Warning: This post may not be your cup of tea.

 

 

https://www.facebook.com/VintageHeavenAtNo7
SOURCE: https://www.facebook.com/VintageHeavenAtNo7 (used with permission)

This post uses accurate words to describe body parts.  If you don’t wish to read about the private parts of a woman’s body, please look away, click on over to somewhere else. I fully understand.  Not everyone feels like it is a topic for discussing in a public forum. I do, because I care about women, about the alarming increase in real-body-loathing. And I am a mum of a girl, so I care about what is happening to our perception of women in all facets of the media.

I’m writing about bodies. Girl bodies. Women bodies. They are strange things.  There are wobbly bits and wrinkly bits and saggy baggy hairy bits. We all have little oddities about our bodies that make us uncomfortable.  Aspects we wish we could improve, or align with our idea of ‘normal’.  The idea of what is ‘normal’ starts when we are very small.  Maybe our Mum’s are a bit paranoid about some aspect of their appearance.  They survey themselves in the mirror.
Just as you exclaim, breathily “you’re so beautiful…!” she says
“I look AWFUL!  Look at my big bum/ tummy/ long neck/ stumpy legs”.  She is frowning at what she sees in the mirror. And you realise then that any, all of those things must be bad, not normal, sub-optimal.

You get to school and there are ‘right’ ways to do your hair, scrunch your socks and even ways to walk and stand.  You know that these are the ways to look because that’s how the coolest girl looks. Everyone likes her so much, so you try to look like her.  Then one day someone passes you that teen girl magazine.  The faces are all so beautiful.  Their skin is so dewy and pore free.  There are no pimples. Their clothes look brand new, there is no dust on their shoes. Their teeth are white and their eyelashes inhumanly long. Like their legs and arms.  They don’t grow any body hair. You sigh with a feeling of admiration and despair. Somehow, the bar has been raised even higher and you don’t know if you can reach that kind of perfection. But you know you want to.

Then you are at University. It’s a time of discovery. Relationships.  You discover all the ways your body works to deliver an adult kind of fun.  There is an awkwardness to your first naked encounter. Your partner is kind and lovely, but clueless. He surveys your nudity and notices the things that make you different. By now, being different is something that you know is bad.  Like big bums, hormonal skin, body hair, and cellulite. But he’s talking about a part of you that can’t be changed by diet, or makeup, or waxing or careful clothing choice. Your most private parts are different.  You sink far into yourself, deeply ashamed. You are different.

You visit some friends in their flat.  They’re so cool. She’s so happy with herself, so confident, that she is even fine with her boyfriend having a stash of porn on the coffee table.  You wish you felt that confident. You pick up one of the mags. The title is the plural of the ‘c’ word. It’s like a catalog of close-up vaginas. You are shocked, but incredibly curious, because you know you are different down there.  You’ve been told that. And here are hundreds of vaginas to look at, you flick open the cover…

What is normal?

Most women don’t know. We don’t sit around and compare our privates. If you are part of my generation you probably never saw your Mum naked.  The diagrams on tampon boxes aren’t even helpful, a few discreet lines to indicate the (ahem) possibility of labia. The only graphic images we see, if at all, will be courtesy of porn.  Deliberately or inadvertently, the vaginas we, and our partners, will compare our private parts to have been aesthetically modified for the porn market. That horrifies me. Some vaginas do look like that, but they are not the only way a vagina is.

For a start.  They are bald.  I have had the privilege of seeing some vintage seventies porn. Those vaginas are not bald, or even trimmed. The males are not viagara’d, but that is another issue.  It seems that we have come a long way in our media portrayal of sex itself. Modern day vagina images are also photoshopped, trimmed, ‘tidied’ and tucked away.  The labia are absent, the clitoris has been allowed to remain. But how far away are we from the thinking that drives genital mutilation in other cultures? And women everywhere are driven to emulate these unrealistic vaginas. Labia removal; ‘designer vagina’ surgery is on the increase. Self mutilation. Is this because we ourselves want bald beavers; baby bits?  Are we not alarmed at all, that soft-porn vagina images look like little girls vaginas? Aren’t we allowing the media to teach men that ‘little girl vaginas’ are sexy? Aren’t your internal sirens blaring? Are we not connecting it in any way to pedophilia, easier not to think about that, right? We must think that the child vagina aesthetic is reasonable. Because many of us do go under the knife. Surgery is incredibly painful. Depilation is also painful, let’s not diminish that! A torturous maintenance chore. Would men commit so many dollars, forbearance and hours to taming their tackle? Would they surgically change their scrotums? I doubt it. We might think we want to be ‘normal’, but what constitutes normal needs to be based on reality, surely. Who is going to stand up in defence of the real vagina if not us?  Women.

For most of my adult life I have suffered under the burden of my imperfections.  If I hadn’t got sick, I’d probably still be worrying and wondering about how I could change the way my body is.  I’m not the only woman who has been obsessed with this issue. ‘If I could only fix this…’ sound familiar?

Getting sick has given me a different perspective.  Given, literally, because it is a gift to see it differently. A relief to put the ‘expectation’ of society into an accurate context. Whatever ‘normal’ is for society, it is no longer ‘normal’ for the human body. We have to stop the stupidity.  Cosmetic surgery for non medical reasons is dangerous and un-necessary. The ‘bits’ we need to fix are in our minds. If our bodies work we are fortunate beyond measure.  If we are healthy we are gifted with opportunities to use our bodies with joy.  We should celebrate every fabulous wobbly and weird bit of them.  Bodies are beautiful. Just the way they are.

I want a future for my daughter where her beautiful body is a comfort and a joy to her, just as it is. In all it’s human reality. Where she can stand naked in front of a mirror and breathily say
 “you’re so beautiful” to her own reflection.  Because she is.

The following documentary excerpt was sent to me by a friend. It is why I wrote this piece.  It is GRAPHIC, so if you are squeamish or uncomfortable about surgery, genitalia or discussing vaginas, please don’t press play. If, like me, you are concerned about the state of thinking in women that leads to body loathing, please watch.  I’d love to know your thoughts on the issue.

