel, it’s not anyone’s fault, so I will try to be positive and find a reason to laugh, even if it’s at myself.  Laughter is the best medicine you can have; it costs nothing, and yet it can lift a heavy heart.  It can bring hope when all seems lost around us, and we all need hope in our lives.

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