Get Me Out of Here!

Notes from Sunday 29 March:

I’ve been away from the internet since 7am this morning; the last time I scrolled through my notifications, checked over the control panel of my blog. I’ve been in class, learning in real time. My hands haven’t touched my keyboard. I’ve been making notes in my notebook, like, with a PEN. It feels, frankly, weird.

Being in a learning environment with all those other souls feels different, too. In a strange but familiar way.  I’m in the first retreat block of the Leadership Programme I am part of. It’s day one, two more to go. I quickly get a bit peopled out, but I console myself with the idea that soon, I’ll have some one on one time with my laptop.
Being off the internet feels weird.

So when I get to my room, (Yes!  Sudima Hotel has free wifi!), I instantly seek out my old friend. There’s a sigh of contentment as I lift my laptop over onto my lap.  Hello sweetheart.  Let’s go exploring…

Except a pop-up window keeps telling me that my usual pages are all, ‘untrusted connections’. It won’t let me validate the security certificates.  Just one option is available on my screen. ‘Get Me Out Of Here’.

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But I don’t want to get out of here! I’ve been getting twitchy withdrawal feelings from my internet; my friend.  I miss it. I miss what it shows me, where it takes me, who it connects me with. I keep trying, like a drug seeker after that familiar hit. I’m no quitter.

Then my roomie starts conversing with me. And the conversation captures me!  Before I know it, my laptop is sliding sideways onto the bed. I’m listening. We’re talking, laughing, covering the deep stuff.  Travelling the world and traversing through time.  Connecting like old friends.  That feels nicely weird, too; we are talking about things it would usually take established friends some time to reach!   I close the lid and turn to laugh at something she just said.  We giggle and adjust our volume so we don’t wake up the people in the neighbouring room.

Connecting with real people in real time is exhausting for me. I like respite.  Alone time. It helps me to recharge when I have some solitary time.  So I am surprised that I have spent an entire day, deeply immersed in the learning.  Engaging with all the individual souls in my programme.  Talking, listening, talking, talking… and then come to my room and talk some more. We talk until midnight gives us pause.  My brain is whirring somewhere high above my sleepy self.

A little thought skips through my mind as I close my eyes. How interesting that my ‘untrusted connection’ warning on the internet has left me open to a real and trusting connection in real life.  Kismet. Coincidence.  Connection in a dis-connected, digitally connected world.  I like it when life gives me gifts like that conversation.  To be present is the present.

Goodnight.
And internet? I’ll see you when I get out of here, my old friend. Til then I’ll be immersed in some other kinds of connection …and you won’t miss me at all!

Passing Privilege

Unless you are brand new to this blog, you’ll know that I often refer to ‘Invisible Illness’ or even ‘Invisible Disability’.  I feel like my purpose is to lend a voice to all the people who suffer, in plain sight, with no one seeing what’s wrong.  I want to shine a light on the situations unseen by people busy with everyday life. The last six years have opened my eyes to an entire community within our community.  People who fly beneath the radar, struggling, suffering and desperately in need of kindness, compassion and understanding.

Invisible illness is any illness that isn’t visible or apparent.  The sort of situation where you have what they call ‘passing privilege’.  You can ‘pass’ as normal in a group of people. I am not so sure I would call it a privilege.  But if I look at it from the perspective of someone who has no choice but to be identified by their illness or disability, I guess ‘passing’ could indeed be a privilege.  But it is all relative.

The problem with ‘passing’ is that no one knows.  And if people don’t know you’re struggling, how on earth can people lend an ear, or a helping hand?  Worse, how will they know to hold back their impatience, intolerance, their rudeness? I have heard countless stories of people being treated rudely and with a harshness that would be hard to bear even if they were well. How much more soul-destroying such encounters can be when your whole existence is already an exercise in forebearance.  Worryingly, just-one-more incidence that confirms people just don’t understand can be the straw that breaks the camel’s back.

Recently over in the States, the Dysautonomia community lost a young lady to suicide.  Christina Tournant had POTS, and her final note expressed that she just couldn’t fight anymore.  All reports describe her as a high achiever, a great friend, a go-getter. You can see for yourself just how beautiful. She was at home on extended sick leave from university when she took her own life.
It can be so overwhelming, dealing with an illness nobody can see. You might fight for the short times you are upright around others and crash when you can do no more. You might push yourself far beyond your limits because the expectations of others are based on what seems superficially apparent.  You seem well, so why can’t you..? Carrying the burden of ‘passing’ can become too great. Feeling like you are falling behind your peers, letting your loved ones down, it’s painful.  Fighting your fight out of the sight of the community at large can be extremely isolating.

