Kissing Frogs

 

my prince by Anita Jeram for TWO BAD MICE
Art by Anita Jeram for Two Bad Mice

 

I remember when I was younger, my Mum would tell me what sort of man I should choose to be my husband one day.  Some of her advice was outstanding. I didn’t listen to it.

“Choose someone who is good with their hands.  A practical man,” she said.
“Don’t marry for money; but don’t love where there is none”.
“Make sure your choice is a man of God”.
I ignored them all, but the last one in particular. I recognised that a man of God wouldn’t choose a girl like me.  I was well away from the church by then, and even if one of those hapless chaps had wanted me, choosing someone from the church felt like choosing to straightjacket myself for time immemorial.  And anyway,  some of the most “Christ-like” people I have ever met don’t have a religious affiliation, but they are warm, giving, loving people.  So I amended that bit of advice to: “Make sure your choice is a good man”.  All three requirements made for a tall order.  Speaking of which, I had also decided that my Mr Right had to be tall, like me. It was my only physical criteria.  It is really hard to find a good man who is practical with his hands and sensible with money, a good person and tall to boot!  Especially when that isn’t what you are really looking for.  See, what I was attracted to was rebellion, passion, poetry and emotional connection.  I wanted excitement and intellectual conversations.  I wanted challenge and heated arguments.  I wanted crazy good sex.  Lots of it.

But it took me a long time to realise the kind of person I actually should spend my life with.  It was a lot more like my Mum’s set of criteria. By the time I was 27, I had been divorced and back on the dating scene for four years.  I was afraid I would never find someone. But I was a proactive searcher! I went along with one of my friends to a desperate and dateless ball.  It was Valentine’s Day.  And as I gathered my nerves and walked in I recognised I was definitely desperate… to be anywhere else!  My heart sank.  I made a beeline for the bar.  The only man among the crowd that even tickled my attention was talking animatedly to a Morticia lookalike.  I thought ‘if that’s his taste in women, he won’t look twice at me in my LBD and french chignon’.  And proceeded to drown my sorrows.

After about five plastic cups of chateau cardboard, I returned to the bar for my sixth. And there he was, Morticia’s mate.  He smiled.  I sidled up to him and said hello.  He spoke back in the most delicious English accent;  “Where did you disappear to? I saw you at the start of the night but couldn’t find you again!” He followed me out to the steps and we sat there until the wee small hours, talking. Even when the couples were emerging from the hall like it was the ark, in two by twos; we were still talking.  We watched them stagger out and off into the night.  He told me about his ex, he learned about my History of Men.  We were both divorced.  Both of our exes had cheated on us.  We talked until even the organisers had filed out of the hall. And carried on talking all the way to another nightspot.  Then, when it looked like time to go, he called me a cab. I had hoped he was going to make other suggestions (!) and so, when he called me a cab, I felt sad. I wondered if he hadn’t felt the connection I had felt.  I was a bit taken back by the gentlemanly approach.  He told me he would call me the next day.  Yeah right, I thought. I didn’t believe him.

But he did.  He rang!  We went out for dinner together the very next night.  Our eyes locked, we talked about books we loved, we covered the contents of the whole universe! We talked about love and loss and the language of trust. We laughed and ate great food and somewhere in that memory of that night is a moment.  He is looking into my eyes and I am knowing.  Knowing that he belongs with me. He felt that moment too.  We return to that moment whenever we are alone together.  It was the beginning of something important. Even now, we sometimes talk about how easy it would have been to miss each other.  To be living in Auckland at the same time, but never crossing paths.  I am grateful for the desperate and dateless ball.  For the cheap wine.  For Morticia (who turned out to be his flatmate). For the aligning of stars and the convergence of fates. And I’m glad that I didn’t give up searching.

But I wasn’t the smartest girl when it comes to love. I second guessed myself, as any serial dater would: was he right for me?

After we had been going out for some time, an ex boyfriend of mine came back to Auckland.  This guy told me that he was certain we were supposed to be together.  It threw me into a tailspin.  I told my man about what was happening and how I didn’t know what to do.  Had I taken the correct path?  Was I on track for happiness, or poised for disaster?  He nodded his wise head and suggested that we should break up. I should take my time and go and work it out.  So, that is what I did.  My Mum was horrified.  “He won’t wait for you to work it out Rachel” she said, “You’ve lost a good man there”.  During the whole time that I was figuring things out, that good man would invite me out for coffee.  We’d talk. A ten am coffee date would turn into pre-dinner drinks.  But he never pushed beyond friendship. We just talked. As the months stretched out I began to wonder…

He was always kind, always available to me. He talked to me with respect and felt comfortable talking about his feelings. He was sensible, cautious, careful.  He was reserved, but when he laughed it boomed out of his six foot four frame and shook the ground.  His natural tendencies were the opposite of mine.  Where I was spontaneous, he was a planner, when I was loud, he was quiet.  Where money ran through my fingers like sand, he was fiscally responsible.  And his values were solid. He prized trust above all things.  He spoke my language.

The other guy, my ex, was exciting.  A bit reckless even.  He had a capacity for needing me that made me feel important, even essential, to his life.  He wrote poetry and could turn a phrase into a thing of beauty.  He was deep. World-minded. Political. Complex.  But somehow, I couldn’t rest with it.   It occurred to me that I had spent so much time falling in and out of love with men I was attracted to;  and I was attracted to the wrong sort.  I had to make a decision with my head, not my heart.

And that’s what I did.  I chose the hubster.  With all of my head. And you know what?  The heart followed swift behind.  This time I knew without reserve that I had made the right choice. I was so fortunate that he was prepared to wait for me, to give me the respect and freedom of time to choose.  He was a good choice for me for all the right reasons, and none of the old reasons.  He was the start of something entirely new for me.  A relationship on equal terms, spoken in the same language of trust, built on a solid foundation. A healthy relationship.

My Mum was happy too.  

