Taking Steps by talking DDH
Steps Charity recently asked me to do a podcast interview as part of their new series which tells the stories of people like me born with all sorts of lower leg conditions. Click here to have a listen - none of it was edited, it’s just me sharing off the cuff what I do and don’t remember about childhood surgery for hip dysplasia, about having a hip replacement aged 32, and about living life as a differently-abled person who can’t always take walking for granted but lives a very active and normal life.
What strikes me most about Steps is how grateful parents are to have them to turn to, and the wider community of other parents they facilitate online. I talk a lot in this podcast about how reliant I am now on what my parents could tell me years later, and how their only source of information was what the medical staff told them in an era pre-google or social media. Consequently, I feel like I know the gist of my early surgeries but not the full medical details. In some ways it doesn’t matter – what’s important is that the surgeons at Sheffield Children’s got me walking somehow despite how much of my pelvis and hip socket was missing.
This podcast also helped me share some of my earliest memories of being in a hip spica plaster cast - what that felt like and how often we had to re-plaster my knees! I remember my childhood as very happy one, I had a mindset to try and do as much as what other kids my age could do. Whilst I couldn’t excel in sports I did well at school and as a musician, and consequently I’ve lived a very full life so far. My life has been punctuated by surgeries at different points and as you know, I am now waiting for a knee replacement in January – this time on the right side which has borne too much of my weight for almost 50 years. More on that soon!
Hope you enjoy listening to the Podcast. Link again here.
And if you do enjoy it, maybe you could drop a fiver in the pot for Steps here - £5 would help them support more people like my mum and dad with an information pack that says “you’re not alone and your child can have a good life with hip dysplasia, here’s what you need to know and the support that’s here for you”
Thanks for listening! xx
Hip Dip Hooray! 100 lengths for Steps Charity in Hip Health Awareness Month
This morning I switched my walking shoes for my swimming goggles for a single 2.5km swim (100 lengths of the pool). I completed my Hip Dip in 1 hour and 7 minutes!
If you have hip dysplasia, or someone in your family does, then you’re more likely to know that June is Hip Health Awareness month. Every year, to mark it, Steps Charity hold a Hip Dip Swimathon. This encourages those of us with different hips to take to the pool and raise money for others with hip issues.
Swimming helps me walk. The days that start with a swim are the days I walk better. If I’m having a bad joints day, or I’m in pain, then getting in the pool is the best way to realign myself. I think I was really designed to be more of a sea mammal than a land mammal!
Swimming is particularly good for people like me, born with hip conditions, as it emphasizes upper body activity whilst supporting my body weight. It avoids any load on the hip joints. For me swimming is fun. I have really fond memories of swimming with my parents and group swimming lessons at school. For the first time I found something sporty that I could do as well as other kids in my class. Despite my hips, knees, ankles and feet all being deformed.
I had a hip replacement when I was 32. This was after my old hip - which was actually just a femur resting on the edge of my pelvis as I was born with no socket at all on the left side - finally gave way. I had 18 months of significant pain, commuting to work on crutches, before I finally got my bionic hip. It wasn’t a straightforward replacement as, to this day, part of my pelvis is still missing which made grafting a metal socket onto it hard. Yet it transformed my pain levels and I’m so grateful to have had it.
After my hip replacement I recovered first with some hydro-therapy, and then with regular swimming. I took some swimming lessons to get my face in the water to learn front crawl, and from there I’ve always found the water the most natural place for me and my hips.
I normally swim for 30 minutes and don’t count the lengths. But this morning my lovely partner was there to count me up to 100, watched over by the lifeguards. I’m so thankful to the Elmbridge Excel Leisure Centre in Walton for their practical support, as well as the regular the swimmers around me in the pool who took time to say well done! And I can’t believe I did it in just over an hour.
And from you, well, if you get chance to pop £5 in the JustGiving page pot, I’d appreciate it. £5 would allow Steps to send out a full information pack out to someone who is newly diagnosed, or their family. It will give them the community and support they need to know there are other people out there with different hips, and they are not alone.
Most of all thank you for reading. That’s what Hip Health Awareness Month is all about J
Love to you all, Jill xx
DONATE HERE NOW for Jill’s Hip Dip on her JustGiving page.
You can follow @WalkingJill on Facebook or Twitter, or learn more about hip dysplasia from Steps Charity here.
Diff-ability & Me: when someone else says what’s in my head!
