A.S. Face 0086: Julie Labbé nee Sharland

My Name is Julie Labbé nee Sharland and I am 43 years of age.  I was born in Wellington Somerset on a January night in 1968.

I was fine as a child,..  good health, had an issue with light especially in the snow it would kill my eyes but other than that I was a fit kid,..  had terrible growing pains and pins and needles but I was health fit and strong, did very regular dance classes – I studied Ballet, Tap and Modern Dance, so you can imagine from the age of four to thirteen i developed a very strong structure. At twelve years old I was two exams from taking my teachers.

One day, whilst walking through a field that led to a park and some allotments – with a friend – i heard someone known to me come running up in very long grass, he was shouting that he was going to do something to me, I thought no way!!  he grabbed me a struggle ensued, he slipped down a rabbit hole…  as I was very flexible the top half of me twisted completely to the left and my waist down twisted to the right I was kicking him in the shins then the rabbit hole all added up to a loud crack…  he put me to the ground and apologised saying I had no idea you were that strong… I could not walk.  I was in agony.  Our plans of having our own allotment came to an abrupt stop…  I have not been able to garden since.

I carried on as normal as could,.. went to school, although told off for getting to every lesson fifteen mins late each time, tried to play sports, got told off for hanging over the hockey stick,.. even walked to ballet and did an hour or two’s lesson every night, all day saturday all I must add in sheer agony…  I could not really put my toes to the floor, i could bearly walk..  I will give you an idea of how painful this was,… my thighs swelled up and rubbed together ( I was not fat at all) I had blood running down my legs and blisters on my feet,.. I looked down at my feet my socks were covered in blood.  I could not feel it!!  that was the pain.

Time went by and I had to tell my mother that I needed to see someone about my back,.. it was unrelenting – at 16 years old I saw a doctor who promptly informed us that i had broken my back at the time of attack, and that I had something called ‘Ankylosing Spondolytis’..  should have been in traction for at least ten weeks, my muscles had held me together.  Was informed that an operation will be needed in the future.  They had no idea how I managed all that time.  Was put in a big corset that had metal bars in it, pain killers and off I went.

I managed, I coped.  I had to live a teenagers life somehow, and something inside me thought by this time that everything I was enduring was normal for everyone…  all be it the lower back issue.

I have had to endure being called lazy, that started at the time of the broken back, (I was a very personal person, I would not tell people anything) slow, bad at sport,.. you name it something was thrown at me most days…  I thought, “If only you knew, I am strong mentally and physically”  I have lived knowing that most people would crumple to the ground, would not want to live.

I went to nightclubs,.. I wore and still wear when I can, high heels,.. I learnt to drive, and held down jobs, held my head up high looked like there was nothing wrong….  Have not ridden motorbikes, horses,.. and many fairground rides. I returned to college at 23 years old and yet again hid that title of A.S  I didn’t really know what it meant, no-one at that time had really ever heard of it so it meant nothing much to me at all.

At 24 years old i fell pregnant with my first child……. the pain went!!  I obviously had some backache but it was very much different,… I went full term and had a normal labour……. omg the pain in my back during that was horrific!!, but not as bad as what was to come the days after having him…….. all i can say to that is Shit!!! AGONY…  obviously breaking the spine was somewhat worse but I did not have to bend carry etc constantly… I had to grab help whenever I could and just brushed it off,.. I mentioned once or twice that my back was really sore,..  in time I was looked at as being terribly lazy,..  I was doing,..  but doing at my pace, I have no idea how it looked,.. but I sure know how it felt!!!!!  like i was sawn in half and hanging on by threads…  I could not use the bathroom sink to brush my teeth! or sit with ease on the loo,..  nightmare.

I got married, moved away and that is when more help from dr’s came about.  I was spotted struggling with my baby and walking in pain around camp by the camp dr…  he told me to make an appointment for the following day….  he listened to me gave me some strong painkillers and explained something of what it was I was suffering from…  you could have knocked me down with a feather,..  I was never ever going to feel life as it was prior to that evening down the park at 13 years old.  I lived and carried on for that, it was my goal that one day this would all stop!

Life has gone on, I was verbally abused by my now ex-husband,..  called lazy every single day,.. asked everyday in a very sarcastic tone “So what have you done today then,.,.. ahh let me guess, sat on your fat ass and watch tele”  I was a good mum to my kiddies and piled all I had into that, tried to clean but as my son was ADHD with other spectrum issues,.. it was bloody hard work.  I could not do what I wanted to do with my children,  I have had two! :)….  I was not able to push my kiddies on the swings or lift them into the swings,..  life was very …  how do I put it, I have been terribly restricted.  Over this time of being married I learnt a lot about myself and sussed out that if I did something simple,.. like jump off of a kerb with my son, i would be in trouble for a week…  it went on like that, don’t carry boxes in front of me,..  don’t twist turn  it was a real learning curb…  movements that people just do and take for granted, I had to think about…

I left my husband, his stress levels were far too high to live with,.. ex army simply not good.