I’m glad to know that she approved.  I’m glad I made that decision when she was still with us.
She was right you know.  It’s a good thing to be married to a man who is good with his hands, responsible with money and who carries good values.  I have been so cared for, so nurtured by his magnanimous heart.  I know I made the right choice.  By then, I had kissed more than enough frogs in my quest for my handsome prince.  And I found him, there on the steps of Hopetoun Alpha. My prince. My happily ever after.

I’d love to know your love story.  Even if your story is about finding a love you haven’t met yet.
I am a sucker for love stories and I love finding out what brought two people together.
How did you meet your main squeeze?
How do you hope to meet them?
How did you know?
What was the clincher for you?

Let’s talk about love.

And honey?  Here’s to you:

Treat Me

Last year on the 24th October, I wrote a post for the Living with Bob blog.  Michelle hosted guest posts on her site to mark awareness month for Dysautonomia. It was the first post I wrote about my frustrations with a doctor. I usually get along great with doctors, but occasionally their pre-conceptions get in the way.  Sometimes it is their egos or their ignorance in the way.  This afternoon I saw a very clever and very personable immunologist who specialises in neuro-immunology.  I didn’t even know we had such a rare-feathered-fella in New Zealand.  But we do!

He took such a long history from me that I had to ask if I could lie my head down on his desk!  A few years ago I would have been too embarrassed to ask if I could do that.  But I’m a bit more vocal these days.  He was a very good doctor.  And he even unlaced one of my converse high tops and pulled it off my foot when I needed to get up on the table to be examined(!)  Far out.  Didn’t know that was included in the service!  One bloke on each foot, taking off my shoesies!

The news is that he wants to try me on a six month course of immune modulation therapy.   He is just getting all the paperwork in order and discussing it with his colleague.  He’ll get back to me.  I had to double check with my hubster as we left that he really did say that.  Yep, he really did.  I was amazed too, at the beginning of the consult, when he asked me why I was there, I explained that I have a list of possible causes and I can’t rest until I know I have checked them all out.  He thought that was “fair enough”. It amazes me that some doctors understand why we continue to search for answers and others don’t at all.  Then he went through a paper with me from one of the world’s best Autonomic Neurologists.  Steve Vernino.  He knew who Dr Vernino was (that’s a first)!

I think when I wrote a few weeks ago: ‘catch me I’m falling’… I got sent a few doctors to do just that.  I am so grateful.  For me, but also for others with Dysautonomia in New Zealand. If this story has a positive ending, it will raise awareness amongst the medical community and make a difference for how patients are treated here.

This is my piece from last year:

Sweet Thing

source: worldsweetshop.blogspot.com
source: worldsweetshop.blogspot.com
 

In the past couple of years, my care has been transferred from my Cardiologist, to the General Medicine department of our local hospital.  My General Physician is a specialist doctor who coordinates the other specialists who care for me and they all consult with him as the primary doctor who oversees my case.  In addition to the General Physican, I have seen a Neurologist, a Neural-Opthalmologist, a Gastroenterologist, a Cardiologist and a Urologist. They all see me through their out-patient clinics unless I happen to be admitted for something. I really like this model.

Until recently, my Main Doc was a really lovely, really clever, experienced physician who was involved, interested and not afraid to admit that he needed to find out more. He wasn’t threatened by me, or my lists, my folders or my frequent email attachments.  He wasn’t even threatened by my six foot frame and it’s wobbly instability.  He understood that I wasn’t trying to be an annoying patient.  I was just trying not to be a patient at all. He suspected that I have AAG.  Autoimmune Autonomic Ganglionopathy.   The idea is that the immune system has turned against the Autonomic Nervous System in error.  It begins to pick off autonomic ganglia, preventing the usual messages from getting through, throwing out homeostasis. And this thinking meant that he was open to the idea of my problems being treatable.  That concept, for me, for anyone facing a progressive illness, is the equivalent of being a kid in a candy store. Treat me!  It’s the nirvana of chronic illness. The delectable hope! Shiny, sweet gorgeousness!

But oh! There I was in the candy store, staring up at the jars, salivating. And it occurred to me that I couldn’t just buy what could make my dreams come true.  I didn’t have any currency. The benevolent gentleperson with all the buying power was about to leave the store.  And he did.  The hospital moved him into another department and transferred my care to a new General Physician. One who hadn’t gone through the lengthy discussions with me about the candy and the possibility that maybe, I’m worthy of having a bag of bulls-eyes (immune modulation therapy). My new Main Man prefers the sit-and-wait approach. Main-Squeeze and I at first, politely inferred; then, referred directly to the last doctor’s findings, suggested and finally pleaded for some more action, some attempt or nod towards trying.  He just took off his glasses, said we need to face some realities. Sat back and said that he would like to simply ‘watch’ my progression. Candy shop shut.

The research in this area shows that if indeed I have AAG, the nerve damage that continues to occur over time is unlikely to be able to be reversed.  So I don’t want to wait while he observes more progression.  I want to arrest the progression.  I need to, in point of fact.  Because, like all of my fellow sufferers, I have a life that I need to get back to. A husband who wants a partner in every sense of the word.  Children who need their Mum in ways and at times that I can’t always be there for them.  And a host of other brilliant things that are out of my reach with things the way they are.  Things that would have been, if I hadn’t got sick.  I’ve got some potential to fulfill.  And although the new Main Man doesn’t know it, I am worthy of the attempt.  Aren’t we all?  There aren’t very many of us.  It’s not like there’s going to be a mob looting that candy shop.  And we are very polite, on the whole.  Except for inside our imaginations, where occasionally, we slap people who don’t want to try to help.

I don’t have the antibodies which prove AAG.  In fact, 50% of AAG sufferers don’t.  But there is still a good chance that I would respond to immune modulation therapy.  So, I am standing in the candy store, alone.  Looking up at that candy.  Just wishing that this new doctor would come striding in and say “A bag of bulls-eyes for the little lady. Quick, now, don’t delay!  She needs them!” And maybe, you know, it could happen; he could treat me.

