Advice Safe

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Ankylosing Spondylitis – just keep moving.

I have Ankylosing Spondylitis, it is a chronic, progressive, inflammatory rheumatic disease.  It’s shit, it’s painful, it affects the bones in my spine, particularly the ones at the bottom, the sacroiliac joints.   The disease causes continuous inflammation of the soft tissues around my bones and over time, the inflammation causes the bones to fuse together causing stiffness and rigidity. The process is horrifically painful. I am not special, it affects approximately .5% of the population.  It is a very odd disease to have, more common than leukemia, muscular dystrophy or cystic fibrosis, yet less known.

Ankylosing Spondylitis has quietly stolen part of my life, I do not talk about it too much as nobody knows what Ankylosing Spondylitis is.  Lower back pain is as common as the cold, so meh, it’s not exciting enough to warrant a conversation.  The symptoms and their severity vary from person to person.

 Because AS does not follow the same course in everyone there is no clear understanding for me, as to its progression. It is not known what triggers its onset and it cannot be cured, not a pleasant conversation to have so I quietly wonder if I will still be able to walk in my 60’s, lift my grandchildren, look after myself in my 70’s, or develop an ugly curved spine.  I talk about other things.

When I was in my early 20’s it seemed impossible for me to think that I would be able to live a healthy active life in my 50’s.  The pain and aggression of whatever was happening to me was unbearable and frightening.  At times, when I was lying on the floor, unable to move, use the toilet or call for help, I wondered; seriously considered if there was any point in living.

The thoughts were fleeting, my personality is to push through and get on, a shot of morphine, mind altering drugs, a back support and a week of rest usually got me back on my feet before I could feel too sorry for myself.

We are old friends now, AS and I, we have lived together for over 35 years.  I understand the disease and am able to manage it, for the moment, with the help of an eminent and dry-witted rheumatologist, who finds it hard to crack a smile and has a thick black moustache.  When I first explained the dull ache, I could feel deep in my hips, the stiffness and pain in the mornings, the intermittent switching from side to side and then a few days pain-free but then the chronic breakdowns which sent me to the A & E, I was asked to touch my toes.  I now know I have hypermobile joints, so was able to push through and bend to touch the floor, bend backwards and demonstrate an impressive chest expansion. It confused the specialists.

I was poked and prodded, had x-rays, blood tests, coloured fluid was pushed through my body, along with electrical currents and magnetic fields.  Years of tests eliminated much but answered nothing.  I had nonspecific back pain, sorry, Goodbye. I refused an exploratory surgery when I got scared in the pre-operation room, drowsy from the pre-meds. I thought about the list of risks I had just agreed to.  The Specialist was cross, I never spoke to him again, went home and took too many painkillers for too many years and was a regular at the local A&E department.  I vowed to never see a doctor again about my back pain.

I carried my first child easily and gave birth normally, quickly and without any complication.  The problems came after.  The bones that move to give life did not like doing so, I had poked a very big pain bear.  The breakdowns would happen after weeks of chronic pain, I would simply fall to the floor and muscle spasms would mean that the tiniest of movements set off waves of nauseating pain. Once this happened on the way back from the movies, in the street.  It’s kind of like being shot in the back.  I remember a particularly bad episode when I collapsed in the hall with my beautiful two-year-old holding my hand. She had the run of the house, which was terrifying. I could not get her to fetch the phone, but she did spread yoghurt all over herself, she brought me teddies, books and a banana instead.  My husband came home to find me unable to move, distraught for our child’s safety and still in crippling pain. I had not been able to get to the bathroom, so the humiliation sat in a damp patch beneath me.

 The ambulance driver asked me to scale my pain from 1 – 10, it was still at 20 after my first shot of morphine which they had use to get me into the stretcher.  I am not a baby, both kids were born with no medical intervention, I have a high pain threshold, the pain was bad.

I spoke to my doctor five years later, after my second child and told her I was sick of living like this, I needed more pain relief.  The soup of drugs I was already taking was making my doctor uncomfortable, she listened and tapped out a referral for me to see another Specialist.  I cried and told her I did not want any more tests and begged for the drugs.  She said my lifestyle was not sustainable and that this new doctor was young and full of energy.  I was emigrating soon so agreed and left with my last script of muscle relaxants and pain meds.

The young doctor was handsome and shook my hand and invited me to sit in a big brown squishy chair six months later. I was packing my house to move across the world.  He noted me shifting in the seat for a comfortable position, smiled and asked how I was feeling.  I answered robotically, listing my symptoms, he listened and nodded.

Well he said Its pretty obvious you have Ankylosing Spondylitis

He gave my pain a name.

