Which draws blood?

This is a follow-on from THIS story, where I tried to explain that it is not the obvious that breaks me. This is another really tangible way I can explain what it likes to have my particular Connective Tissue Disorder.

An Orange, or pair of scissors … which one draws blood?

I love scissors. I don’t know what it is, but cutting paper, fabric, anything really, brings out the creative best in me. A bad pair of scissors is a nightmare for anyone if they don’t cut well, dig into the skin etc, but with a good pair, one that fits my thumb and forefinger perfectly, I can spend hours cutting and I’m fine.

But I have never been able to peel an orange. There is so much about a connective tissue disorder that is very hard to measure, but orange peel is a great example of something that is measurable for me. When a healthy person digs their fingernail under the skin of an orange, even the most resistant peel will always give way before the fingernail gives way from the flesh of their finger right?

But for me, it is the other way round. Even the softest peel sticks stronger to the flesh of the orange than my fingernail sticks to my finger. It is always, and by always I truly mean always, the peel that wins and my fingernail that loses. It is extremely sore, especially as the acidic juice gets into the bloody wound…

So all my life I have either avoided oranges altogether (which I have become allergic to anyway, but that’s a story for another day), or used a knife and spoon to peel them.

You know how you physically cringe when you think of stubbing your toe badly or slamming your fingers in the car door? That’s how I feel at the mere thought of peeling an orange!

Invisible illnesses and conditions are very hard to measure; Pain impossible, along with his ugly cousin Fatigue.



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I would never in a million years have guessed that I would find a home on YouTube! I am quite sure that even in as short a time as a year I am going to be mortified at how bad the early videos are, but right now I’m just a little bit proud of some of them! Some are short like this one HERE, but others like THIS ONE where I actually TALK (shock horror!! Do we all hate the sound of our own voices?) are longer and much more involved. But when you spend most of your life shut away from the world and can no longer teach in real life anymore, this has turned out to be an amazing solution for me!

I am growing ever so slowly, but one video at a time I am collecting a few subscribers and comments and feel like I’m actually having some sort of an impact in the world, as small as it is!

I created a Facebook Group to support it, and it is growing even faster… so please check it out HERE?

If you’ve missed this little endeavour I would SOOO appreciate your support!

Thanks as always 🙂

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Where you can find and follow Jennifer:

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5 Ways to Derail a Friend’s Grief Journey!

1: Make it about yourself instead of them.

For the vast majority of people I speak to about any kind of grief journey, the first thing they mention is how lonely it is. They also speak of the treasured few who we there, right by their side. But they often carry a deep pain from all the people who let them down. I get that. It is my experience too. So our need to be heard and validated is very real. So why is it that so many who have walked that journey see someone else on that road and think “Oh, thank goodness you get it … here is MY story”?

But still, their grief journey is not about you. It is still about them. You may have a lot to offer and ways to make their journey better than yours was, but please don’t make it all about you.

Comments that begin with “When I ….” or “For me…” are perhaps signs that you have made it about you instead of them?

2: Hurry them to the next step.

Grief journeys suck. They are awful paths to walk, and they hurt. But in lesser ways, they are awful things to watch too. Friends and family hate watching people struggle through step after step, after step, of a grief journey (often on a journey of their own), and it makes them feel uncomfortable, powerless, and frustrated. It is so easy to want them to come out the other end faster, it makes sense to want them to heal, or to learn all that you have learnt. But we need to remember that because it is a process and a deeply painful one that is not as linear as some people make out, it can’t be rushed. Rushing them disempowers them.

One of my biggest struggles, second only to how many friends I lost, and how rude people were, was around the space of those who knew better, those who have been down grief journey’s themselves, who pushed and shoved me to get through the other end quickly.

Comments that begin with “It’s time to…” or “why can’t you hurry up and get on with it…” can leave someone feeling pushed or hurried.

3: Forget what it was like to be where they are.

Because much of a grief journey can be lost in a blur or forgotten in a strange time warp that protects us from the reality of so much time “away” from “normal” life, it is so easy to forget that it was a very long journey that we took ourselves. It may feel like forever ago that we were the carefree person of “before”. But the grief journey we took often feels in hindsight, to have been quite a fast one.

I can assure it wasn’t. It was slow and ugly and painful and hard for everyone. And when others walk it, we mustn’t expect them to “do” their journey any differently. This is the bit where we need to meet them at their point of need, validate the stage they are in, and hold their hands as they navigate their way through.

Comments that begin with “That’s not healthy to….” or “You need to…” or “I never did that..” are perhaps signs that you’ve forgotten what it was like to be in the middle of the fog yourself.

4: Comparing notes of any kind.