 

LABIAPLASTY: Hungry Beast, ABC1 from Ali Russell on Vimeo.

Drowning in the Wake.

I hear footfalls, voices.  Light shifts the shadows on my eyelids.  But I cannot move. I am suspended, somewhere between asleep and awake. Is it night? No, I can feel the warmth of the sun, a band of warmth pinning my legs to the bed.  It slides through the window, deceptively light. How does it imprison me here, a concrete statue, prone? I try to lift my head but it won’t move; my mouth will breathe in, breathe out, breathe in, but will not make words.  I cannot cry out.  I try to calm myself by listening to my heart; it is panicky fast, I try to slow it down with my mind. Count it out. Calm down. Settle, girl. You’ll be alright. I listen, numbed, to the sounds of people who cannot hear me. The air is heavy, thick with exhaustion. Gravitational pull beckons me deeper into the mattress, further into the earth, I am sure I can feel the world turn, I am deep enough in to hear the thrum and lullaby of life itself.  I acquiesce. The grey forgetfulness of sleep is soft around me.

The morning waking is difficult, always a transition of struggle. At first I become aware of myself again; the feel of the sheets against my skin, the ambient sounds around me. I check to see if I can move. And then I am wading out into the waves of waking, pushing my legs against the tide of light and life. Daylight foams around me.  The cold air smarts against my skin.  I am fighting to stay upright on the shifting sands, eyes open, forging forward into the wakeful time. Into the white light of morning.

 

Ivan Aivazovsky (Armenian Painter) 1895
Ivan Aivazovsky (Armenian Painter) 1895

“How are you today?” he asks me, hopeful.  Hopeful that today might be one of the good ones. I always know, in this moment.  If the waves of wakefulness break high and the sea spray drowns out his voice, I know that I am in the path of the storm for another day.  If the seas are calm, and pushing into the day is easier, I might smile, roll onto my back and float into the sunshine.

Becoming vertical takes time. Walking the short distance to our bathroom is like controlling a marionette from the rafters.  The strings are loosely tied and my gait comical. My legs are heavy and unresponsive in the mornings. The messages seem to take so long, the feet on the ends of my legs don’t feel like they are owned by me. They drag.  I walk by employing a swing and heft of the hips. I keep my head down, hobbled over, reaching for the walls, doors, furniture. As fast as I can I swing and shuffle myself into the bathroom and sink down onto the toilet seat; head on the bath to still the oscillations of vertigo and nausea.

I have learned to take the mornings slowly. To find the gentlest pathway into the upright world. It isn’t easy to stay afloat among the surging tide and rush of a busy family. They are preparing to cast off from the jetty, speed boat engines revving. I tread water, take my medications, open my arms for morning snuggles before the children eat and dress. I manage my horizontal hairdressing duties and tie adjusting. I am the director of movements while my husband shoulders the load. I am the strident voice of mother; teeth-brushing reminder, final inspector.  And then they are gone and I sink into the peace of my quiet house, letting the day arrive on my time scale. Letting what will be, be.

When finally, my head has given me more clear stretches than dizzy, I swallow back on the nausea and swing my legs out of bed for the second time. I sit there for a bit, bracing for the stand.

I am surrounded by the water.
It swings strong around my legs, trying to pull me under. I kick, cycling against the current. I will not drown in the wake. Not this day.

…and Climb

Ko te pae tawhiti whaia kia tata.Ko te(1)

I am engaged in reframing identity post morbidity.  That’s the technical term for when you have to accept your sick self after a diagnosis.  Getting used to the new you.  I feel like illness has been gradually wrapping me up in a chrysalis, restricting my movement, constricting my experiences. But who I am is still there.

I think of that girl who defined herself by the things she did.

She danced, drank with abandon to usher in her dutch courage. She enjoyed philosophical discussions, standing around with other smokers, blowing out puffs of smoke with a thoughtful squint to her eyes. She was a good-times-girl with a tendency to sudden sadness, a seeker of fun and a girl on the run.  A subversive rebel. A smarty pants with long blonde hair and an attitude.

She did other things too.  Travelled, worked, studied, excelled.

I feel conceited writing that, even in the third person. But it is true, regardless of how awkward it feels to write it.
And all of the things I did were proof to me of who I was, what I stood for, my standards, my skills, my talents, my way of doing things. So what to do now?  Now that I don’t do much of anything? Who am I now?  Am I really still me, wrapped up in a chrysalis? Am I really constrained from being me?  Does it change the sort of person I am?

No.

Only the way I express it.  Does it change my goals?  Well, yes.  It makes them further away. But it makes them simpler too.

These days, I can’t give myself over to latin rhythms anymore, spinning round the dance floor, part of an energy exchange, lost in the force of motion, moved by the music and the slightest touch of my partners hand. How do you dance without smiling? How do you smile, without dancing? I felt such freedom in that movement, my hair swinging out behind me, weightless and turning and pulling back into the hold. Such a beautiful feeling. Rhythm and connection.  Music. I can still  listen to that music and touch on the sweet-spot. My memories of dance.  I can close my eyes and feel it again.  The air, moving against my hair, my obliques, twisting and turning.  My calves, taut and quick. Me, in heels, skirts and sexy strappy tops.  The warmth of bodies moving beside mine. The slip of the dance floor under my feet. Can I use those memories to help me find myself again?  Is it finding these words that takes me there?

Nor can I indulge in my professional passion of teaching.  Preparing my classroom for the first day of school… the smell of brand new stationery and the energy of potential; just waiting to spring from the air into works of art, words of heart, thoughts and epiphanies.  Kids finding their moment of understanding, seeing the possibilities and running with it.  I can still look through those photos of my first classroom, my first ‘kids’.  See the pock marked desks, the spelling lists and the self portraits, framed against a bright blue cardboard sky.  The book boxes, chair bags.  The smell of pencil shavings and old bananas, smelly shoes and whiteboard cleaner.  The joy of my own desk, my own resources, everything to hand and in it’s place. The clear eyed faces I would know so well, gazing up at me, waiting to begin.  Can I use the memory of teaching to help me learn something new about myself?  Learning requires you to know that you don’t know it all yet, to question, to risk new ideas.

