The knee-replacement rehab rollercoaster
So today is four weeks since I had my total knee replacement! I had osteo-arthritis caused by my 50 years of walking differently due to my congenital hip dysplasia. The last four weeks of rehab have been a real rollercoaster – both physically and emotionally. I have now stopped spontaneously crying at very random things unrelated to my surgery. But there are still days when this rehab very hard and where I take a proverbial step back to inch forwards.
My first hydrotherapy session had given me a couple of days of real benefit and sleep and so my expectation was the same from the second. Instead, it led to a very painful couple of days where all my exercises and my time on the CPM machine were tough and the pain made me cry. It all felt too much. And then things started to improve again, as I once again felt the benefit of further stretching and bending my knee. “No pain, no gain”. My third session today - whilst painful - demonstrated how much my quads have improved and how much further I can bend my knee than two weeks ago. And how much farther I still have to go to reach 90 degrees. We’re currently at 70.
What’s proving hard to shift is the inner part of my knee, where scar tissue is being stubborn and my ligaments have been straightened for the first time in my life. I have always been knock-kneed and now I’m trying to train my knee to bend in a straight line. And it doesn’t like it!
Part of the challenge getting the CPM machine above 70 degrees is my dysplastic right hip – which starts to hitch because that’s what it’s always done. And so now I sit on a table with my leg dangling to get my leg further. Whilst painful this feels more natural.
I can still see improvements each day. My sister came to visit for a couple of days over the weekend and take over “carer” duties from my partner. On both days we were able to nip out for a bite to eat in a local café or pub, and I was able to sit at the table, albeit fidgeting a lot, for about an hour. This is big progress and felt so very amazing to do something that all too often I have taken for granted.
Just like a rollercoaster, surgical rehab has its ups and downs. And now I’m on the rollercoaster there’s no turning back, I have to keep riding the highs and the lows. Because in the end, I will have knee that gives me back the stability that allowed me to walk the South Downs Way, and protects my DDH hips for the future.
Thanks for following the journey xx
Jill Pringle was born with bilateral hip dysplasia in 1971. She has had several surgeries through her life including leg lengthening, hip replacement and now a knee replacement. Her blog shares her journey living and walking with this common condition and she raises money for Steps Charity; you can donate here.
Getting my new knee moving: hydrotherapy
Yesterday two really great things happened – I got into a pool and I slept.
You all know that I love to swim. Walking down the steps into the hydrotherapy pool yesterday almost made me cry with joy. As I walked deeper into the water my body relaxed limb by limb – the first time since my knee replacement two and a half weeks ago. I felt supported and the heat was like jumping into a radox bath. My 30 minute session with my physio went so quickly, but in that time I was able to squat a bit, paddle and bend my legs, stand on tiptoes and my heels, and walk without tensing my upper body. Some of the movements hurt a bit, yet the joy of moving far outweighed that. For the first time in nearly three weeks I felt like I had my body back.
This knee replacement is definitely the hardest of my surgeries. I was warned that for all people a knee replacement is harder to get over than a hip replacement. As you know from my last blog post, not sleeping has been a real issue. Not being able to bend the leg has limited the positions I can lay in and my body wakes me every hour or so to move. Whilst lying on my operated side can help me get to sleep, it’s painful for the knee and increasingly for my right hip. So, it’s a constant nodding and waking routine where I get limited rest in each 1 hour cycle – also apparently normal with knee surgery.
Then last night, after hydro, it was easier to turn, and instead of waking hourly with big gaps in between snoozes, I managed a couple of 3 hour sleeps. My joy today is palpable.
My scar has now just about healed. Just a couple of steri-strips and scabs to come off naturally over the next week. I also took my last blood thinner last night, so I’m looking forward to an evening in front of the TV tonight without the shivers. And by the end of next week I can finally lose the surgical stockings and go back on HRT, so hopefully goodbye to the hot flushes too.
My days continue in a rehab routine of threes. Physio exercises three times a day; Walking in my shoes/orthotics for 15 minutes three times a day; CPM machine for 30 minutes three times a day, and pain meds three times a day. I also now have to start varying how I sit every 30 minutes – legs up, legs as down as a I can get them. All day this has me like an “ill-sitting hen” as my mother would have said. My cat, who thinks my lap is her personal property on-call, is not at all amused by this constant moving.
But it’s all progress. Small steps towards a more normal life. I’m intrigued to see how I’ll walk in six months’ time. My right leg is now even longer than my left so I already know I will need even bigger orthotics in my left shoe. But that’s a job for eight weeks post-op, not three.