Did you watch Alex Brooker: Disability and Me on BBC iPlayer? I caught it last weekend and I’m so glad that I did. I have rarely watched anything about disability that I could fully identify with. But this was like someone being inside my head and knowing what I feel.
This programme gives you a good understanding of what being different feels like - and how easy it is, when you’re born with a disability, not to actually know that much about it or have really considered its impact on who you are.
I can’t possibly share everything about this programme in a blog post. Nor should I, when the best advice I can give is to watch it here. But it’s inspired me to talk about how I relate to what he shared about being different.
1. It’s a personal journey and we’re all differently disabled
I had not met any adults (that I knew of) with hip dysplasia until I started this blog and joined the Steps Charity facebook group. What strikes me in those forums is how different the challenges are that people face, who all have the same condition. Many other ‘hippies’ who read my blog could not envisage walking the South Downs Way. Others do a whole host of physical activities I couldn’t comprehend.
I loved that Alex started and ended this documentary by simply saying he wasn’t trying to be the voice of all disabled people, he was just one person trying to learn more about himself, his own disability, and how it impacts him. I started walking and blogging for exactly the same reason.
2. It’s very possible to know very little about your own condition
Watching Alex tell his Mum to come into the doctor’s appointment with him because she knows more about “his challenges and what-not”, made me feel a whole lot better about my own lack of knowledge about hip dysplasia. For the first three blogs I wrote, I even think I’d mis-spelled it!
I grew up knowing I was differently-abled and knew the term CDH, but for the first 16 years of my life, the doctors all spoke to my parents, not me, about my condition. I loved visiting Sheffield Children’s Hospital for check-ups because they had new toys and other kids there had funny legs that looked like mine. But I couldn’t possibly comprehend the discussions and decisions being taken. I remember having more curiosity when I had my leg lengthened aged 16 – and in the end watching the surgical teaching video of the operation beforehand – but it was my parents, not me, signing the consent form.
The first time I became conscious of how little I knew about my own body and history was when, aged 32, I went to the first consultation about my hip replacement. Mum and Dad weren’t there. Suddenly I was discussing the options, making the decisions and signing the consent form complete with the list of all the things that could go wrong. I suddenly understood the emotional impact that this must have had on my parents. As Alex did with his mum on their return visit to Gt. Ormond Street.
3. Being a diff-abled teenager is hard
Both Alex and those he interviewed who’d been born with their disability, said that they had the hardest time as a teenager. And boy do I remember that!
Paralympic swimmer Susie Rodgers shares with Alex how she even stopped swimming for a while, because at that age you become hyper-conscious of how your body looks and you don’t want people staring.
Whilst other girls’ legs were becoming beautiful, shapely assets, mine remained spindly and not straight right through school. Aged 13, I actually won a knobbly knee contest at the local working mens club! My DDH bum is flat as a pancake and there are no curvy child-bearing hips. As far as my lower body is concerned, none of the assets that attracted boys were there. Definite wallflower territory!
Being really physically different is not the same as choosing to stand out by dying your hair blue. There’s this extra layer in trying to decide what your identity is – where does the disability fit in? How much do I want it to define me? Do I want to hide it (quite hard) or share it? Do I try and prove I can do anything others can, or do I protect myself from situations where I might be physically challenged? I do both, for the record!
4. Unspoken fears for the future
The part in his documentary where Alex gets most emotional is when he admits for the first time that he fears how his young children’s reaction to his disability might change as they get older. What will they think when I can’t do what the other dads can? He also shares how hard it is to watch doctors check his new-born’s arms and legs to check they’re "not like his".
I never had children. I was clear from a young age that I didn’t want to. Part of that decision was very definitely about my hip-dysplasia. I remember discussions with doctors and my dad about whether I could biologically have children and of course the answer was 'as much as anyone else'. But try and have them before a hip replacement. And obviously with your particularly bad hips and part of your pelvis missing, you might find it harder to carry the weight or have a natural birth.
I’m sure all of that had an impact on my decision. And I also recognise not wanting to be a parent who can’t do what the other mums can. Carrying any weight is no fun for me. I’m so grateful for Tesco deliveries because food shopping used to be a nightmare. The thought of lifting a toddler, then trying to walk and not fall over and injure my child, was always in my mind. In the end I figured that just myself was enough to look after and keep upright.