I can’t do things like I used to.  It’s time for a new idea.

I am the person who did those things.  That dancer; who let herself be moved by the rhythm.  So I know how to bend and sway.  How to roll with the ebbs and flows. I am the teacher; I know how to think, communicate, to ask questions.
My goals have not gone away, I just need to do things differently, find new ways to travel through time.  I am flexible, I can work it out. Word it out. I am, who I am.

The chrysalis is falling away.  I needed it to hold me tight so I could grow my wings for flight.  Not dancing, not teaching, not doing. But winging my way into a new kind of being.

Ko te pae tawhiti whaia kia tata.
Ko te pae tata whakamaua kia tina -Tihei Mauriora

Ten Bucks.

doing my bit(2)

I didn’t know, before I started blogging, about the factor that makes people want to read posts.  I have looked at my stats with newbie fascination, marvelling at the things people actually want to read.  The things I thought people would want to read, they barely click on.  The things I bang out off the cuff suddenly going viral. It’s a weird thing. Looking over my stats I can see that when I write about what really matters to me, the issues really socking it to my heart, people read more.  Unless, I am talking about raising money. When it comes to posts about fundraising, people look, then look away.

I’m amazed how hard it is to fundraise for something.  I’ve never done it before. Without a trendy kind of thing to fundraise for or a clever marketing brain, it is like pulling teeth by remote.  It shouldn’t be that painful.

Dysautonomia research is not a children’s hospital ward in need of upgrade.  It’s not boobs. It’s not shaving our heads for a cure.  There are so many wonderful, worthy causes out there.  People get tired of donating.  And here I am asking for more. Making just one more demand on the dollar. Dysautonomia research funding is a teeny little corner of the funding universe.  It is promoted by people who are sick. Who don’t have fundraising expertise.  There is only one official fund for Dysautonomia Research because there is so little research going on.  There will be less going on if we can’t rally behind and help to fund it.

We need to raise $10,000 by December.

Michelle Roger, Australian poster girl for Dysautonomia, has been valiantly forging on with her fundraising efforts in spite of significant setbacks this year.  She has already managed to raise over $4000. It’s taken an enormous effort across ten months.  Wonderful donors have contributed to the fund already.  Are you among them?  Thank you!

I’ve been contemplating why it is so hard to raise funds for our cause. And I think it is because people like Michelle take on the lion’s share of the effort and everyone else leaves her to it.  We need a little Dysautonomia movement.  A group effort.

We still have $5000ish to raise to make the target.

And I want to ask something of you, especially if you haven’t seen the fund before.

Can you scrape together ten bucks?

You don’t need to donate big buckaroos.  Tiny drops, together, form an ocean.

Michelle has been feeling so despondent about the fund, understandably.  It has taken true grit to get it this far. It’s time our whole community started to pull together …it’s too hard for one person to shoulder all that responsibility.  We need to acknowledge the superhuman efforts she and her donors have already made.  We need to talk to the people we know!

We need to find ten bucks, people!  Or ten more.
The cost of two coffees.  A bottle of nail polish. A book from the bargain bin.

If you are kind hearted, please share this image on your facebook page.  Attach this link.  Help me, please, to get the word out.  If you are the awesome person I think you are, can you find that ten bucks?   It’s easy to donate… just click here.

Can we make the target by December?  If you, and me and the people we know can find ten bucks.  You bet we can.

 

Parking your Objections

Screen Shot 2014-11-14 at 9.11.34 pm

See that girl over there?  She looks like she is in the glow of good health. Her cheeks are flushed, her hair is shining. Why is she using a mobility park?  Oh my word.. she even has a cane, but no limp!  She’s a faker for sure. Does she think she is too important to have to walk 10metres? Who does she think she is?! She must be using someone else’s pass and cane.  I bet they’re her Grandma’s.  You’ve heard them do exposes about exactly this kind of deceitful self-centredness on the TV.  It’s outrageous!  You are so incensed you decide to go over to her and give her a piece of your mind.  On behalf of all the truly disabled people.  You’ll speak up for them!  It is your civic duty!

You catch her just before she enters the supermarket.  She turns at your shout, a smile ghosting away from her face.  Her eyes seem clouded.  Maybe she is tormented by guilt!
“Hey, YOU!” your voice is angry.  Your finger is stabbing the air in her direction “You can’t just breeze into one of those parks and use the pass of someone else!  It’s not on!  Those parks are for people with WHEELCHAIRS.  That’s why there’s a wheelchair on the sign!”  You are full of justified fervour,
“…I don’t see a wheelchair!  Go and park somewhere else and LEAVE THE DISABLED PARKS FOR DISABLED PEOPLE”. Her lip looks a bit quivery, you notice with satisfaction.  She better not try the sob story with you.  

“Thank you,” she says, her voice is controlled, “for looking out for the rights of people with disability.  Although you don’t see it, I am one of them. I have a progressive neurological disorder.  You can’t see my disability by looking at me. I find it hard to walk far, but I like to do what I can when I can”

She sounds like she has said that before. She turns and walks away.  You feel awful.

How were you supposed to know? She looks fine!  Your outrage fizzles, your hand drops down by your side.  You’re feeling a bit like a rapidly deflating balloon.  You stand at the entrance to the supermarket feeling a conflict of emotions.  You were only trying to do the right thing!  You watch her walking away, and you wonder about what is wrong with her.

She looks normal…

——————————————————————————————————————

Dysautonomia is a strange thing. There are ebbs and flows, bad days and sometimes, better days.  As my old friend John Denver put it.  “Some days are diamonds, some days are stones”. On those days that are stones, I have usually sunk to the bottom of my get-up-ability. I’m not driving.  I’m certainly not parking. And nothing is getting done that needs to get done. A stone day is often followed by a series of scrape-yourself-up and push on days. They’re days when I am definitely not rocking it. They are really hard days. I might make it to the supermarket and be able to budget the distance to get something essential.  On one of those days I’m unlikely to make it around the whole place.  I certainly wouldn’t make it to wherever I need to get to within the store if I have also had to walk the length of the carpark, there and back.

