I think I have Titler’s block.

The title of my blog post is generally the first half of a sentence, with the opening sentence of the blog post completing the thought that was started in the heading, with the post then following along in a semi-orderly direction.

But not today.

Today I have Titler’s block and so this post will be all over the place, completely without any structure.

It is 12 noon and I have done sweet eff all this morning.

Apart from drive the totally unplanned hour long round trip to get David onto a metro bus because he missed his school bus this morning.

And seeing the suburban bus stop is next to a supermarket, I did a quick ninja shop and bought ingredients for three different meal options for tonights dinner.

Tip for young players. Do not go to the supermarket before breakfast.

I came home with canneloni and couscous, ricotta and red snakes and now that I have had breakfast I don’t feel like cooking a bloody thing.

David read my blog post , “When Magic Kisses and Wiggles Bandaids Don’t Work Anymore.”

He kissed me on the top of my head and told me he loved me, I then pushed my advantage in the mum-needs-a-love stakes and also scored a giant hug and a kiss on the eyebrow for luck.

The proton pump inhibitor (40mg pantoprazole) has taken the edge of David’s nausea so he only feels terribly seedy each morning rather than constantly on the verge of throwing up. So that is a win, sort of. We also came away with lots and lots of Panadol-Osteo, some Celebrex and a small supply of Pramin (10mg Metoclopramide) for when he is really feeling like shit.

The paracetamol seemed to take the edge of David pain levels a tiny bit, but he complained it was making him feel ill so he stopped after 2 days. We still have the big guns of the anti inflammatory Celebrex to keep as breakthrough pain relief when he is having a big flare up.

One of the difficulties in dealing with an incurable, degenerative and rare genetic condition is that the medical profession are always constantly on the back foot and being reactive rather than proactive and it is disheartening to realise that all we can really do is muddle along as best we can.

I don’t like being reactive, I am a doer, I like to be prepared and to have a plan. I am a great believer in preventative strategies and I am sure I was a glorious boy scout in a previous life.

But Ehlers Danlos Syndrome doesn’t allow for plans and preparations. Veronica managed one of her most hideous and painful dislocations while she was sitting down being still. *sigh*

So we are taking each day as it comes and our next visit to the Doctor will be to get David a referral to a psych who specialises in talking with people who are dealing with chronic pain, it would be nice if this psych was also experienced with teenagers but I am not holding my breath.

In the meantime with winter fast approaching we took advantage of a glorious autumn day last weekend to do a spot of fishing down at the river.

There was a time when a magic kiss fixed everything and what magic kisses wouldn’t fix, a wiggles band-aid certainly could. It is a sad day in a mothers life, when she realises that the one sure fire cure in her arsenal, just doesn’t work any more. That the magic has faded from her kisses and that wiggles band aids are made for little chubby fingers, not almost man hands.

I don’t often think of myself as the mother of disabled children, I certainly don’t think of my husband and children as disabled.When I think of disabled children, I think of the stereotypical image of a brain damaged child in a motorised wheelchair.

But I am, the mother of disabled children. My children are broken, betrayed by their broken gene and dislocating joints.

In my broken family Veronica and The Spouse are two of a kind, they both have a strong work ethic and they both treat their disabilities with a nonchalant disdain. They battle furiously on, until they collapse in their various heaps, gathering their breath, marshaling their strength and poking their respective ribs, shoulders and hips back into place.

David and I are of the same ilk, we both coast along doing just enough to pass, whilst also giving of ourselves to all that need a hand. We are the ones with the ready ear and the solutions, the broken naturally gravitate towards us. Or more especially the broken gravitate to my son. I learned a long time ago how to ration myself so that the psychic junkies didn’t drain me dry. This is a skill my son needs to master, but it is also a skill that only comes with growing up.

My son, my youngest child David, will be eighteen next month and somedays he is so broken it hurts me to watch. It is hard enough navigating the minefield of young adulthood with out having to deal with a broken body as well. I often wonder if I am in some sort of denial about the extent of David’s Ehlers Danlos or if it is just that I am so used to my husband and daughter being broken that I don’t think too deeply about it anymore.

My refrain in the mornings as David complains of feeling sick has always been, “You will be fine once you get to school.” As I pushed him into the shower, into the car, onto the school bus, out into his life.