 

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Sharon recounts a recent bout of severe depression that afflicted her daughter, who suffers with a form of Dysautonomia.  Sharon was desperate to find help for her and turned to a patient forum on facebook:
I asked for help the other day for my daughter who was having, for the first time, waves of shocking depression that were out of her control. The responses I got were heaven-sent. I took her to emergency on Sunday and they were about to discharge her, back to her misery, when I suggested a drug that was suggested by a member here. I am thrilled to say that it worked a treat and the doctors were shocked. Sunday, there was no hope and on Monday, there was light again in our lives. So, we all learned that you NEVER GIVE UP….you never know what tomorrow will bring. Now we know what depression is really like. That you need to just sit and hug the person and let them know that they are not alone”.

Ana experienced such depression first hand when she was admitted into residential care. Ever since I can remember I have not wanted to be dead. But having an illness that no one understood, being so frustrated with its variability at a moments notice, and not being able to properly be a mother, I considered suicide. More so to enable my husband to then be “free” to have a proper wife and the kids to have a proper mother. But then two things happened.  I began to see a psychologist and I discovered an activity I could do with my limitations.  I began to sea-kayak when I could. I remember spontaneously laughing for the first time in 5 years when I had waves roll over the bow and crash into my chest. It was the best! I felt so free and alive, at one with nature. This was a major turning point in my life”.

We are so fortunate to have access to professional psychological help (see my post here about how to access this if you are in New Zealand) and there are additional wonderful supports available for people with invisible illness.  I can’t recommend highly enough, like Sharon, finding your people in facebook groups!  Finding online forums or patients groups will provide you with the sort of first-hand-experience/wisdom from others who have been where you are. Look for groups with excellent group guidelines to protect against anti-social behaviour. And remember, social media is all about making contributions.  Don’t just post about yourself, interact with the posts of others.  It is phenomenal the wealth of support, solidarity and good cheer you can find by connecting with others like you.

If you can’t find a group, start one for your area. As wonderful as online support groups can be, having the opportunity to meet up with others in real life is worth the effort. It’s also great to meet locals like yourself because they will have information to share about their own medical journey, the people they see and the pathway they’re travelling.  Ask in your online patient groups.  Put the word out.  Collect names of people living in your locale. Another bonus is that you will have some of your only social encounters built around your needs. There are a group of people here in Auckland that I have met up with.  We call ourselves the Auckland Recliners, because that is what we do!  Every now and then, we meet in the park, lie around on rugs, bring our own pillows and enjoy the respite of complete understanding.  It’s a beautiful thing, finding your tribe.

Even if you can’t get out to services easily, we have a wonderful telephone help service in New Zealand for people struggling with destructive thoughts.  If you are one of the people struggling because you ‘pass’ as normal, if you feel invisible, alone and are thinking scary things, please get help.
Phone Lifeline on 0800 543354. Life with illness doesn’t have to remain a purely deficit situation. There are things about life with illness that can lead you to a more rewarding quality of life.  It’s not always easy to see, but connecting with people who can help you is a great place to start.

And if you are not ill, but you care,  take time to listen to the answer to “How are you?” next time you ask it.  Read the body language of your friends. Approach from a place of open connection. Ask further questions, consider the fact that there are many in our world who suffer in spite of looking well. People endowed with the dubious ‘privilege’ of passing beneath the notice of others. Get to know the people in your circle. Find out. All is not always as it seems.

and we danced…

Today is a bit special. Even after a night of slumber-party-parent-duty for my daughter and her crew of friends. They’ve all got the day off school today because of her school’s centenary celebrations.  So we thought we’d celebrate the school’s birthday and our girl’s. So slumber partying was in order for last night and a beach ride today! This is the beach.

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And this where I have chosen to sit and do some writing.

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It’s stunning.  Early Autumn here, so not hot, but not cold. A little zephyr of a breeze. A coffee has been drunk, a pastry has been eaten.  The surfers are out in the waves and the girls are all back in the saddle, the place they love best, riding along a beach on our wild West Coast. This country is so breathtaking.  I hope they will hold this beauty in their hearts forever and never stay away for too long.