I have a mobility pass for parking. I use it when I need to.  But I am careful. If I am able to park in a normal park, I always do.  If I am able to walk further, I will.

I have a fierce determination that if there is anything I can do for myself and my crew, I always do.  In order to maintain that kind of control over my life, I need to use the services our community provides for people with limited mobility. Sometimes the symptom-ricochet for pushing through is swift and severe.  But sometimes, even that is worth it.  Because I like to do for me.  I think it is good for me, good for my body and good for my brain. I’ve been told I need to get better at accepting help, but I don’t know…  I think I need to keep doing as much as I can while I can.  It matters to me very much. Maybe there is an element of pride in there that I will have to examine at some point.  But in the mean time, I do what I can whenever I can. I use my pass if I need to.

My cousin’s husband has a specially modified vehicle because he is only able to mobilise in a chair.  He has quadriplegia after a disastrous rugby tackle. I have seen first hand the frustration when people have parked too close to his vehicle for him to get back in it.  I have watched cars, circling carparks on a busy day; duck into mobility parks for a quick dash in to the coffee shop, because there are only mobility parks free.  Sometimes, I too have looked through the windows of cars parked in those spots, searching for mobility cards, wondering why the people are parking there, wondering if they are legit.  It’s grossly unfair that there are people out there abusing the service provided for people who legitimately need it.  But there are also people out there abusing the people who legitimately need it.  Not all disability is visible.

The point of this post is just to ask people, well meaning people, to adopt a considered approach to their wonderfully caring, on-behalf-of-what-is-right, vigilante advances. Please, first check to see if there is a permit. Don’t assume that it is stolen.  If someone has a permit; they are permitted to park in mobility spaces. Permit applications must be signed off by doctors.  People can’t just cut them off the back of a milk carton. So if a permit is present, you really need to presume that disability is also present, even if you can’t see it.  If you are certain (there is no permit on the dash), alert the management responsible for the carpark.

I wonder, why don’t permits have a photo ID component?  I think that might resolve this whole issue.   What do you think?  Have you seen people abusing the mobility parking near where you live?  Have you ever approached them?

If you would like to read more about how this issue is being addressed here in New Zealand, you can look here.

Here’s my mate, singing about those days of diamond and days of stone.

 

Give it a crack, Jack. Part two: Dealing with Dysautonomia

Today I am interviewing Glyn Flutey.  Glyn is an Osteopath.  I credit the work he does with me for keeping me more mobile; for making it possible for me to still drive, climb my stairs and walk short distances.  If I ever skip an appointment with Glyn, my body becomes so much harder to live in.  I don’t know a better way of describing it.

Earlier this morning I was waiting in Glyn’s beautiful little waiting room.  It always smells divine.  I like to arrive a little early so I can enjoy the space.  He always has a stack of interesting magazines, there is good music playing and the muffled sounds of laughter under the door from his treatment room. I have never seen a patient come out from a session with Glyn without giving him a warm hug of thanks, laughter and a breezy farewell.  He is one of those practitioners who makes everyone feel special.  Not just because he does a good job at making your body feel better. Somehow, through the generosity of his personality, his time, his energy; he makes all of you feel better. He’s a thoroughly lovely person and seeing him feels like a mix between seeing a friend, seeing a therapist and having a body tune up. He’s just lovely. He agreed to do this interview so that those of you who don’t know about the benefits of osteopathy can have an inside view.

Me: Glyn, can you define the practise of Osteopathy for me?
Glyn: It’s a manual therapy approach where you use your hands to assess, diagnose and treat the body. It’s a holistic approach to wellbeing.  Everything is assessed and considered; body, mind and spirit.  We aim for a balance between the three. The practitioner takes a careful and responsive approach to the needs of the patient on the day, whilst taking into account the longer term plan.

Me: How does someone become an Osteopath in New Zealand?
Glyn: There is only one pathway in New Zealand. It’s a 5 year course (three year Undergraduate and two year Masters of Osteopathy) at Unitec.  Once you’ve finished that you need to register with the Osteopathic Council of New Zealand. It’s an annual registration and requires compulsory continuing professional development.

Me: For patients with autonomic dysfunction, what can Osteopathy provide?
Glyn: Support. Your body is struggling with so many facets of dysfunction. It is understandable that you will have aches and pains, tight muscles and tension. When your musculoskeletal frame is under pressure, it is harder for the nervous system to get messages where they need to go. Osteopathy irons out the wrinkles and promotes healthier function within the body as a whole.

There are many patients with features of various illnesses for whom the dots have not yet been joined. If you have autonomic dysfunction, you may not know the whole story about why.  It is necessary to sit down with your osteopath and put everything on the table.  You need to establish where the osteopath can meet your needs.  What is happening with your body? What are you thinking would be helpful? How do you feel about it all? Dysautonomia can be a fluctuating health scenario as the body strives for homeostasis.  So the patient needs to establish fairly early on with their Osteopath, what they are looking for.  

For example, I help you (Rachel)  by making sure that areas of musculoskeletal restriction are reduced.  I remove any impediments to normal musculoskeletal control.  Such as tight muscles, muscle imbalances, reduced circulation due to reduced physical activity.  When you feel sluggish, I can reduce that feeling.  Patients with autonomic dysfunction or any number of other health issues report feeling invigorated after a session.  Lighter.  Musculoskeletal problems can creep up due to postural demands, physical undertakings or the amount of time patients may need to be in bed. These problems can create pain and discomfort.  Pain and discomfort can trigger the sympathetic nervous system. In turn, for you, exacerbating the symptoms of Dysautonomia.  Osteopathic therapy can reduce the stress load.

And I listen to you.  You catch me up with what is happening on your health journey, we discuss the big picture, we talk about your family, our mutual friends.  We laugh a lot.  If you are particularly tired, I adjust the way the therapy will work for you that day, keeping in mind always, the big picture.  I aim for you to feel better when you leave than when you came in.  I help to maintain your structural, visceral and mental frameworks.  And then you are more able to cope with your illness experience.

