3 months post-op: back to hip rehab to get off crutches
This week it’s three months since I had my knee replacement. Turns out that quite a lot of people born with hip-dysplasia develop knee problems due to the abnormal wear that comes from the way we walk. It’s been lovely to hear from these people who have commented on my @WalkingJill blog posts, and gave me a chance to hear what to expect after that initial and very painful first month.
So where am I at three months in?
- I’m very mobile locally, on my crutches, and back to walking my virtual Pennine Way – using my daily rehab walks to clock up 1-2 miles per day. Since 1st March I’ve managed 36 miles and there are 32 miles left to complete the challenge I had to abandon last year.
- I’m able to walk between the kitchen and lounge without crutches (albeit lobsided) and I can now stand for about 10 minutes unaided. I can make a cuppa or lunch and carry it to the lounge to eat or drink. Compared to a month ago this feels like a luxury!
- Doing certain physio exercises can be painful, and sometimes my knee aches after a long walk, but I’m not really in much pain.
- My knee isn’t swollen and I can see the shape of my lovely straight leg – the first time I’ve been able to say that in 50 years!
- I can sit at a table with my leg bent at 90 degrees for about an hour before I have to get up and move around to unlock it. This means I can sit at a desk to do a bit of work and can eat at a table.
- I’m back swimming in the fast lane in the local pool and I can get in and out via the ladders rather than using the chair hoist.
I’m not yet off crutches to walk any distance, nor am I driving or have I braved public transport. (Next time you’re getting on and off a train or tube take a moment to consider how you’d ‘mind the gap’ if you couldn’t stand on just one leg to step up and out easily, couldn’t hold on to any handles, and you’re surrounded by lots of people in a rush who are focused on their phones not where they’re going….)
It always comes back to the left hip!
My left hip has always been the weakest point in my body. That’s the one that wasn’t fully formed when I was born and has had so much surgery including a hip replacement 19 years ago. So it’s not really a surprise that getting me off crutches isn’t really about my new knee. It’s about getting my left quads and glutes strong enough to take more of the weight than before and retraining my brain to let it. It’s also about correcting the leg length discrepancy.
As well as physio exercises that now extend to both legs, the next big step is a podiatrist appointment to re-work my orthotics and potentially add a small raise to the sole of my left shoe. I used to have my left shoes adapted in that way but after my hip replacement my leg length discrepancy lessened and so I was able to have orthotics inside the shoes (my left foot is a whole size smaller than the right so there’s extra room in that shoe!). But now my right leg has been straightened there’s a good inch or so more discrepancy and no more room in the shoe! My first appointment is next week, and once I have some adapted shoes I should be stable enough to walk unaided.
Until then I’ll be whizzing around Walton using my crutches reciprocally, giving my triceps a work out as well as clocking up the miles!
Thanks to everyone who has been cheering me on xx
Jill Pringle was born with hip dysplasia and has had multiple surgeries including open and closed reductions, leg lengthening, hip and knee replacements. She walks and blogs to raise awareness of DDH and to raise money for Steps Charity.
A diary of ‘firsts’ for my two-month-old knee
It’s been exactly two months since I had my right knee replaced, which is part of managing my hip-dysplasia. As you can see from the six photos, the wound is now nicely healed and my knee is much less swollen – and so, less painful. I’ve kept a diary every day of my recovery and I thought it would be helpful to share the firsts along the way to this point. It’s been a nice way for me to reflect on my progress, not just how far I have still to go. The goal is to get back to walking without poles or other walking aids, and so get back out to happily rambling in the countryside or standing on stage to sing.
Week 1:
I was actually out of bed and up on my feet late afternoon on the day of my surgery and was able to bend to 30 degrees. Once the restrictive bandages came off on day two, I was able to take my first walk using a walking frame and sit in a chair to eat dinner with my leg elevated. By day three I took my first steps with crutches and on day four had successfully used them to get up and down a short flight of stairs for the first time. This meant I could go home. The first two days at home however were incredibly hard – our Victorian stairs were more challenging and I missed the structured days of hospital.
