Your Questions 101: My Crutches part A

I’ve decided to start a series (even though I’m behind in others, sorry about that, but I’ll catch up eventually) on the most questions people ask me. This way, as more and more people ask the same ones, I can send them this way to give them the most comprehensive answers possible… with pictures!! So feel free to take this opportunity to ask as many as you like and I’ll answer them the best I can 🙂

Q: Why do you say you can’t walk without your crutches, yet now & then I see you without them?

This (or a version of this) is one of the questions I get asked most. In fact, often, it isn’t a question, it’s more a You don’t have your crutch!! I’m so glad you’re better!!! And when I try to explain that I’m not, most people don’t listen to the answer, they just tell me I must be better. So here is the answer….

With EDS, every single collagen cell in my body (over 70% of the tissue in all our bodies) is faulty. Each and every one of those cells has a tiny piece missing. It’s genetic, it’s like missing a leg, an arm, or anything else. Therefore there is no cure.

Tendons (the usually strong fibrous “strings” at either end of every single muscle in our bodies, that connect each on one end to the bones and the other end to the muscle) and ligaments (made from the same stuff but are much shorter and wider, less stretchy but much tighter and connect each and every bone to the next bone in every single joint of our bodies) are made out of collagen. Therefore, mine are not as strong as yours.

This means that:

  • My body uses up a LOT more energy than most people to keep it stable.
  • I still wobble a lot, even if I may not look like I do.
  • I fall over and bump into things a lot.
  • And when I do, my body receives an injury that another person would need a much greater trauma to produce.

Here are just a few of the many injuries that you may have known about in a time that you have known me (all pre-diagnosis):

  • I slipped and fell on my right wrist in Fiji. No bones were broken, yet I spent 11 months in a cast, had surgery on both sides of my wrist, wore a brace for 5 years, and still suffer from deep pain. The ligaments and tendons were damaged in a way that is not consistent with a simple fall, and have never healed fully, even though that was 17 years ago.
  • My right hip never recovered from three pregnancies and over time and without knowing what was happening, it is my most severe tendon/ligament injury. It has been excruciatingly painful for 29 years, and I did not realize that I was compensating for it by carrying the vast majority of my weight on my left hip/leg.
  • I tripped on a suitcase I’d left on the floor, on my way to the bathroom just over 3 years ago now. I landed on my left foot which twisted it. I couldn’t weight bear at all for months, and it took 5 months and an amazing specialist to eventually diagnose the Lisfranc Injury. The dislocation is extremely subtle, not unlike the Xray photo below, but it is none-the-less out of alignment because the Lisfranc ligaments have been damaged so badly and cannot repair themselves due to the weakness of my tissues. Lisfranc injuries are rare, with only about a 50% full recovery rate for healthy people. Those which don’t recover, require surgery to fuse the bones together, and even then, many of those patients are left with lifelong pain. Because of the fragility of EDS tissues, this surgery is categorically not an option for me. Therefore, my Lisfranc Injury (Frank as we call him) is permanent and will never heal.

The pain of tendon or ligament damage is excruciating. What makes any damaged tendons or ligaments in the leg/foot even worse is that weight bearing of any kind compounds them. For hips, even lying down, rolling over etc, contribute as well.

Basically, I can’t fully weight bear with either leg (hip on one, Frank on the other). Standing is VERY bad for me, walking less of an issue because I’m moving and not putting weight in any one spot constantly. But I HAVE to walk a little every day to keep my muscles strong and compensating. When Frank happened, and I was in a cast for 3 months, I couldn’t walk at all, the muscles wasted and my knees, feet, everything else, would dislocate just rolling over in bed. Don’t get me wrong, this still happens, but at least when I am strong they happen way less.

Our hands are not designed to take the weight of our bodies, and neither are our shoulders. So when they put me on crutches, the first things that went (and by “went” I mean excruciating pain as the tendons and ligaments stretched and broke) were my hands and wrists. So I cannot use “normal” crutches which are SOOO bad for everyone anyway.