——————————————————————————————————

P.S The doctor who is helping me, knows about me because I kept pushing to see someone.  He’s the one who strode into that candy store on a wave of good connections.  Somebody knew somebody who might be able to help.  He rode in like a gunslinger from the wild west, a justice rider. And I can’t help but think, if I had left the store, or tired of asking for help, I would be back where I was, making no progress and suffering my slow decline. But I didn’t stop asking.  I didn’t stop pestering.

Is there someone you need to ask about something?  Don’t give up, don’t settle.  Maybe you were supposed to read this today.  It is exhausting keeping up the fight.  But life is too beautiful not to try.

Help, I’m Falling Apart


…the glue that holds our parts together, isn’t holding me!

One of the all time favourite picture books in our house is Tedd Arnold’s “Help I’m Falling Apart”.   It’s a funny little story about a boy who notices strange things happening to his body.  He is horrified! When his parents finally cotton on to what is causing all the distress, they sit him down and explain what bodies do.  His dismay turns into relief.  He is normal.

 

Tedd Arnold Penguin Books 2000
Tedd Arnold
Penguin Books
2000

I so wish the shenanigans my body has been up to were normal. I’ve been trying for a long time to have someone help me identify the cause of my Dysautonomia so I can treat it, and if we don’t find one, accept it.  I feel like we are closer to an answer than we have ever been. As you know, I can’t rest while there are still possibilities that might explain and inform. Something that might improve our lives!  I say ‘our’ because when I am well, my whole family will have a better life. Whatever works for me works for the good of all of us. I want to be ‘normal’ again, that’s all.  I’ve been looking for someone who can explain why my body does all these abnormal things.

You might remember that earlier this year I convinced my General Physician to refer me to an immunologist.  I really wanted to have a conversation with someone who had a passionate interest in auto-immunity.  I have always wanted to believe my problems are autoimmune in nature because then there is a treatment pathway.  I guess it is only natural that I want something that can be treated.  That’s human, right?  If I don’t have an auto-immune aetiology and that has been proven, then I can accept that and carry on with other investigations.  If all of them prove fruitless at least I will know that I didn’t leave a single stone unturned.

Today was the day of that appointment.  The immunologist, Dr Ameratunga was outstanding.  He got stuck straight into my medical history, listened carefully to my answers, took my assorted bits of paper with a promise to do more research.  And then he asked me if i would mind seeing another immunologist tomorrow who works out of his private practice.  The guy he wants me to see is a neuro-immunologist.  And just like that I am booked in to see him.  The neuro-immunologist has already seen my case and consulted on it from Wellington.  He works in Auckland one day a week. I am looking forward to meeting him in person so I can discover if there is anything further he can add.

And, I still have my little seedling of channelopathy hope perched on the windowsill of my mind.   How strange that after two years of languishing with no proactive assistance on all the other fronts, it looks like I am getting help with the other avenues of possibility too.  Lots of positive movement going on right now.  My head is hopeful. I wish it could translate some happy juju to my body.  Sometimes, even one appointment away from home can be too much for me.  Today, I can barely swallow my mouth is so dry.  I am typing with my eyes shut because my pupils are doing weird things. It is disturbing having my eyes open. Once, during a childhood argument my brother called me “A POO WITH EYES IN IT” (best insult ever).  And that is exactly how I feel.  Like a large lump of amorphous refuse. Blinking at the assault of light on my eyes, horrified by the discovery that I am in fact, a poo.

Before I left his consulting room, Dr Ameratunga said “we need to solve this”.  And I cried.  No tears though, they don’t seem to be working today.  Just that chin tremor moment.  I hope he didn’t see. It’s a big rollercoaster ride and finding caring doctors is pleasantly overwhelming. By the time the hubster and I were back in the parking lot, I wasn’t the only one with a tremoring chin.  “What a good morning!” he said, incredulous.  I smiled through my fog. I so sometimes wish I could choose when to have energy and vitality and enthusiasm.  If I could, I would have chosen that moment.  Because that’s all good stuff, right?  I’m making progress on a few fronts.

I just feel too exhausted to celebrate.

Staying In -Confessions of an Introvert

During my twenties I had a passion for going out.  I actively planned and executed a lifestyle of outings.  You too?
I liked going out for meals, going out for coffee, going out dancing, going out on dates, going out on adventures!  Ahhhh, good times.

I’m glad it was such a busy decade! My thirties have been a gradual decline of wellness.  And so, a slow erosion of the things I always loved to do. Also, I became a mumma, which makes going out more of an epic event than the spontaneous outings of life, pre-kids.

My friend is coming over this morning.  It makes me smile that she is coming over to see me.  I’ve known her since my early twenties and we have had some epic outings together over the years.  I like catching up with her.  We don’t go out anymore.  Not even to the cafe, it’s just so much easier and more comfortable to stay at home.  Most of my friends understand this arrangement.  I’m grateful they are happy to meet me here. We catch up in my living room, on the big seats with the built in footrests.  It’s a sigh of contentment, the sound of the footrest levering up.  The steam over the cups of tea, good conversation.

I prefer staying in now.  One of my favourite things to do with the hubster is hunker down in our favourite spot after the kids have all gone to bed. We choose a movie or TV episode to watch together.  We’ll probably be wearing our comfy PJs and dressing gowns. Usually I am lying in the corner of the sofa; he favours the floor, his head within reach of my hand for obligatory head tickles. Often, the fire will be going.  It’s a warm, companionable togetherness.  We might pause for a cuppa, or cheese and crackers.  The small rituals of cosiness. And there, tucked up inside the cocoon of our favourite corner, we relax.  During the ad breaks the mute button is pressed and we chat; musing over whatever we’re watching or catching up on the day.  It’s down time. Us time. Let it all go time.