And the final fear is what will happen to my joints when I get older? When I was 16 I was informed that it was the norm to have no more than two hip replacements, each would last 10-15 years and then that would be it. In my young head that had me in a wheelchair by mid-40s. That fear drove me to seek to achieve more and more, quicker and quicker - like a ticking clock to get everything done before I can't walk any more. I still sometimes think “when do we need to move into a bungalow so I’m prepared for the day the stairs are too much trouble?”
Of course, having watched elderly parents, or just friends who used to be runners then injured their knees, I can see that this isn’t a disability issue but more of an ageing issue for everyone. It’s just instead of starting to think about it in mid-life, I’ve been thinking about it since I was 16.
5. Superhumans struggle with real life too
As a marketer I find the way disabled people are portrayed both fascinating and frustrating. Most often you are presented with people who are either severely immobile and housebound or the SuperHuman Paralympian. Very little in-between. The Paralympics in 2012 was fundamental in its representation of Ability not Dis-ability and I’m so glad I got a ticket to cheer the Paralympic athletes at the Olympic stadium. But it’s as hard to live up to being a SuperHuman as it is for most Sunday runners to compare themselves with Mo Farrah!
So it was brilliant to hear Susie Rodgers tell Alex she still finds it annoying that she can’t do some things and how that does not feel at all super-human. In reality she is super-human at one thing - swimming.
I still can’t push a shopping trolley without ramming people (you use your hips to steer); it’s really hard to cut my toe-nails or tie shoe laces; I have a minor panic attack if I have to walk upstairs when the handrail is on the left not the right, or game-over if I also have a bag to carry up the stairs. And yet I walked the South Downs Way which inspired myself and others.
Thank you - to You and to Alex Brooker
First off, thanks for reading this. It turned out to be a long one!
I was just so inspired to write this because of Alex’s documentary. So a huge thanks to him too for sharing the normality of being different. If you get an hour, do go and watch it here.
And if you want to follow my walking challenges follow @WalkingJill on Facebook here or click here to donate and support Steps Charity.
Until the next time…. Love to you all xx
Walking when it's hard to breathe
I just got back from a swim to try and reset myself from my latest walk, two days ago. As well as my right knee getting more and more painful, I’ve had some unusual pains recently – the hitching on the right-hand side seems to be affecting my ribs which despite two osteopathy appointments won’t crack back into place. So my ribs are sticking into my diaphragm which is making it hard to breathe.
May is #NationalWalkingMonth and on Friday I walked the 7.5 miles (12K) from Harting Down to Cocking Hill, which takes my total so far to 35 miles. I’m trying to walk 100 miles of the South Downs Way to raise awareness of Hip Dysplasia (DDH) – a condition I was born with – and raise money for a small charity called Steps who support children and adults often newly-diagnosed with the condition.
It was actually a perfect day for walking; very light
drizzle so not too hot, but not so wet you have to wrap up in lots of clothing
or be careful not to slip. I think one
of the reasons my body is hurting is because life has been a bit stressful
recently. And like all of us, I tend to
hold that stress in my body and it finds the weak spots. And anxiety also makes it harder to breathe.
Of course, stopping and breathing is a great way to relieve
anxiety. It’s the fundamental basis of
Yoga and many forms of meditation - connecting body and mind. And so, my walk on Friday was a workout for
both.
I started where I left off at the top of Harting Down. I’d caught a cab from where I was going to
finish, as I knew that today I’d have to take my time. Not least because I’d forgotten my poles so I
was having to do it unaided.
This walk was a lovely one, I’d highly recommend it for
people looking for a good day walk.
There was so much variation of scenery and of nature. Vast grassland atop chalky hills led quickly
into woodland of all types – some deciduous, some evergreen. Paths that went through sheep-studded farmland
suddenly turned into tracks through flowery meadows. From the top of the hills you can see the
Isle of Wight (although again I picked a day that was a bit misty so alas not
that far from me). But it was still
spectacular as you can see from the gallery. What was fantastic about this walk was that
this amazing British countryside seemed to change mood every half an hour as it
changed landscape. And each change gave
me the chance to stop and breathe. And
having to stop and breathe more in turn gave me more time to take in my
surroundings. In short, I was more
present.
I almost didn’t go walking that day. I’d wanted to book two days but due to an
event at Goodwood, polo near Cocking and a local village fete all in the same
weekend, finding accommodation anywhere except the most expensive hotels was
impossible. But somewhere inside I knew
I needed it. Time to be. To walk. To
breathe. And to recognise that whatever I go through, I’m strong enough to face
it.
