Ehlers Danlos Syndrome

Hello Internet, I am home.

by frogpondsrock on November 11, 2010

in arseholiness,blogging,Ehlers Danlos Syndrome,Family,real life

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.

{ Comments on this entry are closed }

All muddled up.

by frogpondsrock on October 16, 2010

in Amy,Aspergers,ceramics,David,Ehlers Danlos Syndrome,Family,Grief,headfuck,Isaac,Sadness,Veronica

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.

{ Comments on this entry are closed }

One step at a time.

by frogpondsrock on September 8, 2010

in ceramics,Ehlers Danlos Syndrome,Family

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.

{ Comments on this entry are closed }

Ehlers Danlos, fear, frustration and dislocations

by frogpondsrock on May 3, 2010

in David,Ehlers Danlos Syndrome,Family,Veronica

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.

{ Comments on this entry are closed }

Coming out in a small community.

by frogpondsrock on April 30, 2010

in Arty stuff..,ceramics,Ehlers Danlos Syndrome,Family,potential insanity

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.

{ Comments on this entry are closed }

← Previous Entries

Next Entries →