Adult DDH: walking and talking with different abilities
Last weekend I walked another 14.5miles, and on the first day I was joined by two friends. I was born with hip-dysplasia and it was obvious immediately that my hips weren’t normal. I knew nothing of Adult DDH until I found Steps Charity last year. It turns out that many people are diagnosed in their 20s and 30s rather than as children, as hip checks for babies don’t always catch DDH – as was reported recently by the BBC.
On day one of this walk I set off from Pyecombe and walked the
three miles uphill to Ditchling Beacon – one of the most popular parts of the South
Downs Way. There I met Sam Beale – who had
contacted me after reading my blog last year.
Sam supports Steps Charity and was diagnosed with DDH in her early 30s –
almost three years after experiencing hip-pain mid-way through pregnancy. You can read more about Sam’s
story here and what strikes me most is how long it took to get a diagnosis
of Adult DDH. As Sam said to me, a
common problem is that doctors think you’re “too young for joint problems” so don’t
think to look for so many conditions and especially hip-dysplasia. After 3 years
Sam had a PAO; surgery which breaks and re-aligns the pelvis in three places and
takes considerable time and pain to recover from.
Sam and I walked along the ridge of the Downs from Ditchling
Beacon towards Black Cap with her joyous dog Amber darting to every passer-by to
say hello. It was a clear and sunny day
with spectacular views to surrounding villages and even out to sea. It was so amazing to meet someone whose story
of diagnosis is so different, and yet we have so many shared challenges. Like walking downhill (if you have DDH it’s
unlikely that “it’s all downhill from here” is motivating). Or squatting exercises in the gym (hip
dysplasia comes with flat as a pancake buttocks). Or simply trying to judge how far you can
walk without being in pain the following day.
For the second half of my walk I was joined by my good
friend Hayley Manning. Hayley and I sing
together, and she also writes a blog about
grief and loss. She is currently training
for a three peaks challenge to raise money for Child Bereavement UK. What I
love about Hayley is her ability to really connect with people and it was
lovely to share part of my walk as she trained for hers. We sat at the ridge of
Black Cap eating sandwiches and putting the world to rights (obvs) before
making our way downhill to enjoy a cuppa at Housedean Farm where I was staying
overnight.
One of the things we talked about was the reaction adults
vs. children have to people who are different.
I recently heard a brilliant programme on BBC
Radio 4 about awkwardness – and how managing other’s reactions and awkwardness
is one of the hardest challenges differently-abled people face because as
adults we’re trained not to ask the obvious questions that a child would. Kids
aren’t awkward – they see something different, they ask why, and they accept
the answer.
I felt very blessed to have had two such wonderful people to
share my walk, and I’ll be posting a social walk shortly to invite others to
come and walk with me as I reach the end of my challenge.
Day two I walked alone. Although it was predicted to pour
with rain all day actually I just got intermittent drizzle. Heading uphill from the A27 I was soon on the top
of the ridge. OK, so when I say soon, I
mean it took me over an hour. I was
passed (four times) by a couple who were training for the Beachy Head Marathon
by running up and down the hill, and it was lovely to chat to them about what
we were each training for. Different-abilities,
different challenges yet each of us were pushing ourselves to the max in the
same great landscape. I then had a
thrilling walk along the ridge – views of pretty churches towards Lewes one way
and chalk cliffs and the sea the other.
I ended my walk in Southease – a chocolate-box hamlet with thatched
cottages around a village green. I was
in some pain and it’s taken me 2-3 days to stop hobbling, but I felt good.
I believe that we are all differently-abled and we
can all challenge ourselves to grow. I never
thought I would walk this far, yet here I am – over 80 miles of my challenge done
and just 3 days walking left.
I’ll be doing that in mid-late October and I’ll post the dates and times. I’m hoping to invite others with hip-dysplasia – young or old – to join me for a couple of miles in the valley around Alfriston where the path is much easier. Then I will head over the Seven Sisters to Eastbourne. I hope to see people of all abilities there and if you’re interested message me or comment here and I’ll let you know where and when.