So many of the younger generation fly to bigger shores when they finish school.  It’s almost a rite of passage here in the antipodes.  Back to the ‘motherland’, or across to the Americas.  Over to where the action is and far, far away from all this natural splendour. I hope that each one of these girls carries a bank of beautiful memories like the ones they are creating today.  Carries them like homing beacons to bring them back to us when they are far away.

I’ve been thinking a lot more about those future days, when they are all grown up. I can see it emerging in my girl; the woman she will become. She and her friends sang with gusto, all the way out to the coast this morning.  Full of exuberance, they sang of a kind of love they are yet to experience. And I looked at their beautiful, shiny faces in the rear vision mirror.  Beautiful creatures. They don’t know yet, but they will.  Not so far from now.

We turned the music up, and together in the cocoon of our big warm car, we danced in our seats, be-boppin babies.  The old girl, the young girls. Full of happy hopes and wonderings. Full of a love of our own.  Love for life, for our beautiful country, for horses and sea air and the waves on the ocean.

It made me think of this song, from back when I was a young thing myself. My brother gave me a copy of The Hooters on cassette. Remember All You Zombies? That was them, too. I really loved that tape.

This the them.  And We Danced.

And we danced like the waves on the ocean romanced
We were liars in love and we danced
Swept away for a moment by chance
And we danced and danced and danced…

(ha!  love the eighties, not the mullets!)

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Breaking News.

There are many ways to cope with Chronic Illness.  One of my favourites is to find the funny amongst the daily grind.  Just recently, I’ve talked on here about the importance of being careful about pseudo-science.  There are so many dodgy people out there trying to take advantage of the ‘Dysautonomia Dollar’ (the illness dollar it should really be called because it is not just a problem for our community), promising cures. Suggesting they can cure things without adequate studies or proof.

Recently, some of my friends with Dysautonomia were chatting together about pseudo-sciencey articles.  They’re quite a scientific bunch these girls, most worked in various disciplines of Medicine before their diagnosis, some are still studying towards their qualifications.  Then the brilliantly funny Belinda Taylor wrote this spoof article.  I loved it so much I begged her to let me post it here for you.

It’s breaking news!  Geddit?!  Over to you Belinda for this astonishing ‘research’ finding:

NEW RESEARCH CLAIMS DELICIOUS

“There are a growing number of patients worldwide with various chronic illnesses that can leave them unable to participate in work, social and family lives. Scientists in Lindtville, Switzerland, working in conjunction with chocolatiers, have recently discovered a tasty breakthrough that may allow patients with a chronic illness called Dysautonomia to re-enter the workforce and society.

By altering the methyl groups on Theobromide, a compound found in chocolate, scientists have been able to get it to have the opposite effect on the human body, which will prove beneficial to those with Dysautonomia. In its natural form, Theobromide acts as a vasodilator and a diuretic, however by altering which nitrogen atom the methyl group is attached to, they have been able to make a molecule, which they have called TTITBITO (Theobromide That Isn’t Theobromide But Is The Opposite), that acts as a vasoconstrictor and anti-diuretic.

As an added bonus, making chocolate with TTITBITO makes it even more delicious than it currently is. Dr. Fietzelwiener, the lead chemist on the project, described the taste as “even better than a crème brûlée that had been dipped in ambrosia and topped with bacon.” Because of the discovery, food scientists have needed to amend the current range of recognisable tastes of sweetness, sourness, bitterness, saltiness and umami (pleasant taste) to include uberumami. Currently TTITBITO chocolate is the only food in the uberumami category.

Early studies with Dysautonomia patients using TTITBITO chocolate have proved promising. In a study of 131 people with dysautonomia, 98% of the dysautonomia patients reported complete resolution of their symptoms. The study was conducted in a blinded manner with the patient cohort being split into two. One group was given TTITBITO chocolate for a fortnight and the other group was given ordinary chocolate. The groups then swapped for another two weeks. In order for the patients to not be able to taste the difference between the two different types of chocolate, they were made to eat chilli powder prior to ingesting the chocolate. The 2% of dysautonomia patients who were not cured was deemed due to the subjects forgetting to take the chili powder prior to tasting the TTITBITO chocolate and eating their entire two week allocation in one sitting. Sadly, they died as a result.