Pushing him to push through himself.

David is in bed as I write this. He is having his first Ehlers Danlos Crash, he has pushed himself for so long that his body has pushed back and said STOP. I have a thick lamb stew on the stove and I am letting my son sleep. We have a Doctors appointment on Monday and then I will begin to push again. This time I will be pushing the Doctors to do what I want. I fought for seven years to find out what was wrong with my girl. Veronica has cleared the path for her father and her brother and armed with the knowledge and the support of my daughter I will try and make things a bit easier this year for my son.

And there is a time to faff about but if you faff about for too long you lose your writing time

Or I do at least.

I write my blog posts in the early morning. Each morning I get up and make a pot of coffee and I sit down at the computer. I check my emails and then I think about writing a blog post.

The critical piece of timing here internet, is the point between thinking about writing a blog post and opening facebook.

If I open facebook, I lose time, anything from 20 minutes to an hour can vanish in the click of a mouse.

I check my son’s status, then my daughters, then I check on you. I smile at the humorous pictures I see and I share stuff that interests me or that I think my friends will enjoy. click faff click faff. tick tock tick tock tick tick TICK TOCK.

Then twitter beckons and I have another choice, click over to my twitter account or log onto the blog.

I use twitter as a news service and If I click through to my account all chances of writing a blog post have flown out the window. I  become distracted and then overloaded mentally by all the goings on in the world. The occupy protests, Syria, feminist issues, causes, humour and stupidity all combine to steal at least another hour.

And look it is 8.20 am and I haven’t written a thing.

The clock is still ticking away, half the day has vanished already, I should be in the studio, eeek.

But I am procrastinating and maybe I should just make a music cd to work to. Something loud and rocky, good cleaning music.

Because the studio is chaotically messy from this months frantic making and I need to give it a good clean before I can glaze the work.

The Fired Up exhibition opens on the 4th of March. The work is half done.

The bisque firing was successful and the work just need to be glazed.

Glazing involves making five or ten litre buckets of glaze, mixing and straining and sieving and pouring.

All very physical work but I can’t concentrate today.

I am procrastinating.

I am procrastinating by writing this post.

I have managed to avoid twitter and facebook this morning apart from a quick check on the kids.

My son goes back to school today. He dropped out of school last year and spent the year sleeping.

His facebook status worries me  All-nighter then rosny tomorrow. Yiew. Pumped to get back into guitaring.

I need to remind myself  that I cant live his life,that I cant make him, that I cant make him be happy.

I cant fix him. My son is broken and I can’t fix him. I can just pass him the glue and hope.

I rang him at 7.08 am this morning and he answered the phone with, “Yes I am awake Mother”.

I wasn’t going to ring but I am too keyed up to let today slip by without making contact. David is an independent student, who does not live at home and he needs to find his own way without me nagging him out of bed and forcing him to go to school.

I am a bundle of nerves, of angsty, worrying nerves. I hope against all hope that David has a good first day at school, I hope his day today will be brilliant and that he will go to school again tomorrow, happily.

I hope, I hope, I hope.

I have had this feeling every first day of every school year of his life. Hoping like mad that he has a great day, knowing that his first day’s experience  will define the year. It seems that I have spent every first day worrying. The difference now is that we know about the Ehlers Danlos Syndrome. We know why David can’t sleep. Why he hurts, why the nausea lasts all day and why the anxiety gnaws at him.

And here I am again pointlessly exercising my mad skills with my 20/20 hindsight. If only I hadn’t sent him to Blah de Blah  high. If only I hadn’t made him stay at the primary school he hated, If only we didn’t live so far away. If only things were easier.

If only mum hadn’t died.

It is hard, internet.

And all I can do, is the best I can do.

I just muddle along, taking each day as it comes and making decisions based on the information I have at hand at the time.

And if wishes were horses I would own a circus.

I am far from okay but there isn’t a whole lot than anyone can do to make me better.

I also don’t see that anyone other than my very closest friend, asking me if I am okay are going to get a straight answer.

I will just lie and grin and say of course I am okay and then change the subject.

I am a brilliant actress.