Who’s grief is worst? longest? Who’s issue was harder? Does a death trump an illness? Does a child trump an uncle? Who coped better or got better quicker? It blows me away that so many people diminish and invalidate a grief journey because it wasn’t quite as bad as their own.

Comments that begin with “Well at least you….” or “There is always someone worse off…” can leave people feeling as though you are comparing their journey to yours.

5: See it as stealing from our own journey.

It is so easy to believe that it is some kind of competition. Sometimes I see people behaving as though there is only so much compassion in the world and if they see someone getting any then they try to grab some for themselves. And it comes out looking like some people see it as a competition. It blows me away and leaves me feeling very sad.

But I decided that this behaviour isn’t about winning as such, it is more a fear of invalidation. Those who don’t feel their grief validated sometimes try to squash the validation given to others.

Comments that begin with “That’s nothing…” or “yes but MY stuff on the other hand…” can come across to those listening that you are trying to steal their compassion for yourself.

It’s hard to look back on our own journeys, and for good reason, as there was so much pain. But remember what it was like to just need someone to sit with us, mourn with us, just silently validate the place we were in? We now have the opportunity to be that person for someone else…


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Mixing My Worlds!

IMG_0718A friend was saying just the just the other day that they follow a weather expert on Twitter and he is amazing. Except that he is also a budgie breeder and every now and then he posts about his cute little birds. My friend finds these budgie posts annoying. The point they were making is that people who love weather find him fascinating, but they follow him for his keen knowledge and insights. They don’t follow him for his stupid budgies, and if he keeps posting budgie pics, they will dump him and follow someone else who posts about the weather. They may not be quite as good as this man, but at least the followers wouldn’t have to put up with the stupid bird pictures.

The assumption also, is that if someone follows him for his budgie photos, they would no doubt get sick of his stupid weather updates and insights. Does this mean that the only people who will stick to following him are budgie-loving-weather-watchers? A very small group by any measure. Does sharing both of his passions in the one public space not double his audience, but reduce it enormously?

In my experience, the answer is sadly yes. I have found this to be the case in my own social media space. There are people who love my writing and my books and follow me as an author, but the moment I post something about my health issues, they unfollow me. Health issues and particularly chronic illness and disability or mobility issues appear to make many people a little uncomfortable. There is nothing cute about chronic illness, so if people can’t even stick around for budgies, why on earth would they stick around for something that they fear, or are uncomfortable with?

But I AM a chronic illness sufferer. This is in many ways the most significant part of who I am. I don’t want it to be, and I would never choose it, but it is my reality. I want my writing and my art to trump my disability, but at the same time, I refuse to deny it’s existence. Being an advocate for health, diagnosis, and encouragement in truly difficult situations is part of my passion and my reason for being. I don’t want to deny that part of me.

It isn’t fair, but it is the way it is. For the most part, the people who follow me are that small group of budgie-weather folk, (except they are the author-disability folk), and hopefully, there are more of them than the former group. It isn’t fair that in yet another regard, my health issues restrict my ability to make a mark on the world. I feel bad that I have to rely so heavily on fellow spoonies to support me and share my art and my writing, sometimes I just want to be “normal” in the big bad world.

But there are a few very small silver linings. The handful of fans who are not of my chronic world who still follow and support me are such treasures that I may never have had the opportunity to know had a whole world of healthy people out there supported me as well. So they have become very special to me!

And the other silver lining is that the chronic community support myself and each other in ways that I think one would never get out there in the healthy world. Of this I am sure. You are a gift!

I wouldn’t trade my weather-budgie crowd for anything! (even though I really still hope to make it as an author an artist in my own right!)


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Which is the Odd One Out?


Which is the lethal weapon? Which one has a head that undoes me?

Guess again. I can hold a hammer in my hand, and grip the thick, solid handle. I have always used a hammer well and in hindsight, I somehow must have learnt that using a hammer properly (using the weight of it to its best advantage and letting it do the work for me), was always good for me. It is one of the many ways in which I have instinctively known to care for my body in the decades before I knew exactly what was wrong.

The spray on the left is also safe for me. Again, it is a “whole hand” grip and a broad movement. I am sure I wouldn’t be able to use either of these things all day, but I don’t have problems using them in the small ways that I do these days.

On the other hand, the aerosol is my nightmare! I can perhaps do a 10 second spray if I have to, but that’s it. I hardly use aerosols anyway and I’ve never used hair spray or cooking spray, but on the odd occasion I need to use spray paint, and I tried again a few days ago. And nope, I will NEVER be trying that again! A single, small joint with high pressure, I lasted a few seconds and that was it, and my finger still hurts.