The study participants have been allowed to continue to use TTITBITO chocolate to keep their Dysautonomia at bay. In interviews that were conducted with the participants after the completion of the study, they were singing the praises of this new breakthrough. Mrs. Hornswaggle, 42, from Hicksville said, “My taste buds are singing and my feet are dancing!” In another surprising development, post study interviews have also found that the positive effects of TTITBITO chocolate are increased for patients by eating while laying reclined on their couch and watching a movie of their favourite genre. One participant who watched the movie Chocolat while undertaking her TTITBITO treatment, says her libido increased by 362%. Unfortunately, later that week her husband was admitted to hospital for bilateral hip replacements.

Regulation of this new and exciting medication will need to be tightly controlled as there are fears that a TTITBITO black market could develop with people desperate to get their hands on this delicious treat. It is likely that patients will need to go to TTITBITO clinics and be dispensed a weekly dose to lessen the occurence of overdoses. It is also feared that children may be easily hooked on TTITBITO by unscrupulous parents using it to cook children’s chocolate birthday cakes”

Belinda Taylor: PseudoScience Correspondent for the Chronic-ills of Rach.

No Harm

Four years ago, in a neurology outpatient’s waiting room, somewhere in the southern hemisphere…

I’m your eighth patient today, here in this clinic.  Before that, you were doing ward rounds with your students, you’ve barely had time for lunch.  I don’t know this for fact, but I know you’ve seen a lot of patients from the slump in your shoulders, the way you don’t look up when I am too slow to follow directly behind you into your space.  You finish reading something on your computer, maybe it’s my record. You push your keyboard away, sigh and swing your gaze towards me. It rests on me for a nano second.  Then it flits to somewhere over my left ear. Your brain is busy, I can see that. Who knows what thoughts are travelling through your mind?  Not me. But I try to guess, trying to read your body language; trying to find the right way to talk to you based on the incomplete information in front of me.  My first instinct is to apologise to you, for making your day busier.  I give myself an internal faceslap. Your time is valuable, it’s true.  Mine has no monetary value.  The numbers a neurologist like you can earn are a reflection of your worth. But that thought doesn’t seem to cheer you.  You rub your temples and say:
“Exactly why is it you are seeing me!? You POTS people don’t need a team of physicians, you know.  A cardiologist should suffice.”

I’ve been waiting a long time to see you.  Hoping that seeing you is going to make a difference.  I hear you have a brilliant mind, that you might be able to help me. Waiting for this appointment has kept me going.  I know that my medical history is long. I know that the things that have been going wrong for me don’t seem to add up.  I know that I bring my burden of hope and lay it at your feet.  And I see that you don’t want it.  I wish I could have brought you in a cup of tea.  Might you have smiled if I had?  Might you have seen who I am, beneath the data on your screen?

“I am sorry,” I say, my voice barely audible.  “I have a neurological condition and I am seeing you because you are a neurologist”.

If you are taken aback by my response, you don’t show it. Your head swivels back toward your screen. “Tell me more” you intone.  So I do.  I tell you my symptoms as succinctly as I can while you scan through my notes. “hmmmm” and “yes, I see” and “ah”. The nods as we cover each autonomic oddity. You do a neurological exam.  We sit down again. When you look at me, it is as if you are seeing a puzzle. You’re analysing the information you have gathered. You are searching for the placement and order of the pieces so you can see the whole. The pieces suddenly slot into place.  Satisfied, you rock back on your chair. Your next sentence is certain and clipped.

“You don’t have POTS”.

Do I suppose, at that moment, that a cardiologist might not suffice after all? I look at you, wondering what is coming next.  But I am not surprised.  I never really felt like POTS was the whole story, it just didn’t fully explain everything. So I wait for your view of things.

“You have Pandysautonomia.  Pan means ‘all’ and Dysautonomia, well you know what that means, a dysfunction of your autonomic nervous system.  It can’t be auto-immune, because your blood tests are normal*. It appears to be progressive. You’ll be happy to know that breathing is usually the last thing to be affected.  You’ll continue to decline, and then, eventually…”   You don’t say the next part.  You tell me to go an do the things with my family that I need to do while I am still able. Then, you clear your throat, raise your eyebrows and meet my eyes, properly. You push your chair backwards and explain that you have no need to see me again, you’ll send a letter to my General Physician.