As always I met some lovely people along the route. Usually they’re passing me as they’re
obviously faster - and everyone stops and says hello. It’s common to share why we’re walking and
how we’re doing ‘The Way’. I met a couple
who were doing a series of day trips around visiting family, another who saw me
panting at the top of a hill and said “more South Ups and Downs Way isn’t
it?!” And a man towards the end of the
route who was walking the whole thing in 8 days for his holiday, and we talked
about the mental health benefits of walking alone.
In terms of pace my fitbit was tracking about 18 minutes per
kilometre instead of my usual 12. It was
less that my walking pace had slowed but the fact that I kept stopping and breathing. And it turned out that was just the obstacle
I needed to get the most out of this walk.
Jill Pringle is walking the South Downs Way to raise money for Steps Charity – because not everyone can take walking for granted. You can donate here and help families who are newly diagnosed with conditions like hip dysplasia, which Jill was born with in 1971.
Paddling with my hands: pain and hip dysplasia
People often ask me if it hurts to walk. The answer is ‘sometimes’. Funnily enough, since I had my hip
replacement, the one part of my body I rarely feel pain is in that left
hip. It’s everywhere else that’s working
so hard to compensate that causes me discomfort. Usually for me it’s pain in my neck and
shoulders and my right knee. The knee
because I take so much weight through that leg and the right hip itself doesn’t
rotate normally so I hitch and throw my leg out. And my shoulders and neck because they’re
working overtime to stabilise me, to keep my balance.
Sports have always been a bit of a challenge. I’ve talked about my early, wobbly attempts at the egg and spoon race. At junior school I could do two things. I have very long arms (no really, like they almost hang to my knees) and so I was good at badminton for a while. I could reach the shuttlecock from anywhere without moving! But as the other kids got older and stronger I had to start chasing the damn thing around the court, and it was clear this wouldn’t be my sport after all.
The other thing I could do, and to this day I love to do, is
swim.
In the water something extraordinary happens for me and it occurred to me the other day that what I love about it is I feel no tension, discomfort or pain. It’s what I imagine some people feel when they walk – it’s automatic and they don’t have to think about it. Once I get into a rhythm swimming, that’s what I feel. I’ve done five laps and I don’t notice – I’m just in flow. Walking has never been like that. I don’t consciously mark every step but I do always have to focus on where my feet are placed and what I’m doing. I’m hyper-vigilant about what’s around me in a crowd (yet still end up in that confused ‘dance’ with a facing stranger who can’t figure out which way I’m trying to go past them). It’s also easier for me to walk with others if they’re on my right-hand side as I’m less likely to bump into them. So thinking about those things is a conscious thing I have learned to do. Steps Charity say “not everyone can take walking for granted” and yet despite all this, I still do. It’s just a slightly different walk. I’ll be back walking the South Downs in the Spring when there’s no chance of slippery frost. Until then you can find me in the swimming pool.
I don’t know how long I’ve loved the water but I remember swimming lessons with joy. It just worked. I could actually do it better than some people and that was a rare feeling for me when it came to sports. The picture you see on this post made me smile. It’s of me and my dad at the seaside (Mablethorpe’s golden sands) where he’s giving me the chance to paddle with my hands because I’m in a chest-to-ankle plaster-cast called a hip spica. It was a way of holding my hips in the sockets after surgery. It didn’t make a very good swimming costume though. Maybe my love of swimming comes from this picture? I found something I could do and so I focused on that.
I still love the sea, and swimming. And it occurs to me looking at this picture, that swimming is still simply paddling with my hands.
Hip-py New Year!
Wow. What a year 2018 has been for me and my hips. I celebrated my Birthday three days ago, 47 years after I was born with hip dysplasia. This time last year I never imagined that I’d have walked a 10K race and 24.5 miles of the South Downs Way. Yet I have, and 2018 has been a thrilling year.
I started walking more this year really as a form of therapy. It all started in March when I found it hard to walk up Back Tor in the Peak District. I realised how much I protect myself and how I struggle to find the right the balance (literally and mentally) between accepting my limitations and pushing myself.
In this year of walking and writing, I’ve also realised how little I knew about DDH – a condition I’ve had all my life. So part of my journey this year has been reading about hip dysplasia and connecting with other people who have the same condition.