Therefore I walk with a SmartCrutch. Invented, designed, and made here in South Africa about 7 years ago, which are my lifeline. They use my elbows to carry my weight. They provide a handful of lifesaving jobs for me:

  • They transfer my weight meaning that when I walk, Frank, my hip, and the crutch, each carry about a third of the load. That’s enough to make a HUGE difference, and that difference is the gap between being able to walk and not!
  • They keep me stable. I wobble less with them which protects ALL my joints, and I have gone from falling multiple times a week to having not fallen at all with my crutch. So they constantly save me from major injury.
  • They are a visible sign that I’m struggling. We don’t notice how much we jostle in life and bump and knock other people. It’s fine for most people, but for those of us who are a little more fragile, it is those bumps and knocks that hurt me. When I have my crutch people give me a little bit of extra space, possibly without even noticing. When I need to sit, it makes sense to strangers if I have a crutch in my hand. If I don’t have it, people think (and tell me) I’m lazy.

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But can I walk without the crutch? Sure.  But only on absolutely flat ground in the safety of my own home, the homes of my children and friends, … all places where I know, am not at risk of being bumped or pushed, and only for 20 minutes or so, and in fact, these bursts of walking are what keep me strong. They are what keep me moving. They are a necessity. But if I walk for too long, with or without my crutch, then I suffer for it terribly later.

And, walking is not the same as standing. I do stand, in fact, I often stand, and I ALWAYS pay for it later. I am also very bad, and when people tell me to sit, I often brush it off, which I shouldn’t do.

Where is the damage?

THIS is the best article on Lisfranc Injuries that I have been able to find, and it includes an Xray very similar to mine. You can barely tell the difference in the gaps on the left and right foot, but when our bones aren’t aligned correctly they pull hard on all the ligaments and tendons and cause other injuries.

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I’ve no idea of who Julio Jones is but THIS article has a good picture of the same Ligament that is damaged in my foot (though this is a right foot, mine is my left):

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Where does it hurt?

In THIS article on Lisfranc Sprains (another word for a mild Lisfranc Injury, but the position of the pain is the same) has a good diagram of where the pain is and is a good article on some of the issues:

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For the first time since I got my Smart Crutches, I am without them. In the rush to get out the door they were left behind. And suddenly I am extremely vulnerable. A walk 3 blocks up the road to the restaurant last night (leaning heavily on my husband’s arm for support) was not the same and I was in agony by the time we got there. Other outings are now not even an option. I often push myself too hard and too far, and I pay for it, but now I can’t do some of the very basic things I am able to.

Thankfully my crutch is on its way thanks to a number of people, but it has been a MASSIVE reminder to me of how much I rely on it every day for what other people see as very basic needs. It has also sparked a whole lot of questions which is great, and I hope this has answered all of them. If not, just ask!


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The Crucial Crutch!

img_2713As many of you know, I travel a lot (with work) and spend most of it in bed writing. It’s a blessed and interesting life which I am deeply thankful for despite the pain. I learn soooo much walking this strange middle ground behind doors with fascinating insights into unusual things. The back doors of planes when there is no ramp to roll the wheelchair up, hotel rooms when everyone else is off at their meetings, strangers who help or stare at me, or whatever.

This morning is day 6 of this trip and I realised by day 4 that most of the guests have eaten breakfast before I arrive in the restaurant at 9am, so I have it pretty much to myself. It is also only a few doors down from my hotel room and I meet almost no one on the way there or back.

I never go anywhere without my crutch but at home where there are wide doorways, no unnecessary furniture, almost no other people and I know my way around perfectly, I don’t need my crutch. So on days like today, it is tempting to go to breakfast without it. I knew there would be no one to bump me, plenty of room, and such a short walk.  It feels soooo good to spend that short walk, all of 2 minutes, looking like a “normal” person. It feels like a great gift! So I periodically I give in to this temptation to leave the crutch behind just this once.