Until then, much love to everyone out there who has helped me get this far. I couldn't have done it without your support xx
Jill Pringle is walking to
raise awareness of hip dysplasia (childhood and adult DDH) and raising money
for Steps Charity. If you would like to donate please do so
here - £5 would provide a full information pack to the family of someone newly
diagnosed.
Route 66? Finding my DDH rhythm at Devil's Dyke.
Yesterday I made it to the 66-mile mark on the South Downs Way. I'm walking to raise awareness of hip dysplasia - a condition like over 1 in 1000 people that I was born with. The last couple of walks have felt quite hard; very hilly and, at times hot weather, and it's taken grit and determination to get me through them. Yesterday was different. I set out to walk from 5 miles from Upper Beeding to Devil's Dyke, but actually made it another 3 miles to Pyecombe.
So what made the difference? Tea. You can take the girl out of Yorkshire....
Actually, it just happened to be a perfect day for walking. Like most stretches of the South Downs way, it started with a 200m climb - from Upper Beeding to Truleigh Hill. It was bright and breezy and afforded marvellous views from the offset. It so happened that on this walk - which is in one of the most accessible and therefore popular parts of the South Downs Way - there were nice, evenly spread opportunities to take a rest and have a cuppa. And the first of these was at the YHA Truleigh Hill where the sign that said "Tea and Cake" deal lured me in to their cafe to chat to other walkers and cyclists. Of course many of them were doing the South Downs Way in 3 days (by bike) or 8 days (on foot).
For me it's a bit different. I'm having to 'chunk' it. It's a bit like whenever I've had a programme at the gym. Once we get past the Personal Trainer inevitably thinking they can 'fix' my hip dysplasia by strengthening my core so suggesting I squat and twist with a Russian Ball, we get to the point were it's clear that the best path for me is little and often. More sets with less reps in each means I have plenty of rests between sets to make sure my body is properly aligned and re-align it if I need to. It's the same for me when walking - as I learned two walks back when I walked way too far. For me, the stops are as important as the starts.
I had planned to walk to Devils Dyke where there are plenty of buses back to the train in Brighton. But I was in rhythm yesterday, and there were plenty of places to stop, sit, re-align, and take in magnificent views. On the hillside above Fulking I laid for 10 minutes and listened to the wind. It was just like the opening soundtrack to The Sound of Music (a fave film) as the breeze whipped through the Austrian Alps. Shortly after this I saw The Devil's Dyke pub and thought - that can't be it already! For the first time I was disappointed to get to my destination. And then I spotted that if I kept going another mile or so, there was a second tea shop. Which of course was too good an opportunity to pass. In my family, tea is a religion.
And so I kept walking, past the Devil's Dyke itself, through a landscape of thorny trees that reminded me of being on Safari in South Africa and the type of habitat that Rhinos love.
Clearly the wildlife I passed were dogs and sheep (and a few goats this time) but after a steep descent I was at the National Trust Saddlescombe Farm drinking Rooibos - South Africa's favourite tea! After this brief stop I then made my way up over the last hilltop where I couldn't help but sing a bit of 'Climb Every Mountain' to the sheep - and then down to the A23 at Pyecombe. I jumped on a bus back to Brighton very proud to be in my walking rhythm, 66 miles into my Route.
Jill Pringle is walking to share her journey with hip dysplasia (DDH). And is also raising money for a charity called Steps along the way. If you'd like to give just a few pounds for this charity which helps families of those born with hip dysplasia and other lower leg conditions you can do so here.
Over half-way. Looking back on our right to roam.
One week after my most difficult walk, I was back in the Amberley valley feeling much more relaxed. This walk was to be an exciting one, because it took me past the half-way point of the South Downs Way.
It was a very hot Friday as I climbed high above Amberley. When
you’re heading for a destination it’s very easy to focus only on where you’re
going, but on this walk in particular most of the spectacular views were when I
stopped and looked back at how far I’ve come.
It seems like only yesterday when I decided to challenge myself
to walk the South Downs Way, but it was almost 18 months ago that I had the mad
idea. I was in the Peak District,
finding it hard to climb a hill, and thinking back to my childhood atop dad’s shoulders
on the moors near Sheffield.