Me: I notice that I can see better after a session.  Why is that?
Glyn: Your vision can be impaired by your reduced capacity to breathe, which is due to the fatigue. You can’t fill your lungs so well which reduces the oxygen to the brain and oxygenation of the body in general. So after osteopathic treatment, your breathability improves. Secondly if there are any restrictions in the neck this can give a localised reduction in blood flow.  You’re not alone, this post-adjustment vision improvement is quite a common phenomenon in many patients. 

Me: Tell us about the Visceral Massage?
Glyn: Visceral massage is a way to release tension in and around the internal organs.  Patients report increased motility and a sense of lightness after visceral massage. Part of the work of osteopathic therapy, is about making sure you have adequate nerve conduction/communication to the organs that support bodily funciton.  It’s all well and good to have the motor nerves functioning, but increasing the efficacy to the viscera is an important part of the therapy.

Visceral Massage is a massage-like release of tension in the abdominal area.  The osteopath works on the diaphragm for maximising breathing capacity as well as the muscular tension in the abdominal muscles.  The intestines are formed of smooth muscle which can hold tension which leads to restriction of movement.  Perhaps you have postural compression of the abdomen from prolonged sitting, that can reduce blood supply and some capacity to function. You might feel an uncomfortable pulling and a tightness in your tummy. Visceral massage addresses this imbalance.  These methods have been promoted mostly by the French. 

I think not enough of the osteopathic profession in this part of the world do visceral work.  

Me: Glyn, I am conscious that your approach is very holistic.
Glyn: Yes, this is usually the more difficult aspect of being an osteopath.  Some osteopaths are technically proficient but lack the empathy required to offer a comprehensive support to patients. They don’t get it.  Understanding that an ever changing balance is required. On a visit by visit basis.   Listening is the start.  Not telling them that they should be feeling this or that but drawing out from them what’ going on and using that to formulate your approach.  Everyone has their own opinion and approach, but one of the criticisms I have is that Osteos sometimes do what they like doing most, with regards to techniques, but this doesn’t reflect the needs of their patients as fully as it should.

Me: So is that what it takes to be an effective Osteopath?
Glyn: You have to like people.  Part of that is, you have to like yourself. To be grounded enough to then be able to help someone else.  You have to be in a good space to be able to offer perspective and relevance to help others. That’s a strict responsibility but also, a relief.  You have to look after yourself, to not be hypocritical in your therapy.  People don’t respond to hypocrites. And it’s about valuing your patients.  When they know they are valued and listened to, you can be responsive to what they need to achieve.  I aim to keep my patients going.  Not just maintenance, purposeful and directed therapy to address their real needs.

Me: What sets Osteopaths apart from Chiropractors and Physiotherapists?
Glyn: Osteopathy, done properly, is more comprehensive.  It just is. Other disciplines don’t always spend long enough with their patients to garner enough information to provide a comprehensive picture, nor are they interested in that. Only when you know the patient you can treat them effectively; the whole person.
Physios treat symptoms.  It is symptom abatement.  As is most western based medicine, whereas Osteopathy is more holistic.  We follow the Osteopathic Principles.  We consider prevention, symptomatic relief, and maintenance.
In my opinion some osteopaths and chiropractors can be too superficial with their approach and express more interest in making money out of their patients than should be socially acceptable.  Some  charge more than $400 per hour by seeing as many patients as they can in short order. That’s expensive treatment that doesn’t always balance well with results and reasonable access to health care.

In my practice, If a visit is not covered by ACC it’s $150 per hour.  All properly registered Osteos are ACC approved and can also work with private health insurers.

Osteopathic Principles

Me again: Osteopathy has become a mainstay therapy in my fight against Dysautonomia.  I’ve tried almost every complementary therapy there is.  But Osteopathy addresses the practical aspects of how to cope that are so often overlooked by conventional Western Medicine.  Without regular osteopathy, I would not be functioning as well as I am.

I am very grateful to you Glyn, for your professional, caring approach to my wellbeing.  My body, (my mind and my soul) thank you!  Thank you also for giving me the time it took to do this interview.   🙂

 

 

 

Raise your Wrist for Dysautonomia Awareness

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Down in this part of the world, research that will help people with Dysautonomia isn’t heard about that often.  But it is happening.  At the Baker IDI Institute in Melbourne (they’re the people who helped the Yellow Wiggle with his Orthostatic Intolerance) there is research going on which could benefit fainters. So many Dysautonomiacs struggle with fainting. That’s is a big feature of our symptoms. And researchers struggle to attract funding. That’s a big feature of the competitive research dollar. Michelle Roger from the famous “Living with Bob” blog has a fundraising initiative already running.  It is my charity of choice, especially this month.  Interested in making it yours?

For Dysautonomia Awareness Month I have been pondering how to encourage people to donate.

My sister has been visiting, and while she was here, I had an idea.  I had already bought some Dysautonomia Awareness bracelets from the States.  They’re super cute. My plan was to price them higher than their cost price, sell them on my facebook page and donate all proceeds to the fund I have talked about above.  But could I do something differently? In a happy coincidence, my sister is a beadwork artist.  I was watching her deftly do her thing while she was here and I thought… maybe we could make something a bit more unique?   I talked to her about it and she agreed to donate her time and beads (thanks Trissy!).  Then I designed this baby and she made it. So pretty.  The clasp is the shape of a heart.  How appropriate!

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It was fun to watch it come together!  So I decided to try designing another bracelet, this time stringing the beads myself.  Ta da!  See the little spoon charms and the blue awareness ribbon on the bracelets?  A token for all the  blues… a special Dysautonomia reminder.

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While I was painstakingly stringing seed beads for that one, she whipped up these two.

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And then there are these:

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All of them are unique.  Even the plain awareness bracelets have been tweaked (I enamel painted the awareness ribbon charms to turn them blue!)

All of them sing BLUES OF MANY HUES, which is my take on our awareness colour.  You may be aware that our colour is in debate at present, it’s somewhere between mid-blue and turquoise.  And I don’t think it matters one bit. Every kind of blue can represent Dysautonomia Awareness.  Why not?