Zebra Crutch!But on the whole, human beings want the best for each other and wish strangers well. So as I arrived at breakfast the waiters who I had spent the last 4 days getting to know, chatting to them like the real people they are, and trying to be the best customer I can be, were all THRILLED that my leg was suddenly better! They had never asked what was wrong with me, but we all make assumptions and seeing me with a crutch meant for them that I must have a sore leg right? So today when I hobbled in without it, one by one they all came over to say how thrilled they were that it is better!

Um…. no. In a few days time I will go home and likely never see them again, so it just wasn’t worth it to explain the whole thing, especially so many times. So I just thanked them for their kindness and didn’t pop their bubble that I am healed. YAY! I shared their happiness for me. But I was reminded, yet again, why I need to be consistent and never, ever, ever go without the crutch.

In a similar story a few months ago, my husband took my crutch out the car because he was collecting work people from the airport. He forgot to put it back in and the next day I drove to pick him up from the office so that we could join the overseas guests at a restaurant for dinner. We only realised the mistake when we arrived and there was no crutch on the back seat. We parked only a few spaces from the restaurant door and as he was with me I just latched onto his arm tightly.

We had the same response from all the colleagues as I did a few days ago here at the hotel; all were thrilled that I was suddenly healed. We then spent the next 10 minutes explaining the situation.

Screen Shot 2017-05-25 at 1.22.00 PMSo you see, it isn’t about whether they are right or wrong or the false hope, or the explanations. People are so used to my crutches and mobility issues and my wheelchair now, that they just see it all as part of me. Some have leaned in and been great, others have run a mile, but wherever they are in the whole scheme of things, we have found our new normal with each of them. And when I arrive at breakfast, or dinner, or at the airport or the office, or anywhere else, they talk to me the same way they talk to “normal” people. They ask about my week or my trip and share their own news. My mobility aids are no more a part of the discussion than a coat or a scarf or a handbag would be. But when I go without it people get excited and we land up talking about my health and my crutches and whether or not I am cured and it opens the door to a whole conversation that I am sick of talking about.

It’s not their fault and they aren’t rude. But the reality is, I do wish that I could leave it at home, or in the room or in the car sometimes, but I can’t…

Walks without crutches are short as anyway, but they are now only for home, family and a very small group of friends that I see a lot of … sadly 😦


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SmartCRUTCH notes!


Last night I did a Facebook Live stream all about my crutches. It didn’t go as well as planned as I had a bunch of photos that I wanted to use in my descriptions. It turns out you can’t put photos in the comments of a video (live or otherwise) which was not only so annoying but it meant that I got tongue tied and stressed 😦

Anyway, so I said I’d add the photos here for you all to see! So if you missed the video it is HERE. And if you watched it but need the pics, here they are:


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Me with my gutter crutches! (note that my left wrist is bandaged! Could never do that with the other two kinds of crutches!)

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How much better are the SmartCRUTCHES!!!

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Some direct comparisons (note the velcro and the bolts that kept coming undone!):

Even the base is better and more stable (the SmartCRUTCH is on the left):

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Seriously, look at that wear and tear (there is none after 2 years, being chucked around and smashed through customs and baggage handlers through HongKong, Los Angeles, Cape Town x6, Perth (Australia) x 5, Dubai x6, Rome, Tuscany, London x2, Johannesburg too many to count, and that doesn’t include everyday use, being dropped and stomped on hundreds of times, chucked in the back of the car even more times… and so the list goes on!

And they come in 3 sizes, here are the middle and baby sizes:

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And finally, the gorgeous ZEBRA crutch for EDS!! WOOHOO!

Check out SmartCrutch and The Ehlers-Danlos Society for details and don’t forget to tell them I sent you!! 🙂

Zebra Crutch!

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My Smart Crutch Crush!

Crutch Options

As many of you will know, I ditched confentional crutches for good reason, use a SmartCrutch wherever I go, and it has been life changing for me! I am not paid by the inventors or producers or any of the companies who sell these crutches, to use, talk about, or advertise them in any way, shape or form. I talk about them a lot because I believe in them, and they are in most of my photos because they go everywhere with me. They have become somewhat of an extra limb for me. They protect me, and they give me the ability to walk a little most days.

