Jane’s Story

Conditions » Hip Dysplasia (DDH) » Our Stories » Personal Stories

My Hip dysplasia – by Jane Turner

From a fairly early age it was clear that something wasn’t quite right about the way I walked.  My feet were pigeon toed but not so much that anyone thought to do anything about it, my bottom stuck out when I ran (so I tried not to run too often) and I bent over slightly when I was tired but I was neither short nor tall and so didn’t really stand out from the crowd.  interestingly I always tried to sit at the end of the line in assemblies at school so that I could sit in the W position, as sitting cross legged was a little uncomfortable and my shoes were worn out more quickly than most other children and scuffed beyond repair but this was just put down to the fact that I was a bit of a tomboy.    Although I was a twin my sister was the baby of the house and my older brother we still affectionately call ‘golden b0llock5s’, so I suffered from ‘middle child syndrome’ and because I didn’t make a fuss no fuss was made.  I just got on from day-to-day saying very little about any pain I was in and trying to study hard and stay out of too much trouble.

I wasn’t the best swimmer, I was great underwater where style was irrelevant and it was just a case of getting from A-B and I stuck mainly to racket sports like hockey and badminton where people had their eyes more on my arms than on my legs.  I was pretty good at netball and played in centre and I avoided all running events on sports day…. Particularly hurdles.

I went through school and college under the radar. I was a bit more clumsy than most people, but people put that down to the fact that I was a bit of a daydreamer and had an active mind. The first indication that there might be a more serious issue was when I went to University and proms became the thing.   I couldn’t wear heels.  I had lived in trainers and boyish shoes up until now and suddenly people around me were wearing elegant shoes and I couldn’t wear them, I just couldn’t walk in them at all.   I got around this by wearing knee length boots with slightly flatter heels and even when I became the singer in a band my trademark outfit was a hideously short dress (more like a nightie) and high boots with over the knee socks and I also wore long gloves (not really sure why …. It was the 90s ?).

When I turned 21 I started to really suffer with pain, assuming it was my back where the pain seemed to be coming from I had MRIs and saw oesteopaths but nothing seemed to be working, no one could see what the problem was. I went to work in London as an Agent for actors and had to spend many evenings in the theatre, shifting continuously in my seat to get comfortable and tended to spend an inordinate amount of time in the bar after most events trying to get to a point where I just couldn’t feel the pain anymore or certainly didn’t care about it.

After about another eight years of drinking the pain away, putting on quite a substantial amount of weight and hooking up with a number of inappropriate boyfriends, I moved from London to Winchester and got a job as a landlady in a pub.  I started to spend more and more time on my feet.  I was working 100 hours a week carrying plates and standing behind the bar and people started to notice that I was dragging my right leg when I got tired.   My boyfriend at the time called me ‘nemo’.  As he so eloquently put it ‘its like your brain isn’t telling your foot what it wants you to do.

No matter what drugs I took and what drink I drank the pain wasn’t being masked anymore so I went back to the Oesteopath and asked him to take another look for me.    He put me on my side and lifted my right leg up and there was a loud audible click.   ‘its not your back, we’ve been concentrating on the wrong area, its your hips…. I think you have hip dysplasia’.

He wrote to my doctor and asked for an immediate referral and then the wheels went into motion and before I knew it I was diagnosed with Congenital Bilateral Hip Dysplasia (worse in the right than in the left).  I was told that my labrum was torn and that the whole right side was a bit of a mess.  I was only just 30 years old and was told it was unlikely I would get to 40 without a full hip replacement.

I was in shock….. I hadn’t had children yet ……… what would that mean………..  I was really overweight and had just come out of a pretty abusive relationship …. I remember just staring into space and doing a lot of crying.  I threw myself an amazing pity party for a number of months.  Which didn’t make the situation any better but I wasn’t in a great place and I didn’t really know what I was going to do.  Was I just going to be a fat-cripple for the rest of my life!?

I had a hip arthroscopy in 2008.   A laberal tear repair and femoral head reshape in my right hip, I had started working in an office and took six weeks off to recover.  I limped around on crutches for a bit and was even allowed a disabled parking badge.   But the real turning point came for me in 2009 when I decided to give up drinking.   I think after years of being a victim.  After years of letting the disability define me and take over my life I decided to take control and part of being more in control meant I needed to have better clarity and I could only have better clarity when I was thinking straight.  So the booze had to stop.

