What does EDS FEEL Like?

Sometimes things are just easier said than written. I’m so uncomfortable in front of a camera but I am getting used to it with Facebook Live because I get to say things that would take forever to write (or read). As part of EDS awareness month, on Monday I did a video on the new criteria for EDS and why they are still a good thing for me, how they empower me, even though I technically now “fail” the test.

Today I got to speak about what EDS feels like. This was particularly meaningful for me because I could bring my actual voice into the whole thing and people could hear me as I speak instead of just in their own version of my voice in their heads. But I also talk with my hands a lot and so I got to explain things like the ways in which our bodies move and why that hurts, in a way that words on a page could never do… using my fists and my arms.

I’m not sure I’m getting any better at it yet but I am learning to feel more at home now that I have stopped trying to do all the things that people say you “should” do on Facebook Live streams (like introduce yourself and brag about who you are and what you do etc). I pretty much just get into it and I am enjoying that.

So HERE are this week’s episodes and what EDS feels like. Please watch and share for EDS awareness month!

EDS Facebook Live Front RoE

PS: If you want to win a signed copy of my book “The Lion and the Peacock”, and a pair of my Zebra earrings, then watch the video or sign on for details in this month’s “no spam” newsletter by signing on HERE 🙂

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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: 

@JPeaSmith
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Unpredictability!

This morning my back went. Anyone with Eeds know what it means when something goes. It’s not so much about falling or banging into things, tho those are major issues too. It is about the smallest things sometimes, and the tendons twist and twang and tear and it is gut wrenchingly painful. I have passed out from the pain in the past.
Today was supposed to be my art day. This is a crucial part in my normalcy and something that I am forced to do less and less of. But this morning my back went. It doesn’t help that a misplaced hug a fortnight ago did my left arm in either, so I can’t hang on so well, or even roll over without help.

So in the blink of an eye I have gone from relative independence and a day out planned, driving myself, to needing assistance for everything from rolling over to sitting on the loo.

Thankfully my husband is not traveling with work and he was able to drop everything and come home. But it’s a huge scare and reminder of the unpredictability of our lives.

I am writing this one finger at a time, on my phone, feeling a mixture of thankfulness for this technology and frustration that it is so slow…

At least a have a bunch of books that I need to catch up on!! 

Vulnerability Exhaustion

img_8724This last week has been a hard one. I haven’t broken any of the rules; I have managed my rest, medication, self care, calendar and I have even been very good at asking for help when needed. In many ways, this past week has been the poster child of what a good chronic illness week should look like. …..Except for one thing: I have been plagued with an unusually high level of lethargy, brain fog and general (both physical an emotional) fragility. My body is far from it’s best despite the care, and my soul feels more than a little battered and bruised.

But worse than all of that is that I have been struggling to write, struggled to be with people without being completely wiped out, struggling with motivation during the day and sleeping like a log at night (which is unusual for me). For much of the past few days I have felt somewhat unsafe on all kinds of levels, and basically I just want to curl up in a ball and sleep for a week. To hide under a rock and never come out…

It isn’t depression exactly. I know what that feels like and how it tries to creep into my life and why. This is close to that but somehow a little different and I couldn’t quite put my finger on it.

But then today as I look back I realize a few things. The new specialist appointment this week was a new one. It required quite a long drive to a town that I have never been to before. That meant a lot more pre planning and leaving much earlier than I would need to if I knew where I was going. But that is OK, I planned for all of that in the schedule and my self care plan. (“pat myself on the back here”).

A new doctor also meant a much longer consultation, filling in loads of forms, answering nearly an hour of vital and valuable questions. But that too is OK, because I planned for this as well. I had my file, my list of medications, my medical history, everything that would be needed so that it was easier on them, and easier on me. (“well done Jenn!”)

Then it involved a physical examination as well. This was the “least bad” one that I have ever had. She could not have been more kind, more gentle, more helpful or more respectful. It was also both thorough and quick, she didn’t waste time checking anything that she wasn’t specifically looking for. I came home form this appointment feeling more positive than I have for a long time. It was a good one.

So why do I feel like this? Why do I want to hide from the world and why do small things like writing exhaust me? Only last week I wrote nearly fifty thousand words for my book and it empowered and energized me, but this week I felt exhausted by the end of the second paragraph here. I feel thoroughly depleted on so many levels.

