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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Dressing For the Dentist: Part One

The last week I’ve had 2 dental appointments, and for anyone who has to deal with the medical profession on an ongoing basis, there is often much trauma, anticipation, fear, and “Vulnerability Exhaustion” involved. So I decided to garner a little bit more control and security than usual for this first appointment of the new year, and I dressed for the occasion!

img_4272I took the time to prepare well and I’m so glad I did. Dressing up for doctors or specialists was the last thing on my mind, but dressing for my comfort and safety is a different thing altogether. I made the following list the night before so that I didn’t have to plan it all as I was rushing out the door (I was reminded of what a good idea this was as I found myself with only one sock on). It’s easy to underestimate how frazzled we are in the moment.

1: Dressing for personal space & dignity:

(clothes with windows)

I tend to wear “stretchy” when it comes to anything to do with doctors and tests and so on. But believe it or not, stretchy sleeves don’t always pull up high enough for blood tests and BP readings. I’ve therefore sometimes had to remove my whole shirt for these simple procedures which are often done in places where there are a lot of people around. I felt very exposed and embarrassed, which added to my already rising anxiety and lack of safety.

The same applies to the legs. Jeans rarely ride higher than a few inches, whereas stretchy pants can often pull way up past the knee. Stretchy as well as skinny, however, does not. Exposing my underwear and all the bits that try to jump out of them are not helpful to knee specialists and physios, and leave me with a level of discomfort that I don’t need on top of everything else. I’d really rather not take my whole pants off!

Check Points:

  • I check the stretchiness in advance if I’ll be relying on it for windows.
  • Cardigans are the ultimate in clothes with windows, they can be left wide open to cool down, taken off in a flash, and wrapped around for warmth.
  • Socks with footless tights become windows instead of full tights which need to be removed in full (along with whatever is over them!).
  • While buttons provide great windows, they can also be complicated and slow when changing. They also require a bit of thinking as you can do the wrong ones up without noticing! Press studs and zippers or wraparounds are great alternatives.
  • A button-up shirt can mean exposing only a small part of me, but the same shirt, however, under different tests and circumstances can also pop open and reveal bits I’d rather not show. I want to pick my windows!
  • For the same reason, I don’t want shirts that pop open or ride up (or down), therefore, I’m usually a little more generous with the amount of fabric in my clothing than I might otherwise be.

2: Watch the head!

This is probably the worst area for me and the space in which I have struggled the most! Whether it’s in a cubicle before a test, sitting in my GP’s office, or waiting in a long and public hall in a hospital, there is nothing that makes me feel more bedraggled and out of control than a shirt that needed to come off over my head! My glasses have got stuck, flung off, and bent… my hair has become static and flyaway, ponytails have come out, earrings have become hooked, lipstick can smudge, phones fall out of pockets, I have become disorientated and dizzy, and I have even hurt myself bumping into the wall or a chair I didn’t know was there. The list of things that can go wrong is endless, and while they are usually not earth-shattering, they can go a long way to feeling dreadful when you are already feeling very fragile or weepy.

They don’t help us to feel like we are being taken seriously either. It makes a difference to me when I can look a doctor in the eye as I’m talking and removing my clothing at the same time. Try feeling like you are being taken seriously when talking through an upside-down shirt covering your face! It can be thoroughly dishevelling, and difficult to walk out with the same dignity with which I walked in! … I FEEL more vulnerable and exposed when and after removing clothes over my head than anything else.

Check Points:

  • It sounds crazy, but if the best option for me is something that needs to be taken on and off over my head, then a practice run is always the way to go. Making sure I know the shirt, pick something with a neck that stretches far, and knowing that I can whip it on and off easily and quickly is a game changer.
  • Again, if it has to come over the head, then I always avoid necks with buttons and zips.
  • We will discuss jewellery separately, but if going with the over-the-head option then necklaces and earrings become a massive catch point and need to be left at home.

Next up… dressing for the cold, which underwear to choose, clothes and hospital and anxiety, packing your bags and much more!


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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 🙂