Here are 5 things I’ve learned:
- 1 in 10 babies are born with hip instability, 1 in 100 are treated for hip dysplasia and 1 in 500 infants are born with completely dislocated hips. In short, it’s actually quite common. (IHDI figures)
- You’re 4x more likely to have hip dysplasia if you’re female, it’s most common in the left hip and only about 20% of cases are bilateral - i.e. both sides like me. (HipWomen stats)
- A baby’s hips are mainly cartilage and so it’s about 4-5 months before everything is visible on an X-Ray. If the hips aren’t actually dislocated at birth, it can be hard to detect. One of the biggest surprises to me is the number of people who are only diagnosed as adults when they start to develop groin pain. (Sutherland/West)
- To this day, no one knows what causes it. There is a higher incidence with breach birth (which I was), certain positions in the womb, very large babies (I was actually a chubby baby, believe it or not). But these are all correlated risk factors not definitive causes. (Sutherland/West)
- The best way of thinking about hip dysplasia (from Sutherland/West) is to imagine an egg on a shallow spoon (wobbles around) rather than sitting snuggly in an egg cup (which is more like a normal hip). Ironic then that egg and spoon is the race that all the non-athletic kids did at my school sports day. Including me, which was pretty hilarious; precarious actual egg on spoon carried by someone who couldn’t walk straight. Let’s just say we learned quickly to hard boil the egg first!
Walking the Souths Downs Way and a week
on the Hoffman Process both helped me see the impact my differently-abled hips
have had on my emotional and mental health.
Good and bad.
I have a pretty strong will to achieve and a very strong
desire to prove I’m capable. That determination is not a bad trait, but I’ve
learned this year that accepting what’s happening right now, and what I really
can’t do, is also helpful. Like my first
day walking 9 miles from Winchester. Not
likely to make that mistake again…
I also have a fear of abandonment and reluctance to ask for
help from others. Until Hoffman
I had never really thought about how many of my attachments were broken when I
was very young - in and out of hospital and experiencing bodily trauma. I now
recognise the impact that has had on my willingness to rely on others.
Of course, the South Downs Way has been the perfect place to consider these impacts. Each weekend has been a true exercise in mindfulness and self-compassion. Often just me, birds, raindrops, sheep and the occasional tractor.
In June 2018 I walked the Turks Head 10K in Twickenham with the amazing, supportive Bearcats Running Club community – collecting my first ever medal. I then did two test walks before taking on the first two ‘legs’ of the South Downs Way – Winchester to Exton in October and Exton to Buriton in November. It’s been an amazing journey so far through amazing English countryside.
In 2019 I will continue my walking - slowly making my way
over the Downs to Eastbourne. Hopefully
this year you’ll get to meet a few friends along the way, and maybe a few other
‘hippies’ who’ve reached out to share their amazing stories with me too.
Until then, thanks for all your love and support for my
first year @WalkingJill.
And a very Hip-py New Year to you all xx
These hips weren’t made for walking
Yet here I am having just completed two more days and 12.5 miles walking my hips along the South Downs Way. I’m very grateful that I have the mobility, time and support to do so.
I’ve recently started reading A Guide for Adults with Hip Dysplasia by Sophie West and Denise Sutherland – two women with DDH like me. Denise was diagnosed aged 18 months and has therefore lived a more similar path to me. Sophie (an orthopaedic surgeon) was not diagnosed until she was 27. Their book was recommended on Steps Charity’s website, as part of their mission to support adults with hip dysplasia, as well as families of young children born with DDH.
It helps to know what's happening to you
A friend recently asked me why I’d chosen Steps as a charity to support alongside my walking challenge. For me it's the fact that Steps provide information to people right at the point where they feel vulnerable and lost. Either a parent who’s told their young baby will spend months in a plaster-cast and needs surgery. Or an adult newly-diagnosed after increasing pain in the hips, or like me is interested to find out more about a condition I've been aware of my whole life.
I know first-hand how knowing what’s going to happen to you or your child can be important in how you deal with it. As a child, lots of things ‘happened to’ me that weren’t happening to my friends. I had lots of surgery which from a child's point of view meant people did things to me that hurt. I spent lots of time away from my parents in hospital. There was nothing unnecessary - it's what got me walking. Yet I know from therapy I’ve had as an adult that it’s had a significant impact on how I see the world. Both positively and negatively.