So what is different? What is the new ingredient this week? What has wiped out all my emotional and physical resources? I realized this morning that I am suffering from what I call vulnerability exhaustion. Many people think of medical forms as purely factual and inanimate. But they aren’t at all. Every tick, every answer, every label, every diagnosis, …is a story, a journey. Each one was a failure, a triumph, a win, a loss, a fight or a battle.

Each and every small tick on the paper could represent a myriad of tests, a fortune that I didn’t have, ….weeks, months or often years of agony, denial, fear, outrage or even a journey to acceptance. Each single tick could include a number of life threatening experiences that we could easily have lost.

Over the years my body has been exposed, touched, poked, prodded, tested, analyzed, traumatized and worse… by hundreds and hundreds of individuals, most of whom would not even remember my name, ..or worse, never even knew it in the first place. And amazingly, each new doctor or specialist has the power to override every tick, to belittle every story, to brush aside every diagnosis, and with the strike of a pen to turn everything on it’s head. Which would be great if that was a good thing … but it rarely is.

It takes a tremendous amount of vulnerability to open up my body and soul, to expose myself to a complete stranger, to invite them in, to ask for their opinion, to let them have a say …yet again. For the potential gain of perhaps the smallest amount of life saving or life changing help, I need to take the risk, to give them my all, to expose the deepest, most painful parts of me, to condense them to a few paper forms and a handful of sentences, is mindblowingly scary.

I had never really thought that through before but this week I guess it was all amplified by a number of other vulnerable experiences like a particularly eye opening Psychologist session in the week and a couple of quite intense conversations with people who I don’t really know very well.

Everything about the week was carefully planned, but I think in the future I need to allow more for the effect of vulnerability exhaustion in all kinds of obvious situations.

Flooded! … the Brilliant Book about Concussion.

screen-shot-2016-10-10-at-10-46-30-amOne of things about being undiagnosed for a very very very long time (thirty years in my case) is that not only do we have no idea what is happening to us, but we also don’t know how to prevent worse things from happening either.

Having had undiagnosed EDS my whole life, periodically I or one of my affected children would very suddenly lose consciousness. The huge story and explanation behind it all is for another day, but suffice to say that two of us especially have had this happen to us on more occasions than we can count.

Yes, it is a little like fainting … on steroids. And regardless of how long each of us was “out” for, one of the massive side effects that was rarely diagnosed or dealt with well, was the effects from what happened on the way down; …. our heads would smash full pelt into a desk, a piece of furniture, or often, onto a concrete tiled floor, resulting in a concussion. Sometimes bad, others “not so bad”, we would be rushed to hospital, there would be huge drama and worry, and anyone attending the scene would find little to no pulse, and everyone (including medical staff) would be in a massive panic.

A drip, sometimes a night in hospital, all kinds of brain scans looking for epilepsy, and of course the major tests all came back as “normal”, so each time the ER doctors would breath a sigh of relief, his or her job was done and we would be sent home being told to be thankful that we are totally fine. But we wouldn’t be fine. We would be slow, and foggy, and sore and frightened. When it was me I had small children to care for and I simply had to “suck it up”. When it was the children I could see, feel and understand what they were going through and so I would keep them home for a week or too and let their brains recover.

Slowly the medical world is waking up about concussion, and at last it appears to be widely recognised that concussion even on a small scale, is a level of brain injury. I want to take nothing from everything that is massively worse about all kinds of other brain injuries, but I need and want to highlight that that hockey stick to the head, that head smash into a piece of furniture when you go down either from fainting or anything else and that body collision on the playing field, are major impacts on one of our most precious organs; our brains.

I am passionate about this and am thankful for my own teaching and background and my gut to care for my own and my children’s brains when we took a beating, but it is not second nature to many parents, teachers, coaches and team mates. We need to get word out there to teach people to look after their brains and we need to be educated on concussion.

So when a few months ago I stumbled on this project, Flooded: A Creative Anthology of Brain Injuries I grabbed it with both hands and asked how I could help. I can’t tell you more strongly how important this is, in everyone’s life. It is one of those things that can happen to literally anyone. House bound people are at risk of falling and extreme athletes are at a completely different risk of exactly the same injury, but from a high impact bodily collision or a fast flying ball. The rest of us fall somewhere in between but the chances of having a concussion at least once in each of our lives is extremely high.