I was reminded recently (thanks Alyce!) of having done the Myers-Briggs personality test.  If you have done it, you’ll know that your personality is typed by its four predominant aspects.  I am an INFJ.  These letters stand for Introverted, iNtuitive, Feeling, Judging.  This is some of what is said about my particular personality type:

“INFJs are deeply concerned about their relations with individuals as well as the state of humanity at large. They are, in fact, sometimes mistaken for extroverts because they appear so outgoing and are so genuinely interested in people — a product of the ‘feeling’ function they most readily show to the world… self-expression comes more easily to INFJs on paper, as they tend to have strong writing skills.”  You can find out more, or take the test, here.

Screen Shot 2014-09-01 at 8.15.52 pm

When I took the test, some people were surprised that I was an introvert.  See, I LOVE PEOPLE.  Chatting.  Good times. But I confess, I also really really love solitude. It’s how I recharge.  When I was still teaching, I’d climb into the quiet of my car at the end of the day and rest my head against the steering wheel, treasuring the glorious emptiness and quiet.  Bliss. Nothing is as restorative as the peace in that solitude.  And when it comes to writing, I need it.  An empty space, quiet music and just me.

My hubster is an introvert too, so we understand the importance of time away from people, for each other. Even from each other sometimes.  Time to gather our social strength again, before we head out into the fray.  We think of it as a de-frag.  A re-assignment of all the parts of our selves that may have been seconded to challenging tasks. I guess I am fortunate that I am usually happy in my own company.  Chronic illness has forced me into a place where I am more social online than in person.  The internet really is the introverts ideal playground.  We get to be social when we are able and switch it off when we’re not.  It’s good to be an introvert if life gives you a chronic illness, somehow I think it’d be much harder if I needed the company of others to recharge, as extroverts do.

I’m about to enter a new decade.  I’ll celebrate my fortieth in September.  My twenties were all about going out, my thirties have been all about staying in.  I wonder what is next for me?
Maybe the only way is up.

I’ve been singing this cute song from Lily Allen.  It makes me think of my hubster.

What’s your thing?  Going out or staying in?
What is your personality type on the Myers-Brigg’s scale?  Do you think it is accurate?

Dysautonomia or Something Else?

Something new is growing in my mind garden.
It’s just a little shoot, but every time I look at it, it’s bigger, greener and more vigorous.  It makes me want to shout with happiness!

seedling

I’ve been growing some hope.

I’m not sure if it was a bad idea to plant this seed or not.  I am nervous about sharing. I’ve been a bit mind boggled by all the science and my arts brain is struggling to take it all in.  But here is the story.  It’s got a lot to do with blogging, doctors who never really retire (!) and the fact that sharing and connecting via social media is really incredibly powerful.

I know there will be some of you in the Dysautonomia community for whom this information might be significant.  You’ll find further information at the bottom of this page.

seedling2

In May, I started this blog.  I started it because I wanted to yell my story out into the world.  I wanted a platform.  And a big megaphone.  Somewhere I could shout out loud:

“This is crazy!  This weird thing is happening to me but people can’t see it, they don’t know… and I am not coping, it’s getting worse all the time,  my doctors aren’t helping me, and I am afraid… and I need someone, somewhere to hear my voice!  Are you like me, too?  Can you hear me?”  

And you did.  The relief of knowing you care is bigger than I can express.  I can’t fully comprehend the strangeness of knowing I have had 70,000 page views, from people even as far away as Latvia… and I am so glad each and every one of you are here!  New Zealand is such a small country in a big world; we’re so far from everywhere.  But not when we connect on the internet.

It’s a small world after all.

I am particularly glad for two recent happenings.  The first was that my lovely friend Caroline from Wellington (who also has Dysautonomia)  suggested I submit some of my writing to Stuff’s Online series on ‘Invisible Illness’.  I did and they published it, here. That article was read by a retired Swedish doctor living in Christchurch.  She linked to my blog from there.  She looked over my medical history and saw some things she recognised.  And then she took the time to email me.  These important words were the crux of that letter:

“…your description of your Dysautonomia, your long QT, your hyper mobile joints, your gastric dysmotility and muscular weakness just makes me wonder if another aetiology has been considered…”

 

She went on to explain that she herself is diagnosed with a rare condition that could possibly explain a lot of what was going on with me. She suggested I make some enquiries.  That led me to seek the help of an endocrinologist.  He mentioned the word channelopathy before I did.  And so we have begun the process of looking in to this as a possibility.  Channelopathies fall under the umbrella of Muscular Dystrophy. There are a few variations of these ‘periodic paralyses’ associated with mutations in calcium, sodium, or potassium channels, causing muscle dysfunction. Skeletal, cardiac, smooth, gastrointestinal, respiratory, facial and/or eye muscles can weaken or stop working periodically.  I can’t help but think, if I am one of these patients, it would explain my problems with my heart, my digestive tract, my bladder, my bowel, my eyes and the intermittent problems I have with my gait and leg weakness. Wouldn’t that be something?  A completely different tangent to consider!

Patients can have blood results within the normal range (as I do) and still have problems with these ion channels.  It is notoriously hard to pick up in routine tests and is best investigated by genetic screening.  This test is available in Australia.  Not all genetic mutations responsible for channelopathies have been identified, but many have (80%).  Treatment for patients with these channelopathies seems a lot more effective than the regime I am currently on for my Dysautonomia symptoms.  People with channelopathies need to dramatically amend their diet, depending on their sub-type, and take a range of medications to manage their condition. But what I have read so far suggests that it is a condition that responds to treatment.

Could it be that I don’t even have Dysautonomia?  Could this other rare condition really explain why so many aspects of my autonomic nervous system struggle to work properly?

Could my story have a happier ending than the one I currently face?

I am keen to find out.  And I am not stopping until I know for sure.  I might be barking up the wrong tree altogether.  Or barking mad.  I might have planted that seedling in the wrong place and in the wrong season.  But it is a beautiful thing to be watching my hope grow for a change.  I’ve decided that even if my hopes are dashed, it’s good to have them when I can.  Hope is powerful medicine for my wellbeing.  And I might just be growing myself a TREE!

I see my endocrinologist again in two weeks time.  So until then, I am watering my seedling and holding out for some sunshine.  Wish me luck!

