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 stareย 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. ย It feels soooo good to spend that short walk, all of 2 minutes, looking like a “normal” person. It feels like a great gift!ย 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 daysย 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 ๐Ÿ˜ฆ

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To book a talk with me and discuss my schedule you can contact me on JPeaSmith@KingsRoadChronicles.com

Where you can find and follow Jennifer:ย 

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SmartCRUTCH notes!

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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 ๐Ÿ˜ฆ

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!! ๐Ÿ™‚

Zebra Crutch!

To book a talk with me and discuss my schedule you can contact me on JPeaSmith@KingsRoadChronicles.com

Where you can find and follow Jennifer:ย 

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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 8pmย Johannesburg time (7pmย Londonย 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 USAย  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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To book a talk with me and discuss my schedule you can contact me on JPeaSmith@KingsRoadChronicles.com

Where you can find and follow Jennifer:ย 

Blogย |ย The Mightyย |ย Facebookย |ย Twitterย |ย Pinterestย |ย Goodreadsย |ย Amazon
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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.

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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 โ€œmedical vinylโ€ 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!

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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.

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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.

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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 ๐Ÿ™‚
 

FAQ: What is that Crutch Thing…

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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 Iย 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 isย 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 ๐Ÿ˜ฆ

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 canโ€™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!!

Orthopod Outcome!

Home at last, 9.40pm in the evening, and I’m thoroughly drained physically and emotionally and sooo thankful to sweet hubby who after all these years of me doing this on my own has twigged that it makes a HUGE difference to have him there and so turned up at the hospital ๐Ÿ™‚ ๐Ÿ™‚ ๐Ÿ™‚ …. but i have had soooo many messages and phone calls and so on about how today went (thank you thank you thank you!!!) that I want to write it down before I crash into bed (all drugged up!)

I woke up this morning and realised that all the major deteriorations in my health the last 6 months have actually happened on the months and weeks of most rest! Last week I spent an entire week resting because my shoulders were so sore from the Friday before when my crutches did the splits at the Pharmacy on their slippery tiles!! … and because we were away and it rained all week and NOTHING was wheelchair access and of course I didn’t have my wheelchair yet (it comes tomorrow now!!), I thought that I was doing myself a favour by resting but it has REALLY set me back! So I decided that if I have this surgery then the months of full bed rest will be a disaster for me! But I was still happy to go for the appointment and see what he had to say and was praying hard for a REALLY clear answer one way or the other from him, and if that answer was to be to have the surgery then I would be convinced…

Well the appointment was at 4pm, and I got there at 3.30 and didn’t get seen till 6.30 pm!! But I’ve seen him before and he is worth the wait… he is not rushed or stressed at all (from what I could tell) and he takes so long because he gives each patient all the time and care that they need! Rare and sooooo good! So when it was my turn I was determined to not feel pressure from those still in the waiting room and rush for their sake, but I soon forgot about them as we got into things… It was a long session and sooo thorough and I am beyond ready for bed and we didn’t leave till 7pm so didn’t eat till 8, so here is the brief version (paraphrasing!):

1: He looked at the latest MRI an confirmed LFI…

2: He does know what EDS is (woohoo!!!) so he said now it makes total sense why I have such a serious injury (LFI) from simply tripping over!

3: He said now it makes total sense that 10 months later it is not even a little bit healed.

4: He did not even try to push surgery! He said no way! He was so clear on it, so I felt that we didn’t even have to debate it and it made it SOOOO much easier that I had already decided against it this morning but for completely different reasons, so it was a TOTAL answer to prayer in that it was VERY clear in one direction, and with this mornings musing, I felt even more totally comfortable with going this way ๐Ÿ™‚ The last time I saw him was pre EDS diagnosis, and he was totally pro surgery but now just being EDS and him saying no way to surgery, was soooo comforting, and reassuring and what a pleasure to have a doctor that knows so much!!

5: This then leaves what????…. well technically it leaves me with an unhealed LFI that can’t be fixed!!! That’s the bad news!! … but he did not just send me home at all!! He said, what now? And we sat in that for a bit, and he wracked his brains and looked at my crutches and I was able to share that I need to move to keep my muscles strong and that I do my physio in the pool most days … so he said he is going to do some research and ask some experts he knows, and see what he can come up with ๐Ÿ™‚ ๐Ÿ™‚ ๐Ÿ™‚ … in the mean time he wants me to use Voltarin to try and reduce the pain of the foot and then if that works for me, then after a while to walk on it more. He doesn’t like my crutches and the way they may damage my shoulders but more importantly that they are not good for balance and I think he is right. So he wants me to use my foot more and be gentle with it … I think he liked more wheelchair and walking and not so much of the middle ground of the crutches and my gut tells me he is right. I am nervous of the crutches damage and also standing on my feet puts enormous strain on my right hip and left LFI, so the wheelchair for long distances and when there is lots of standing around, but he wants to me to work on getting off at least one of the crutches over the next few months so we will see how that goes!

6: He knows that cortisone injections are a no no for people with EDS, but he wants to talk to some specialists and get some thoughts on that and some ways to get around that and see if there are some other options.

7: He said that the LFI has sadly caused trauma induced arthritis in the bones around the injury as well, so that adds to the problem. ๐Ÿ˜ฆ

But he did not brush me off at all, and in fact I got the feeling that he is going to be mulling over this a lot! My FABULOUS GP who referred me said that he is not only VERY good but that he takes on a challenge so I feel that I could not be in better hands! If there is a way for me to get a better working foot then I feel confident that he will find it! No promises, but I get the strong impression that between them, there won’t be a stone unturned!! My GP,ย who by the way is going to be getting flowers from me tomorrow because she didn’t even know what an LFI is (as is the case for most doctors), and yet she pushed the issue even after the hospital said it isn’t an LFI but she stuck to her guns and sent me back to the Orthopod anyway and I now feel that it was the right thing to do! I would have always wondered whether I should have had the surgery, or if there was a way to fix it, and yet now I feel that I am getting the best chance I can possibly get!

I am actually in awe, after all the horror stories one hears and even more the horror stories that I have personally experienced, of not being heard, being brushed aside, the bottom line is that my GP has TRUSTED me and is going the extra mile and is making this happen for me!!! … and has sent me to a specialist with the same attitude! ….

Don’t get me wrong, nothing is about to change and I find that a heavy burden and frustrating… but I am sooo thankful that I am not going to worry and wonder about whether or not to have the surgery!

So the good news is that we have a DEFINITE answer to the surgery question, but it also takes away my most obvious healing tool, and what I would be having in a flash if I didn’t have EDS (but then again I wouldn’t have an LFI if it wasn’t for my EDS) ๐Ÿ˜ฆ ย …. and so I am going to let that go …. and try hard not to get bitter about it … (not saying I won’t get frustrated and wallow a little!!!) …. but it does mean that this ain’t going to be getting better any time soon … but it doesn’t mean that we won’t do our best to try right!!!