“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.
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 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
My 10K Walk. Fitting in by Standing Out.
Yesterday I walked my first ever 10K race.
I consider myself lucky. Despite being born with hip dysplasia, as a child I wasn’t bullied much about my walk, or even about my legs with their knobbly knees and surgery scars. Like many people who have a weakness in one area (for me, sports) I found areas that I was good at and could compete in. I focused on being a bit of a swot at school and singing with a girls’ choir (if you’re thinking bookish-choirgirl you’re about right and the dating profile that generated is a whole other blog post!).
The downside of focusing only on what I’m comfortably good at, is that for a long time I avoided situations where I had to hang out with the ‘sporty’ kids. I’d told myself I didn’t fit and would have to ‘compare’ myself with people who were very physically able. So I’d spare my emotions and protect my body by playing it safe and not joining in. I got fairly good at swimming because it’s something you can do easily alone, and I braved aquafit classes because they’re good for the injured. And that was my keep-fit comfort-box ticked.
Yet I have a distinct memory of being at primary school and insisting (to probably mildly-terrified teachers) that I would climb the tall A-frame or get on the beam in PE class, because I was going to do what everyone else was doing. Or at least as close to it as I could. I’d just do it the Jill way. About a year ago I wondered - “where did that little girl go”? It struck me that she had it about right. Of course, at 6 you don’t understand the risks, at 46 you do. But risk and reward go together.
So a year ago I joined a local running club. I’ve never been able to run really because my hips are at very different levels and my knees and ankles are also mildly deformed. But I’d learned from friends that they had a walking group and went along. I remember my first Sunday and how afraid I was. Afraid that I’d physically hurt myself, but even more fearful of the impact on others. What if I was too slow, what if I held others back from pushing themselves? Standing out for all the ‘wrong’ reasons (wrong in my head, not theirs of course).
I consider myself lucky. Because the Bearcats was the perfect running club to do this. I was amongst people of all running and walking abilities who just took me in their stride. Some run marathons; many do not. Some of the walkers used to run until their knees stopped them; some are walking first to build up to running something like a 10K; others are just injured for a week or two so walk instead. Everyone is differently-abled. They encourage me to push myself, just as they push themselves too. I’ve never felt more included, anywhere.
And so yesterday, nearly a year on, I walked my first ever race – the Turks Head 10K fun run. I did some fundraising for a small charity called Steps, but mainly I did it to push myself. And to join in with the sporty kids rather than always watch them.
Just like everyone who was doing their first 10K (or even their fifth!) I had to train to build up my distance and pace. I started walking 4K twice a week and then built from there. Each week I stepped up the distance or the pace and every time I did, my knees or my hips ached more or my neck locked to compensate for the instability of my funny walk.
Yesterday, I woke up with neck pain and a locked left shoulder. OK, so that felt less lucky. Yet I completed the race in just over 1 hour 45 minutes. I was way behind everyone, it started to hurt through the last few kilometres and I’ve had to have my neck clicked by an osteopath today. But I suspect I’m not the only one who’s feeling sore today.
I crossed the finish line to people cheering me, just like everyone else. I did it the Jill way and I fitted in, by standing out. And I loved every minute.