RUOK is a wonderful concept but today it is giving me the shits.

Now before you start to get all upset with me and decide to lecture me about the ideas behing RUOK  and all that jazz.

This post is about me. Not about you.

If you are going to get upset with me, just piss off quickly and don’t give me the shits ok.

I am stabby enough as it is.

I am not okay today.

Tomorow I will be better, maybe.

The day my mother told me she had a black spot in her lung was one of those defining points in my life.

Everything now is measured in befores and afters.

The day my daughter was diagnosed with Ehlers Danlos Syndrome was another defining point

As was the diagnosis of her two chilfdren with EDS and their subsequent diagnosis of Aspergers and Autism.

My husband has Ehlers Danlos Syndrome.

My son has Ehlers Danlos Syndrome and suffers from anxiety.

These things are not okay.

These diagnosis dont bring sunshine and fucking roses into my life.

They bring despair.

Great fucking bucket loads of despair.

I am grieving.

I am grieving hard.

Lung cancer shouldnt have killed my Mother she was a non fucking smoker for fucksakes

My daughter shouldn’t have to struggle to brush her own hair.

She is 22 years old and can barely walk from one room to another.

Simply taking her children to the park exhausts her.

This sucks.

My son is 17 and is proving he is  grown up by rebelling against everthing we have taught him.

He has moved out of home.

He has dropped out of year eleven.

He was stabbed behind the ear in a brawl. The wound was superficial. My fear manifested as anger.

And I gave my son another reason to push me away.

He has unfriended me on facebook because I pulled him up privately on a thuggish racist status update.

I am desperately afraid that his anxiety will get the better of him.

I watched a police car driving up my quiet country road the other day and I was convinced it was coming here to deliver me bad news.

I started to cry with relief when it drove on by.

I know that this stage will pass but it doesnt make it any easier.

I share snippets of my life here on this blog.

Tiny slices.

I was told that I should have a professional ceramics blog and leave all the personal rubbish out of it if I wanted to be taken seriously as an artist.

But I cant be bothered starting a new blog  full of art wank and words and ideas that belong in a dusty book somewhere.

I use this blog to think out loud, to order my thoughts, my ceramics and my life are intertwined, as is the blog.

They all are a part of who I am.

Maybe RUOK has worked anyway

As I have cried and written my way through the shit that is in my head.

I am not okay today.

But I am feeling a tiny bit better, thank you for listening to me internet.

I will be okay tomorrow.

Because really what else is there to do but

Just keep swimming.

I have never been one to sit quietly and accept things on face value. When my daughter began to get very ill in her early teenage years with a strange sort of flu like virus that lingered for weeks at a time I searched for answers. What was this horrible virus that Veronica never quite recovered from?

I wanted to know why my 14 year old daughter had a headache that would not go away? Why she was  constantly nauseous and at one stage of her illness only able to eat plain pasta, tomatoes and apples. Why was my girl totally exhausted and yet unable to sleep? Why were all her joints aching? What caused her to nearly pass out every time she stood up too suddenly, what caused the heart palpitations and the unexplained bruises? Why did a simple cold always turn into a chest infection, why was she quick to catch everything and slow to heal? Why was my daughter in pain?

I needed to know why this was happening to my first born child and so I pushed for answers. My hopes would rise with each new specialist we saw only to be shattered again when the results of Veronica’s blood tests came back as normal, except for one little marker that was always a bit higher.

When your child is sick finding out why does become like an obsession. A sick child takes a hell of a lot of energy and it is also a very isolating experience for a mother. I couldn’t really talk about how worried I was about Veronica with my general acquaintances because that sort of conversation very quickly becomes boring. My only allies were my mother and my best friend Tanya, who has lupus.

Mum and Tanya held my hand, soothed my fears and offered their ears. They would ring me with news of  rare conditions with symptoms that sounded similar to Veronica’s and encourage me to go to the Doctor to get this and that checked out. They were there to pick me up when I was at my lowest and I didn’t feel quite so alone with their support.

At the end of two years of illness we had exhausted all our medical options. I had been told by various doctors some kindly, some brusque and some indifferent that Veronica was faking, that she had a mystery virus, that it was probably worms, growing pains, sinus, psychological issues, anorexia and the list goes on and on. One doctor was very interested in her relationship with her father and another doctor was openly disgusted that I was so stupid as to allow this slip of a girl to waste everybody’s valuable time.