Then the most important thing happened in January 2010.  I fell pregnant.  Maybe someone upstairs knew I might need something else to help keep me off the booze.  Maybe I was just always too drunk that my alcohol levels stopped me from getting pregnant…. Whatever it was, it was the best thing that could ever happen.    The father decided not to stick around… but that didn’t matter.   This was what I needed to grow up and take responsibility, to start living my new life where I wasn’t just the cripple, where I wasn’t the drunk with her funny leg ….. now I was going to be a mum.

Obviously my first worry was whether I could have a natural birth ….. would the hip dysplasia mean I have to have a caesarean? I went straight to the doctors to see what their advice was and he wrote a little letter for the midwives saying ‘do not put this lady in stirrups’.  He was a little nervous that when I was screaming in labour and up in the stirrups, I might dislocate my hips out without feeling a thing.

To be honest being pregnant was fairly easy, I suffered with SPD but then so do a lot of other people and I actually ended up only having an 8 hour labour.  It was pretty uneventful.   The issue actually arose with the weight I had put on …. I had gone over 14 stone and whilst that might not seem much to some the weight now on my already weak hips was too much.

The pain started to increase again, as a single parent I went back to work full time when my baby Lexi was 7 weeks old and so finding the time to exercise and look after a baby was not the easiest thing at all.  The weight wouldn’t come off and I just got more and more miserable. My family was not very helpful so I found myself just working and looking after Lexi and becoming a little bit of a recluse.

The Doctors tried cortisone injections to alleviate the pain but then in 2015 my doctor (Mr Dunlop) said the one sentence that really was going to change my life.   ‘what you need is a smaller plate’.   I was shocked….. I burst into tears….. ‘are you saying I’m fat?’.   ‘no’ he said  ‘I’m saying you need to eat less’.

I left the hospital gutted and again through myself a bit of a pity party (as all the best victims do) this time with Cake and not wine.

In Jan 2016 I made a decision to start running, I looked in the mirror and decided it had to stop.  I picked running because it was cheap, because I wanted to do it by myself and because I wanted to be outside.  My daughter was 5 and I had started to get used to the idea of leaving her to go and do something for myself.   It’s a concept some mums struggle with.   I was struggling to lift her up and I started to look at other mums who were slim and wanted to look more glamourous.   I was still single and was about to turn 40 and I didn’t like the reflection in the mirror.   If I didn’t like it how would anyone else.

I had always used the excuse that I was fat because I had hip dysplasia, I was a single mum, I didn’t have the time or the money to keep fit….. but those excuses just weren’t working anymore.   I was fat because I ate too much and I was lazy and the only person who could do something about it was me.

So I started to run……………….

I ran around the block, I ran where no one could see me running on cycle paths, I ran on tredmills and at first it was hard and I was really really slow and I looked terrible and I sweated and got red in the face but I just kept running.  When I could …….maybe twice a week I would try and run when Lexi was at the Nursery.  I would finish work early and quickly go for a run.   My friend at work Becky was a runner but she was pretty fast and sometimes she would run with me too.

In June 2017 I put a message on the local running FB site that I had joined (but hadn’t plucked up the courage to go for a run yet) and asked if anyone fancied running with me for an hour whilst my daughter was at gym on a Saturday morning and a guy called Rupert replied, who also had his daughter in the same gym class.  We went out for a run on Saturdays and before we knew it on a Saturday we were running 10Ks and actually not too slowly!

Eventually I joined in with the running club runs, Rupert had already started up the Long distance side of the club and was an Admin and before long he had asked me to assist him with some ideas organising the longer runs.  This was what I needed to spur me on.  To run longer, harder and faster.

My hip dysplasia was still there.   It somehow didn’t hurt to run.  After a run it hurt…. but not during, I guess the endorphins going around the body whilst you run mask the pain.  After a long run I still needed an ice pack and a dose of naproxen but it didn’t matter I didn’t mind so much.

Sometimes on a long run a friend would go ‘Jane your hip has gone’ and my right leg would start to feel numb and heavy as I dragged it along with me.  But I still kept going.   I won’t deny that sometimes after a run I have had to sleep on my front with a pillow under my hips but its worth the pain.

In 2018 I was down to 9 stone 9 and running pretty fast for a cripple.   I decided to set myself the ultimate target and run an Ultra marathon.   I hadn’t even run a marathon before but ever the optimist I thought maybe 50 miles (80K) would be easier as there would be less pressure to get a good time and I could go at my own pace.

