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
Winter walks & wobbly hips
So the good news is I’ve now completed 41 miles of my virtual Pennine Way challenge. If I’d been walking the real trail, I’d be in Hebden Bridge in Yorkshire by now. But in lockdown-land I’m still doing my winter walks safely and locally in Walton on Thames.
My progress has been a little steadier than in my first week though, for two reasons.
First, I overdid some sweeping at home, and got myself out of alignment. For a few days I couldn’t move without severe pain in my knees, right hip (the real one, not metal one) and neck. Even my gentle yogic sun-salutations were too painful. Swimming in a warm pool is normally the best re-alignment – which of course is not allowed right now – but thankfully, visits to my osteopath are within the rules. My heart goes out to everyone who can’t exercise fully right now, and especially diff-abled people where their options may be even more limited.
The second reason was, of course, the snow. I love watching the snow fall and my partner will tell you that I turn into an 8-year-old giddy-kipper! My body, however, doesn’t compute. The fragile biomechanics lose their grip, and my fear of falling goes into overdrive.
I know I’m not alone in this. I was contacted by a new friend with DDH via the blog, whose hip dysplasia story is quite similar to mine in terms of childhood diagnosis. She commented that she dreads the snow for the same reasons.
I had my femur lengthened when I was 16 – very innovative at the time the surgery was done in the late 80s and for the first time I was straight if I stood still. It definitely helped my back, and also my singing (as I could use both sides of my lungs for the first time), but it meant that my orthopaedic surgeon couldn’t set my hips level 16 years later when I had my left hip replaced. And today, adds to the balance issues, as well as the unique gait.
So for a few days the closest a got was watching the winter walks series on the BBC i-player (well worth a watch if you want some calm and spectacular scenery).
In the last week, as the snow has passed, I’ve got back into stride on my own winter walks.
And I’m very thankful for them.
Jill Pringle was born with bi-lateral hip dysplasia. She is walking the virtual Pennine way to raise awareness of DDH and money for Steps Charity, whose motto is We Don’t Take Walking for Granted. You can support them, and Jill’s walk, on JustGiving here.
The 'Wonky Dog'. Yoga and hip dysplasia.
So I got up this morning and decided that I was definitely going to seize up if I didn't take action to get more exercise during the collective lockdown. For the last few days I have gone out for a daily walk - at safe distance - but my body is so used to its morning swim, and monthly osteo visit, that it's starting to really object. The swimming pool has always been the one place where my body doesn't feel lopsided, and it totally relaxes. Rather than feeling like exercise it feels like giving my brain and my muscles a rest. Like everyone I've got to find a new way of doing things when what we would normally do isn't an option for very good reason.
My drawings for a pop-up olympic pool in our back garden quickly proved that I was missing most of what I needed - the space, the materials, the ability to build anything. And so I turned to my dusty yoga mat. I used to attend yoga classes in my late 20s and through my 30s, but have got out of practice in favour of swimming.
I remember my first ever Yoga class. Well actually I tried Pilates first but when I couldn't complete any of the warm up exercises I felt too awkward to return. But for some reason, in the Yoga class I could at least do something approximating the poses. And the class teacher was happy to let me get close to poses or do alternatives rather than try and push me into a pose.
And so my sun salutations this morning were my own 'hippy' version. And it was just what I needed. Achieving perfect balance between left and right when the two sides of my body aren't built the same would be a futile exercise. And so I work each side of my body as it needs, and I just skip the bits that aren't possible. The point is I'm doing it. And my muscles and mind felt the immediate benefit.
And I have invented three of my own Yoga poses. The wonky dog. The slanty plank. And it finishes off with the hippy shake (yep, sort of dancing it out).
What are you all doing to keep yourselves moving? I'd love to hear from you.
Stay safe, follow the guidelines, and do whatever exercise your hips need to keep mobile.
100 miles per year! My ups and downs with hip dysplasia
100 miles is a long way for anyone to walk. For me, with hip dysplasia, it feels like a very big achievement. Two weeks ago I completed the South Downs Way and in the end it took me 15 days of walking, over exactly 1 year. For experienced walkers it takes about 7 days consecutive walking.