For now, the next step is to use more hydrotherapy and physio to get my knee to 90 degrees within two weeks, when I next see my consultant surgeon. He was very clear that if I can’t do that, he will have do a manipulation. He was also honest that “you really don’t want that” and that it will be extremely painful. So that’s a clear goal – 90 degrees under my own steam in two weeks. At the moment I can get 55 degrees on the CPM machine and 45 degrees myself. Which I guess is half way to target.....
I’m back in the hydrotherapy pool on Monday and I can’t wait. Until then, have a wonderful weekend. Jill xx
Jill Pringle was born with bilateral hip-dysplasia with her left hip dislocated. She has had multiple corrective surgeries including leg-lengthening, a total hip replacement in 2003 and now a knee replacement in 2022. Jill writes this blog to raise awareness of hip dysplasia and walks to raise money for Steps Charity Worldwide.
Sleepless in Surrey: my knee replacement
I had my total knee replacement 10 days ago, just 2 weeks after my 50th Birthday. By my counting this is my 12th orthopaedic surgery, my last being a total hip replacement in 2003. My brain had conveniently helped me forget some of the realities of recovering from surgery. And it turns out that with a knee replacement there is a specific symptom of sleep interruption that didn’t come with any of my past hip surgeries.
Arriving at hospital, getting into the gown, and chatting to the anaesthetist and surgeon all felt very familiar territory. The mild anxiety of waiting (although I was lucky and first up; so down for surgery just after 8am) was also familiar. I had expected a spinal anaesthetic but to be sedated throughout, but the anaesthetist discussed with me the benefits of being awake; benefits for my recovery and also for not requiring an oxygen mask (a phobia from those childhood surgeries where you were ‘gassed’ to sleep with a big black mask). And so I chose to be awake. I can’t begin to describe the weird sensation of the table vibrating from the drill, and the sound and motion of a hammer on my knee, but without any feeling or pain. Yet it was interesting to hear the the consultant and his team discuss the exact angle they were going to plant the knee – 1 degree this way and so forth – until they found the right place. There was a fear that my still dysplastic right hip might make it hard to find the centre of rotation, but it didn’t.
I was also allowed to take my phone into surgery and listen to music – so my surgery was to the accompaniment of music by Bach, Holst and Vaughan Williams. I steered away from choral music so that I didn’t start singing!!
Recovery was very quick on day 1; I was still pretty numb so pain-free and without the anaesthetic I was able to eat quickly and importantly, for a Yorkshire girl, drink plenty of tea :-)
And then the pain started through the night. And with it, the insomnia. Now, I’m used to surgery and the fact that painkillers are required to get me through the early stages, especially at night. I had been warned that a knee replacement is much more painful than a hip and I can 100% confirm that’s the case. After my hip surgery I was able to sleep between pain meds; this time, not really. With today’s modern technology (a fitbit) I can tell you that on average, I had 1-3 hours sleep that week. And that sleep interruption still continues. I’m told that it settles after 3-4 weeks and I’m really hanging on for that because it’s so draining. I dream of the day I get into bed and feel my body relax rather than tense.
Thankfully, in hospital my days had a rhythm dictated by others - punctuated by times to take drugs, times to get up and mobilise with the physio, and mealtimes.
After four nights it was a joy to come home, to see my partner and my cat, and to be back in familiar surroundings. The first two days were really hard; after one night of my not sleeping, we ordered a spare bed for the dining room so my partner can, at least, sleep through my insomnia. It took us two days to get into a rhythm of how to wash, when to do exercises, when to rest, when to walk around, when to sit with a bag of peas on my knee to reduce the swelling. Since Monday we’ve figured that out more, and it is easier to cope within the schedule we have created.
Yesterday was an interruption to that schedule. I was back at hospital having my staples removed (quite painful I have to say) and seeing the physio. The wound is still a little bit open, so I’m steri-stripped up, but it does feel lighter and more flexible without the staples.
So until the wound fully heals I need to be a little more careful with bending the knee for a few days (no more videos of me on my CPM machine until next week).
Walking with crutches is OK and I’m well-practised having owned a pair since I was seven. But I am challenged by the fact that I naturally hitch my right (DDH impaired) hip, rather than using it normally, and so it was clear in the physio session that there is some ‘unlearning’ to be done. My left side – subject to all the other surgeries – is not strong enough to stand on (I have never been able to stand just on my left leg). Getting up our Victorian stairs is fun – I’m supposed to lead with my left leg, which I have never done in my life, and sometimes if I’m tired my partner has to push it onto the step for me. The joys of being differently-abled and where the bio-mechanic ecosystem that the new knee is fitting into is not in any way normal!
