“Still on crutches?!” 9½ months post knee-replacement with hip dysplasia
Well, intermittently, the answer is “yes”. I’m still on crutches and yes, it’s annoying me! I find myself at the strange post-surgery stage where I’m more stable than I was before, but less mobile. I meet other people who’ve had a knee replacement after me, or know someone who has, and they’re off crutches and back to full fitness which is a little deflating.
It’s not pain that leaves me still in need of walking aids. It’s 50 years of weakness in my left hip and leg due to hip dysplasia; which of course is what caused my right knee to erode so much in the first place. My surgery has restabilised the knee but hasn’t fixed the root cause. Nor can it be fully fixed. As my physio said to me a few days ago “some muscles on the left side don’t work and never have, so we can’t rely on those like I might with other patients.” It will also take the full year to build up more functional movement.
So where does that leave me right now?
My new knee has less range (bend) but is much more stable (my own knee joints are hyper-mobile so move more than they should and wear more quickly). My orthotics mean I stand much straighter. I’m not in much pain but my muscles start to ache if I stand still for a long time, or walk for too long, and so that strength needs building. I’m weaning off the crutches based on each situation; the types of movement and duration for which it’s required.
- At home I don’t use the crutches at all. The stairs are OK as we have a rail on both sides and as long as I don’t have to hold anything in either hand, so I always have to wear clothes with pockets. If I have a mug of tea I have to place it on the step in front of me and work my way up the stairs 2-3 at a time following the cup. Over the last 6 weeks my physio prescribed an outdoor obstacle course to help me find my ‘centre’ and to move sideways, around or over them (see demo by my cat). So I’m able to walk around the garden with no sticks and do some gentle gardening but without bending or squatting.
- Around the local area I’ve now progressed off crutches and onto walking poles. This has two benefits; they take less weight, so it forces me to use my legs more whilst still allowing a natural rather than lurching gait. And they are also light enough to carry - my goal for the next six weeks is to alternate 1 minute with them, 1 minute off and then build up the time off the poles incrementally.
- To travel into London for my weekly choir rehearsal, I still have to take my crutches. The main reason for this is to get off a train. We still haven’t found a way of getting off a high step down to a platform whilst also traversing a horizontal gap. Next idea is to try stepping off backwards (I’ll let you know how that one goes!). The crutches also help at train stations or other places which for someone like me, is a huge moving obstacle course, every person a trip hazard. The crutches signal to them to avoid me. What I most long for is the chance to buy a coffee at the station and be able to carry it - target #freehandsday!
- I’m now back to working 3 days per week and on set days. I’m very grateful to have a six-month contract that allows me to work from home 99% of the time. Not only does this remove a commute or more trains but also it means I can swim every morning and still be at my desk for 9am (the pool is in walking distance). Sitting is not easy – with one hip 2.5cm higher than the other, a very crooked pelvis, and flat glutes - I lean to one side, balancing either on my hip bones or coccyx. So I try to adjust with my spine and upper body which leads to lots of shoulder and neck pain. The other advantage of WFH is that I can control the environment, desk and chair setup, no boxes, no trip hazards. Never has this been more important. And I don’t work on Mondays which means I have the energy and time to get into London for Choir – singing is my endorphine boost but getting there takes energy!
- The combination of orthotics and external shoe-raise is working well to address my leg length discrepancy. The sad thing is I have to wear something on my feet all the time (see adapted cosy shepherd slippers in the photo) so I can’t walk barefoot without one foot being on pointe! I’m also developing some pain in my left toes so the orthotic needs some adjustment (in progress). I do now have four pairs of shoes adapted so at least I can have some variety!
Don’t get me wrong. In many ways and overall life is good. I’m confident that my surgery will pay off. And I’m not in chronic pain which is not the case for so many people with DDH.
I’m just impatient. I want to progress more quickly. I want to get back out into the hills and do some walking, and that feels like a very distant goal.
Living with hip dysplasia is a ‘one step at a time’ challenge. Most steps forward, some backwards and all steps a little bit wonky! DDH is a lifelong challenge that many people like me face – 1-2 people in a 1000 to be exact. My story is just one of them.
Jill Pringle was born with bilateral hip dysplasia in Sheffield in 1971. She has had several surgeries including open reductions, leg lengthening and hip and knee replacements. She writes this blog to raise awareness of CDH/DDH and undertakes walking challenges to raise money for Steps Charity Worldwide who you can support here.
Camping, Singing, Walking. Doing things I love with and without crutches.