We were given a diagnosis of Chronic fatigue syndrome and told to get on with out lives and that Veronica would probably grow out of it.

All through this, The Spouse tried to be supportive but he is grumpy at his best and downright horrible at his worst. The Spouse was sympathetic to Veronica’s pain, as he is in pain all the time. He was sympathetic to Veronica’s nausea, as he always feels like crap himself.  His remedy was for Veronica to stop feeling sorry for herself and to push on through. He growled at me, that I was spoiling her when I let her stay home from school when she was having a bad day and his common refrain was that Veronica had pulled the wool over my eyes in order to have a sickie.

The standard conversation that Mum and I had was that if Veronica had a broken leg, her father would wait on her hand and foot, he would build some amazing contraption to make her incapacitation easier and nothing would be too much trouble at all for his pumkin, but because Veronica had an invisible illness he wasn’t very sympathetic and the atmosphere was tense. I am sure that he thought that chronic fatigue syndrome was just another name for lazybones.

Veronica and I pieced together a family history of similar unexplained ailments on her fathers side of the family. There wasn’t anything that we could really put our fingers on apart from, The Spouse’s sister who also had been told she had chronic fatigue syndrome and his mother who had some of Veronica’s symptoms as well. It was hard with a sick child and I was never satisfied with Veronica’s diagnosis of Chronic fatigue syndrome.

In 2007 I started blogging and one of the first blogs I subscribed to was Benefit Scrounging Scum, a British writer who had a rare illness called Ehlers Danlos Syndrome. Over the course of my first year of blogging Bendy girl and I became friends and she suggested that Veronica might have Ehlers Danlos Syndrome as well. I was horrified at the thought that Veronica might have EDS as the illness looked awful and when Veronica also said that she thought that she might have EDS, I was very quick to dismiss her with a firm no, no you don’t have that at all, because quite frankly the thought of Ehlers Danlos Syndrome frightened the shit out of me.

Of course Veronica does have Ehlers Danlos Syndrome and this was confirmed by a visit to the geneticist.

When Veronica received her formal diagnosis from the geneticist, The Spouse’s initial reaction was that the EDS must have come from me as I had a recurring dislocation of my knee from 1993 -1998 and that was the end of it as far as he was concerned. If I tried to talk about the EDS coming from his side of the family I was angrily dismissed and told to stop nagging him. The Spouse did not want to hear about EDS and it took a month or so before he could begin to accept that Veronica’s EDS had possibly come from him.

All truth passes through three stages. First, it is ridiculed. Second, it is violently opposed. Third, it is accepted as being self-evident. 

Twelve months after Veronica’s diagnosis, The Spouse and David were also diagnosed with Ehlers Danlos Syndrome.

It has been a long journey.

Four days in Melbourne is only just enough time to give you a tiny taste of all that wonderful city has to offer. It was a whirlwind visit and I managed to get blisters on the balls of my feet from all the unaccustomed walking on hard city footpaths.

On the Friday afternoon we walked from our motel in North Melbourne into the city via the Vic markets. A quick tour on the city circle tram helped me to get my bearings and I happily absorbed the sights and sounds of a large city, late on a Friday afternoon. We wandered through the busy lane ways which were covered in street art and I narrowly avoided being shat on by a city pigeon as I was photographing the skyline from within a lane way. We jumped on a tram and headed out to Lygon street to finish off our day with ice cream.

On the Saturday we went for Yum Cha in Chinatown and that was a thoroughly wonderful experience. Thanks to Hazel for her recommendation. The trolleys of  food came out at a cracking pace and we happily sampled everything, though in hindsight the gelatinous pigs trotters were a bit of a mistake. Full of delicious food we waddled off to spend the rest of the afternoon at the Vic Markets. Once the market had closed down for the day we tiredly made our way back to the motel where the kids would have happily stayed but I had plans and they didn’t involve spending much time in our rooms. So I dragged them back into the city and photographed David’s reflection as he caught his breath.