Despite my hip dysplasia, we would be out walking as a family most Sundays. Dad was passionate about public access to land. Looking back further to just before my Dad was born, Kinder Scout in the Peak District was actually the location of a mass trespass in 1932 that ultimately led to the right to roam movement and the formation of Britain’s first National Park. More National Parks followed and the South Downs National Park is actually the newest. Imagine a world where we couldn’t get out into the fields, the forests or the moors? I’m grateful to those who walked before me and gave me this right to roam, as slowly as I like.
Day one of my two-day walk was definitely easier than last
week. It was just over 6 miles, but it
was still a slow walk due to the heat, with very little shade on this part of the
Way. Even stopping for an energy snack
or a sandwich was invariably sitting out in the full force of the sun. Of course, the bright sunshine made the views
back over the Amberley valley quite spectacular – every colour imaginable lay
behind me – green downs punctuated by sheep, brown cornfields and a meandering
river like something from a turner painting.
Sadly, there’s no set marker at the half-way point, but the pictured
signpost signalled that I’d passed it two miles back!
It took me five and a half hours in total to make it the 7 miles through farm fields to the A24 water tap (and I was parched by the time I got there) for the turn off to Washington. I was staying in a small B&B called Holt-House – which turned out to be a gem of a place due to its wonderful host, Anne who understands what true hospitality is all about. She welcomed me into her home and beautiful garden for an evening of much needed rest and wonderful conversation.
I departed after breakfast for day two, and climbed up the
steep track from Washington towards the Chanctonbury Ring. Today was more overcast and a perfect walking
day – able to see for miles yet feel a cooling breeze. I enjoyed every minute of this walk not least
due to the sheer number of people out even early in the morning. Whether they were cycling, hiking, jogging, trekking
on horseback or just out walking the dog, everyone was enjoying the spectacular
views from the top of the ridge. I was compelled
to sing a little bit of ‘let’s go fly a kite’ as I wandered across the top of the
moors. I felt so free. This is what the march
for public access was all about.
I was wearing shorts and so my strapped-knee was fully visible
and many of the people I passed asked me how I was injured (the limp is also a
bit of a give away). It was nice to tell
a little of my story and why I’m doing this walk – sharing just how common hip
dysplasia really is and how it’s affected me.
In the end I felt so good that I walked an extra two miles, not turning for Steyning but walking on to Botolphs. Here I was also reminded that not only do our National Parks give us the right to roam, but they are also home to many working farms who produce our food day in, day out. I’ve been used to talking to the sheep, or navigating cow-herds, but today I also passed pig farms, and sows suckling their new litters of piglets. I was saddened to see signs having to remind walkers or cyclists to close the gates, keep dogs on leads and not feed the pigs – a sign that we humans take for granted our right of way without an understanding of the negative impact we can have on those who live there and conserve this land.
Breaking the walk into two days made all the difference to my
enjoyment, and so that will be the plan until the end. Because I am, amazingly, over half way (58
miles down!) Sadly, in this part of the world,
it’s not all down hill from here though!
Until the next time….enjoy your right to roam in England’s
green and pleasant land.
As well as walking to challenge myself I’m also raising
money for a small charity called Steps. Like me, many people are born with hip
dysplasia and other lower leg conditions, and Steps support those individuals
and their families. I’m trying to raise £3830 which would be about £1 for every
step I walk on this path. If you’d like
to support me just a little please click
here.
A step too far….Cocking to Amberley
Yesterday I walked 11.5 miles of the South Downs Way to Amberley.
It’s always difficult to know our limits and of course we don’t know what they are until we find them. As a child with hip dysplasia I definitely used to push myself – I remember jumping off the top of garages along with the other kids on the estate or climbing the A-frame in P.E. class to the nervousness of onlooking teachers. As an adult, post-hip replacement, I’ve become more cautious and protective.
I’m not saying the route so far has been easy – it really
hasn’t. But since the very first day of this walk, where it was longer than
expected, I’ve become accustomed – if not comfortable – walking about 6 miles
at a time. Yesterday I left Cocking Down
to see how far I could walk towards Amberley. This stretch is one of the most accessible by
public transport. The 60 bus from
Chichester Station stops right where I left off last time, and the South Downs Way
passes Amberley train station in Houghton Bridge. Sounds easy.