So this weekend I took my new knee camping! I love being outdoors but I have to admit to feeling nervous about it, post knee replacement. I associate camping with a fair amount of crawling around on my knees as we tend to go to basic campsites, with a small tent and minimal furniture; an inflatable mat not a bed; a low folding chair with no table. In short, not ideal for someone with my range of mobility issues on crutches.
And yet I love being in nature and the simplicity. I don’t go camping for home comforts.
We tried a new campsite this time and, as it turned out, it was the perfect pitch for me. Each camper gets their own little bathroom hut so I had somewhere to sit to get dressed (try pulling a pair of shorts or trousers on if you can’t stand on either leg independently and there’s no seat). There was also picnic table next to each pitch, so I had somewhere to sit at a table and so some variety by switching between this and my camping chair (important if, like me, your hips aren’t level so sitting in one position for more than 30 minutes is painful). All of this meant I only had to get down to the floor once a day, to get into bed, which is now about shuffling on my bum instead of kneeling.
What was also lovely, was being able to walk about the campsite without crutches – just like I do now at home or in the garden. It felt natural. This is a big shift from a month ago on holiday in Northumberland – when I felt much more reliant on crutches for most of the time. Especially walking on sand to experience the dunes at Bamburgh!
Getting off the crutches full stop is still proving difficult. I need to be able to walk for a while and then use the crutches once I’m tired – and so build up that distance. But that would mean carrying them until I need them, which of course changes my gait. I need my arms free to help me balance. I started walking up and down our road to build strength, but the pavements slope which knocks me off balance. I’m going anywhere crowded, I need my crutches to keep other people at a distance – it’s a visual clue for them to slow down and give me space.
I also need them to stand for any length of time, my knee and my feet (in their new orthotics position) get tired without the extra support. I’ve loved getting back to singing in choirs, and of course it’s been possible to mix sitting and standing in rehearsals. I’ve only taken part in short concerts to date. My first longer concert, where I have to hold music, is not until November and I’m grateful for that break to build my strength. I don’t have the ideal physiology to be a singer where posture is so vital and it requires stamina.
Then again, I don’t have the ideal physiology for camping or walking either! As Steps say, people with DDH can’t take walking for granted.
I’ve been at this stage before - after my hip replacement this last part of rehab felt so slow. I had one leg I could rely on then; despite my hip dysplasia being bilateral, in reality my left side was my weak side, my right was more dependable. This time it’s 50/50 which side is more stable.
I know it will happen. I have faith there will be that point where I forget to pick up my crutches and it feels more normal without than with them. Until then I need to do more swimming – perhaps with flippers – and more walking in the garden. Not just pottering but consciously counting my steps without crutches.
Jill Pringle was born with hip dysplasia (DDH). She’s had numerous surgeries including closed and open reductions, leg lengthening, and total hip and knee replacements. Jill’s blog is all about embracing being differently-abled.
Taking Steps by talking DDH
Steps Charity recently asked me to do a podcast interview as part of their new series which tells the stories of people like me born with all sorts of lower leg conditions. Click here to have a listen - none of it was edited, it’s just me sharing off the cuff what I do and don’t remember about childhood surgery for hip dysplasia, about having a hip replacement aged 32, and about living life as a differently-abled person who can’t always take walking for granted but lives a very active and normal life.
What strikes me most about Steps is how grateful parents are to have them to turn to, and the wider community of other parents they facilitate online. I talk a lot in this podcast about how reliant I am now on what my parents could tell me years later, and how their only source of information was what the medical staff told them in an era pre-google or social media. Consequently, I feel like I know the gist of my early surgeries but not the full medical details. In some ways it doesn’t matter – what’s important is that the surgeons at Sheffield Children’s got me walking somehow despite how much of my pelvis and hip socket was missing.
This podcast also helped me share some of my earliest memories of being in a hip spica plaster cast - what that felt like and how often we had to re-plaster my knees! I remember my childhood as very happy one, I had a mindset to try and do as much as what other kids my age could do. Whilst I couldn’t excel in sports I did well at school and as a musician, and consequently I’ve lived a very full life so far. My life has been punctuated by surgeries at different points and as you know, I am now waiting for a knee replacement in January – this time on the right side which has borne too much of my weight for almost 50 years. More on that soon!
Hope you enjoy listening to the Podcast. Link again here.
And if you do enjoy it, maybe you could drop a fiver in the pot for Steps here - £5 would help them support more people like my mum and dad with an information pack that says “you’re not alone and your child can have a good life with hip dysplasia, here’s what you need to know and the support that’s here for you”
Thanks for listening! xx
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.
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.
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.