After much dithering and debating I pulled rank and we jumped on a tram and headed off to St Kilda. The teenagers faces lit up when they saw this and all of a sudden the atmosphere changed and they spent the rest of the evening being spun and twirled and catapulted on various rides, with the big dipper getting the most attention.

Sunday saw the teenagers head off to the zoo while I met a friend for lunch in Brunswick street. We all headed back to St Kilda for cake in Acland street and hamburgers at Greasy Joe’s.

Finally on Monday we made it to the National Gallery of Victoria, yay. I had been trying to get to the NGV all weekend but we kept on running out of  time.

As the kids were lying on the floor under the stained glass ceiling, I received a call from The Spouse telling me that he thought he needed to see a doctor. Alarm bells started to ring as The Spouse never willingly goes to the doctor. As I listened to my husband’s rambling and confused description of his infected hand I knew the situation was urgent. I immediately began to organise his admission into hospital by remote control whilst trying to admire a Picasso. The spouse was suffering from blood poisoning and I was hundreds of miles away ack.

Due to his Ehlers Danlos Syndrome, The Spouse’s immune system is a bit wonky and when he gets sick, he gets VERY sick, VERY quickly. My son in law drove The Spouse into hospital and Veronica rang ahead  to appraise the triage nurse of all the details of his Ehlers Danlos and The Spouse was in a ward hooked up to intravenous antibiotics within a few hours.

So I arrived home from Melbourne, late on Monday to The Spouse in hospital and Veronica’s blog under siege from a pair of anonymous multinamed nutters.

This pair of repetitive bores are giving me a headache and my inbox is full to overflowing with their crap aimed at my daughter. Their totally nutty rants aren’t just contained to Veronica’s blog though, so please don’t comment here if you don’t want them over at your blog tromping all through your comment sections as well.

I am tired and a bit cranky as last night there was also a brief but fierce thunderstorm which flooded David’s bedroom, the front verandah and the laundry area outside where I store all my clay and glaze materials.

I have a zillion photos that I will process and publish as soon as I can catch my breath.

I will finish up with a little reminder to Veronica’s nutty commenters, before you comment here with more of your silliness you would do well to read my comment policy.

That is what I reckon this post will be, all muddled up without a coherent train of thought running through it to pull it all together. But that is life. Life is messy and muddled and I just make it up as I go along and hope like hell I am doing the right thing.

I started to write this in response to my daughter Veronica’s post, about her grief and her sense of aloneness in all she is facing at the moment.

I had a long talk with Veronica yesterday, as we do nearly everyday. She prepared me for the content of post that she had written knowing that her sadness would make me cry. My parting words to her in her aloneness was the only truth that I could give, that at the end of the day she is “The Mother” and she just has to suck it up and get on with her life as best she can.

The only comment I could leave her after I had read her words was, to just keep on putting one foot in front of the other.

Because that is all we can do, just keep on plodding along.

The Ehlers Danlos Syndrome makes everything doubly hard for my little girl and then you throw a sprinkle of Aspergers into the mix and I don’t see any easy days in my daughter’s future at all.

So there is grief on top of grief.

Grief for all that we have lost with the early death of my Mother. Mum was an energetic whirlwind of a woman. A 5 foot tall bundle of contagious, hands on practical energy. Her catch cry was, “Lets Go!” and go we all did, swept along in the wake of Mum’s enthusiasm for life.

Grief for the loss of easy children, with simple answers for Veronica. We all want our children to be happy and sometimes the despair I hear in Veronica’s voice is enough to bring me undone. Again.

There is also Anger, frustration and  a good serving of stress to top it all off.

I am slow to get angry but when I do my anger is like a flash fire, hot and fierce and all consuming. I am an Aquarian born in the year of the horse and my Chinese element is fire and apparently for those that know these things I am true to my signs.

I can feel my anger building. Anger with those that make my daughter’s life hard. Anger with members of “The Spouses” family who wont believe that EDS is real. And a general delayed anger that my Mother is dead because everything would be a hell of a lot easier with her here to help.

I believe in truth and for those medical professionals and assorted bystanders that don’t want to hear my truth, your denial isnt going to stop me saying the words and fighting for the best outcomes for my family.