You stand, and as I look up, you ask,
“-any questions?”  
and I see that I am dismissed. My inner roar of frustration is silenced, replaced with a whimper as I survey the decline and fall of my future. The small feral creatures of uncertainty that populate my mind have grown into monsters in a few of your short sentences.  I stand, thank you for your time and leave your rooms.

I sink into one of the waiting room chairs.  I am shaking from the effort of holding myself upright throughout the appointment. I’m devastated. I thought you might tell me that all I needed to do was x or y.  I was even prepared to try z. The stress of the interaction has sent adrenalin coursing through my blood stream.  I feel the usual battery of autonomic warning signs.  I wait it all out, half reclined, embarassed, listening to the hammering of my pulse between breaths. I am suspended there, in the waiting room I am desperate to escape from. I think about how you must not know how terrifying you are.  How scary your words. How easily you could have reassured me.

You are already seeing your next patient. The waiting room is so full of people.  I wonder how many of them are for you.  I wonder when you will get your cup of tea.  When you will get to escape from the burdens that crowd your clinic rooms. I wonder what you are thinking as you face that ninth patient.  And I wonder if you really love what you do anymore.

So yes, I am sorry.  I’m sorry you are busy. That the Medical Profession isn’t what it used to be. I’m sorry to be one of the many who demand yet another slice of your mental gifts, your time, your attention.  I’m sorry that you have lost, or maybe never had, the ability to connect with the person sitting in that chair across from you.  Your intellect is a beautiful gift. A valuable gift. Your education and years of training have positioned you to make a living from that intellect.  And just as any person (making a living in a service role) needs to have interpersonal skills; so do you.  If a McDonald’s cashier can afford me a smile on minimum wage, I kind of think you should be able to manage one. I’m sorry to be the one to tell you that, because I don’t think anyone else ever has, or maybe, no one since Med School. I wish I had been strong enough to tell you when I was in your rooms.

Take a break, doctor. Make some changes to your schedule. Fix the system, if it is the system that traps you in such misery. Take a look at the person behind the records, and the person in your mirror.  Both are beautiful, complex, intricate human beings. Try a small smile, a minute’s reprieve from your analysis and timeframes.  And if what ails you is exhaustion, it might be good to remember that you are not Atlas.  You shouldn’t need to shoulder the planet alone. A holiday might make all the difference, you could take one.

Remember that the words you tell your patients are always significant to them. But the things you tell them with your body language speak louder than anything you say in words. And if it all carries on this way, you are not only hurting your patients with your brusque and bullish manner, you are denying yourself one of the greatest joys of medicine. That magical interplay between doctor and patient, when your skills and their need combine to create a job well done.

It’s great to have a masterful intellect. But, did you forget?

First, do no harm.

*general auto-immune screening won’t necessarily show the antibodies implicated in autonomic dysfunction.

Future doctor_pateient(1)

__________________________________________________________

It’s a long time since that appointment. I write about it now, because I spent four years believing, yet fighting, what I was told. That I was on a progressive trajectory, that I would decline towards the ultimate end, that I should do what I want to with my family while I still can.  That is a pretty harmful idea to live with. Or a helpful one, depending on your perspective.  But it is certainly painful.

I’ve since had a much, much better appointment with the same neuro. I don’t hold a grudge anymore about that first appointment, but I think it is illustrative of the difficulties faced by chronically ill patients being seen through the hospital outpatient system. And also of the difficulties facing our chronically stressed doctors. Our bodies may be sick, but their system is also sick. My subsequent search for more answers to all my questions, eventually led me to an immunologist.  My response to immuno-suppression indicates that my problem is indeed auto-immune, and absolutely able to be treated with immune modulation therapy.  I don’t expect my neurologist to have known about auto-immune autonomic antibodies.  But I did expect him to be compassionate and want to help.  Perhaps to do some research with that clever brain of his. Or phone a friend!

What I am saying is that I would like to see a future where doctors understand that they have a wonderful opportunity to limit the harm their patient’s endure, simply by being nice.  I believe that Hippocrates was not only talking about physical harm in his oath “First, do no harm”.  I’d like to see a future where kind doctors are recognised and rewarded for the extra efforts they make with their patient interactions.  And where hospital systems improve the working conditions of all their health workers, including doctors and specialists.  And maybe, one where girls like me; the apologising kind, find the strength to say their piece when they should.

Have you had an interaction with a specialist like the one I talk about, above?  I’d love to hear about it.
Do you think something can be done about the pressures facing doctors in our modern medical systems?