Victoria Griffin is one such person. An elite athlete who in January this year was playing softball at college when she had such an injury out of nowhere… brought about by a simple ball to the head. She spent four months recovering and as a writer and an avid book reader, she and her family found very little literature to help them on this extremely scary and serious journey. When I contacted her and asked her about it she shared with me that:

“On the surface, the concussion cost me my senior season of softball and four months of my life. But in reality, it left scars so deep, they are difficult to describe—which is what prompted me to write about the experience. When I realised there was no publication solely dedicated to brain injuries, I began to truly consider how concussion awareness is approached—with facts and statistics—and how inadequate that is.”

And so began her dream. To create a book of stories, in all styles and genres, both non-fiction true accounts and fictional but medically correct stories, to bring these experiences to life. To give something to those who find themselves in this situation, so that they can reach out and be heard and to understand that what they are going through is very normal. To educate those who have never experienced concussion so that they are aware when they face it or can be there when a team mate or loved one is suddenly thrown into this extremely scary situation. Thirdly, she wants to showcase some brilliant writers in the process, so that the book will in no way be a bunch of boring statistics, …rather it will be a work of art for anyone to read and enjoy as well as learn from and remember. She shared with me the following in her words:

“I can’t explain to you what it was like to have a concussion, not like this. I can’t tell you what it was like, but I can show you. I can write a story that makes you feel the fear of being alone when a flooding attack happens and wondering if you’ll get help before you stop breathing. I can write a story that makes you feel the overwhelming depression of losing the entirety of your identity. I can write a story that makes you laugh at the silliness of staring at a light for ten minutes because you believed it wasn’t there.

By compiling an anthology of fiction and creative nonfiction, we can use multiple genres, styles, and tones to truly convey the experience of a brain injury. Because it’s not what it looks like or how many people it happens to that matters. It’s how it feels and how it impacts the lives of human beings.

She has worked tirelessly to make this dream happen, and I think that the world needs to hear what she has to say! I cannot tell you what a different it would have made to myself and my children if we had understood what was happening all those times that it happened to us. So I am passionately behind this even though only a few months ago I had never even heard of Victoria Griffin or Flooded!

But as with so many dreams in life, all this one lacks is funds… so she has launched a Kickstarter Project to make this dream come true. This is more than a dream to write a book, it is about educating, and helping, and bringing the reality that the world is only now starting to wake up to, ….of concussion and what we need to do about it, both in prevention and in recovery, but also in supporting those who are going through it.

I believe that this is a vital and brilliant idea which will benefit many, both now and in the future. If you even vaguely think that you may buy this book when it comes out, then why not spend that money now instead to help make it happen, for if her team are unable to raise the approximately $11,000 then no one will get to read it, and it won’t happen. ALL the details are here:

  • Where do I donate?
  • Details of the program (including a fabulous video and explanation by Victoria herself)
  • What do I get for my donation?
  • Where is the money going to? (including a breakdown of the budget)
  • How can I help in other ways? …. Spread the word! Share a link to the Kickstarter page on social media. Tell your friends and family. Help us to turn this project into a movement. And of course, you can visit the Kickstarter page yourself, and pledge to support the project! We would love to have you as part of the Flooded family.

One final word from Victoria:

“When I realized I was concussed, my first reaction was to try to hide it because I knew I would be benched. What if I had read an anthology like Flooded? What if I had known what could happen to me? I was lucky. I walked away from my brain injury with no permanent damage, and a poor decision early on did not negatively affect the outcome. But it could have. And for many, it does. Reading an anthology like Flooded may help others to make better decisions in such a situation.”

 

 

 

 

How can I help?

 

[I suggest writing a personal conclusion and appeal to your readers.]

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 “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!

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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 🙂
 

Invisible?

Two days ago it was very hot and windy. Then the change came and it suddenly became cold. Which was nice as the heat was awful, however I am still learning to listen to my body and I still get shocked at how much pain I am in and how many things happen in the 6 or so hours prior to the change.

If it was the other way around then I could respond to the weather change by keeping low and staying out of harm’s way, in the hope that I won’t get hurt, but because my body freaks out before the weather change, I don’t know about it until it is too late. Sometimes if I am resting at the time, it is subtle; … Frank starts aching deep inside my foot, or my hands start to ache. It is quite a specific kind of pain because it is so deep and strong when I am doing nothing. It hurts like hell, but at the same time no extra damage is being done, and if I go and have a really hot bath straight away and put myself to bed I can get through it and come out no worse than I was before.