Every time I tried to settle on a price of the bracelets, I was stumped.   Then fellow Dysautonomiac, Andrea, had a suggestion:

“Why not give the bracelets to the biggest donors, as a thank you gift?”  …brilliant idea, that is!

So that is what I am going to do!  Would you like one?  Head on over to Michelle’s page to donate!

Here is how it will work.  YOU NEED TO DO BOTH STEPS TO BE ELIGIBLE

STEP ONE: Go here to donate the amount of your choice Make sure you reference your donation with the phrase CHRONIC-ILLS of RACH SENT ME and your name.  The picture below is just an example…

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STEP TWO: Comment below to let me know you have donated.  By commenting, your email address will be visible to only me.  I will only need to use it if you are a bracelet winner.

Note: You don’t need to disclose how much you have donated in your comment, unless you want to.   At the end of the month, I will check with Michelle to see which donations to her fund are the top contributors using that reference line.  I will gift as many bracelets as I have to the same number of people who donate the most generously. Then I will contact the bracelet winners to ask you how you’d like me to get your bracelet to you.  It doesn’t matter where in the world you are, I will get it to you.  A tiny little thank you for your generous giving.

Please, would you help us raise money for our cause by assisting with research funding here in our part of the world?  If you are not in a position to donate, would you consider sharing this fundraising page with your circle? We’d all be so grateful.

Thanks!  Rach
and all Dysautonomiacs in Australia and New Zealand

BUT WAIT!  THERE’S MORE! 
Two of my very talented friends from my bloggers group have donated their skills to the cause.  Anya Bykar of Clear Design Creations in Tauranga is donating the most adorable beaten silver wire and crystal bracelet (picture to come… I am so excited!) and Bea Chuan from Simply Bea handmade creations, who does lampwork glass beads has donated some of her very special beads to the cause. My talented sis is going to turn them into a wearable piece for one of you!  (picture to come)!!!!

UPDATE:
Today is the last day of Dysautonomia Awareness Month.  My sincere thanks go out to Jenny Jones,  Carol Mowbray, Emily Doddrell, Felicity, and Emily Smigrod.  If you would like to receive an awareness bracelet as my token of thanks, please message me your contact details.  If you comment below, your email address will be visible only to me and I can get in touch about delivery. Wonderful people!  Thank you so much!

We Met On the Internet

Once upon a time, meeting this way was considered scandalous, even dangerous!  But, just as the early days of internet dating required certain intrepid desperation; my own desperation sent me online in search of people like me. It is so easy to feel isolated when you have an odd illness.  And when the illness carries on for years that loneliness looks for others.  Here is how I found the rare birds in New Zealand who are like me…

When I was first diagnosed, Dysautonomia is not the name I was given for what was wrong with me. Back then, I was mostly having problems with dizziness and fainting, things were to progress but I didn’t know that then.  Investigations showed that my heart was stopping, so they put in a pacemaker.  I was told there were very few people with my particular problem in New Zealand.  When I asked if I could get in contact with the ‘very few’ I was told that privacy laws prevented me from having their contact details. Which is perfectly logical, but not helpful.  It sounded like a job for the internet.

Let me explain a little first, about my odd condition. Dysautonomia is an umbrella term used to describe several different medical conditions  which all feature autonomic nervous system dysfunction.  The autonomic nervous system controls the ‘automatic’ functions of the body that we don’t think about.  Pupil constriction, tears, saliva, heart rate, blood pressure, digestion, bladder and bowel function, temperature regulation and the body’s ability to compensate for changes in posture.  Patients often feel dizzy and nauseous. They may not sweat properly, be able to pee and poop normally. Headaches can be a feature.  Fast and slow heart rates, labile blood pressure. They can experience brain fog and horrible pain related to various dysfunctional aspects of their autonomic function.  All the while looking perfectly normal.

Our bodies themselves are usually structurally fine; it is the dysfunctional nerve conduction that creates our problems. Our bloodwork and other tests can be fine. Yet we are not. Dysautonomia is often referred to as an ‘Invisible’ illness because it is hard to see the debilitating effects by looking at a person’s appearance.  Spend some time in the company of someone with Dysautonomia and you will see that it isn’t really invisible at all.  Our quality of life has been compared in the literature to patients with congestive heart failure. Functional disability is often a feature of patient’s experience. In short, Dysautonomia is really hard to diagnose and really hard to live with.  We all wish that more people understood that. We run marathons every day, just doing simple daily tasks.   And before we even got to this stage, we ran the marathon of searching for answers to our medical oddities.

Patients with Dysautonomia typically wait years for diagnosis, often suffering wrong diagnoses and medications along the way.

In my early search to understand more about my condition, treatment options and prognosis, I looked for medical information and support groups online.  Even my doctors couldn’t help me with more information. I was desperate to know more, to connect with others like me. People choose whether they want to be online, so my chances of meeting others like me who would want to meet in person was much better. To start with, the groups were all American. Then, occasionally a new Australian member would appear.  I posted messages, I scoured the boards, but New Zealanders were nowhere to be found.  Years passed and I gave up looking online for people like me.  It was too disheartening.

Then, a neurologist explained that I had Pandysautonomia.  It is a rarer, widespread, progressive form of Dysautonomia, the cause is still unknown.  There is no cure without a cause so the symptoms are treated as they occur.  The medication and treatment regime can be almost as debilitating as the condition itself. Armed with a new name for what was wrong with me, I hit the internet again.  The neurologist said he knew of one other patient like me, in Wellington. I was determined to find her.

How much the internet had sprouted in the time I had been absent! There was a new, large not-for-profit organisation in the States, raising  awareness, funding research and hosting conferences for people with Autonomic Dysfunction.  They pointed me in the direction of a popular Australian Dysautonomia blogger.  She pointed me in the direction of and Australian/New Zealand support group.  And there, at last, I found my ‘birds of a feather’.