Have your doctors ever considered this aetiology for you?
 Have you ever heard of muscle channelopathies before?
 Do you want to know more?
Look here first:
 Periodic Paralysis International
Then here:
 Periodic Paralysis caused by diet or exercise?
And here is the only blog I could find that wrote about correlating symptoms, if your curiosity is piqued:
http://periodicparalysis.blogspot.co.nz/2005/07/maybee-family-syndrome.html

I’d love to know your thoughts!

The Reality Slap: Giveaway!

I’ve been banging on a lot lately about Mr Russ Harris.  His books were introduced to me by my Health Psychologist, Anna.  I have found his book to be easy-to-read, helpful and realistic.  Really practical.  And it is not just good for those of us with chronic illness.  It’s good for anyone who has been slapped by reality and is struggling to wrap their heads around it.  Maybe that’s you?  Maybe it is someone you know and love and you don’t know how to help them.  Russ knows.   Being a bloke, he is also a really valuable read for guys you might know who have been slapped around a bit by reality. He writes like man.  Straightforward, to the point and full of things you can actually do to make a difference.  He has suffered his own reality slap, so it’s not just rhetoric.  It’s relatable and incredibly useful, especially if their reality slap is coming to terms with a loved one’s diagnosis (how many of us know someone cracking that particular walnut)!

I am always on the lookout for giveaway possibilities.  I seriously love giving pressies, so I guess this is an extension of that.  It occured to me that I am not the only one that could benefit from The Reality Slap.  So I ordered two.  One for me, and maybe, one for you!  If you think you, or someone you know, could benefit from this book, why not enter?  Or feel free to share this giveaway with people you know who might need a chance to enter the comp.  There is a facebook share button below.

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To be in the competition, just make a comment, in around 25 words or less, below. You must use the words “reality slap” somewhere in your comment, by the end of Sunday 14 September, 2014 (NZ time). 


You can write in sentences, you can write poetry, you can use your words any way you like, but they must be your words.  Tell us how life has given you a reality slap, or tell us about someone who needs this book, or tell us why you would really love it.  You can click on the word ‘comments’ below to be taken to the comment field.
You don’t have to have Dysautonomia to enter.  We all get slapped by reality at some point.

Ts & Cs:
I will notify the winner by email, so you must include your own personal, valid email address to be eligible for winning, this won’t be visible on my blog, only I can see it.
I won’t be using email addresses for any purpose other than notifying the winner.
The prize is as stated and is the product pictured.  It is a brand new paperback copy of the book The Reality Slap: Finding Peace and Fulfilment When Life Hurts by Russ Harris.  Published by New Harbinger Publications.
For your safety, please don’t put your postal address in the comments, if you win I will email you for more details.
I am happy to post to anywhere, so don’t be shy.  Wherever you live, NZ Post can get it to you…

Although I am advertising this competition on my facebook page, I won’t be running it there.  So make sure your comment is entered below this post, in my blog commenting form, on this blog.  Not on facebook.  🙂

Good luck!

PS.  See that Dysautonomia Awareness Bracelet?  My order of bracelets for awareness month next month just arrived.  The winner of this competition will get the bracelet too!  Isn’t that rad!  Gotta be in it to win it!

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Light Relief, The Tree and Me

 

source: harrypotter.wikia.com
source: harrypotter.wikia.com

I can be a bit intense, apparently. Is that a symptom of Dysautonomia?!  Ha!
I can get a bit serious.  Because sometimes it is hard to find the funny side of things.

But I can’t ever take myself too seriously, because I have been gifted a hubster who enjoys making fun of me (in a loving way) and making me laugh. A lot. His irreverent and naughty sense of humour has lifted me out of many a blue funk.  And I just unwittingly provide him with more comedy material, so it’s a mutually useful relationship.  Just lately, he’s been taking the piss (that is kiwi for teasing) about my self help studies.

One of the very useful exercises for self-care, one that I mentioned yesterday, is using your own hand as a ‘hand of compassion’. He thought that was hilarious.  I’ve been enduring his eyebrow toggles and suggestive looks every time I mention the ‘hand of compassion’.  He reckons he knows just where my compassionate hand should land, somewhere in the vicinity of his body.   Wink.  Nudge.  Eye roll!  He had the same joke about one of my favourite poetry books Where Your Left Hand Rests by Fiona Kidman. I think he hoped it was an instruction manual.  Honestly, are all men this way?

And then we were talking about a mindfulness exercise that I wanted to write about today.  I have been learning about how being “present” can provide you with an opportunity to calm down the negative self talk.  See, when I am thinking about how my body feels, it kicks off a litany of destructive thinking. This is a very common thought pattern for me because this body likes to slap me to attention, like an annoying brother, incessantly pushing the point, digging me in the ribs, lifting up my eyelids YOU AWAKE? RIGHT, SINCE YOU ARE PAYING ATTENTION… LOOK AT ALL THE WAYS I CAN ANNOY THE CRAP OUT OF YOU TODAY!  POKE!  SLAP! BLINDSIDE! THWACK!  And so I respond to that little shit with some very negative talk.  But I direct it at myself, because that is a bit less crazy than talking to my body as though it isn’t me.  I talk to me.  Inside my head. The track runs similar to this one:
Ugh.  Not again.  I can’t keep doing this.  Oh no…  so much is eroding.  I can’t go to school this morning to see my little guy do his thing. Another thing to miss, why couldn’t it be yesterday? I could have done it yesterday.  Poor me. Poor family. Ow… Yuck, that is so revolting, why do I have to deal with so much yuck stuff? How much worse is this going to get? Will my man get tired of dealing with me? My kids! Will I end up in a stinky nursing home, a drain on my family’s resources? Will I die before I’m ready?
And a freak out will be had.  Does that sound familiar?  Does your mind talk to you this way, too?