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I am also a little biased, and proud, that they are locally invented and produced, right here in South Africa!

I decorate them, I travel with them, I walk with elephants with them, and they have become a part of me!

So it is my honour and great pleasure to announce that I am now partnering with them to help get word out there, to show them off, to recommend them, and to help anyone with questions on how to get them, how to use them, how to decorate them and how to make the most of them.

The best way to do that is to ask me directly, so please join me this Thursday (May 25th) at 8pm Johannesburg time (7pm London time, etc…

I will be unveiling the new Zebra SmartCrutch in honour of May being EDS Awareness Month, I will be showing it off, and answering all your questions! SmartCrutch USA  will be joining us for the Facebook Live Stream, as will the inventors and producers of these amazing products!

So put this in your diaries, or even better, respond to THIS event on Facebook, and follow my Page so that you will find us easily. We look forward to seeing you there!


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FAQ: Tell Me About Your Strange Crutches

OK, so my Twitter followers have been asking a ton of questions about my crutches after seeing pictures of one of them yesterday and so I thought it would be easiest to write a post that they can all read. There is a lot of info here so I will try and keep it as brief as possible:

1: Because my EDS affects my whole body, my wrists and hands are way too fragile to use crutches that require putting my weight on my hands. So the most “modern” kind of crutch like the pair on the right in this pic, is totally useless for me. When I first went onto crutches these are what they give me and hands were unusable and the pain excruciating within a week of using them. (The crutches on the left are used for temporary use only but they run a risk of nerve damage using underarms to support the weight). So I can’t use either of these.


2: The only other option was to use a gutter crutch which use your stronger elbows to carry the weight rather than underarms (which can pinch nerves) or smaller boned hands like modern crutches do. This is the hideous pair of gutter crutches that looked like something out of a 1930s mental asylum, with turquoise “medical vinyl” and velcro that stuck to my clothes and pulled and damaged them. They were all metal and top heavy and clunky, I had to stop every 20 steps or so to tighten the metal screws otherwise they fell apart. They were also very noisy (lots of metal parts). They saved the day but as soon as I realised that I would need crutches permanently, I HAD to find a better option!



3: So I googled gutter crutches and lo and behold some guy with a brain had only 2 years before invented an alternative, which was soooo obvious. I live in Johannesburg (South Africa) and this is where they were invented and produced, and so I had a brand new pair within 24hrs of looking them up (which were covered by my medical insurance thankfully). The lady selling them to me wanted me to be brave and get the purple pair that I loved, but seeing as I needed to use them permanently I went with the “safe option” of black. But she was so moved that this was a life long thing for me, that she kindly and lovingly donated the purple pair to me as well. They have been a life saver, and I am sure you can see from the pic that they are SOOOO much better than the clunky revolting metal ones.


The difference was life changing, for all these reasons:

  • They are WAY lighter
  • The fixtures are solid … meaning that I never have to tighten them. Once set they are set forever (but can still be changed if need be).
  • There is no velcro yay! (my clothes are saved!)
  • They are more streamlined
  • The arm surrounds mean that I can use my hands while using them which is hard with normal crutches.

Everything about them was better, and they came in a huge range of colours too as you can see. My only negatives that I have are that I am exactly average in size and yet the whole moulded plastic top piece is way too big for me. I have it on the smallest setting (they are adjustable) but still too big. A smaller mould for smaller women and children would make a HUGE difference.


Short term they are fabulous, and functionally, they are brilliant as permanent mobility aids for me. However, as you can no doubt see, the SmartCrutch was developed by a guy who is a motor cross rider. Fabulous if you are that kind of guy, but not when you are a woman, not when you are never going to heal ….and when looking “sporty” is way not what works for you.