After a week of heatwaves, Friday was a nice 24 degrees,
slightly overcast, with a breeze and occasional drizzle; a perfect day for
walking. I packed plenty of food and
water but didn’t need a lot of layers which kept my bag small which is always a
consideration for me. Carrying anything
totally changes the delicate balance of bio-mechanics that let me walk.
The path climbed quickly up 220m to a ridge which is where
this walk stays for most of the route - high above the world with stunning views
of the downs. Walking along the edge of Heyshott
Down I was in familiar territory – saying hello to sheep, enjoying the birds flitting
in and out of pretty hedgerows, and taking the shade of intermittent forests to
one side or the other. This is the quintessentially English countryside of
American movies.
But quite quickly I could tell how tired I was. The night before was so hot I’d not had much
sleep, and my body wasn’t fully rested.
And today that meant I had to take more breaks than usual. I have learned that the best thing for me is
to lay on my back (with trusty inflatable pillow under my head) and knees
bent. This allows my pelvis and back to re-align
from the backward-tilt position it uses to stabilise my walking with flat-as-pancake
glutes; a tell-tale sign of DDH.
On the down-side this made the walk slower (in the end I walked
for over 8 hours…more of that later). On the plus-side, I had some amazingly
mindful moments resting under rustling tree canopies. The most magical of these
was near Graffham Down Nature Reserve, beautiful unfenced fields of wild flowers,
shrubs and trees to protect and encourage our natural wildlife. The only
challenge here was not to drift off to sleep…
I’d left Cocking at 12 noon – later than usual due the public
transport connections (if you’re on the 60 bus push the bell early or you end
up right down a steep hill in Cocking before you’ve even started!). So, by the
time I got to down from the ridge to the A285 near Duncton, it was already
3.30pm. And here, I had a choice - stick or twist. Stop and call a bus on demand (helpful service
but only every hour and a half and I’d just missed one) or keep going on to
Amberley. I literally dithered for what
seemed like a very long time (about 15 minutes) but with the help of some trusty
malt-loaf and butter, I took the decision to push on. I would never know how
far I could go until I tried.
The first reward was a slow but fairly steep climb back up
to the ridge and Bignor Hill. And by the time I was up the hill I was already
regretting my choice. I sat for a while on
a rare bench overlooking the National Trust Slindon Estate
and enjoyed the amazing vistas over the Downs in every direction. It made the
climb worth it but I was painfully aware that I still had about 5 miles to go
and it was nearly tea-time by now. My pace was slow – the paths are good and
straight but chalky and rocky, so you do have to watch your footing. Suddenly
my protection mindset started to kick in – twisting an ankle up here would be pretty
tricky.
A few hellos from dog-walkers and cyclists at the NT Slindon
car-park; I have to say I love meeting different people on this walk – it reminds
me of Yorkshire where people say hello! I then ended up on the most tricky part
of the path. A very steep, winding
descent on a rocky chalk path down to some barns. I always know when it feels
too hard because I start ‘coaching’ myself out loud. So there I was, jabbering my way down the
hill watching my steps. I stopped admiring the view and started counting my
steps and saying “one step at a time, Jill – you can do it”.
At this point, I also had to turn off my phone which was running
out of juice as was the back-up battery pack. I still had 4 miles to go and I
was starting to feel isolated and question whether I’d get there. Everything
hurt. My body was telling me that my hips, legs and shoulders couldn’t keep
going and my mind was telling me to keep going and get to a village. Like most
DDH’ers, learning to walk isn’t intuitive but a deliberate process. This moment
reminded me of learning to walk again after my hip-replacement and I thought,
if I could do that, then I can do this.
Descents are the hardest thing for me and of course this
walk ends with a long, slow descent down past the A29 and on to Houghton Bridge.
As I crossed the A29 I watched the 7.17pm London train pull out of Amberley Station
and I set myself the goal of getting the next one. Even in immense pain, feeling so lonely and vulnerable,
I had to stop for a minute and look at the amazing view as the valley of
Amberley spread out in front of me. It was
late afternoon and simply magical.