Week 2:
After a couple of days at home my partner and I were in more of a rhythm using the continuous passive motion machine (CPM) I’d hired, walking up and down the ground floor of the house on crutches, doing three lots of exercises each day, and between that sitting with my leg elevated with a bag of peas on my knee. This second week was incredibly difficult due to the constant pain and sleep interruption – most nights no more than 2-3 hours in 30 minute bursts. 10 days after my surgery I had the staples out, which made my leg feel less stiff, and by the weekend I took my first steps outside in the garden, and my first cup of tea outside accompanied by birdsong. Freedom!
Week 3:
The third week saw three incredible firsts. My first hydrotherapy session and the sheer joy of getting into water and really feeling my knee move with ease. This was followed by my first night of sleep. And at the end of the week, my first trip outside to get a cup of coffee in a local outdoor café. All of these improved my confidence because they felt like normal “Jill” things to do.
Week 4:
By week four I was able to get my knee to 70 degrees on the CPM, although less without it. I started to do normal things around the house a little more – make my own cup of tea albeit I needed help to carry it to a seat; fill up the bird feeder in the garden; do some very light cleaning. We could handle our first visitor to our routine and so my sister came to stay. It was so lovely for me to spend time with her, and for my partner to get a bit of time off from helping me get up, dress, wash, eat etc. That weekend I was finally able to have my first shower rather than flannel wash, and to go out for lunch at a local pub. Whilst sitting still was hard (they had a table which allowed me to elevate my leg) and I needed to use an old dressing-gown belt to lift my foot into the car, that first social activity was a huge step.
Week 5:
Finally, this week, I said goodbye to the surgical stockings and my legs started to feel a bit like my own again! I was able to stand to make dinner for the first time and progressed to walking up and down the road on my crutches, not just in the garden. I saw the consultant one month after my surgery and whilst I was progressing well, my knee flexion (bending) was stuck at 70 degrees. Unless I can get past 90 degrees by two months, I will need a manipulation under anaesthetic. Which I don’t want.
Week 6:
Perhaps the threat of more surgery spurred me on and by the end of this week I had the CPM at 80 degrees for the first time and 78 degrees without. By now I am way more confident on my crutches, using them alternatively in a more natural walking pattern and so my average steps per day jumped from an average 3,000 the previous week to 7,000+ including a walk to the River and back. In this week I had my first day showering and dressing with no assistance, regaining some important independence.
Week 7:
Six weeks prior to surgery I’d had to stop taking HRT, so I was overjoyed to restart at this point and have my first evening watching the TV without half-hourly hot flushes! I also made my first independent visit to the local co-op and call into my cat’s vet to pick up some medication for her. Two friends came to visit and I saw a couple more on zoom – all of which has been so welcome, to break up the day and have different conversations, with people I love.
Week 8:
Finally, at the end of this week, I passed the 90 degrees bend mark, albeit passively on the CPM. I walked to the local pool to restart my membership and had a lovely hot chocolate in their café – my first drink out without someone accompanying me. My average steps per day exceeded 10,000 for the first time, which is back to my pre-op levels. And at the end of the week, albeit with a fair amount of pain and effort, my quads locked my kneecap enough to lift my leg straight off the bed. I also saw the podiatrist for the first time, who added more raise under my left heel as a temporary measure until I get measured for a full orthotics adjustment.
Week 9:
The big first in this week was getting into the local swimming pool, and properly swimming. I’m normally in the pool a minimum of three times per week so my whole body has really missed this exercise. My back and shoulders – which have been working overtime on crutches – were very grateful! I was able to walk all the way along the riverside and had my first walk up and down a slope (tortoise pace downhill which requires most knee stability). The reward was a cup of coffee in the local arts centre. For the first time I got the CPM machine to a 100 degrees bend, and we officially measured a 94 degrees bend in both hydro and physio. I successfully managed to demonstrate this to the surgeon today, which means no surgical manipulation - hurrah!
Orthopaedic surgery is not for the faint-hearted and this has definitely been the most challenging I’ve had. There’s still, of course, a long way to go before I’m walking without aids and able to live my life fully once more. There are also some important firsts still to go; driving and public transport being the next steps for independence before I could restart social activities like choir or meeting friends away from home.
But I have come a long way over the last two months. Huge thanks to my partner for his support day in day out. And to all of you for following and cheering me on!
Jill Pringle was born with bilateral hip-dysplasia and has had various surgeries including open reductions, leg lengthening, and hip and knee replacements. She blogs and walks to raise money for Steps Charity.
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.
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