As a child I tried to control things by screaming and refusing to let the nurses come near me without a fight. Apparently when my parents weren’t there (in those days they had to stick to visiting times) the only person who I’d let near me was a ward cleaner called ‘June’. Or as I could pronounce it aged 2; ‘Dune’. My mum tells me that my consultant always had to co-opt this cleaner into holding my hand so that he could examine my hips. When I had my left femur lengthened aged 16, I took control by watching a video for medical students about the surgery. The nurses thought I was mad watching how they use a chisel to break the femur, a drill to put the holes in the side of the leg for the fixator and so on. But for me, I knew what was going to happen to me and that felt better than not knowing.
So the South Downs Way is double challenge. I’ve chosen to do it, but it involves uncontrollable things like the weather or the potential of getting lost or injured whilst alone.
Leg 2: My walk from Exton to Buriton
This weekend my two days took me from Exton (where I left off last time) to Buriton - a total of 12.5 miles. The great thing about this part of the walk is that there’s a place to stay on the path exactly half-way. Each day also has a place to stop for a rest and cuppa mid-way. The hard part about this section of the South Downs Way is that it’s very hilly. So tough going, even if your hips were made for walking…
It’s also beautiful. Friday was mainly dry but misty and it had been raining and snowing the day before. The ground was muddy and slippery as I made my way through the Meon Valley. It’s an idyllic part of the world; green fields and hedgerows punctuated by fluffy white sheep. The first challenge was to walk up and around Old Winchester Hill, the site of an Iron Age Fort 650 ft above sea level and where, on a sunny clear day, you can get a great view out to sea. Today the view was of the nearby sheep and fields with a far horizon of mist.
The trip down the other side of the hill took my mud-clogged boots past amazing hang-gliders to Meon Springs - a fly fishing lake where they cater for walkers with tea, toilets, water top-ups and friendly conversation. From there it was a gradual and constant climb back up to 800 ft. The hardest part was half-an-hour up a steep path of uneven chalk stones, which I traversed, at the pace of a penguin, with two walking sticks. By the time I got to the top it was dark and I had to get out the torch to see where I was walking. My hips, knees and the right side of my ribs (which work overtime to stabilise me) were hurting as I stopped for a drink and an energy ball before the final half hour along the ridge to Wetherdown Lodge. Part of an old Naval communications encampment called HMS Mercury, it’s a lovely warm and hospitable hostel, and was the perfect place to stop.
The following morning I awoke to the sound of rain. I’d expected this and it wasn’t too heavy, but what I hadn’t expected was fog. I left layered-up and walked a slow incline through a canopy of trees and the tapping rain, to Butser Hill. It’s the highest peak of the Downs at 888 feet and the original start point of the South Downs Way – until it was extended another 22 miles to Winchester. I can’t really comment on the view (see picture) - I must go back on a clearer day to actually see it!
Down the steep grassy hill of Queen Elizabeth Country Park for a tea break. As I was eating my toasted tea-cake (a religious ritual if you’re from Yorkshire) I looked to the right and a very steep hill of fir trees. “Hope I’m not walking up that” I think. Twenty minutes later and I’m climbing through the trees. It’s stunning and fragrant from the rain. Watching the birds hop around almost takes my mind off how much my hips, knees, feet and shoulders are aching.
An hour and a half later, as I approached the Five Bells in Buriton a woman stopped and got out of her car. She kindly asks “is that the way you usually walk or are you hurt and need help?” I smile as I know that my Fitbit will have logged this un-trackable gait as ‘sport’ not walking. I explained what I’m doing and why and that my lovely partner was waiting in the pub to drive me home. I arrived bedraggled and tired yet feeling so very grateful that I’ve been able to complete a quarter of the South Downs Way already.
For this leg my steps were short and my pace slower than the first trip; each 6-mile day took me and my hips over 5 hours. I’m so proud to be doing this. And grateful that these hips were made for walking. Just very differently.
I'll be back walking in the Spring, hopefully joined by a few friends. If you’d like to donate to Steps Charity you can do so here. £5 would pay for an information pack to be sent to the family of someone newly diagnosed.
You can also follow my blog posts on Facebook and Twitter @WalkingJill
Walking Test One: Ditchling Beacon
Last week I completed my first South Downs Way walking test, with my good friend Beth and her cool dog, Bo. I wanted to gauge how far I could walk without too much pain. And how long it would take to recover.