There were already Aucklanders there!  And the girl I had heard about from Wellington! I was beyond surprised!  I cried. As nice as it is to wave across the digital divide to one another, it’s all kinds of wonderful to meet up.  I’ll never forget our first time. The relief of being around people who really got it! I talked so fast I could barely get a breath in. We laughed. We shared stories of doctors, discussed the differences in our treatment plans. We call ourselves ‘The Horizontalists’, because our meetings are usually in a park, lying on blankets and pillows. We commiserated with each other and our eye contact spoke volumes of unsaid words, unshed tears.  We continue to meet, our group has swollen in recent months as new patients are diagnosed and find us online.

Our kiwi group is 16 strong. Kathleen, Janette, Renee, Zen, Kirsty, Carolyn, Andrea, Sarah, Hailee, Rosie, Felicia, Hayley, Sarah, Rebecca, Rachel and little Emi (see a pattern there? 80% of people diagnosed with Dysautonomia are female). If there are more of you out there, shout out!  We’d love to find you.

Every person in that group is a crucial part of their family and friendship groups; each of them languishing with a diagnosis that lacks adequate research or effective treatment. Awareness is slowly increasing in the medical community, so diagnosis is more common now.  The thing is, the many forms of Dysautonomia is not as rare as you would think (more than 11 million people worldwide), but they are rarely diagnosed in New Zealand.  Some of the forms of Dysautonomia are Postural Orthostatic Tachycardia Syndrome, Multiple System Atrophy, Pure Autonomic Failure, Autoimmune Autonomic Ganglionopathy, Pandysautonomia & Familial Dysautonomia.

Finding others like me has brought me a community and comfort that is unparalleled.  But there is still so much to do. October is International Dysautonomia Awareness Month. It’s a tough gig pushing awareness when our numbers are so few.  We are generally too sick to do all the usual methods for getting the word out there.  But we are driven. We know that out there are more people like us, and people with autonomic problems which have yet to be diagnosed.  People struggling through each day, invisible in their communities, simply because no one knows about what they are going through. We really want to change that. Our community of patients might be small, but so is New Zealand.  We know our wider community will open their minds and hearts to people with invisible illness, as soon as they know we exist.

Dysautonomia = Dys (dysfunction) Autonomia (of the autonomic nervous system).
Dysautonomiacs = Regular people afflicted with this debilitating, sometimes invisible, chronic dysfunction of the autonomic nervous system.

Good sorts to meet on the internet.  🙂

 

October is(5)

 

Deep In Our DNA

My family dispersed like seeds on the wind when they grew up. I remember how it felt, being the last one left at home. The quiet emptiness.  I spent a lot of time with Mum in those late years and as a bonus, I finally got the front seat!  In those years we were living in Sydney.  I still don’t know all the circumstances around the sudden departure from PNG, but I left boarding school in Melbourne to join my parents and my next brother up, stayed on.  He was closer to the finish line.  My Mum was very sad in those first months, adjusting to our new life. I’d come home from school, sad myself and we would sit together on someone else’s vinyl sofa, in our rented house, hold hands and cry.  It all got better, as life does most of the time.  And I do treasure the time I had as the last chick in the nest.

I am one of four kids.  All two years apart; boy, girl, boy, girl.  Pretty impressive family planning… or lucky coincidence?  I’m not sure if having four kids under six could be called luck!  Knowing my mother, I’d say there was no accident in any of it. It was mostly good being the youngest.  They all tease me that I had it easy; I tell them they made the rules tougher, by breaking them before I had the chance. It was great being part of a big family.  Sitting around the dinner table feeling the strength of it, no matter what dramas were going on, feeling the “us-ness” of our circle as we held hands for the compulsory grace before dinner.

Four of us & Timbo(2)

Now, I have a brother in Sydney, a brother in Darwin and a sister in Gisborne.

They’re all a long way away.

But for my recent big birthday, my sister decided she was coming up.  She’s a whirlwind that girl. She began planning, months out from the visit (she’s like Mum that way).  Who would sleep where, what she would bring, what the order of events would be.  There were phone calls, thick and fast toward the departure date. She arrived on the Saturday, helped my hubster put together a primo roast lamb feast for our celebration dinner. Flo arrived with the cakes, (she made two… and yes, I ate them! Yum!).  A new kind of family celebration was had. I sat there at the end of that table, looking around at our circle.  It has changed, but the “us-ness” was present.

My sister, Trissy, spent a night looking after our kids so the BobbyD and I could go out for a night in town. And then, this week, she took them away again for two days and nights in the country with her extended family.  Oh, my!  Such gifts of love!  They are coming home this morning.  I must confess, my nest has been feeling empty without them. But I have slept in, rested and relaxed.  I haven’t had to think about the usual school holiday stuff. I’ve been able to deposit some energy in that account which is usually in deficit. I know the kids have been happy and busy, running around the countryside with their cousin and his cousins. That’s a special kind of break.  I will feel the benefit of her visit for a long time.

There’s a thing, with family.  A kind of familiarity.  There’s seeing your own mannerisms in someone else, and having the same thought patterns about certain things. There’s sharing Mum-memories and feeling like those memories have been shored up for a while. Somehow, when someone else talks about her, I feel like she is less far away.  There’s laughter about things we used to do and petty arguments about what did and didn’t happen in our lives.  There is the frustration of seeing your most annoying habits in someone else.  The mirror family hold up for us. There’s a way of cooking, folding, hanging the washing.  All of it, echoes of my Mum.

I saw Trissy whisk my boy up into a sudden embrace the other day and shower him with kisses.  Like machine gun fire.  Just like my Mum would have done.  I felt a sudden upsurge of grief; then relief. He will know the kind of love she gave because he will know my family. It didn’t end with the loss of my Mum, we still have it.  Deposited deep in our DNA, built into our behaviour.  When ever my kids spend time with my people, they are experiencing some of what it might have been like to spend time with their Granny. Little pockets of love from her, invested in her own kids so that we might carry her on.

Me and my Sis(1)

Are You Alright in the Head?

Dealing with Dysautonomia

I’ve been seeing someone.  Actually, I’ve been seeing a few people …about my health.  And this month, because it is Dysautonomia Awareness Month, I’m going to do a series of interviews with various practitioners who help me with my Dysautonomia.