Student

She is standing in the witness stand. The trial has been dragging on, but she is here for a very important reason. It’s time to tell the perpetrator exactly what impact their crime has had on her life. She’s been waiting for an opportunity to make her voice heard.  Yet she doesn’t even know if her words will make landfall. Still, she has to say them. She takes a deep breath and begins to read a letter.

What would you write_(1)

Imagine if you got the chance to tell your Diagnosis exactly what it has done to your life. If you were writing that letter, what would you say? What would your ‘victim impact statement’ describe?  Here’s mine:

headerDear Dysautonomia,

Some of my friends have pet names for you.  But I have never wanted to do that.  Calling you something cute might give you the idea that I’d like us to be friends, when I don’t think that is possible.  I often wish I had never met you.

I’ve had weaknesses in my autonomic nervous system, since I was a kid. And that was okay; just something about me I learned to make adjustments for. Those little quirks of my system, the fainting, the tummy aching, the tiredness.  Those things were just something to accept, like my lack of natural talent on the sports field.  Who needs basketball when they have books?

Then you arrived with full force.  You came in through a window left open by a nasty virus.  You made my already wobbly autonomic nervous system your target.  You hijacked my immune system and made it your henchman. It’s been doing your dirty work ever since.  You hid there, where they didn’t think to look for you. Sneaking around my nerve junctions, sliding out of view as one doctor after another searched for the reason behind my ills.

First, you had a go at my heart.  They put in a pacemaker to limit your influence.  Then my digestion, and my ability to go to the toilet. You made my extremities burn and numb in relentless torment. You troubled my focusing ability and pulled and pushed my blood pressure into a see saw of ups and downs. You made it hard for me to regulate my temperature and threw in some dizziness every time I moved into an upright position, you drowned my days in bone sapping fatigue.  You shifted my career well out of my reach. I felt so purposeless. The doctors gave me pills and potions, enemas and catheters.  For every trick you pulled, we tried counter-manoeuvres. Few of them were effective.

There were times when it even seemed like you had taken the shine away from the best treasures of my life.  My marriage and the motherhood I had longed for.  These gifts were tarnished because I couldn’t be the wife and mother I yearned to be. I was angry with you for that.  Angry on behalf of the beautiful people I call my own, too. I was so angry about the freedom I had lost to you; they had lost to you.

I hoped.  For six years, living with you, attached to my every move, dulling my capacity to think.  I hoped.  Someone will discover something, I thought.  Medical advancements are happening all the time.  Maybe they will identify something important in those minuscule, sparsely funded research studies.  And they are. Little by little the scientific community is inching their way towards something.  I chanced upon a keynote presentation by a neurologist in the States. A man who has studied autonomic ganglia for years. It flicked a switch in my brain and I began to see.  There might be a way to finally let you know, Dysautonomia. You’re not welcome here.

And now, I’m on a very promising treatment pathway; I’m getting the movers in. I just wanted to write you this letter as we attempt to excise you from my life.  My own victim impact statement. All those things above, they are painful facts about why I don’t like what you have done to me.  But there are other facts too.  Surprising gifts you’ve given, even as you have been carving your swathe through my autonomic nerve fibers.

You taught me that I could find things out.  Figure things out, too, things way beyond my artsy brain.  You led me to patient groups where I have found some of my staunchest friends.  And you forced me to re-arrange my interior self. To consider who I am and what I want to be remembered for.  To identify the things that really matter.  To let the people I love know how I feel.  And you gave me back a gift I had dropped a long time ago.  You made me write again.

I don’t know why it is that it takes hardship to gain insight.  But it does. Being sick with a chronic illness, dealing with you, Dysautonomia, seems like too harsh a price to pay, but I would pay it all over again.  To learn what I have learned, to become who I am becoming.  I would like to tell you that although I don’t like you, didn’t want you in my life and would dearly love to see you go, I am grateful to you.  You are my shortcut to wiser living.  A portal into a new and better me.

Thanks for that.
 I also want you to know, that even if I never manage to eradicate you from my life, I will always be your EX victim.  Because I can choose whether or not I continue to be victimised by your presence. And I choose a different perspective. To accept that every torment, is a teacher.