My running friends Jenni and Rupert were signed up too and in Jan 2019 we started the serious training.  The event was in April and was called the Testway 50.

It’s a 50 mile trail event running from north of Andover to Southampton.  Not a massively hilly event but long and mixed terrain.  This was going to be a real adventure.

Every weekend we had a long run to do, starting with a half marathon and building up to the New Forest LDWA marathon in late February, a tough and hilly course.  We completed this in just under 5 hours.

I made an appointment to see the consultant at Southampton and to ask his honest opinion.  Would this be detrimental to my hip and what was my current prognosis?

They took xrays and compared them to the ones pre and post surgery and were pretty impressed.  The conclusion was that my dysplasia had plateaued off and that I had bone spurs forming that would soon become a bit of a pain. But that at 42 I was not considered in the running for a hip replacement just yet.  His words were ‘I have seen people with worse hips than you continue to walk their dogs for years and I have also seen people with better hips than you have hip surgery…. I haven’t seen anyone with hips like you run an ultra’.   The decision was that whilst I was still able to run that I should just go for it and that I would know when the time had come to stop running.   The consultant said that when I was taking medication daily and unable to walk after running I would need to come back and we would need to have ‘the chat’.

In the 3 month training period I completed 3 marathons and ran over 800kms and by the time the race came round I was nervous.  I had taken a tumble on one of my runs on the ice and completely knocked my hip and it was still weak, my left ankle had some ligament damage to it and I was wondering if I had made the right decision.

We set off that morning and I could barely speak I was that frightened of what was about to happen, was this going to ruin me, would this be the end of my running, was I making a terrible mistake?

I took some Zapain and some naproxen and carried some paracetamol and ibuprofen to top up with during the run and off we went.   The decision was to stick together as a three.  Rupert was way faster than both Jenni and I, Jenni was slower than me over distance but a more consistent runner with a very stubborn and steady pace.   We set off with the aim to get to the end in under 12 hours and to take it easy and enjoy it.

It was a beautiful day, we couldn’t have wished for better weather.  We ran our little socks off and had a really wonderful experience.   There was a point about 35K where I turned to Rupert and said, I think I may have to walk from 42K.   I had felt something clunk within my right hip, it wasn’t moving as freely and I was in a lot of pain.  I started to cry and felt so desperately miserable.  I did the maths in my head and worked out that even if I walk/ran the last 40k I would still get in under the 14 hour cut off for the event and so I wouldn’t be thrown off the course, so after we hit the one marathon mark I slowed to a walk and had a lovely chat with a guy called Terry who was also injured and together we kept each other company whilst Rupert and Jenni headed off into the distance.

Then I am not sure what happened………… I think it was just sheer bloodymindedness but I started to run and before I knew it I had caught up with Rupert and Jenni and was happy again, back in our three I had no pain anymore and I just wanted to finish …. We had about 25K to go, this was less than our training runs, this was going to be easy…… we just had to put one foot in front of the other and eventually we would get to the end.

We finished in just over the 12 hours.   To be honest the course was 53 miles …(85K) so the fact we went over time was ok.   I was exhausted and shattered and my friend Natalie was waiting at the end with clean clothes, I could have hugged her …. But I don’t really do hugs ?

We did it ………… I did it ……………..  with the help of some amazingly stubborn and supportive friends we had physically and mentally battled to the end.

I cant wait now to run another Ultra …………. I think maybe I will just keep running them for as long as my hips will let me.

Within 48 hours I was back running again and within a month I had my speed and pace back to normal.

I think back sometimes to the girl with the disabled car parking badge ……to the girl who was told to eat less and to the victim called Nemo who thought that she would have to just put up with being overweight and lonely.  I had thought that it was all part and parcel of the disability.

I had resided myself to living that life defeated and not challenging my body anymore.

If there is any advice I can give someone with lower limb disabilities its to test yourself.  To not be constricted by what others tell you you cant do.  Try it … if you cant you cant …. But what if you can???

What if you can and you are good at it?? What if you open up a new world of opportunities where you thought that you had none.

Don’t let any illness or any disability define you.  Test yourself, challenge yourself and give yourself the chance to be happy and to explore new things …. Only you can make the change….. its about finding the strength and the courage to make the change…. Every change starts with a small decision and every decision starts with one big deep breath.