Today’s guest is someone who helps me with the aspects of chronic illness that impact my thinking, my mental wellbeing and my mood.

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Today I am interviewing Anna Patience, a Health Psychologist with ProCare Psychological Services in Central Auckland.

Dysautonomia patients typically spend a lot of time at medical appointments, addressing various aspects of their illness with specialists across a wide range of disciplines.  Our Western model of medicine compartmentalises our body into different systems, or medical disciplines.  Because the autonomic nervous system employs organs and functions from a range of these groups, we necessarily see many different doctors. It is hard to get them all communicating with each other about what is ultimately, the whole patient.

When you are so busy seeing doctors, it can be easy to overlook a significant aspect of our wellbeing: our mental health. People suffering with a chronic illness face many psychological difficulties. Recently, my GP told me about a free service available to patients enrolled with a ProCare Primary Health Organisation. I am eligible for six sessions with the lovely Anna Patience.  Yes, that really is her name!  And yes, she is patient by name and by nature. Anna has been steering me through some murky waters, illuminating some new ways of looking at things that I had previously felt were drowning me. Giving me strategies and frameworks to understand the processes my mind was going through.  I am so grateful for the opportunity to work with her.

Anna generously agreed to help me share a bit more with you about what she does and some of her thoughts on the psychology of chronic illness.

Me: What is a ‘Health Psychologist’?

Anna: A health psychologist is someone who has been trained to work with individuals (and couples and families) who are having difficulties or challenges with their physical health. This might be due to a recent diagnosis, managing a chronic condition (eg diabetes) or experiencing unexplained physical symptoms. It is normal when someone is experiencing physical symptoms that they might also experience some changes in mood; how they then cope with this can play an important role in the management of their health as well as their quality of life.

Me: What led you to choose health psychology as a career path?

Anna: This was slightly unexpected, as originally I had wanted to be a French teacher! However during my undergraduate studies I took some psychology papers and took up a part time job at a telephone counselling line for 5 to 18 year olds called ‘What’s Up’. This changed my career plan as I found a huge source of purpose and meaning in this work, and was also inspired by those I worked with. I then went on to do post-graduate in health psychology at a masters level and found the holistic element of working as a health psychologist resonated with me. Its also a job that offers a lot of variety, as people can work on the clinical or research side, or both.

Me: What does an appointment with a health psychologist usually involve?

Anna: The setting where I currently work is a brief therapy service, which means most people have 4-6 sessions available to them. Because of this, the first appointment is often focused on what people are most concerned about at this time in their lives. It explores how their physical health condition/situation might be impacting on their ability to engage in the things that are most meaningful to them, for example their close relationships, their work, leisure activities etc. The therapist and client will work together collaboratively to explore the connections between cognitive (thoughts), emotional, physical and behavioural factors and understanding which of these fall into short-term or long-term coping skills. We would also discuss in the first session what the individuals expectations or hopes are for their sessions.

Following this, in subsequent sessions, time is spent both exploring those coping skills, and adding in other strategies that may be useful to the client. This could involve discussing how best to communicate to loved ones/others about their illness and needs, testing out other ways of approaching activities for example pacing behaviours to manage energy output, or being able to step back and ‘unhook’ from thoughts that are unhelpful. Other tools might focus on helping an individual to allow their difficult feelings about their condition, for example feelings of anger, disappointment, fear, shame or sadness. Ultimately interventions are best used when tailored to each individuals needs.

Me: For some patients, seeing a psychologist is something they are reluctant to do.  People can be afraid of being labelled and the perceived knock on effect for their diagnosis and treatment in a medical context.  Many Dysautonomia patients report being initially mis-diagnosed with anxiety, conversion disorder, somatic illness or hypochondriasis (by medical doctors, not psychologists).
Do other doctors have access to information shared in these appointments?  What is the privacy standard in relation to these sessions?

Anna: Everything that is discussed with a psychologist is confidential, unless someone states they may be at harm to themselves or others. At our service the General Practitioners are sent a brief letter after the first and final sessions, with the consent of the client. Psychologists are bound by their ethical obligations to maintain their clients privacy.

Me: What are the most common issues you discuss with your chronically ill patients?

Anna: This would fall broadly under the heading of ‘coping’. What do people tend to say, feel, or do in response to their bodies symptoms, and how might this then impact on physical and emotional well-being? Pain and fatigue are common physical symptoms so this is often a focus. A large part of working with people who’ve had a diagnosis is dealing with the loss of a pre-morbid level of functioning, and helping them process what this is going to mean for them going forward. Adjusting personal expectations, and communicating to others about this is often discussed.

I tend to work primarily from a model of therapy which falls under what they call “third wave” therapies, called Acceptance and Commitment Therapy (ACT). This will often involve clarifying with clients what they want their life to be about in the face of this illness, what do they want to stand for, while also providing them with ways to not let unhelpful thoughts or difficult uncomfortable emotions prevent them from pursuing these valued activities.

Me: Personally, I have found seeing a health psychologist really empowering.  You have given me tools for addressing the parts of my daily experience that are difficult for me.
If you could offer chronically ill patients one ‘takeaway’ idea to think about, what would that be?

Anna: This is a difficult one! I would say thinking about health in a holistic way would be something to consider. This might mean noticing what your mind says about your body and the changes its making or the things it can’t do anymore, letting those thoughts/feelings happen AND continuing to connect to those things that are meaningful for you. Also, using those supports around you, or asking your GP for a referral to a health psychologist if you feel getting an ‘outsiders perspective’ is worthwhile.

Me: What is the one go-to resource that you would recommend for chronically ill patients:
Anna: This is not a resource that is specific to chronic illness, but the two books I use almost daily with my clients and highly recommend are ACT books. They are The Happiness Trap and The Reality Slap, both by Dr Russ Harris.

Me again: If you are suffering from Dysautonomia or another chronic illness and you have been feeling unsure about seeking psychological help,  I would like to encourage you to give it a go. Seeing Anna has made a big difference to my outlook.  Even though things with my body have been getting worse, thanks to her, things with my mind have been getting better.

I hope this interview has helped you.
Do you have questions?  Ask away!