Mobility aids from the Tip! Getting my home ready for hip surgery
Over the last few weeks, I’ve had to start readying myself, and my home, for my reduced mobility. I’m having a full hip revision surgery next week and after just 2-3 days in hospital, it’ll be down to me and my partner to manage the rehab - and that means shopping for mobility aids.
This is not my first rodeo, when it comes to orthopaedic surgery. I had my first surgery at Sheffield Children’s as a baby, a leg lengthening surgery aged 16, a hip replacement at 32, a knee replacement at 50, and now my hip is ready for a refurb.
Which means I've been dusting off some of my existing mobility aids, and shopping second hand for some new ones...
- I already have my crutches – same pair I’ve had since my original hip replacement, and I still use to get on public transport.
- We have steep victorian stairs, so we’ve picked up a single bed at the local charity shop, and rearranged the dining room to allow me to rest downstairs. Bit cramped but safer.
- Since I can’t bend my new hip more than 90 degrees without potential dislocation, I’ve found a high-backed chair with firm arms. Once again, the local hospice charity shop is a winner. It’s not the most modern style, but blimey it’s comfy (both partner and cat can be found sitting in it far too regularly….)
- I won't be allowed to sit too low, and need arm rests to lower myself, I’ll need a toilet raiser and a commode for upstairs once I get there (we have a downstairs loo). My top tip: visit your local refuse and recycling centre – if they have a reuse shop it will be stacked with a decent array of bath boards, toilet raisers, commodes, crutches, walkers and sometimes folding wheelchairs.
- I already have the bath board so I can sit and shower whilst I’m not able to fully weight bear.
- Couple of long handled grabbers from Amazon to keep things in reach or make sure I don’t bend (yep, cue Dalek impression hilarity when they arrived…)
And then, more personally, it's been about exercising, and getting my kit bag ready for hospital.
- Lots of swimming and exercises
- Stop HRT for 4 weeks (any menopausal women reading will sympathise with how that’s been!)
- Stopped gardening last week – not allowed any skin breaks/scratches or insect bites
- Made sure I have a respectable nightdress, light dressing gown and loose fitting clothes but not long enough to trip over
- Flannels ready for bed washes. Never a joy but necessary.
- Thick socks – feet get cold whilst I’m less mobile
- A pair of shoes that haven’t had external raises fitted (it’s likely my leg length may change again)
- A good stash of library books
- Start using the special hair and body wash and nasal spray the hospital provided from tomorrow.
If you read this wondering is Jill the type of person who likes to be prepared, you have your answer, folks!
It will be hard for me to publish new blog posts for the first week after my surgery. To stay tuned with smaller updates, follow @WalkingJill on Facebook.
Jill Pringle was born with bilateral hip dysplasia. She has had various surgeries on her hip, femur and knees as both a child and adult. She writes about her experiences to raise awareness and had undertaken various walking challenges to fundraise for Steps Charity.
Learning to live with less mobility: hip dysplasia and surgery
I can’t believe it’s been more than a year since my knee replacement. And if I’m honest, I can’t believe I’m still having to use walking aids of some sort quite regularly. I guess the nice English euphemistic phrase would be that the outcome of my surgery is 'not quite what I’d hoped it would be'. I have to get used to having less mobility.
The medical bit
There is nothing wrong with my new knee itself - surgically speaking that’s a success. And after a visit to my hip surgeon at the start of the year we can see that my left replaced hip, now 20 years old, has not deteriorated as a result. In fact, it’s in great shape for something that’s supposed to have a life of 15 years. My right hip – dysplastic but never bad enough to be replaced – is not orthopedically affected either. However, its rotation has been changed by straightening my leg, and so my hip flexor does limit my knee flexion which is an interesting new twist. In short, my right hip worked better with a valgus ‘knock’ knee to compensate for its limited range. But that’s why my old knee wore out on one side!
In short, whilst each of the parts in isolation is OK, something about the whole combination is more limiting. For the first time in 20 years, I feel disabled again, not just differently-abled. And having less mobility has taken some time to get used to.
Transport challenges
I have written about the social model of disability before. In essence it acknowledges that it’s the world around me that’s disabling. As well as having to use crutches to get on and off trains (high steps, wide gaps, limited handrails, people in the way, time pressure) I also have to consider - and frankly over-plan -any journey. Spontaneity is difficult. I have to think ‘do I know the station I’m going through? does it have lifts, are the steps crowded, can I hold onto a right-hand side handrail not a left-hand side one?’ I have to consider carefully what I can carry; I need the lightest backpack possible and I can’t carry anything in my hands. I can never buy a coffee and carry it on and off a train, I have to pack a flask that fits in my rucksack. When I get to the train, what happens if the seat reservations aren’t working because there are half the number of planned carriages (a regular on East Midlands Trains) - will I even get a seat? And then of course other people are unpredictable, moving hazards; equally I am a hazard to them. In short, any journey is a continuous risk-assessment from start to finish and that makes it exhausting.
I’m lucky that right now my job allows me to work from home most of the time. When I was recently looking for a new job, there were many where the 2 days per week commute into central London meant I didn’t even apply. So many employers these days are brilliant at reasonable adaptations once you get to work, but they can’t control the journey. And being the only team member who doesn’t turn up onsite can be isolating.
Leg length discrepancy
One of the other disabling factors is having to manage my leg length discrepancy. For five years prior to my hip replacement, I got used to having both an external shoe raise and inner insoles but for the last 19 years I was able to just use inner insoles that could fit into most shoes. I’m now back to having just four pairs of adapted shoes and them all being sensible, robust shoes. First world problem obviously, but still annoying. If I’m travelling with a small rucksack I can’t carry a spare pair for evening vs. daytime. And walking with bare feet is no longer an option with one leg so much shorter than the other.