But also with anything long term, these crutches take one hell of a beating. They get dropped, smashed into, go in and out of cars and planes, and get scraped on doors and furniture. A year after getting them and they started to look pretty beaten up. They are extremely hard wearing and are in perfect condition still, but as they are covered in stickers to make all those pretty motor bike designs (not!), those stickers have become scratched and damaged, corners are starting to peel, and if it wasn’t for those ugly stickers, they would still be fine. So I tried to pull the stickers off, but that glue is tough and so there is goop left over all the surfaces. But that is ok for me, I just glued fabric over instead, and so this is what I came up with:

My Orthopod got me down to a single crutch which is all I need when not in my wheelchair, and so I have been left with 4 single crutches, 2 purple and 2 black. I travel an awful lot and I don’t use them inside the home much, so of the 4 crutches, 1 is for travel and taken apart, one lives in my car, another in my husband’s car, and the fourth is for evening wear. It sounds extravagant and would never buy 4, but my life is SO much easier having one everywhere that I need one. As I needed a pair and was donated the second pair and these are an extension of my body now, I am extremely thankful for them all ….I NEED to use one every day; forever. The purple one that is multicoloured is my every day one. I use it all the time and it matches my personality and everything about me. The plain black one is for evenings. I don’t get out a lot but when I do it is for company events with my husband. They are wonderful at caring for me and providing everything I need, and he teases me that I am the queen in the corner, as I always sit and people need to come to me, but anyway, the funky somewhat bohemian day crutch is fabulous for running around, but the black one is very subtle and matches whatever I am wearing for more formal things.

I am half way through turning the second purple crutch into a red one with all kinds of red fabrics, and the second black one is going denim, so I will post those pics when they are finished 🙂

FAQ: What is that Crutch Thing…


My crutch is shaped like it is because my hands are not able to take any weight. My elbow and shoulder can bear the weight with a “gutter crutch” which is what this basically is. But it is a more modern, lightweight, stronger version of the old metal and velcro model which was ruining my clothes and needed retightening every dozen steps or so.

I need a crutch to shift some of the weight off my foot and hip. My foot has a permanent Lisfranc Injury which we call Frank, and my other hip keeps dislocating ever since my pregnancies. So the main function of my “third leg” is to shift that balance and take the weight off Frank and my hip.

The second function is that it keeps me steady and balanced (yes those are two different things). To look at me you would think that I take up more “room” with 3 legs, but I actually take up less. Because my body has loose ligaments throughout it, I flop around a lot (yes everyone used to laugh at me about how I ran… in the days when I could run), and I walk into walls and door frames. The crutch is steady and solid and so it keeps me steady and I no longer bump into things and hurt myself (often badly).

For the same reason I used to fall over a lot, and so the crutch balances me and stops me falling over.

So that is why it looks funny and what it does.

But my crutch is waaaay more than that for me. It is my badge … when you are robust and “normal” you can absorb knocks and bumps and you would be surprised how many people bump into each other in day to day life. My crutch is a little like a learning licence sign or a baby on board sign on a car; it tells people that one way or another I am fragile and sore, and so they tend to be just that little bit more careful. That marginal care is a world of difference from this end!


Twisting and turning pop my joints more often than anything else put together. If you draw a straight line on the ground between one city block and the next (and no one else can see it) and try and walk straight, you will quickly realise that it is impossible. People duck and dive and move and push and charge and wander and all kinds of things. We don’t realise because our bodies were designed to do this, but we make subtle changes to our gait and direction constantly.

I can’t do those things without getting hurt, but I can’t tell strangers that constantly and often if I stand my ground there is a very rude stand off. Rhino people charge through life and others are supposed to get out of the way. Those who wander are simply oblivious and if we don’t move they walk right into us. My crutch gives me “right of way” (in most cases) and even alerts some wanderers to my presence. So even on a good day, and a very short walk, I still take my stick, because I need it for that straight line and to protect me from “the man and woman on the street”.

All it takes!!