As it turned out, it was also a good test of the equipment and planning I’d need to walk the Way properly.
The plan was to walk 2-3 miles from Ditchling Beacon towards Lewes and back again, on fairly flat terrain.
I learned my first lesson before I even took a step. As my SatNav announced “you have reached your destination” I looked at the farmyard I was in, nestled in a valley with no mobile signal, and thought ‘clearly not Ditchling Beacon’. Lesson 1: a paper map would be quite helpful.
Fast-forward 30 minutes and a very patient friend - and we’re off walking on the top of the ridge. The wind and rain immediately pick up, but thankfully I have a waterproof coat, trousers and boots – fitted with my new orthotics. The rain quickly passes and after an hour and a half we stop for a rest and a snack. Which leads to lessons 2 & 3 in quick succession. Half a Terry’s Chocolate Orange isn’t enough to eat (however yummy). And weak glutes mean I have no natural padding on my bum so a seat pad is going to be handy for resting.
At this point I smile as I recall trips as a small child with hip dysplasia. My dad was inventive and my mum always prepared. These days you can buy special equipment for DDH like hip spica car seats (something Steps charity help fund). But in the early 70s it was a bit more DIY.
So my dad ‘adapted’ things. Picture an old-fashioned canvas pram with holes cut out of each side for my fully abducted plastered legs to stick out of. Or the leather patches he’d stick on my knees to stop them from wearing out when I dragged myself across the floor (my version of crawling!). He searched a long time for an old wooden high chair – so he could put the side bars on hinges and mum could slide me and my plasters in and out sideways. And similarly made me a swing. He was quite the inventor really and when I could finally walk, Sheffield Children’s Hospital asked for all the equipment. Today I see parents pass their specialist equipment onto other families in the Steps Facebook group.
Back on the South Downs Way and to the final Lesson. On a round trip don’t walk too far on the outbound leg. It’s much harder on the way back! We both felt it and Bo the dog started to get that “I’m loyal but really where’s the car now?” look on her face.
As we got back to Ditchling Beacon we'd walked over 12K. I ached a lot and it took three days to stop hurting. Of course it was lots of fun with a good friend. And it made me go out and get an OS paper map, an inflatable cushion, some good energy snacks, and some walking poles to be better prepared for my next test. Which will be to climb up and down one of the biggest hills.
My walking journey with hip dysplasia continues and bit by bit I’m getting better prepared to tackle it. With the right equipment. And a little help from my friends...
Left hip, right path. Getting me walking with hip dysplasia.
Recently I found myself overnight in Alfriston which, as it happens, is directly on the South Downs Way. I had a spare hour or so and decided to walk along the path that I will return to at some point on my 100-mile walk. Straight away I had a choice - left path or right path?
This felt like a symbolic turning point as I had just spent a week on the Hoffman Process exploring my past and finding my own 'right path'. Over the course of that week I realised I have quite a sketchy memory of my childhood surgery for hip dysplaysia (DDH). In Alfriston I realised I could take the left path and remain sketchy. Or the right path - find out more and own the story of my body.
I see so many posts on the Steps Charity group from mums and dads who want to know more about the treatments and surgeries their child will go through. So I started by asking my mum about her memories of my surgeries.
I had my first operation when I was 5 months old. My left hip socket was completely missing as was part of my pelvis. So it was clear that walking was going to be a challenge. Who knows what they could do today with 3D printing or growing bones - in 1971 those were probably sci-fi!
Sheffield Children’s Hospital is a teaching hospital and my mum tells me we were regular guests in the lecture theatre there. My case was unusual so not only attracted medical students but also orthopaedic consultants from other hospitals who contributed ideas about my treatment.
My mum then tells me about a turning point when I was 3 years old. I’d had eight unsuccessful operations already – they were grafting muscle from my groin to try and strap my femur to the pelvis (being medically untrained I can only picture something like a hinge and a rubber band!). They were concerned that I was 3 now and had to get on my feet soon if I was going to walk.
On this particular day my own consultant - who was always mindful of phrasing his explanations in front of mum - wasn’t there. Instead my mum heard another consultant say “so as you can see it’s a hopeless case”. She summarily grabbed me from his arms, saying “if that’s the case, why are you putting her through any more of this” and took me home. Convinced I would not walk.