Upon leaving him I visited a dr,.. to cut the story short, measures were put in place to help me.. I ended up (to my horror at the time) on DLA,…  I became much worse,… it got to a point where i was going to have a stairlift put in,.. I had bars outside of front door, inside, beside the toilet,… bars around my bed to help me turn at night,.. and my own chair, with leg support…  I WAS NOT ABLE TO PEEL POTATOES,…  I had pain clinic,.. did swimming ( which actually makes me worse)  It reached a point where I had my daughter complaining that she was embarrassed by me….  I was on almost 60 pills a day!!  pills to make me better and pills to counteract the effects of the pills…….  the solution to this???!??  I moved to a bungalow, picked myself up, reduced my pills and lived a far more simple life accepting the things I can do and the things I can’t…  Had steroids injected into my spinal cord twice  and so far so good 🙂

I have a new symptom now, my muscles burn,…. my feet sometimes kill i believe it is the tendons as they freeze  they don’t want to work,..  the bones in my hands, particularly my left hand stick,..  and I have quite bad knee issues,…  I need to express that I am NOT a complainer, although I do lol, what I mean to say is, I don’t complain about little things, I broke my chest bone in a car crash in 1990 lived with that without knowing,..  I would sometimes say my chest cracks to family or to nurses but they would look at me as if mad….  I found out when i had a heavy object fall on me that i had an old injury, broken my chest bone, and that it could have indeed been serious and that the break had not healed….  so dealt with that.  It explained the pain in the chest, the cracking..

I have learnt to turn my back on the complaints of others and their expectations…  it has taken a long time, and a lot of mental strength to get this far,… I have lost friends along the way and distanced myself from close family members through their ignorance, even my own mother would complain that i go over to hers and put my legs on the sofa,.. to get them off, the sofa is for everyone…  i would have to lie on the cold floor at times..  brothers moan because my legs go on them,…  it is hurtful.  I feel as tho I am living in a prison called my body,  my brain wants to break free of it,..  I want to soar like an eagle,..  dance, laugh, do cartwheels, show people who I am inside,  the real me….  I could only do that through art, and I can’t paint…  The repercussions of this disease are big,..  I can’t sit to a table to write a letter I have learnt that if do I get extremely bad neck ache and suffer migraine for at least two days,…  it’s not just my back you see,  it is my neck, my shoulders, my clavicles, my knees, my feet, my fingers and toes,.. my muscles,.. my hips,..my elbows,.. my ribs,.. my eyes at times,..I simply can’t explain,,,  its hell…  I call it a massive test to take me on to a better level during a next life,  it is the only way I get through.

AS is not easy, it needs much research,.. we need far better recognition, we are strong people, we have to be,..  we do things as we need to for our own self-preservation,..  it does not mean if you see us cutting the grass, weeding, dancing even that we can do it it’s that we want to……. we suffer for it though,.!!!!  people need to stop persecuting us and start listening.

Thank you.

Wellington Somerset, however grew up in Taunton, England

8 Responses to “A.S. Face 0086: Julie Labbé nee Sharland”

  1. Hi Julie, AS’ers continue to amaze me, I feel like a lightweight when I read about how other people suffer and carry on their lives. being a bloke I haven’t experienced the pain of childbirth and sometimes wonder if I’m overstating the level of pain I’m in, but then again, having been in pain for 20 odd years, do I underestimate it? When I’m asked to rate the pain I’ve had in the last week, I may score it as a 7 but if a ‘non AS’er’ was to score it
    would they think it was a 10? or higher?. As I’ve come to accept a certain level of pain as ‘normal’ I sometimes wonder if I could transfer my pain to one of my friends for a day, how would they cope? Badly I expect. There are millions of us around the world and our voices need to be heard!!

    • Dear Martin,

      What you say is so true. I hope you will help us make this site grow, so we may add more faces to The Faces of AS.
      Sincerely Cookie

    • Martin, I am so terribly sorry for my very late reply I have been just totally wrapped up in my life.. You are completely rights about pain levels. Its impossible to gage after so many years just what level of pain we are in.. Id love to transplant my body just to Toa taster onto some that think I live the same as anyone else.. To get lazy people who can’t be bothered to walk to see what its like in my shoes wanting to! I sometimes sit back and think, what is it actually like to be free of this… To live as U do with just a pain from stubbing your toe or twisting your ankle a blister hurting even.. All things that I know can hurt but which definately do not phase me one buy now. To be free of this personal hell is all I can ask for myself and for you all.. This is so unfair.. Xxxx

  2. What you went through is awful. The physical and emotional pain of AS is debilitating. I don’t claim to fully understand because we all have our own trials. Be the strong person you are. With the Face of AS page and Kick AS page, there might be hope for all of us yet. Thank you for sharing your story.

  3. Dear Julie,
    Thank you so much for sharing your story with us. I agree people need to start listening to us and hopefully this site is a step in the right direction.
    Sincerely Cookie

  4. thank you everyone for your words of support,.. I totally agree with you Martin,.. if i had to score it, through a life without pain as I try to recall it,.. I would be living in a plus 11 but having had this now for so many years i tend to feel that this state is about a 5 as I know this could become far worse and this 5 score is my normal living state… its quite difficult to describe but I know my fellow AS’rs will definitely understand me…. It is so difficult to keep up the pace with kids as well!! family expect so much of you, and when you feel your day has to be done,.. to keep it going is impossible!! we live a life of pure hell is all I can say.. xXx

  5. Gosh Julie, what an amazing story. I can empathise in a small way as my husband has AS, the constant struggle to live a “normal” life, the pain, the frustration, the medication, the lack of understanding from others – I could go on…………….. Thank you for sharing and I hope your struggle eases a little in the future.

    • Thank you so much angela.. Life is as is have learnt not to look back to just keep going and hide the fight I take on daily.. I think inhide it well until something is asked of me =/. Sometimes im just so happy to close my door and shut the world away xx

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