Mind the gap, find the gap! Trains, parking and the social model of disability.
In the last two weeks I have taken my first train journey and my first solo drive in the car, since my op. Such big steps forward in lots of ways. As it turns out they were very hard steps to take on crutches with poor balance.
I’m in this weird period right now where neither leg is the good, dependable one, and that’s a first for me. It’s really reminded how differently-abled I can be and what the social model of disability is getting at.
Mind the Gap – the train journey
I’ve had intermittent periods on crutches my whole life. I’m pretty mobile on them, relatively quick vs. a novice, and accustomed to using them on public transport. But my first trip into London by train since my knee replacement, was just horrible.
I remembered to take a train 30 minutes earlier than necessary, so I had time for lifts in connecting stations and take my time across a busy London concourse like Victoria. But getting on, and particularly off the train to change, was more difficult than I expected. Clapham Junction is an amazing feat of engineering and I’m always in awe of how many lives it connects every hour. But the platforms are curved, the train leans away from the track and the chasm that awaits when the doors open is huge in both height and width. Before my op I was handling this by taking weight on my right leg. Now it’s Hobson’s Choice which leg is the weaker. Kind people on the platform try to help, but essentially try and grab my arms (which stops the crutches doing their job and puts my weight on the legs I’m trying not to rely on).
I finally got off with a lurch and a hope. It hurt a bit but I was mostly relieved that I didn’t fall into either the gap or the crowd waiting to get on the train. It’s safe to say that by the time I got to where I was going I was quite traumatised really. And so spent most of my lovely first Choir rehearsal in London dreading the journey home.
Next week I’ll be trying this journey again. I will try to find staff at the station and the right door for the guard on the train, so I can warn them I may need assistance at Clapham. Which, of course, requires more time and planning.
There is nothing easily done about this; old Victorian platforms were not built with disability in mind and I’m not suggesting that Clapham has to be rebuilt, for me. I also know that for some people it’s much harder; they have to call ahead to pre-arrange travel to even get access, and I also know that others in the DDH community would love to walk as far as I can on crutches. We’re all different.
It was simply an eye-opener into travelling with a disability - that I’d forgotten. For a while, I suppose, I’d taken trains for granted.
Find the Gap – the car park
I can now drive about 40 minutes without pain in my right knee or hip flexor. Which means I no longer need my partner to arrange his day around any medical appointments. That’s great for both of us, it gives me independence and I’m grateful for it.
But I always experience the background anxiety of “where am I going to park?” I need to make sure I can get out of the car and then be even more certain I can get back in it when I return!
I am able to walk too far (even on crutches) to qualify for a blue badge. I certainly don’t usually need to be right next to the door of a shop (unless I’m carrying a shopping bag in which case it’s a shuffle, placing the bag down on the pavement every few yards).
The big car parking challenge for someone like me is finding a space at the end of a row, where I can open my car door either into a grass verge, a pavement or the road – so that I can get the door all the way out. I need this clearance to swing my legs out and round together (without full flexion in my knee) and then I need to use the door to lift myself up out of the seat. I can’t go in and out sideways one leg at a time. Once I can stand up I need to turn around, lean into the back seat or over to the passenger seat, get the crutches out, put them in my arms and then close the door. Let’s just say it takes a while. Most people are patient and wait. Most.
On the way into a car park, I do at least have the chance to control this - finding the most suitable space or if there are only narrow spaces left, leave. What might happen on the way out is always on my mind. I have mini. If I can’t find an end space then I have to leave enough space next to me to get out at the side. Someone with a big car or van invariably sees the next space as a great place to park - it gives them plenty of room. Why wouldn’t they? It makes perfect sense and they don’t know that I need that extra room. So I return to my car and can’t get open the door even a fraction. Pre-op, I would have gone in the other side and scutched across the seats and hand break as my knee, whilst painful, was hypermobile and very loose. Less of an option now where bending is more challenging the knee is more robust.
So the options are to contort and cause myself some pain and potentially put some things in my upper body out of alignment for a couple of hours; or if it’s too tight, wait for them to come back to their car. The only other alternative is to park in a disabled or parent and toddler space and hope I don’t get a fine. Hopefully I get the can just find an end space.
Again, I’m not alone in this, many older people without a lifelong disability have the same challenge. And I’m happy to be finally out and about. It’s just this is on my mind from the minute I consider the trip, weighing up do I go out to this thing and risk it, or not.
The social model of disability
My reason for sharing this is not to rant or ask for sympathy. I don’t resent others’ mobility and if you have it you should use it – I would! I have a pretty ‘it is what it is’ attitude borne from 50 years being a differently-abled walker with huge variation my mobility across different periods – sometimes highly disabled by the world around me, other times not much.
Since part of my motivation for creating this blog is to share what it’s like living and walking with just one limiting condition, I simply want to share my experience. And ask you to take just a moment to consider what you might take for granted.