I cried and hunched into a chair ball. He was concerned and asked if I needed a drink of water and assured me that there had been great strides in the understanding of the disease. He explained that while there were no preventative measures at the moment, my disease could be very well managed.  He told me he was deeply saddened that I had gone through so much but actually the fact that I had been so active and ignored the symptoms was probably a good thing.   Moving is a good thing for AS sufferers.

My tears had been misunderstood.  I was happy, happy to hear that I actually had a proper definable disease. After years of being told to go away, rest, take pain relief and having my mental health questioned, I was being told my pain was real and it had a name.  He started to outline a management program, I explained I was emigrating and cried again from pure frustration that after 15 years of non-diagnoses the man before me was able to help and I was moving to the other side of the planet, about as far away from him as possible.

‘New Zealand’ he said and laughed.  ‘One of the world’s leading experts in this field lives there!’ I blew my nose.  He rummaged around and pulled out a card and scrawled down a name and address for me.  He told me to call my doctor and get all the medical history I could, copies of all tests and X rays, take them with me across the seas and give them to the man whose name was on the piece of paper before me.  I wanted to hug the young doctor as he showed me out of his office.  Instead, we shook hands again and he wished me luck.  He shook his head, again saddened that I had gone through so much unnecessary pain.

That’s the thing, Ankylosing Spondylitis is diagnosed in part by medical history.  It often goes unrecognised for years. This fresh new Specialist had suspected my condition by reading my medical history before I had even entered the room.  He told me he would make an appointment for a blood test to check for the presence of HLA_B27 its presence would support his diagnoses.  I asked if I should have my children tested for this B27 thing?? Have I given this future to my children I began to worry.

The answer was no, because statistically out of the 50% of children who would have inherited the gene more than 80% remain totally unaffected.  He told me that the children should know my medical history though.  So here it is, the reason I write it down today.

I wished him luck in his new career and explained that he had just changed my life, we were still in the doorway.

A couple of weeks later the test came back positive.  I carry the HLA_B27 gene but so does a significant percentage of the healthy population, they are working on the trigger, it’s viral they think.

When I looked at that piece of paper again in my new country I discovered that the specialist lived 10 minutes away from me, the odds of that happening were far higher than me actually contracting the disease in the first place.  Life gives and takes. We met, he was trialling a new drug, I was too scared to be part of the first clinical trial but accepted, when the drug was offered again.  It works, there are unknown side effects because it is truly too new to know, but I do not care if my life ends prematurely because I can now work again, play sport, run….I can live, relatively pain-free.

A side affect t of having an unknown in your life is, that it makes you a little more able to take risks and live life without negativity, be grateful for each new day.  Life is too short to wait, I laid on the floor, looking at the ceiling for a long time, now I look at the horizon and try to shove it all in before I fall down again.

I have Ankylosing Spondylitis, it is a chronic, progressive, inflammatory rheumatic disease.  It’s shit, it’s painful, it affects the bones in my spine.  Kids it doesn’t mean you will, in fact it’s highly unlikely.  Go run and jump, feel the wind and the rain and smile into the sun.

6 thoughts on “Advice Safe

    1. Thank you. It’s been part of me since my late teens so i had forgotten what normal felt like. Life gives some and takes some, the trick is to enjoy the giving!!

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  1. Let’s hope advances in the medical field continue to find ways to give relief to everyone suffering from chronic pain and other medical issues.
    I hope this for my hubby too, who suffers with chronic pain…so draining 😶

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  2. It made me cry to read this Elaine, knowing full well what you have suffered. I remember once coming home from work to find an empty house. A note from Dennis told me he had received a message from you that you were lying on the floor unable to move. If memory serves me right, Helena, just a toddler, had managed to bring you the phone. I caught a bus straight away to get to you to find paramedics giving you morphine so they could get you into the ambulance, such was your pain. It’s heartbreaking to realise that your own child has such a cruel disease. As a parent I somehow feel guilty!! At least I’m glad I talked you out of a hip operation which some quack doctor advised when they were trying to get to the root of your trouble. You are a brave girl and have dealt with this with such a positive attitude. I think and worry about you constantly. Stay strong. You are in expert hands at last. One more good reason for moving to NZ. Loads of love. Mum xxx

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    1. Yes your memory is right, that’s one of the big memories for me too. That happened so often the A & E staff knew me!! You and dad gave me the gene along with an amazing childhood and everything else is above average. hahahaha. Don’t be sad, I am so grateful for what I have. Everyday I laugh hard, you and dad did good. The sadness is that it took so long to diagnose but hey I am a very lucky lady to have found the specialist. There are many AS sufferers out there without the drug I take.

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