Emotionally the weekend was a bit of a rollercoaster – not unlike the famous Seven Sisters hills that I tackled on day two! When I set out, I felt excited that I might complete my 100 miles challenge and also nervous – it was the first time I’d tried to walk three days and I knew that even experienced walkers categorise the Seven Sisters as a challenge.
The first day I left Southease Station to tackle Firle Beacon; an 8-mile
walk. Despite weather warnings it was a
cold but sunny autumnal day and I felt relaxed as I crossed the A26 and headed
up Beddingham Hill. I have realised over
the last year how much being part of nature has helped me, mentally. A
real-life mindfulness app full of birds, trees, flowers, different smells and
importantly for me, sounds. I’m very
auditory sensitive to my surroundings (I guess as a musician it’s not that
surprising) and the sound of the South Downs Way has been an amazing soundtrack
to my life this year.
Just past the Beddingham Hill Telecom Masts I found a bench
with a view and stopped for lunch – just as the Heavens opened. One soggy sandwich later, as all the dog
walkers scuttled back to their cars, I started on the path across Firle
Beacon. The predicted weather conditions
arrived – rain, strong cross-winds and, unexpectedly, thick fog. The promised 360 panoramic views of Firle
Beacon were invisible. I could barely
see two steps ahead.
We can’t control the weather (actual or metaphorical - like
the things that happen around us in life or being born with hip dysplasia). And
I was reminded acutely of that as it became harder to fight the elements to
keep walking. Finding shelter on the top of the hill was hard. Everything
‘squelched’ as I walked, my pace slowed and my joints ached a bit more. The
only thing I could do, was just kept walking.
I remembered that I’m lucky - I can do this. Even in the rain and the
wind and the fog, I can still walk. So
many people can’t take walking for granted – which is what Steps Charity is all
about.
As I descended towards Alfriston I was out of the fog and
wind, and the rain had slowed to a drizzle. I was somewhat bedraggled as I
walked into Chestnuts tea shop below
my B&B. My mascara had an Alice Cooper feel and my hair was more
Bridget Jones then beach-swept. My reward was the best tea and cake ever.
The next day I woke up aching. This was a big day for two reasons – one, it
would take me over the Seven Sisters and two, I was meeting two more ‘hippies’
for the first part of the walk. An unexpected pleasure and benefit of this
journey has been meeting others who either have hip dysplasia or family members
who do. Being able to share our stories
was great fun and it was lovely to meet such amazing women. Whilst the ground was sodden and slippery
from yesterday’s rain, the Autumn sun was shining bright. Karen,
Sam and I walked from Alfriston along the Cuckmere river amidst lush green
fields, with the sunlight shining across the water. We made our way to Litlington
and then continued up through the fields alongside runners doing the Beachy Head Marathon. This part of the South Downs Way is
exceptionally pretty and varied – including two sets of step steps through the
trees near West Dean. They payoff was a
spectacular view of the Exceat Estuary – and the perfect tea stop to rest.
After that I was back walking alone, and yet I wasn’t. The Marathon was in full force and there were plenty of supporters cheering us on in Exceat. Since my name was printed on my diff-abled.co.uk vest I was cheered along by people telling me “Go Jill – you’ve got this”. I can’t explain how motivating that is; and something I’m so lucky to experience regularly as part of the Bearcats community back in Twickenham. It wasn’t long before I had climbed the steep hill for the start of the Seven Sisters. I am in such awe of the many people who were running or walking over the seven hills after already running 24 miles! Many differently-abled walkers and runners sharing the same path to challenge themselves.
After the initial exhilaration of seeing the white chalk
cliffs spread out in front of me, it was extremely tough to walk up and down these
seven hills. They’re pretty steep and the
wind and rain chose that moment to return in force. At least the wind was blowing in from the right-hand
side (my stronger side) and not facing me head on. I was clinging onto the hillside with my poles,
and a couple of times I was blown into the hillside. This is where all my early training came into
play – the process of one hill at a time. At the top of each hill I just
stopped, sat down, and ate another energy ball or sandwich and took a drink.