Walking Test Two: Jill (not Jack) goes up Beacon Hill
Today I took a sneaky day off work and headed for the South Downs Way. My goal was to try out Beacon Hill with my walking boots and some new walking poles. And to visit what will likely be the end of the first ‘leg’ (ha!) of my South Downs Way walk; the pretty village of Exton.
I was born with hip dysplasia (DDH) which means my hip joints didn’t form properly before I was born. Early this year I realised that I spent too much energy ‘protecting’ myself physically, and that I needed to walk more to understand and push my limits. Not doing things by halves, I came up with the mad idea to walk the 100 miles of the South Downs Way. I'm also raising money for Steps charity whose slogan is ‘not everyone takes walking for granted’.
Today was a magical day to visit Beacon Hill, about 10 miles from Winchester. I had brilliant Autumn sunshine and breath-taking 360 views, and experienced nature at its best with hedgerows, lush green fields, fluffy white clouds, colourful birds and hundreds of butterflies. Unlike me, all that nature does need protecting and I’m pleased to see the #MendOurWay campaign working to protect and fix broken sections of the trail.
I wanted to try a hill, because hills present a particular challenge for the way I walk. And there are quite a few of them on the South Downs Way!
The right side of my body is my anchor. On the flat, I walk by hitching my right leg to minimise the time on my left leg and use my upper body to create momentum. On a hill, or even a slant, the mechanics of that become a bit tricky. The result is usually a pain in the neck (literally) and a sub-snail pace.
I parked at the top of Beacon Hill and walked downhill first because I actually find it harder than walking up. Up is slower. Down is way less stable, basically because I need to build my bum (J-Lo I’m not!). As it turns out, I did OK today, so my recent tricycling in the local park may be starting to work. The poles helped a lot (thanks Lidl of all places!) and I managed an average pace of 20 minutes per kilometre. I was pleased to get to Exton and met some lovely people in The Shoe pub before turning round and heading back up the hill.
I have a protection mindset about my body that doesn’t always serve me well, which is why I’m doing this walk and writing this blog. What struck me today was how it’s the things that you don’t plan for that end up being your biggest challenge. It wasn’t the hill, the boots, the poles or anything to do with my hips really. It was actually some belligerent cows who insisted on herding me across a field.
Of course this is where protection comes right back in. I had the same feeling of fear that I get when I'm somewhere really crowded where there are lots of boisterous people. Like being on the dance floor when someone decides to start the conga and tries to grab you to join in. For me that means I feel out of physical control.
In this instance it was big cows, small me. It was a great test of pushing through that fear and recognising that I can manage my own physical boundaries perfectly well. And so I just carried on walking.
And, as it turned out, there's nothing like a herd of cows to give you that extra momentum you need to get back up the hill...
You can follow my blog on Facebook @WalkingJill and if you'd like to donate something to Steps Charity please click here
Left hip, right path. Getting me walking with hip dysplasia.
Recently I found myself overnight in Alfriston which, as it happens, is directly on the South Downs Way. I had a spare hour or so and decided to walk along the path that I will return to at some point on my 100-mile walk. Straight away I had a choice - left path or right path?
This felt like a symbolic turning point as I had just spent a week on the Hoffman Process exploring my past and finding my own 'right path'. Over the course of that week I realised I have quite a sketchy memory of my childhood surgery for hip dysplaysia (DDH). In Alfriston I realised I could take the left path and remain sketchy. Or the right path - find out more and own the story of my body.
I see so many posts on the Steps Charity group from mums and dads who want to know more about the treatments and surgeries their child will go through. So I started by asking my mum about her memories of my surgeries.
I had my first operation when I was 5 months old. My left hip socket was completely missing as was part of my pelvis. So it was clear that walking was going to be a challenge. Who knows what they could do today with 3D printing or growing bones - in 1971 those were probably sci-fi!
Sheffield Children’s Hospital is a teaching hospital and my mum tells me we were regular guests in the lecture theatre there. My case was unusual so not only attracted medical students but also orthopaedic consultants from other hospitals who contributed ideas about my treatment.
My mum then tells me about a turning point when I was 3 years old. I’d had eight unsuccessful operations already – they were grafting muscle from my groin to try and strap my femur to the pelvis (being medically untrained I can only picture something like a hinge and a rubber band!). They were concerned that I was 3 now and had to get on my feet soon if I was going to walk.
On this particular day my own consultant - who was always mindful of phrasing his explanations in front of mum - wasn’t there. Instead my mum heard another consultant say “so as you can see it’s a hopeless case”. She summarily grabbed me from his arms, saying “if that’s the case, why are you putting her through any more of this” and took me home. Convinced I would not walk.