Ehlers Danlos Syndrome isnt an easy illness to deal with. Ehlers Danlos Syndrome is pretty much invisible and those with EDS are used to being in pain, or feeling sick all of the time so they don’t make a fuss. But as the mother of two EDSy children and an EDSy spouse it is very hard for me to watch and feel helpless in the face of their illness. So I do the only thing that I know how to do and that is support my immediate family and  try to educate other people about EDS.

I simply do not have any emotional energy to spare for those people who are unwilling to make an effort to understand what my family are going through on a daily basis.

The Spouse can not stand for longer than five minutes at a time without feeling like his hips are going to fall out and his back is on fire. He put up with this pain for a long time and was starting to spend longer and longer in bed because it was the only place he could be pain free. Until I dragged him, unwillingly I might add to our family GP and organised for him to have better pain relief in the form of slow release morphine patches. The Spouse has your typical Aussie blokes attitude to doctors and wont go to the doctor unless I push it. The Spouse’s remedy for his pain is to just drink more beer and hope it goes away enough so that he can sleep.

For a man with a very strong work ethic it is very frustrating for him to be limited in what he can do and that frustration often presents as aggression.I don’t take any notice of the grumpy old bugger when he is having a whinge and his anger whilst loud, is mostly directed at himself.

The parts of your brain that deal with pain are right next to the parts of your brain that deal with anxiety. So pain and anxiety go hand in hand. The Spouse hasn’t been to any of my exhibitions as he doesn’t like crowds. He wont go into the city and the only time he willingly leaves the house is to go fishing.

Both my children have varying levels of anxiety as well, this is all part and parcel of the Ehlers Danlos Syndrome.I am hoping that the psychologists at the pain clinic at the hospital can help Veronica without having medication that turns her into a zombie.

As I wrote earlier when you throw Aspergers syndrome as well as Coeliacs into the mix it makes for a very challenging headpace. I am missing my mother dreadfully and I worry about my grand children a lot. So I throw myself into my work and join another committee, set up ceramic blogs and facebook pages so that I don’t have to think too deeply about the future.

Slowly, slowly, inch by inch the construction of my studio is starting to happen. I am not used to sub-contracting out any building work as “The Spouse” is my builder. Together we have been owner-builders for the past twenty odd years but as “The Spouse” gets progressively more broken and some days can barely manage to stand without pain, it was time to call in some outside workers.

The plans for my studio were approved by the council in May and now it is September and work is only just starting to happen. Patience isn’t one of my strong points and the frustration of not being able to do some serious work has been making me a tad gloomy.

But!!! Now that work has started I am hoping that with everything crossed, fingers, toes, etc that I might be in my studio by Christmas.

This is the site, it is nearly ready for the concreter to come up and work his magic.

Yesterday afternoon my daughter rang me, Veronica had dislocated the bone behind her knee and it was refusing to go back in. I was full of useless advice and it was a horrible but brief conversation. Veronica was in a lot of pain and I was unable to help her. There was one small consolation though and that was that Veronica was trapped on her chair in front of her computer.

I suppose if you are going to be in excruciating pain with a bone poking out the side of your leg and unable to move, there are worse places to be than at your desk in front of your computer. I told Vonnie to keep me up to date via twitter.

Here are some of  our tweets over a three hour dislocation.

@SleeplessNights will straightening your leg out make it pop back in?

@frogpondsrock Nope, will tear the tendons.

@SleeplessNights Bloody thing! While you are stuck there you could look up quince recipes for me.

@frogpondsrock lmao – I think not.

Relocated. Excruciating.

It wants to pop out again.

All the painkillers in the house wasn’t (isn’t) enough to deal with that. #ehlersdanlos

@SleeplessNights now strap the fucking thing

@SleeplessNights not that strapping it will help but it will make me feel better.

@frogpondsrock It’s braced with tube bandage, lots of it. Best stuff.

@SleeplessNights Good. Now please be careful, I still feel a bit sick for you.xox.

@frogpondsrock I am being very careful. Can’t bend the leg at all. Funny – I didn’t do anything to dislocate it, just bent the knee.

It is that last line written by Veronica that sums up all my fears and frustrations with Ehlers Danlos Syndrome. The fact that you don’t have to do anything at all to suddenly have a dislocation and be faced with excruciating pain is frustrating and terrifying at the same time.