All it takes to badly hurt a ligament is a simple movement that isn’t exactly in line…

All it takes to crush a healing journey is a specialist’s ego…

All it takes to change a course of chronic illness for the better or the worse, is a diagnosis, a word, or two simple words…

All it takes to make a difference is a specialist who cares, who hears us …

If I kept going on this list for only my own life we would literally be here forever. It is the little things that change each direction. The good things and the bad! It was a simple tripping over a suitcase that did my LFI, it was a simple slip on a drop of water on tiles that ruined my right wrist fifteen years ago. For me it is the little things, and the culmination of those little things is starting to become big things. Without EDS none of these would make a difference to everyone else, but for me they are little but I have never fully healed from any of them 😦

Last Thursday I went to see the plastic surgeon who did my last surgery and he HEARD me! It was the little things that he asked and said that made all the world of difference! Yesterday I got a call from the hospital asking me a make a time to go in for an abdominal CT scan. I HATE having stuff injected into me, and ESPECIALLY radioactive stuff, and so having a CT rather than an MRI fills me with dread, and as I said in my last post, I am worried that the hernia won’t show itself in all it’s glory if I have a CT or MRI lying down seeing as it didn’t show on any of the Ultrasounds when I was lying down, only when I was standing up. So when they phoned me and said that I need the CT, I was concerned to say the least. I don’t think that people who hardly ever have invasive tests or many doctor or hospital visits can ever fully appreciate what it is like when you have suffered decades of tests, waiting rooms, been poked, prodded, made ill, suffered side effects, anxiety, you name it. So if this is going to get the same result as the other tests lying down then this is NOT something that I want to put myself through.

So I emailed the surgeon and asked him what the thinking is. On Thursday had told me that he would review my pics from the ultrasound and bring me in for further imagining, but I had forgotten to ask him about the standing up versus lying down thing. So I sent him a quick email and got a reply within fifteen minutes:

“Hi Jen,
I had a long discussion with the radiologists as regards the merit of CT versus MRI versus US and they felt it best to start with the CT. If they can’t find anything get them to call me whilst you are still down there and we will work something out”

All it took was a reply and the assurances and I feel SOOO much better about having it tomorrow!!

I thought I would share his email in it’s entirety because it’s the little things that make this a really big deal for me! Replying as soon as he got my email (which could have been longer had he been in surgery not at his desk, however seeing as he WAS at his desk, he COULD still have left it till later or got his secretary to answer whenever etc. So the response was fast! The answer was also the complete opposite of dismissive! I feel that he HEARD my concerns and instead of just brushing them aside, he addressed them. Not much detail but enough to show me that this was well thought out by a number of people. And thirdly the fact that he is happy to be in the wings and be called in if they can’t see the hernia well!! This means that I won’t have to wait days or weeks to hear what they say, or in the event of them not being able to find it (and/or what is going on with the ovary, uterus etc) then they will address planB there and then!

All it takes is a little effort and he certainly did that!

So tomorrow morning it is CT scan and yes my husband is coming with me and moved work around again for me!!!! YAAAAYYYYY!!!!!! And I HATE the idea of the scan, but I am feeling confident from the little things, that this is the right thing to do and that things will start moving forward again !

And again… all it takes is something little and the changes are massive: Yesterday I thought “oh I can reach up and turn off the ceiling fan myself!” … but I was wrong! …it was the tiniest thing … just reaching up on my tippy toes and pulling the cord! But my LFI screamed back at me and my Achilles tendon audibly went snap crackle pop and cried out in pain!! UGH!!! Just like that, in a second, from the smallest movement…

You would think that I would know better by now wouldn’t you! … except that while it is the little things that have struck me down my whole adult life, I have also been able to do some really big things, so I am not sure that my brain will ever remember everything that I should and shouldn’t do!

It is the little things of chronic illness that nail you whether you want them to or not, it’s the little things that get you down, and it’s the little things that I still can do that make a HUGE positive difference! I am never without a crutch or wheel chair out of the home, mostly for protective reasons but also because I simply cannot walk very far any more. But one of the little things that I am SOOOO grateful for, is that for the most part, at home I am pretty mobile. I never walk far and if I need to stop I can. The distances within the house are small, and I always have lots that I can do either sitting down or sitting up in bed. So for much of the time that I am home I get to feel quite “normal”.

But now that my foot is gone again, it is back to having a crutch even at home and that is frustrating!!! Now I just have to make sure that I REST it and don’t do anything silly!!