If you want to learn more about the social model of disability, there’s a great 3 minute video on the Scope website here that explains it well.
Thanks for reading. Until the next journey…
Jill Pringle was born with bilateral hip dysplasia in 1971. She has had numerous surgeries as both a child and adult, including open reductions, leg lengthening, and both hip and knee replacements. She writes this blog and walks to raise money for Steps Charity – you can donate here.
Leg-length discrepancy – a DDH journey of shoes & surgery
Owing to my hip dysplasia and somewhat ‘wonky’ pelvis, my legs have always been different lengths. But that leg length discrepancy has varied over time. If you’ve ever had a go at cutting your own fringe (never advisable I find it always leads to endless tinkering one side then the other until it’s too late and you're scalped...) then you will understand the journey my legs have been on. Every so often leg length becomes an issue, and by replacing my knee and giving me a straight right leg for the first time in my life, my left leg is once again too short!
Most people with DDH have some form of leg length discrepancy and managing the impact of that is much discussed in forums such as those managed by Steps Charity or the International Hip Dysplasia Institute. Even a small difference can cause back problems that we don’t need on top of our hip challenges. There are different ways to manage this and two I’ve experienced; adaptation of my shoes (external raises or orthotics inside the shoe) or leg lengthening surgery.
I finally got to walking aged 3 ½ after a fair amount of surgery and I gradually grew quite lopsided. Whilst my left leg looked shorter – and standing I would lean significantly to one side - the problem wasn’t that the leg itself was shorter. Rather that it had been set so much higher (because the socket was missing) and so it rested close to the top, not the bottom of my pelvis.
In 1988, at the age of 16, I had my left femur lengthened. This was a relatively new surgery developed to help people with restricted growth like dwarfism. It was also being used for people like me who had significantly different leg lengths. This surgery essentially broke my femur in two, screwed in an external fixator either side of the gap which I then turned ¼ mm every day for several weeks with an Allen Key (yep, looked just like the ones we dread from Ikea!). This lengthened the gap, into which new bone grew. Once the new bone hardened the pins were simply unscrewed, the wounds healed quickly, and I had a longer left leg. It didn’t hurt to turn, to be honest the most painful part was cleaning the pin sites which would get infected (a bit like soreness of a new pierced ear or belly button) and I had some sciatica as the nerves and tendons had to stretch to fit.
What that surgery gave me, aged 16, was my first ever experience of standing almost straight. My shoulders were level, and importantly for my singing, I could expand both sides of my lungs equally. My voice tripled in size overnight! I was also able to walk with much less of a limp until my late 20s until my left hip was so worn and arthritic my pelvis was shifting and length was again an issue. This time it was managed by adding an external shoe raise to my left shoe (between the shoe and the sole).
The downside of the lengthening surgery came when I had my hip replacement in 2003. Normally in cases like mine a surgeon will address the leg length discrepancy whilst fitting the new hip and so level the hips. But of course, now, my left leg was too long! By now you should understand the fringe-cutting analogy – LOL!
What it did do, is reset the hip to where it was after my leg lengthening surgery, and so I no longer needed the external shoe raises, but a much shallower inner orthotic. This was great as it’s more flexible – the orthotic can be moved from shoe to shoe, rather than being able to wear only the shoes that have been adapted.
So why am I writing about this now? ….and sharing photos of my bad 1988 perm to boot! Well, by replacing my right knee and thereby straightening that leg, it is once again too long – almost 2.5cm. If I don’t address this, it will be difficult to get off crutches and I will start to cause the same problem that led to my knee replacement where my leg bends inwards to compensate for itself and causes abnormal wear.
And so last week I was back with the podiatrist to analyse my gait and figure out the combination of external and internal raise I'm going to need. This morning I posted a shiny new left trail shoe to have an external raise added – 13mm at the rear gradated down to 4mm at the toe. Once that arrives back my podiatrist can re-asses the inner orthotics which are also designed to manage my foot position, size difference and the hyper-mobility I have in other joints.
It's amazing what modern healthcare professionals can achieve isn’t it? Not just in surgery but with a holistic approach to our biomechanics.
Meanwhile I continue to swim 4x a week and walk locally on my crutches, and I’m amazed how many miles I have clocked up on my Virtual Pennine Way challenge. Since I re-started, post-surgery, I have walked a staggering 62 miles on my crutches. Which means there are just 6 miles left to go to finally complete the full challenge I had to abandon last year.
Thank you to everyone who has cheered, liked, supported and donated along the way – see you soon at the finish line. Love Jill xx
Jill Pringle was born in Sheffield with bilateral hip-dysplasia. She has had several surgeries including open reductions, leg lengthening, hip and knee replacements. Her blog raises awareness of living and walking with the condition and her walking to raise money for Steps Charity Worldwide to which you can donate here.
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.