It is impossible not to be mindful of how my body feels. But by using the technique of mindfulness, it is possible to arrest the thinking patterns that give me anguish.  It’s like a kind of meditative awareness. So this is what I am doing.  Russ Harris (author of the book I talked about yesterday, The Mind Slap, and inventor of this exercise) says that if you are experiencing a lot of stress, you might need to do this excercise often.  It designed to help you be present with your pain. It helps you to develop the awareness of your thinking such that you don’t slide into the thought patterns that distress you.  The habit of that nasty self-talk that makes living with Chronic Illness a more scary, lonely, upsetting place to be.

THE TREE __ An Exercise in Mindfulness(4)Of course, if you are horizontal, you just have to adapt the tree image.  You can use your imagination about how to make the trees roots, trunk and branches work.  If I am stuck in bed, I use the foot of my bedframe to ‘ground’ myself. Or place my feet flat on the mattress with my knees up. Just adapt it to fit you, in your minds eye you can be any shape you want to be.  Here’s my audio version if you would rather listen:

 

 

So anyway, there I was last night, sitting in the living room, thinking about some serious shizzle.  I see my hubster out of the corner of my eye.  He is waving his arms around like he’s trying to get my attention.  I turn to look at him and all six foot three of him is doing an impersonation of a whomping willow.  In slow syllables he intones: “I am a tree…”  and I snort my tea.

Mindfulness is really good.
So is light relief.

 

Words Don’t Come Easy -How to Help Yourself

and
How to Help Others Help You Too.
Source:www.writeawaywithme.com
Image and Words by Michael Leunig

Today’s post has been inspired by some homework from my Health Psychologist, Anna.  She is a pretty savvy lady and I really got a lot out of the chapter she gave me to read.  It is called A Caring Hand and it is from Russ Harris’ book, The Reality Slap. Sometimes there is a gap between reality and what we think it should be.  Sound familiar?

Like the difference between the me I see in our holiday snapshots, and the saucy model I felt like I was!

Or the way you think other people should treat you and the way they do.

If you have a chronic illness, this reality gap is something you deal with every day.  Maybe even in relation to those closest to you.  It’s really hard for people to know what to do, how to be.  It’s really hard for people to sustain their compassion, it can be exhausting.  Even those closest to you sometimes need some respite from approaching things in a sensitive way.

Some of us are on our own for a lot of the day.  That’s just reality. And that is when we can really help ourselves, rather than looking to others to meet our emotional needs.

Before I carry on I want to explain the origins of the word compassion.  It derives from the latin.  Com meaning together and pati meaning suffering.  Suffering together.  But how can that apply when you on your own?  I am discovering that you can be your own best friend.

Bad things happen to everyone. And when they do, we naturally hope for kindness from those around us. When something painful happens to you, like a difficult diagnosis, a death in the family, a marriage break up,  a miscarriage or a catastrophic loss of property… there are so many things that might constitute a reality slap… it is natural to seek comfort. It’s instinctive to seek support. Do you remember the peace that comes with a warm and sensitive response from someone close to you?  Maybe it was one of these responses?

Hello(7)

These responses all communicate how much a person cares about you and your situation.

And then, there are the other responses. The ones that fall through the gap.  They are common responses in society because we have failed as a community to teach each other that they are not useful.  People don’t know. I think it is really important to remember that these responses often come from a place of good intentions, even if they are not sensitive:

Hello(9)

Proverbs and quotes are tricky territory. These may in essence have truth for the human condition, it’s probably why they have become popular.  But they can be invalidating and unhelpful.  They ignore the pain you are experiencing and can feel judgmental.  The hidden message of all of these types of platitudes is “Harden up, look on the bright side, it can’t be all bad”.  When some days, it just is all bad.  Here is what Harris says about that, “If they are the first thing you say to someone who has just been slapped by reality, you will come across as uncaring or offensive… as a general rule, a compassionate response must come before anything else. If someone leaps in with advice, proverbs, positive thinking or action plans without first demonstrating his or her compassion, we are likely to feel upset, annoyed, offended, hurt or irritated -often without quite realising why this is”.

Some of the responses in the second group can actually be really helpful and practical, if they are preceded by caring and empathy.

Mind the gap.  It’s easy to fall into it when someone responds to you from the unhelpful responses.  But we don’t often enough consider how we are responding to ourselves.  Helpfully, or unhelpfully?
Ask yourself:

Who is the one human being who can always be there for you in your life,
in any moment, no matter what happens?
Who understands you better than anyone else on the planet?
Who is the only one who knows how much you are suffering?

You.
Harris suggests that because we are always available to ourselves, we can always do something to help ourselves, even when we think we can’t.  We can be our own first responders. Many of us do, already, practise excellent self-care. Many of us have learned by necessity to nurture ourselves through suffering. But sometimes, our self talk is more like the second list of responses. I know for myself, that I tell myself to harden up all the time, to push through, to stop being pathetic.  I can be more harsh with myself than anyone in my circle and I frequently am.  He suggests that the relationship we have with ourselves should be similar to one we would have with a best friend.  Imagine, if you always had that friend there to be kind to you when you are struggling?

Self compassion is two-fold.
There is being kind to yourself…

Screen Shot 2014-06-18 at 8.00.12 amResting your own hand where you feel the most pain, as a hand of compassion, allowing yourself to relax and accept the warmth of your own kindness.

Screen Shot 2014-06-18 at 8.00.12 amNoticing when your mind is being harsh with you and gently telling yourself what your kind friend would tell you.

Screen Shot 2014-06-18 at 8.00.12 amAllowing yourself the time you need without judging yourself.

Screen Shot 2014-06-18 at 8.00.12 amReminding yourself that you are deserving of compassion and it is okay to give it to yourself.

…and there is being present with your pain.

It might be your illness, your grief, your suffering.  Or all of these things.  Being present with your pain might be something you are horrified at the prospect of. Here, ‘being present’ is used by Harris in the context of mindfulness.  My homework chapter ended at this point, so next visit I will ask for more.  I am keenly interested in how mindfulness might help to diminish my negative feelings about this illness.  Do you think it might help you too?