Every day some little things get a bit easier. And for that I’m grateful. I’m also grateful for an amazing partner who is able to be at home with me and shows enormous love and patience in looking after me, and being my carer as well as my boyfriend. I couldn’t do this without him.
Love to him and to you all xx
Jill Pringle was born with bilateral hip dysplasia (DDH) and has had a life of surgery including open reductions, leg lengthening, a hip and knee replacement. She writes to raise awareness of her different-ability and to raise money for Steps Charity who support people who can’t take walking for granted. You can donate here. Just £5 provides and information pack for someone newly diagnosed with hip dysplasia and their families.
I'm a hip girl, not a knee girl!
I can't believe it's nearly 19 years since I last had surgery on my hips. I was born with hip-dysplasia and so my total hip replacement gave me a new lease of life. Good news is it’s still holding strong 19 years on.
But life brings us curved balls and this year, mine was learning that my walking was worsening not due to my hips, but because my right knee is too arthritic and unstable to hold me up. As I approach my 50th Birthday, my knee is saying “enough taking all the weight through this side!”
I’d felt the decline through the year. Where at the start of the year I could go out for 3-4 mile walks with my trusty poles, by late summer I was struggling to walk the half-mile into the town centre. When I’m standing to sing – my other passion - my knees lean on each other for support in an attempt to hold me up, and my shoulders, neck and calves ache from the strain. It feels like I’m slowly crumpling in on myself.
And so I have a right total knee replacement scheduled in January – subject to what happens with covid over Christmas of course.
As I prepare my body for surgery with physio exercises, I’m very conscious of what’s going through my mind. “I’m a hip girl, not a knee girl”
- First - and foremost - how will I be able to rely on my weak left side whilst my right side heals? For 50 years it’s been the other way around for a reason. I have started using my crutches to help reduce the pain and exertion, but it’s hard for my mind to switch sides, let alone my body. I know I have to unlearn to re-learn, but this is crazily mind-blowing!
- Secondly, what will it be like waking up in hospital without visitors? I’m very lucky to be having surgery right now, I know that. My partner and my sister will need to face-time me which will be weird. But most on my mind is that this is the first surgery I’ve had without my mum being there. Mum by my bedside pretending she’s not really crying, has been a constant through my many hospital experiences. She died a year ago and she’s on my mind a lot, even at my age.
- Thirdly, what if it doesn’t work, then what? This is obviously the biggest fear, the fear of losing my mobility for good. When I had my hip replacement it was the first time I had to sign my own consent forms with the risks of surgery laid out in front of me. It made sense of how hard it must have been for my parents, for years. This year, the stakes are higher signing consent forms to say I understand the many unlikely but possible risks from surgery, anaesthetics and of course covid. None of this puts me off having the surgery I need to get my mobility back, but it is making me somewhat nervous. At my pre-op assessment last week, it all started to feel a bit ‘real’.
Finally, what does all this mean for my virtual walking challenge to raise money for Steps? The last three months I have kept going, a mile (or sometimes less) at a time. I’m proud to have made it to the 200 miles marker (so I’d be somewhere in Northumberland on the Pennine Way but not yet into Scotland). But sadly, the last virtual section will need to wait until 2022. Feels like a good rehab target to me.
I will try to blog through the post-surgery rehab and share the ups and downs. Until then, thanks for all your support this year for Steps Charity this year – who really don’t take walking for granted.
Merry Christmas and a Happy New Year to you all.
Love Jill xx
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
Hips, Knee and boomps a daisy!
You may have noticed that I haven’t been posting many walks recently. That’s because I’ve been finding it harder to walk any distance. I can walk, say to the swimming pool, or for half an hour along the river and back, but that’s about it. This year my unusual gait has become more pronounced and I feel less stable. I find it hard to stand up and sing properly – to firmly root myself in a comfortable position to support my voice. And I’ve been having more trips to the osteopath to re-align and reduce the pain in my upper body and head.
It feels like something has changed in the way I’m held together.
It has been four years since I last saw my orthopaedic consultant and over 19 years since he performed my total hip replacement. So this week I went along for a consultation and x-rays expecting to discuss hip revision surgery. The plastic liner to the joint wears over time, just like cartilage does in a real joint, and causes abnormal motion - and so I expected we’d reached the point where that, or other parts, might need replacing. I was pleasantly surprised to see from my x-rays that there has been very little change in the last four years (even after completing the South Downs Way in 2019) and the revision will be a future challenge.
The curved ball – or knee to be precise!