It was a turning point because it led to a vote and a decision. Three of my consultants came to see mum and dad at home. They explained that there had been a vote and some consultants had voted not to undertake further surgery. But that the three of them wanted to try one more thing. If that didn't work they would stop.
On the day of the operation, after watching me go into theatre, a nurse called mum into the office. On the table was a stack of greetings cards. They had been sent to the hospital by people from across the council estate where I grew up. The nurse turned to mum and said “This is going to work. Because this child has so many people rooting for her.”
And of course, it did. The muscles finally held the femur in place. It was my last chance to walk and I took it. Five days later I came home and took my first steps. I guess I’d watched all the other kids around me do it, I was just waiting for my turn.
Today I’ve been able to walk a few miles along the South Downs Way in Alfriston and I'm preparing for a series of big walks to complete the 100 miles from start to finish.
I know that I wouldn’t be able to consider doing that without two dedicated parents, two supportive siblings, and friends, neighbours and a community cheering me on. And a medical team in Sheffield, led by Mr DK Evans, who didn’t give up. Somehow, together, they gave me my first steps on the right path. I will always be grateful. And I intend to use them wisely.
If the shoe doesn’t fit... orthotics and hip dysplasia
Walking my first 10K for Steps last month taught me a couple of valuable lessons. Firstly, I need to build up my leg strength, particularly around my knees, or I’ll never manage the hills and rugged terrain of the South Downs Way. And secondly, I need to find some comfortable walking boots that my orthotics fit into properly, so I don’t get blisters.
This second realisation makes my heart sink. Oh no, not shoes….
Shoes have always been my personal nemesis. Practically and emotionally.
I was born with hip dysplasia (DDH). My pelvis is incomplete, crooked and I have legs that are different lengths. I also inherited some ‘unusual’ feet that are different sizes - and a left ankle that turns out a bit like Mary Poppins. I wear orthotics to correct my leg length and knee position so practically speaking, pumps or shoes that are light and tie tightly to my feet are the best.
Emotionally – well, like many women I drool over the sexy heels on display in the LK Bennett window. But shoe shopping just isn’t fun. Unlike Cinderella, the shoe rarely fits on either foot and the need to insert orthotics writes most girl-shoes off the list. When it comes to dressing up girly, I often feel more like the ugly sister than the fabled princess in waiting.
I didn’t mind shoe shopping as a kid. My orthopaedic consultant insisted on good shoes that fastened well to my feet so we always went to Clarks in the Co-op department store in Sheffield. They had animated models of the Animal Kwackers there, who I loved. Like Boots and his silver platforms there was a blingster in young Jill - so I always chose the shiny shoes with gold braiding. Happy memories.
The psychological challenges started for me as a teenager. Wearing stilettos was a marker that you were growing up and at that age I become hyper-conscious of the image that heels = sexy. So I persevered with my heels and fishnets at school (it was the 80s in a school with no uniform) because I wanted to fit in. And I wanted boys to look at me like they did the other girls. In reality heels just accentuated my limp and made me walk badly because they’re less stable.
Yet to this day I still dread dressing up for a night out where women wear sexy high heels with their dresses. My own inability to stand up, let alone walk or dance in them, makes me feel like I'm not quite cutting it as a woman. Of course, this is just my own perception - a story I've invented in my own head. But it’s honestly what goes on in it! Rationally I know it really doesn’t matter and I’m lucky I can walk. But emotions are funny things….
I was recently with a group of girlfriends who were sharing their first childhood memories. Ironically, mine is about shoes. My pre-school playgroup used to streamline the rush for bags and coats at the end of the morning, by sending you to get them according to shoe colour. “Everyone with red shoes. Now everyone with brown shoes.” It’s a happy memory for me because I got to go up on my own. I was the only one in blue shoes and I simply loved that I was different. I was differently-abled and differently-minded.
Thankfully stilettos aren’t the rage along the South Downs Way. So right now it’s about finding boots that can support but not cripple my funny ankles. And getting good orthotics that are fitted properly inside them. Since my 10K I’ve been consulting with a chiropractor and my podiatrist, and I’m being fitted for new orthotics next week.
The more I explore my life with hip dysplasia (DDH) and what goes on in my mind about that, the more I see that we’re all differently-abled. We all have things we’re not good at or a bit paranoid about. And let’s face it, you don’t need to have hip dysplasia to be crap at walking in heels!
My pledge is to try and be more like 3-year-old Jill - newly walking in her blue shoes. Walking differently. And proud of it.