For now, I am going to lay a warm hand on my own shoulder and say some kind things to myself for getting this post written.  It has been a tough morning, symptom-wise and I have a big afternoon ahead.  If your own hand of compassion is not enough, get online, join a support group.  Don’t give up.

I hope you can begin to be kinder to yourself today.  Mind the gap, don’t fall in.  It’s good to remember you can make a beautiful bridge to stretch over that canyon.

More soon, I’m seeing Anna again tomorrow.  Watch this space.

PS. Here is a song I heard on the radio just as I finished writing this post.  I always notice the songs that play, I’m sure there’s reasons for them.  This one I am singing for me.
Sometimes finding kind words for ourselves isn’t easy.

Words, don’t come easy, to me
How can I find a way, to make you see
I love you,
words don’t come easy.

And here is a link to Russ Harris’ book The Reality Slap

 

 

 

 

The Lament for the Numb

Listen to Dave Dobbyn singing his Lament for the Numb. 

Dave Dobbyn: Album Cover. Beside You. 30 Years of Hits.
Dave Dobbyn: Album Cover. Beside You. 30 Years of Hits.

Life is so busy.  I know. It’s nicer, warmer and safer to cocoon ourselves into the business of each day and shelve the big issues.  Maybe you’ve been hurt, or you are over it all.  Maybe there is nothing left after you’ve dealt with your day. But if you could pause and think about it, what are the things beyond your daily life that you care about? Deeply? What are the things that worry at the back of your mind, the things you wish you were taking some action about?

I care about kids abandoned to poverty, poor choices and the cycle of violence.  Kids who don’t even get breakfast before they start the school day. I have seen the fallout from that first hand when I was teaching in low decile schools, it worries me for the future of our country.

I care about the 27 million human souls trafficked as slaves, their voices screaming into the void, unheard.  I can’t even comprehend the enormity of what a number like that means in human terms.  Twenty seven million individuals, as important as you and me.  

 

She is a survivor of sex slavery. Kidnapped by an armed group at the age of 13, she spent the following three years under its control. Her life depended on the will of her commander, who forced her to transport dry minerals during he day and raped her nightly as his "wife." Forced marriage and its connection to enslavement remain poorly understood.  Source: freetheslaves.net
She is a survivor of sex slavery. Kidnapped by an armed group at the age of 13, she spent the following three years under its control. Her life depended on the will of her commander, who forced her to transport dry minerals during he day and raped her nightly as his “wife.” Forced marriage and its connection to enslavement remain poorly understood. Source: freetheslaves.net

I care about educating girls about how powerful and significant they are for our future.  In some countries girls have no voice and no choice, but even here in our pocket of peace, where we have no wars, no corruption, no excuse; we are not doing nearly enough to empower young women who do have choice. Why do we continue to diminish and reduce them to a two dimensional image of value, until poor self esteem boxes them into small lives?

 

Source: a girlsrighttodream.tumblr.com
Source: a girlsrightto dream.tumblr.com

Why can’t we all be kinder?  I care about the numbers of people ending their suffering through suicide.  The immeasurable sadness left in their wake. I want to gather all the sad, suffering people up into an enormous embrace.  Why can’t we look out for each other better?  What stops us from helping people who are in pain? Why don’t we ask… are you okay?

 

source: herphany.tumblr.com
source: herphany.tumblr.com

And I care about all the people suffering from poor health.  It’s everywhere you look, hideous epidemics like cancer. Such an insidious enemy, robbing people of their loved ones. I care about finding a cure. If we had a cure, I’d still have my beautiful mum.

And I care about the millions of people like me, suffering from ailments that are poorly understood by Medical Science.  Chronic illnesses are long term, vitality sapping problems without adequate research funding to create studies that will improve our quality of life. For every patient who languishes in a health system that cannot help, bowled over by their diagnosis, there is a family, suffering alongside.  There are kids, husbands, siblings, grandparents and dear friends, required to take on more than they can.  There are sacrifices and prices to be paid that will be felt long after the patient has gone.

 

Source. amf.com.au
Source. amf.com.au

I feel passionately about these things. What are your deep concerns in our world?
Pia, one of the fellow students of my blogging course, is running something called a link-up.  She sent out the call for us to write about something we care about, providing links for taking action.  The power of social media is bigger than just making connections.  So I resolved to write this post about that something I really care about, with some useful information and ways you can help, if you want to.

But I care about a lot of things.  And my magic wand is broken.

So, here are the ways that I am doing what I can about the stuff I care about.   Until that wand is fixed, doing something is better than doing nothing.  If you want to join me, here is some information and links.

To donate to or provide sponsorship to the wonderful programme that is helping impoverished kiwi kids to get breakfast and basic clothing, have a look at KidsCan.

To learn more about the horrific realities of contemporary slavery, watch this TED talk, please watch all the way until you see the images of what a reunion after liberation from slavery really looks like, look at those beautiful mother faces, I dare you.
To
 
find organisations working to help those caught in the human trafficking trade, see this directory.

For a website aimed at empowering young women in first world countries, check out this phenomenal resource:  AMightyGirl

To help raise money for Ovarian Cancer Research, you could host a “morning teal”, you can go here to find out more.  Or to join the community of people in New Zealand with Familial cancers related to the BRCA mutations, go here.

To donate to the only Australasian research that is currently happening in the field of Dysautonomia, go to my friend Michelle’s fundraising page.  Help me to do my bit for Dysautonomia awareness and research.  We are a small number of patients, but each one of us is a precious human being who is desperate for more answers.  Maybe your bit will help?


And I care about YOU with all my heart.  You have a battle on your hands, no matter who you are, no matter what your life’s story is.  You are human.  It is a pretty raw state, it hurts sometimes.  Sometimes you feel so numb. Even if you can’t see the hands reaching for you, they are there.  Take action. You can grab hold of a hand, or even just let one grab yours instead of pulling away.  Connection is what keeps us all together.  If you have been feeling like leaving, please don’t.  Grab hold of a hand, or ring for help, set the wheels in motion.   Look here, or call these good people, or talk to the people you love.