By the time I arrived at Birling Gap I was exhausted and
once again, bedraggled. As I queued at
the NT Café for restorative cuppa, a lovely couple started chatting with me. It
turns out one of them was a marshal from the BHMarathon and they kindly offered
me a lift into Eastbourne, for which I will remain ever-thankful. It was lovely to reach my hotel, have a shower
and simply relax. Needless to say, I slept well that evening!
The following morning most of the guests at breakfast of the
Lansdowne hotel were Beachy
Head marathon runners and their supporters.
A couple of people remember seeing me walking on the Seven Sisters and
it was good to chat to them about why I was walking.
It was a strange feeling arriving at Birling Gap for the end of my walk. All sorts of emotions stirred inside me – excitement, pride and also a sense of loss – my 100 miles walking adventure was nearly over. I couldn’t have picked a better day and it was calm, sunny and peaceful as I ascended to Belle Tout lighthouse on the approach to Beachy Head. There were very few people about and I was able to stop, sit and soak in the atmosphere and soundtrack frequently. This time stopping not out of fatigue but just to savour the last four miles.
It was an unexpected treat, as I reached Beachy Head, to see an ice-cream van and my inner-child couldn’t resist a 99 with raspberry sauce, overlooking the sea. Equally unexpected was the terrain of the last mile descending to Eastbourne – a narrow path through scrubland, reminiscent of much earlier parts of the walk, now over 90 miles ago. The birds were plentiful and their song was crystal clear as I was well into my last mile.
After three hours walking I arrived at the end of the
South Downs Way, just outside Eastbourne.
It felt like a huge achievement, and I’m very thankful to have walked
100 miles. I never thought I could, but
it’s amazing what we can do if we try.
It’s been an amazing journey – thank you all for your
support for me and Steps Charity. Thank you for being there every step of the way
with me. We did it! xx
Jill has spent a year walking the South Downs Way with hip dysplasia (DDH) to raise money for Steps Charity. You can still donate here.
Want to join my last legs? Join WalkingJill in October.
I can't believe that I'm planning my last three walks on the South Downs Way! As 'WalkingJill' I have walked over 80 miles with hip dysplasia and have just 18 miles left to go. I plan to walk them over three days and since I've had many people say "I'd love to join you" - well, now's your chance! You can join me either on Friday 25th or Saturday 26th October - and you can just walk for a bit of it or join for a whole day. Message me before Thursday 24th Oct via the contact form on this site, email walkingjill@diff-abled.co.uk or message me on Facebook via @ WalkingJill.
If you can't join but could donate please do so via Just Giving here. Steps Charity will use your donations to help individuals and their families adapt to life with hip dysplasia, providing information, practical support or funding towards specialist equipment like baby car seats that a hip spica can fit into (WalkingJill's parents would have appreciated that!)
Here are the details:
Friday 25th October. Leave Southease Station at 10.30am (my train arrives at 10.07). Walk 7.5 miles to the pretty village of Alfriston, which will probably take me about 6 hours all-in. The route climbs to over 200m in the first mile or so up to the top of Firle Beacon (bring a packed lunch for the view) and then we walk downhill at the end to get to Alfriston. There are lots of B&Bs/pubs with rooms there and you can easily taxi to somewhere with a train station.
Saturday 26th October. CALLING ALL HIPSTERS! The first part of this walk is quite accessible as it's flat. Leave Alfriston (on the Tye near the church) at 10am and walk 3 miles to Exceat. The first mile or so is totally flat walking along the Cuckmere river, then the next 1.5 miles has two small hills (50m high) to get to Exceat. You can do a bit of it and turn back or join me for the full three miles - we're all differently-abled and can do different things and I would love to walk and talk with more #DDH ers of all ages and abilities.
After that it gets much more challenging up and over the Seven Sisters for 4 or so miles to Birling Gap. This is a famous walk because it's over seven steep hills! Birling Gap is a National Trust Cafe where people can pick you up.
I'd like to thank everyone for your support, encouragement and donations so far. I never thought I would be able to do something like this and I have loved walking the South Downs Way.
Much love to you all. From WalkingJill xx
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.
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