My husband, son and daughter all have Ehlers Danlos but with varying degrees of symptoms.The Spouse  has only started to dislocate in the last few years and it is apparently quite common that dislocations will only start to present in middle age. David is in the middle of puberty and isn’t as bendy as his sister but to date he has dislocated his shoulder, elbow, fingers and his ankle subluxes. He can make a horrible clicky popping sound with his jaw and I worry that he will do it one time too many and bam out goes his jaw.

They all share the same symptoms of nausea, headaches, insomnia, low blood pressure, dizziness, achey joints, pain, stretchy fragile skin that tears easily, slow healing and they are also prone to infection. The Spouse and Veronica also have Livedo reticularis and Veronica and David have stretchmarks in strange places. They all have allergies, excema and asthma, poor circulation, weak eye muscles with a slight blue tinge to the whites of their eyes and I would trade them all in on new models if I didn’t love them quite so much.

Doctors in Tasmania know very little about Ehlers Danlos Syndrome and so it is very under diagnosed. Medical students only ever see the very extreme cases in medical text books and Doctors often fail to connect the dots. EDS has a lot of similarities with Lupus and EDS is commonly misdiagnosed as Chronic Fatigue Syndrome or Fibromyalgia.

The Spouse has two sisters who are suitably sympathetic towards our diagnosis of EDS but completely refuse to believe that their children could have EDS. *sigh*  It is glaringly obvious to me that some of my nieces and nephews are definitely very EDSy and as much as I worry about them, I have to conserve my energy for my own children and grand children.

There are some very good bendy bloggers out there and I would recommend that you click over to Bendy Girl at Benefit Scrounging Scum or Achelois at The Tensile Times as well as my daughter Veronica at sleepless nights.

If you have any questions about EDS or if you think you have EDS leave a comment  and I will get back to you and help you as much as I can.

When my children were small I dreaded going to the local primary school. I used to have to take deep breaths as I walked through the school gates, past the icy stares of the reebok squad and the condescending nods of the glitterati girls. It really felt like I was walking through a gauntlet of disdain and disapproval because I was the one who lived an alternate lifestyle.

When David saw me at school he would launch himself at me and I used to have to brace myself so that the force of his hug didn’t knock me over. Then together, we would walk out the school gates holding hands, swinging our arms and smiling to each other. Away from the horror that was a small town primary school full of prejudices.

We were that family. When everyone around us was building McMansions and driving the latest cars. We were building our house room by room from recycled materials. The fact that we had an outside toilet was a major talking point and my children were teased mercilessly by the children of relatives as well as the children of the school establishment. People that had never been to my home would tell stories in lurid detail of the wild drug orgies we participated in and the squalor in which we lived. The fact that we had few visitors and that alcohol was the only drug I used was quite beside the point.

At a time in Australia when people were encouraged to buy buy buy and credit was king. We stayed debt free and went without. The spouse was labelled a dole bludger because he was unable to work due to the pain of his Ehlers Danlos. We didn’t know it was EDS then we just thought he was broken and that his constant pain was due to a very serious motorcycle accident he had been involved in, in 1992 and then compounded by the injuries received when he was shot in a hunting accident in 1993. The label of dole bludger is a horrible one to carry though and living below the poverty line makes you appreciate the things you have.

If people were happy to make snap judgements based on the way I looked I was also more than happy to encourage their misunderstandings by dressing differently and not explaining myself or my motives.

Now that I am a bit more grown up I am ready to start to explain myself a bit. I look at the glitterati girls and they are still desperately holding onto their fragile crowns, their makeup is getting thicker as they try to hold back  the years and I find it hard to imagine that these women’s gossip and innuendo once made my life difficult.

I am ready to step out into the light of my small community and announce that here I am, I am an artist.

Members of the Greater Green Ponds branch of  Tasmanian Regional Arts are building up a collection of art and craft created in the Southern Midlands area. Their plan is to acquire works and lease them for display in public and private spaces through out the Southern Midlands.

I am going to ring them up today and offer to donate Boganvillainy to their collection.

I am a bit nervous, but it certainly isn’t as daunting as walking through those school gates were a few years ago.