And if you are reading my blog because you too suffer from a chronic illness, here are some things you can do to practise some self-care  I have them on good authority, my Health Psychologist gave me a chapter to read for homework last week.  It’s called “A Caring Hand” from this book; The Reality Slap by Russ Harris.  My Psych is a good ‘un, so I am passing on these nuggets to you.  I wish it were my own, real caring hand that could rest on your shoulder today… do know that my heart is with your heart.

Thanks Pia, for your wonderful call to action.  

Little Guy

Since Kellie‘s sudden passing, my thoughts have turned often to digital legacy.  The footprint we leave behind with our internet published words.  I’m sure Kellie’s family find her words a gift to treasure.  I know I do. And so I decided that I would write posts for my little family.  A small word-legacy of my own.  I don’t see it as morbid, just sensible. We should all consider what might be left of us, for our loved ones if something should happen.
And in the end, something will happen to every one of us.
I still have a few letters from my Mum that escaped being culled over the years.  I love to read them and hear the words she wrote just for me.  Recently I wrote some words for
my girl.  Today, it’s the turn of our little guy.  One day he will be taller than me, with whiskers on those cheeks!  I can’t imagine it.  But I know that even then, he’ll still be my sweet little boy, always my baby!  And he may want to read my words about him.  So, Zed, today’s post is all about you.  Mwah!

Little Guy, when you were born it was a sunny Spring day.  The weather was as hopeful as we were.  A new season was certainly on its way! Your birth was brought forward three weeks because of my health. Just as well really, because the scans were showing us that you were already a very big boy! We arrived at the hospital early and I laboured, thanks to a very kind obstetrician, without pain, for eight hours. Then: there you were, completely perfect, so big and so content.  I was so surprised, it really was that easy, a dream delivery and a delightful baby. You didn’t make a peep.  You just looked up at us while your Daddy and I grinned.  Hello, you seemed to be saying to us.  I’m here, let’s get on with stuff!

You were an alert, contented little guy right from the start.  We had your day bed out where all the action was and you would sleep when you wanted to, oblivious to all the noise.  We knew when you were awake because you woke singing little “traLAla!” songs.  What a happy sound!  Your little face, a picture of happiness, sweetly peeping over the edge of your blankets, your legs kicking when you wanted to see more of things.  You adored the jolly jumper and would swing wide, giggling as you swung back, kicking out your strong little legs for a bigger jump.

No one could make you laugh quite as much as your big sister, I have gorgeous pictures of you two, sharing jokes no one else understood. And from so early, you began to use your considerable skill to get your way.  Those eyes would arch up into a teasing grin and few could resist your charming ways.  As if that wasn’t enough entertainment, your quirky sense of humour has had us falling apart with laughter for years, and here you are, only six. Your presence in our family has changed things around here and we like it!

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You are a unique fella, Zed.  There’s no one quite like you.  You think differently, and I love that.  You remind me of your uncle, so often that you hear me call you by his name sometimes.  Not because you are like him, but because like him, you walk to the beat of your own drum.  You are equal parts charming and mischievous.  And then you disarm us with a sudden display of sweet affection, your arms wrapping around us, your kisses hot on our faces.   You like to dance (in your own special mix of break-dance and ballet) and put on shows, you tell us you want to be an actor.  You are a fidgety fella, but then you surprise us with your attention and composure when you are interested in something.  I will always remember the time I was playing classical music in the car, Bach I think, and I could see your little eyes welling up. “Mum, why is this music sad?” you asked me.  You respond to music with a sense of feeling most little guys don’t have. You are a study in contrast, a sensitive soul and a typical boy, all rolled into one busy package.

When you were about four, you told me a little story that I will always treasure.  You told me that before you were born, you flew around the world until you found a girl you wanted to be your mum.  Then you told God, “I want that one”.  You told me that She said yes.  I like lots of things about that story.  You tell me now that you love to write, even though it is a difficult dyslexic process to get those great ideas out on paper.  But the struggle doesn’t stop you loving to tell stories.  Keep telling them Little Guy.  You’ve got great stories.

I feel sad that you have never known me as a well person.  Even when you were in my tummy, I was constantly dizzy, tired and sick.  I hope my efforts to mitigate the impact of my illness on you have brought you the best version of me you can have.  I hope it’s good enough. You were a gift child and I am grateful to you, because from the very beginning you made it easier for me, sweet boy. You were such a good baby, a good feeder a good sleeper and an all round sweetheart.  Until… we reached the age of little-boy-grossness and the hilarity of farts, smelly feet, bogeys and a fascination with all things icky!  But I’m sure it will pass…?!

Before you came along, we’d been trying for some time to have you.  But Granny was really sick and everyone was so stressed.  I think you eventually came along at the right time, but I so wish she had seen your sweet face.  My goodness she would have loved you so much, Zed.  She would have wanted to smother you with kisses and special Granny cuddles!  We chose your name because of her.  We are not religious, but she was a woman of faith, and your name means “The Lord has remembered”.  It would have meant a lot to her.  And we wanted your name to stand for something bigger; see, you are a continuation of a long line of people. So many stories and souls worth remembering, sweet heart.  So many people whose lives have contributed to yours, so stay in touch with your extended family.  They are just like that funny saying Aunty Cath sent me on a calendar one year:
“families are like fudge…mostly sweet
with a few nuts”.

I don’t know what your life has in store for you.  But I know that it is significant. There is something special about you, something different and important.  Don’t try to hide your uniqueness little guy.  Be who you are and spread the gift of your charms around, people feel special when you fix your attention on them.  You bring joy and validation to so many people when you see them for who they are.  Remember your gifts and use them.  Someone once said that the meaning of life is to discover your gift, then the purpose of life is to give it away. I don’t know who that was, but they were on to something. You have been bestowed with many gifts and the ability to give much.  If you are ever in doubt about what to do? Do that.

 

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