It’s not all bad news…
There are lots of positives here. I’m pretty fit and healthy and with the right shoes and sticks I can walk. I swim well, I still sing, I manage to garden in small bursts albeit with painkillers, I can work, I have a supportive family and partner who does all the physical work when we go camping so I can still enjoy that experience. And compared to many people with hip dysplasia, I am not in constant, chronic pain and I am so thankful for that.
My knee doesn’t hurt much and it won’t degenerate rapidly like it was without the surgery. I have only had one posture-related migraine in the last year, whereas I was having them once every 2-3 weeks in the year before my last op. (The strain of my shoulders/neck trying to hold me steady can give me a headache which becomes so bad I develop a migraine - especially after singing or walking a long way). I’m not missing those!
And with my straighter right leg and the left shoe lift, I am officially taller (well on one side at least). For the first time in my life, I’m the same height as my sister!! It took me 51 years and 13 surgeries but it’s a win 😊
I have lived my life knowing that I can’t always take walking for granted. In the last year I have had to learn to live my life with a little less mobility. But still live it well.
Jill Pringle was born in Sheffield in 1971 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 to raise money for Steps Charity Worldwide - you can donate here.
“Still on crutches?!” 9½ months post knee-replacement with hip dysplasia
Well, intermittently, the answer is “yes”. I’m still on crutches and yes, it’s annoying me! I find myself at the strange post-surgery stage where I’m more stable than I was before, but less mobile. I meet other people who’ve had a knee replacement after me, or know someone who has, and they’re off crutches and back to full fitness which is a little deflating.
It’s not pain that leaves me still in need of walking aids. It’s 50 years of weakness in my left hip and leg due to hip dysplasia; which of course is what caused my right knee to erode so much in the first place. My surgery has restabilised the knee but hasn’t fixed the root cause. Nor can it be fully fixed. As my physio said to me a few days ago “some muscles on the left side don’t work and never have, so we can’t rely on those like I might with other patients.” It will also take the full year to build up more functional movement.
So where does that leave me right now?
My new knee has less range (bend) but is much more stable (my own knee joints are hyper-mobile so move more than they should and wear more quickly). My orthotics mean I stand much straighter. I’m not in much pain but my muscles start to ache if I stand still for a long time, or walk for too long, and so that strength needs building. I’m weaning off the crutches based on each situation; the types of movement and duration for which it’s required.
- At home I don’t use the crutches at all. The stairs are OK as we have a rail on both sides and as long as I don’t have to hold anything in either hand, so I always have to wear clothes with pockets. If I have a mug of tea I have to place it on the step in front of me and work my way up the stairs 2-3 at a time following the cup. Over the last 6 weeks my physio prescribed an outdoor obstacle course to help me find my ‘centre’ and to move sideways, around or over them (see demo by my cat). So I’m able to walk around the garden with no sticks and do some gentle gardening but without bending or squatting.
- Around the local area I’ve now progressed off crutches and onto walking poles. This has two benefits; they take less weight, so it forces me to use my legs more whilst still allowing a natural rather than lurching gait. And they are also light enough to carry - my goal for the next six weeks is to alternate 1 minute with them, 1 minute off and then build up the time off the poles incrementally.
- To travel into London for my weekly choir rehearsal, I still have to take my crutches. The main reason for this is to get off a train. We still haven’t found a way of getting off a high step down to a platform whilst also traversing a horizontal gap. Next idea is to try stepping off backwards (I’ll let you know how that one goes!). The crutches also help at train stations or other places which for someone like me, is a huge moving obstacle course, every person a trip hazard. The crutches signal to them to avoid me. What I most long for is the chance to buy a coffee at the station and be able to carry it - target #freehandsday!
- I’m now back to working 3 days per week and on set days. I’m very grateful to have a six-month contract that allows me to work from home 99% of the time. Not only does this remove a commute or more trains but also it means I can swim every morning and still be at my desk for 9am (the pool is in walking distance). Sitting is not easy – with one hip 2.5cm higher than the other, a very crooked pelvis, and flat glutes - I lean to one side, balancing either on my hip bones or coccyx. So I try to adjust with my spine and upper body which leads to lots of shoulder and neck pain. The other advantage of WFH is that I can control the environment, desk and chair setup, no boxes, no trip hazards. Never has this been more important. And I don’t work on Mondays which means I have the energy and time to get into London for Choir – singing is my endorphine boost but getting there takes energy!
- The combination of orthotics and external shoe-raise is working well to address my leg length discrepancy. The sad thing is I have to wear something on my feet all the time (see adapted cosy shepherd slippers in the photo) so I can’t walk barefoot without one foot being on pointe! I’m also developing some pain in my left toes so the orthotic needs some adjustment (in progress). I do now have four pairs of shoes adapted so at least I can have some variety!
Don’t get me wrong. In many ways and overall life is good. I’m confident that my surgery will pay off. And I’m not in chronic pain which is not the case for so many people with DDH.
I’m just impatient. I want to progress more quickly. I want to get back out into the hills and do some walking, and that feels like a very distant goal.
Living with hip dysplasia is a ‘one step at a time’ challenge. Most steps forward, some backwards and all steps a little bit wonky! DDH is a lifelong challenge that many people like me face – 1-2 people in a 1000 to be exact. My story is just one of them.
Jill Pringle was born with bilateral hip dysplasia in Sheffield in 1971. She has had several surgeries including open reductions, leg lengthening and hip and knee replacements. She writes this blog to raise awareness of CDH/DDH and undertakes walking challenges to raise money for Steps Charity Worldwide who you can support here.
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.