I walked myself, one step after another, down the hill - remembering why I’m doing this: “not everyone can take walking for granted”. I don’t know how long I will be able to, but I can still do this – pain and all. I was exhausted as I got closer to Hougton Bridge, and by now I wasn’t just talking to myself but also my cat, my father and anyone else whose support I needed to get there! I must have looked a sight :-)
I got to station approach at Amberley just as the train
left. I missed it by 3 minutes. I burst into
tears. I was so exhausted that I didn’t stop to recognise my achievement. I had
walked 11.5 miles, the longest I ever have, and I had made it.
After catching a train the other way to Barnham 20 minutes later, I found a train to Clapham and then back to Twickenham where I live. I got home just before 11pm to the most delicious meal and cuppa made by my partner who was supportively waiting. I had left home at 8.15am. Needless to say, I slept well last night and I’m very tired today.
Whilst there is satisfaction knowing that I’ve now completed
over 46 miles of my 100-mile trek,
I also found my limit yesterday.
I think the next leg will be like my left one - a bit
shorter!
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.
An early Spring in my Steps…
I've taken a break from walking the South Downs Way for the last four months. Today I decided to spring into action and get back on the trail from Buriton to Harting Down.
Whilst I’m sure I missed some breath-taking views of the South Downs in Winter, I have learned that snow and ice don’t go so well with hip-dysplasia (DDH). The tricky mechanics of keeping myself on my feet tend to disappear if I can’t get a grip on the ground. I become one of those penguins that shuffles slowly along trying to hold an egg on its feet. Let’s just say it would have taken a while…!
My Dad (who I have written about so often
in this blog) died just six weeks ago and of course I’m missing him so much
right now. Being in the countryside always
makes me feel close to Dad because he loved it so much. I talked at his funeral about how much he
loved the moors of the Peak District, his time living at Lockerbrook Farm as a warden for
the WoodCraft Folk, and the work they do to encourage young people to get outdoors
and learn to work in harmony with nature and each other.
So over the last four weeks I’ve been waiting eagerly for ‘Spring’
- a sign that the weather had permanently picked up and that ‘perfect’ day to get
out there again. Of course, predicting
the British weather is about as futile as trying to predict whether my knee or neck
or ribs will hurt more or less on any given day. Sometimes it hurts. Sometimes it rains. So today I decided to stop waiting and just
start walking again.
At 4.5 miles it was a shorter walk than some of the other ‘legs’. It takes my total so far to 29 miles and I’ve challenged myself to walk the full 100 miles to Eastbourne by October this year to raise awareness of hip dysplasia.
It was amazing to be back out there. I had forgotten how good this walk is for me –
for my mind, for my soul and for my body.
I started by dropping the car at Harting Down where a local taxi company picked me up and drove me
to Buriton, which is where I left off in November. It’s important for me to walk every step of
the way in sequence – to do it ‘right’.
Something else my Dad taught me.
The taxi driver waved me off with the cash from his last fare – just one
of the kind donations to Steps
Charity I’ve had so far to support people who are born with lower leg
conditions like mine.
Today’s walk took me along the ridge of the Downs, through
pretty woodland and lots of hedgerows.
Everything had that early Spring feel about it – a fresh start. It had rained in the morning but lightly. There were lambs in the fields. The birds
tweeted calmly, the air smelled fresh and there was a gentle breeze in the many
trees. Being up high gave me amazing views
over the whole valley, lush green fields punctuated by occasional farms, cottages
and villages.
I’m glad I stopped waiting and started walking. I found the spring in my Step I was looking
for and ready to walk again. Turns out
it was that perfect day after all.
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
Best foot forward. Winchester to Exton in 46,000 steps.
It’s estimated that one in every 1000 people are born with hip-dysplasia. It takes many forms and I suspect that no two DDH walks appear quite the same. For me, it’s all about letting my right side lead. I’ve never been able to stand on my left leg alone, and I start every walk – short or long – with my best ‘right’ foot. And so it was on Friday, as I took my first steps from Winchester on the South Downs Way.