I remain,
Your student,

Rach

 

Across the Ditch

Most of you know that this blog came about because I enrolled in an online course last year.  I thought it was a writing course, but it turned out to be much more.  I had been getting progressively sicker when my wonderful cousin-friend across the ditch, asked me if I would do some writing for her business blog. I was so grateful to have a thing to focus on, a job to do at my own pace… but really nervous that my writing wouldn’t be up to snuff. So I enrolled in a course for bloggers, seeking clarification on what good blog writing looked like.  Turned out that to get the most out of the course, I’d need to create a blog.  So I did.

The course I chose was run by a really ace person in Melbourne. I say ‘ace’ because that is what they say, across the ditch*.  Retro is big over there I think, even when it comes to words!  Our New Zealand equivalent from the same era is ‘choice’. Pip Lincolne is a really choice person, she is big hearted.  And her course goes WAY beyond the craft of blogging.  The community she has created is warm and supportive.  It has given me new friends, new creative inspiration, new hope and even new opportunities.  Among the many great bloggers I have met through her alumni community are the two women I have linked to below. Lila and Carly both blog with complete transparency.  They facilitate significant communities themselves and neither is afraid to tackle the big issues. Which brings me to the purpose of today’s post.

Just lately, across the ditch, there have been some terribly distressing revelations about big name health bloggers.  You might have heard about the very sad case of Jess Ainscough who recently lost her battle with cancer, despite claiming, and (mis)leading many others to believe, that she could heal herself through diet.  And then, the mysterious case of multi-award winning social media darling, Belle Gibson, who claimed to be healing herself of cancers she may never have actually had. The story continues to unfold as thousands of her followers peel off in the shock of the allegations of additional charity fraud.  Belle herself has disappeared.

Both Lila and Carly felt strongly enough about the recent events to write about them.  And what they wrote inspired me to also say something here.  As another ‘health’ blogger, I have always felt that is important to be clear with my readers about the information I provide. You’ll find paragraphs peppered through my writing, reminding you that every person with Dysautonomia is different.  You’ll have heard me urge you to seek the advice of your own medical professionals. But I am also aware that most of the progress I have made with medication and treatment, has come about because like you, I am a reader of information. I have spent years searching for the piece of the puzzle that might help. I found my piece, and I recognise that sometimes it can just be a sentence, somewhere, that mentions that one word you might need to send you searching on a new tangent.  I sincerely hope you are able to find your puzzle piece. I hope that if the piece you need is a similar shape to mine, you’ll find easy to understand words all about it, right here. If not, keep on looking, keep on seeking. And most importantly, keep on verifying what you read.

The only thing that I am expert on is my own journey through chronic illness.  If you also have a chronic illness, it will be different to my journey. Much of what occurs for me might be irrelevant to you. What I hope will be very relevant is less the treatment pathway I have taken or the specifics of my medical history, but rather, the attitudes and values I bring to this blog.  The things I have in common with every one of you, sick or not. The things that make us connect and understand each other.  The human experience.

I am so grateful to have this blog.  To be getting to know the people who are kind enough to stop and read it. To be building a community over on facebook.  So, in the spirit of Carly’s Health Blogger’s Pledge:

I promise to always write with authenticity.

I promise to use my words carefully.

I promise to carry the responsibility of writing for my community with integrity.

I promise to continue to share in ways that are helpful, hopeful and honest.

It’s a real privilege to receive feedback from you about how the words I share have helped you.  It never fails to surprise and delight me that what I am doing has a purpose and can help. It feels better than any job I have ever done, to lend my support, my thoughts, my words to people who want to read them. Wowsers!
(I’m really getting into the retro ‘wordage’ now!)

I hope it continues to be that way for those of you who have found me here and discovered a kindred spirit. I love to blog. I love blogging about and for people with chronic illness, invisible illness and differing ability. You are very cool, very resilient people. I love blogging about motherhood, womanhood, and every other thing that occurs to me and gets my fingers tapping. It’s been a diverse spread so far. I love connecting with you and your own ideas about life.  Thanks for meeting me here.  I promise I will always be authentically me, in all my honest, oversharing, emotional and verbose ways.

Isn’t it all about that?  When I share my heart and my hopes with you, there is something in you that feels the same way. Something that makes you think ‘me too!’ and in that recognition; there, that is the magic that keeps me blogging.

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*’Across the ditch’ is a friendly expression used between Australians and New Zealanders, it describes where the other country is in relation to our own.  It works both ways. Our ‘ditch’ is the Tasman Sea.

 

Tasman_Sea
Source: Wikipedia