It was a turning point because it led to a vote and a decision. Three of my consultants came to see mum and dad at home. They explained that there had been a vote and some consultants had voted not to undertake further surgery. But that the three of them wanted to try one more thing. If that didn't work they would stop.
On the day of the operation, after watching me go into theatre, a nurse called mum into the office. On the table was a stack of greetings cards. They had been sent to the hospital by people from across the council estate where I grew up. The nurse turned to mum and said “This is going to work. Because this child has so many people rooting for her.”
And of course, it did. The muscles finally held the femur in place. It was my last chance to walk and I took it. Five days later I came home and took my first steps. I guess I’d watched all the other kids around me do it, I was just waiting for my turn.
Today I’ve been able to walk a few miles along the South Downs Way in Alfriston and I'm preparing for a series of big walks to complete the 100 miles from start to finish.
I know that I wouldn’t be able to consider doing that without two dedicated parents, two supportive siblings, and friends, neighbours and a community cheering me on. And a medical team in Sheffield, led by Mr DK Evans, who didn’t give up. Somehow, together, they gave me my first steps on the right path. I will always be grateful. And I intend to use them wisely.
If the shoe doesn’t fit... orthotics and hip dysplasia
Walking my first 10K for Steps last month taught me a couple of valuable lessons. Firstly, I need to build up my leg strength, particularly around my knees, or I’ll never manage the hills and rugged terrain of the South Downs Way. And secondly, I need to find some comfortable walking boots that my orthotics fit into properly, so I don’t get blisters.
This second realisation makes my heart sink. Oh no, not shoes….
Shoes have always been my personal nemesis. Practically and emotionally.
I was born with hip dysplasia (DDH). My pelvis is incomplete, crooked and I have legs that are different lengths. I also inherited some ‘unusual’ feet that are different sizes - and a left ankle that turns out a bit like Mary Poppins. I wear orthotics to correct my leg length and knee position so practically speaking, pumps or shoes that are light and tie tightly to my feet are the best.
Emotionally – well, like many women I drool over the sexy heels on display in the LK Bennett window. But shoe shopping just isn’t fun. Unlike Cinderella, the shoe rarely fits on either foot and the need to insert orthotics writes most girl-shoes off the list. When it comes to dressing up girly, I often feel more like the ugly sister than the fabled princess in waiting.
I didn’t mind shoe shopping as a kid. My orthopaedic consultant insisted on good shoes that fastened well to my feet so we always went to Clarks in the Co-op department store in Sheffield. They had animated models of the Animal Kwackers there, who I loved. Like Boots and his silver platforms there was a blingster in young Jill - so I always chose the shiny shoes with gold braiding. Happy memories.
The psychological challenges started for me as a teenager. Wearing stilettos was a marker that you were growing up and at that age I become hyper-conscious of the image that heels = sexy. So I persevered with my heels and fishnets at school (it was the 80s in a school with no uniform) because I wanted to fit in. And I wanted boys to look at me like they did the other girls. In reality heels just accentuated my limp and made me walk badly because they’re less stable.
Yet to this day I still dread dressing up for a night out where women wear sexy high heels with their dresses. My own inability to stand up, let alone walk or dance in them, makes me feel like I'm not quite cutting it as a woman. Of course, this is just my own perception - a story I've invented in my own head. But it’s honestly what goes on in it! Rationally I know it really doesn’t matter and I’m lucky I can walk. But emotions are funny things….
I was recently with a group of girlfriends who were sharing their first childhood memories. Ironically, mine is about shoes. My pre-school playgroup used to streamline the rush for bags and coats at the end of the morning, by sending you to get them according to shoe colour. “Everyone with red shoes. Now everyone with brown shoes.” It’s a happy memory for me because I got to go up on my own. I was the only one in blue shoes and I simply loved that I was different. I was differently-abled and differently-minded.
Thankfully stilettos aren’t the rage along the South Downs Way. So right now it’s about finding boots that can support but not cripple my funny ankles. And getting good orthotics that are fitted properly inside them. Since my 10K I’ve been consulting with a chiropractor and my podiatrist, and I’m being fitted for new orthotics next week.
The more I explore my life with hip dysplasia (DDH) and what goes on in my mind about that, the more I see that we’re all differently-abled. We all have things we’re not good at or a bit paranoid about. And let’s face it, you don’t need to have hip dysplasia to be crap at walking in heels!
My pledge is to try and be more like 3-year-old Jill - newly walking in her blue shoes. Walking differently. And proud of it.