The issue with my current walking it seems, is my right knee. Nearly 50 years of bearing more than its fair 50% share of weight and compensating for the surgeries on my left side, plus dealing with the unusual shape of my right hip (my hip dysplasia is bilateral) and my crooked pelvis and different length legs, has taken its toll. The outside half of my right knee is now totally arthritic (with no gap between the femur and the tibia above and below it) and it’s veering inwards to try and compensate). So in short, I will need some sort of partial or full knee replacement on that side. My consultant is referring me to a different specialist to see if a partial knee replacement is possible, or whether I need a totally new knee. And to have more physio in the meantime.
Whilst my right knee has always been a bit painful, I hadn’t expected this diagnosis. I have always known that I’d need several hip surgeries throughout my life; it’s an expected part of the Jill plan. A bionic knee wasn’t on my radar. And it’s taken me a few days to get my head around it.
Funny what first flashes into your head isn’t it. My first question was “so how will that work on crutches then when it’s the side I rely on that will be in rehab and the side I can’t bear much weight on that I’m trying to rely on?!”
My whole brain is wired to rely on the right side and have surgery on the left.
This all happened the day I returned from a camping trip on the South Downs Way where I’d had the chance to ramble with my poles along a short stretch of the path I took two years ago. And in the week where the top sportspeople from the #WeThe15 differently-abled population are showing us what’s possible at the Tokyo Paralympics.
I know that I will work through this next challenge. I’m still swimming, still singing and still walking – just with smaller steps and bit more caution, for a while. I’m nearly half-way on my virtual walk – 130 miles down, 138 to go. Every step counts, however small.
Will I finish it before or after I get a new knee? I’ll keep you posted on that one xx
Jill was born with bilateral hip dysplasia (DDH) in 1971 and has had various surgeries including a total hip replacement. She walks, swims and blogs about hip dysplasia to raise awareness of this diff-ability and money for Steps charity. Follow @WalkingJill on Facebook.
Paddling with my hands: pain and hip dysplasia
People often ask me if it hurts to walk. The answer is ‘sometimes’. Funnily enough, since I had my hip
replacement, the one part of my body I rarely feel pain is in that left
hip. It’s everywhere else that’s working
so hard to compensate that causes me discomfort. Usually for me it’s pain in my neck and
shoulders and my right knee. The knee
because I take so much weight through that leg and the right hip itself doesn’t
rotate normally so I hitch and throw my leg out. And my shoulders and neck because they’re
working overtime to stabilise me, to keep my balance.
Sports have always been a bit of a challenge. I’ve talked about my early, wobbly attempts at the egg and spoon race. At junior school I could do two things. I have very long arms (no really, like they almost hang to my knees) and so I was good at badminton for a while. I could reach the shuttlecock from anywhere without moving! But as the other kids got older and stronger I had to start chasing the damn thing around the court, and it was clear this wouldn’t be my sport after all.
The other thing I could do, and to this day I love to do, is
swim.
In the water something extraordinary happens for me and it occurred to me the other day that what I love about it is I feel no tension, discomfort or pain. It’s what I imagine some people feel when they walk – it’s automatic and they don’t have to think about it. Once I get into a rhythm swimming, that’s what I feel. I’ve done five laps and I don’t notice – I’m just in flow. Walking has never been like that. I don’t consciously mark every step but I do always have to focus on where my feet are placed and what I’m doing. I’m hyper-vigilant about what’s around me in a crowd (yet still end up in that confused ‘dance’ with a facing stranger who can’t figure out which way I’m trying to go past them). It’s also easier for me to walk with others if they’re on my right-hand side as I’m less likely to bump into them. So thinking about those things is a conscious thing I have learned to do. Steps Charity say “not everyone can take walking for granted” and yet despite all this, I still do. It’s just a slightly different walk. I’ll be back walking the South Downs in the Spring when there’s no chance of slippery frost. Until then you can find me in the swimming pool.
I don’t know how long I’ve loved the water but I remember swimming lessons with joy. It just worked. I could actually do it better than some people and that was a rare feeling for me when it came to sports. The picture you see on this post made me smile. It’s of me and my dad at the seaside (Mablethorpe’s golden sands) where he’s giving me the chance to paddle with my hands because I’m in a chest-to-ankle plaster-cast called a hip spica. It was a way of holding my hips in the sockets after surgery. It didn’t make a very good swimming costume though. Maybe my love of swimming comes from this picture? I found something I could do and so I focused on that.
I still love the sea, and swimming. And it occurs to me looking at this picture, that swimming is still simply paddling with my hands.
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
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.