But if I am out and about then it is another story. Yesterday all I did was open a teabag sachet (who needs each teabag to be in it’s own sachet anyway???), but we are staying in a hotel as we so often do with my husband’s work and sport travels (which is a perfect combo as I get to leave the house and have a change of scenery and spend the day writing in a cool pretty hotel room), but there was no warning. I did what I have done a thousand times before, and I simply opened a paper sachet. My hands are still able to play with clay and fabric and I need my hands to keep writing and creating things for therapy but to do such a simple task and feel the twang and every millimetre of that tendon from the back of the end of my thumb all the way up into my arm, twist and twang and distort was excruciating and in less than a second the use of my thumb to create anything decent went out the window for the next few days.

No warning, just bam… oops, …out of action for the day! (no, the weather report is no help, it has a lot to do with barometric pressure rather than temperature change so it doesn’t always happen).

This is where the invisible part of “invisible illness” comes into play. There is nothing to show you, nothing to patch up, nothing to even see happen. For those around me all they saw was me open a teabag and then say “oh dear” in excruciating pain… nothing else. They don’t get it, especially strangers.

img_5751So what photo do I share on this blog? What pic do I put on Twitter or Instagram?

Here you are… I have just taken a pic of my thumb… can you see the pain? …see the damage? …see that the tendon is angry and inflamed and burning?

Nope? Why not? Aren’t you looking closely enough? Don’t you care? …

I know, you are looking and I know you care, and you are dong nothing wrong as there is simply nothing to see. Especially as yesterday you saw that thumb roll out some clay or hold my husband’s hand or a fork when I ate, and it didn’t look any different … but today it is sore, deeply sore, and it doesn’t work very well at all.

I am thankful for ultrasounds and MRIs because they can see, but I can’t have one or both of those every time I hurt myself, which is mostly every day, multiple times a day. I rolled my ankle a week ago and still need pain meds to sleep at night.

I can dress that picture up as much as I can… add filters and change the colour and smooth out the wrinkles… but none of it will show what is happening inside… it is all invisible…

Lost Voice…

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Yes that is a pile of snotty tissues! Sorry for the TMI ….

About five years ago I got a really bad cough. The whole family had it, and it was such a bad one that people were taking three weeks to start feeling better again. It was a mid summer cough too, so no one was happy as it did the rounds of our social circles. I tried very hard to avoid everyone, but as always happens, especially before diagnosis, I caught it. I couldn’t shake it for anything, and I coughed until I threw up many times in the night, every night, for over three months. I slept in a sitting up position … which of course meant that I didn’t sleep well and nor did I keep the coughing at bay well. I reached exhaustion and beyond. I dislocated some ribs, and as it was pre diagnosis, it took three months of getting no better before anyone took me seriously.

This long drawn out misery and incredible pain meant that my brain fog was at it’s worst, and very quickly I completely lost my voice. And by gone I mean nothing left at all. People didn’t really believe me until they turned up anyway, sure that I couldn’t still be sick and sure that my voice can’t be completely gone. But the shock on their faces when I answered the door was a reminder to me just how sick I was. I was put on complete rest and eventually after three months I started to heal, and slowly my voice came back. But the damage was so bad that with Mah Eeds body tissues my voice never fully recovered. I was never able to hold much of a tune, but since then I have been unable to sing (at all), unable to shout, and unable to talk for long without coughing and my voice hurting 😦

Worst of all, is that whenever I catch even the slightest cough or sore throat, the first thing to go is my voice. And so here we are again, for the second time in as many months, and I have absolutely no voice whatsoever. Thankfully my throat doesn’t hurt, but I’m all snotted up, and can’t communicate at all. At least the cough is 80% gone, but I truly have no sound coming out at all. I am trying to rest, I am trying to be good, but we have been away for the past two weeks visiting family and I am jet lagged and exhausted. I am trying to stay in bed but specialists are important and take months to organise and so I can’t miss appointments especially ones like todays which I had already postponed once.

So rest rest rest for me for now, and loads of prayers that my voice decides to return soon! No phone, no Skype, no going out (no point)… and I’m getting rather sick of not even being able to communicate with the dog!