The weather forecast on Friday matched my walking forecast - unpredictable. I had never walked that far in one go and I didn’t know all the terrain, so I was both excited and apprehensive as I Ieft Winchester Cathedral. I was quickly on the ascent out of Winchester when it started hailing but at that one-mile point my legs, at least, were still going to plan. It was already quite a climb and I have to admit to feeling quite emotional as I crossed the M3 and made it to the first field. Was I really going to walk all that way? The field was the kind of distance of a Sunday walk that would soon see me turning back home for a nice cuppa. After two miles I’d reached the village of Chilcomb which was beautiful in the warm Autumn light. I made my way up the hill above the village, to my first vista of open fields. The perfect place to stop for an energy ball, some water, and a sit down.
A man soon appeared and we got chatting about what I was doing. And our conversation reminded me why I’m doing it. He's currently suffering with sciatica (something I’ve had and know just how painful it can be) and struggling to adapt to being in pain doing simple, everyday things like walking. It reminded me that we’re all differently-abled and how that changes over time. The best runner can get injured. A skiing accident can break a hip. They will have to learn to adapt. Just like someone born with a hip condition who doesn’t have all the right bones in place to take their first steps.
And so I continue my journey. By now it’s hailing for the second time as I make my way across farm fields. I feel re-energised thanks to Deliciously Ella and the sun soon returns to give me some glorious views and an hour and a half without seeing another soul. At first the solitude is nice. And then I start to wonder where I am and how long I have to go. I’m aching and my right knee keeps cracking. About 5 miles in I meet a father and son duo who have spent three days cycling from Eastbourne. When I tell them where I’m staying they say – oh, that’s quite a long way yet. Time for another energy ball I think!
There are two main challenges I’ve found so far on the South Downs Way. The first is that much of the accommodation is not actually on the Way itself (since you’re on the ridge above the villages). Which is why I’m staying 9 miles in, so I don’t have to add further distance. The second is that there aren’t many places to sit that aren’t on the ground. At about seven and a half miles it starts getting dark and I’m feeling quite vulnerable. I’ve found a log to sit on and I wonder if I can make it much further? I wish someone could carry me. My dad, who used to carry me as a child, is slowly fading away with dementia and I’m missing him terribly. My right hip, abs and ribs are all hurting under the strain of stabilising my body. And so my mind is struggling to stay positive. But what’s the alternative? In the middle of nowhere you just keep going. Best foot forward.
I’ve never been happier than I was when I arrived at The Milbury’s. Five hours from my start, it had just turned dark and I was really hurting. But they’re nice friendly people and make a mean chicken and leek pie! Things could be worse.
The advantage of having had to walk so far on day one was that the second day was much shorter. All the other times I’ve done big walks I’ve been able to rest the day after. Today I forced my feet back into their boots and got going. My strategy was to take my time. I was much slower on tired muscles and my right side just hurt constantly from the get-go. So I lurched more which hurt more. There’s nothing like nature to keep you going and it was the most beautiful crisp sunny Autumn day you can imagine (see the gallery for pics).
I stopped at the top of Beacon Hill which was the 10-mile marker. It felt like quite an achievement and the panoramic views made it all worthwhile. Another energy ball and I started down the hill – the part of the walk I’d trialled a month ago. That turned out to be very helpful as I knew the terrain. At this point my right knee had had enough - it doesn’t handle slants well and this was steep. Every stile was something to manoeuvre slowly and my steps downhill were more like a shuffle.
Being Saturday I saw many more people, all friendly, all enjoying the fresh air and the views. And all encouraging me to keep going. As I reached the cow field approaching Exton they felt like old friends. Just like all the people cheering me on via Facebook @WalkingJill. Thank you so much – you have no idea how much it helps!
As I sat outside the Shoe at Exton with my partner (who had kindly come to drive me home) I thought back over my two days. I thought about all the people born with hip-dysplasia every year and all the friends who support them to put their best feet forward on their own journeys.
My journey will continue after a few visits to the osteopath and a bit of time to rest. Until then, keep putting your best foot forward. Love to you all. Jill x
Jill is walking to raise money for Steps Charity - who support all with childhood lower leg conditions including hip-dysplasia. If you'd like to donate, just click here. £5 pays for an info and support pack for a family whose child has just been diagnosed.