Why am I telling you this? People see me using a hammer to smash up a bit of tile or plate for mosaic and say “she can’t be that bad”. But they don’t see what I can’t do. The spray can, the tile cutters, the sanders that used to make my creative work so easy…



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Working With Mah Feet Up!

Following on from this post, a few people have asked me how I actually do what I do either in bed or with my feet up. I have become quite efficient at it really. I have a set up my bed with shelves beside it, holding all kinds of tools in easy reach, and I’ve made trays to work on which you can see as the backgrounds of most of my YouTube videos.

But I don’t just work in bed. I can work anywhere as long as my feet are up and my knees are bent. If my legs are straight then they slowly start bending back at the knees, which is not only extremely painful but if left longer than half an hour or so, they won’t bend back.

I also need to sit exactly straight (left to right that is, if one hip is higher than the other then I also get stuck or damaged), and must have support in my lower back.

So the bean-bag works short term when the weather is great for a fire, here I am glueing tiles onto displays ready for selling (more on that later), working on one of my smaller boards. My only problem here is a little someone who likes to join me! She always sits so close to me but at least on the couch or in bed there is a little room, but bean-bags get squashy!

Sometimes I leave out the tray altogether and just use my legs. Many years ago I found an old ottoman and recovered it. There were two actually and they are slightly higher than all my couches which is perfect for my legs. Here I am sitting in the dip on the couch (between the cushions) as it balances perfectly, with baskets on the ottoman and my legs as the table as I glaze clay tiles 🙂

So it is rather unconventional, but for the time being it allows me to keep being creative which is a game changer for me!

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Frightened of Losing Your Diagnosis?

img_8897-1Before diagnosis, the decades in the wilderness where I did not even have the words or constructs to understand my pain and exhaustion, never mind anything to understand them, it was terribly, terribly lonely and very, very frightening. I stumbled around in the dark and had absolutely no idea where was I either going to or coming from. I am sure I did the old proverbial “walk around in circles” thing on many occasions without even knowing it.

Then came diagnosis. As I look back on the two years since then, the journey has been just as crazy. But it has been very different too. Diagnosis may be the end of one journey, but it is also the beginning of a new one. A way less lonely journey. Before diagnosis, there was just me. I had no tribe, and I belonged nowhere. Post-diagnosis, I have become a vital member of not only a tribe but an army. I am a Zebra, I belong to The Mighty, I am a team member of many groups, and I feel as though I contribute and make a difference in some small way. I have all the benefits of belonging to a tribe, and I no longer walk alone in this part of my life.

But that diagnosis keeps threatening to change. As each new specialist throws in their opinion (whether asked for or not), as criteria for diagnosis evolves and tightens, and as new discoveries are made, especially in genetics and science labs, the fear of being kicked out of my tribe is great. What would happen if I was told I no longer belong? What if was sent out into the wilderness again?

There are massive potential problems and complications for medical insurance and doctor options when losing the diagnosis, but in many ways, the scariest part is the fact that I would be back to where I was before. Out there in the desert again, a lonely leper.

But the reality is that the door to diagnosis wasn’t just about the specific diagnosis. It felt like it at the time, but in truth, it just led me to find a larger and more complicated tribe than simply the EDS Zebras. I belong to the Chronic Illness world which includes the undiagnosed! It turned out that I belonged to a whole tribe that I didn’t even know about, that I didn’t know that even existed, never mind how to find them!

When Fibromyalgia was added to my official diagnosis, I wasn’t stumped and lost like I was after the EDS diagnosis. Instead, I simply popped over to the other “department” of The Mighty, asked around my “Rare Diseases” community, popped the questions on MY Facebook page instead of having to search for new people, and had more answers than I could cope with within the hour. If I was to lose my EDS diagnosis tomorrow, I would not be all alone in the wilderness again, I would simply slightly adjust my position among my comrades.

There are over 200 Connective Tissue Disorders (CTD) and every doctor, no matter their other opinions, agrees that I, and my children, all have a CTD. They also agree it is genetic as we all have the same symptoms. Most of those CTDs fall into one of a small handful of categories, and we are very clearly (thankfully) ruled out of most of them because they do have specific tests. The closest fit and the only category left are the Ehlers Danlos Syndromes, so while we still don’t fit very neatly into one of them yet, the doctors tell me it doesn’t really matter which one because we can’t fix it anyway.

When I think about it with my heart I get fearful and anxious. I can’t help wanting to be more of a certainty. I am frightened of being a “token” member instead of a “real” one. The memories of the wilderness are all too near, and they haunt me in my weakest moments. Pleeeease don’t send me back out there to Leper Land! Pleeeease let me stay here in the safety of my tribe! I am a zebra, I always have been and I always will be.

But when I think with my head I know that for the most part, they are right. And no matter and change in diagnosis, I will always belong to the tribe.


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