Distance Vision

Two glorious days.

A ribbon day; discovering my love for plaiting horse tails, watching the school team compete, seeing the grins on the faces of each rider, the immense pride as a ribbon is tied around their pony’s neck. Noticing that the ponies feel pride too, a slightly rounder arch to the neck, prettier steps, a job well done.  The company of good people, shared food and the smell of sweet hay.  A daughter, reading horse encyclopedias after lights out… long after she should have let her exhausted self go to sleep.  Such a special day, and I got to be there, standing for hours, because I could.  My friend asked me if I find the heat difficult to deal with.  Yes, but not like before.  My very cells zing with some kind of happy elixir as I think that thought.  Not like before.

And today, my two little riders out on horseback.  Me, sitting on the grass, breathing in the country air and swinging my head from arena to paddock to take it all in. There is such a joy bubbling up from within, I can’t contain it. I smile at everyone and feel like hugging them all.  They are all so precious. I see all of their individual facets like I am marvelling at gems I have not seen before. So beautiful; our humanity. So breathtakingly gorgeous.

Driving home I see the lines of traffic snaking out in front of me along the highway. It’s busy. We’ll be a while. I turn up my daughter’s new CD and relax into the beat. Megan Trainor, it turns out, is not all about the bass. There is much more to that talented young lady.  I listen to this song, ‘Like I’m Gonna Lose You’ and the tears spring up behind my sunglasses.  It’s beautiful.  It’s how I feel about all of this.  The beauty of people, of life, this way.

And I notice the clouds in the distance, glorious in the late afternoon sun.  I see them, so far away, and realise that seeing things far away is not something I am used to doing.  My long range view has returned; I am seeing the breadth and depth, the future of life. I am loving it all, because really, what more can a heart do, filled up with the beauty of all of this?   My world is expanding in all directions.  I exhale and let the tears track new lines, down my cheeks and across the corners of my smile.

Do you know how beautiful you are?  People?  World?

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TCKs

Hello!  I am a terrible twitterer, but today I woke to find my blog listed on a best of TCK list (Thanks Summertime Publishing!).

If you came to my site today through that link, here are some of my posts that relate to being a TCK:
http://rachelfaithcox.com/problem-like-maria/
http://rachelfaithcox.com/reunion/
http://rachelfaithcox.com/papua-new-guinea-paradise-lost/

Are you a TCK? Follow summertime publishing’s tweets, they’ll be adding more bloggers and books to their directory…
http://www.expatbookshop.com/extra-resources/directory-of-tck-cck-blogs-websites-a-to-m/

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Early Days

Early Days
Yesterday I went to see my neuro-immunologist.  I was really thrilled to be able to show him what has happened to me since I started my new treatment.  He, in turn, was enthusiastic about recommending IVIG or Rituximab to try to address the unknown antibodies that have been wreaking havoc in my autonomic nervous system for so long.

What a foreign place I find myself in, here in the land of the well. Yet, utterly changed from my years in the wilderness.

I hear small whispers in my ear. “Be careful”, “Don’t overdo it,” “Choose your activities carefully,” “Do everything while you can,” “It’s now or never”.

I am more hopeful than I have been before, because we have found strong indicators that my problems are auto-immune.  But there are equal parts fear and doubt.  I guess you can’t be sick for as long as I have without being afraid that it will all come crashing in again. You can’t take feeling better, for granted.  And because I don’t fully understand the science, I worry that I might be duping myself about it all. Maybe, somehow, I’ve convinced myself I am getting better. And that willpower will only carry me so far?  It is a ridiculous thought, but there nonetheless.   I have thoroughly examined my sanity, I have canvassed my doctors and my nearest and dearest.  Apparently, I am sane. I just need to find a way to rest in this current state of relative wellness.

And then; there are the others. As each new day arrives and I wake, swinging into an upright position and moving to the bathroom with ease, I remember. How waking used to feel like I was drowning. I remember that for so many of you, it still does. And the burden of your illness weighs heavy on my heart. How can it not?  I know your suffering. I know that for you, it carries on. And I try to fill my day with every little thing, for you. For me. For the unfairness of it all.

I am in this place of plenty, but I have forgotten the language of ease.

I can’t make it through a grocery shop without gushing to the checkout attendant.
“How are you?” she asks, because it is part of the script.
“Oh, I am GREAT!  So good, like, really really wonderful!”  I grin. And she eyes me with suspicion.
I can’t help out at my kids’ school without giddily and sincerely responding to thanks.  I yelp, “My pleasure!”  because it really is.  Maybe it raises some eyebrows. This happy girl I am. Maybe it causes discomfort.  Maybe it seems over-the-top.  But it is not.

This life, this ease of moving, this chance to do things and be part of things.

If only you could feel how I feel.

I asked my specialist yesterday if he thought it was reasonable to expect this good run to continue.
“It’s early days” he said.  And I thought, in my stubborn way, that early days are always followed by late days and all of those days together make up more days of good than I was having before. And I shushed the whispers in my ear and skipped out to the car. The hubster commented that the last time we were parked in this carpark he’d had to help me to the car and get me into the seat.  I swung my legs into the footwell and grinned at him.  We drove home, my hand on his leg.

My heart in my mouth.

Please, please let this continue.  I promise I won’t waste it.  Not one second.

 

YOU ARE SIMPLY THE

The Simple Act of Noticing

#1000speak

http://www.rileyillustration.com/artists?artist=pierre-le-tan
Illustration by Pierre Le Tan

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It was wintry.  Outside my windows, the streets of my quiet suburb were laid in dark grids across the map of night.  The children were sleeping, the fire was on. I was curled up on the sofa, reading a book.  And I heard a noise.  A high, panicked, voice. The sound of a body slamming against a wall, or a floor. A flurry of movement.

Must be someone’s TV.  Just some scary movie.

I returned to my book.  And there it was again.
The hairs stood up on the back of my neck, and I knew.  That screaming voice was real.  That voice belonged to someone who was terrified.  I rushed out onto our balcony. I craned my head around the corner of the house in the direction of the noise.  A deeper voice shouted out

“This time, I am going to kill you!  I’m getting a knife!”

And all in a single moment, a woman fled onto the dark street.  Her nightie billowed around her in the blast of cold wind.  The whites of her eyes flashed in the black night.  And those eyes met mine.  I put my finger to my lips and frantically motioned for her to come through our gate.  She suddenly understood and slipped into our property while the man raged onward, almost now at his front door.  I could hear his daughter trying to reason with him.
“No Daddy, don’t kill her!” I was worried for that girl, but I knew that first I needed to get her mother to safety.

When I reached her, the words tumbled out of her mouth between breathy gasps. Her hands were shaking, fluttering up to her face. No, she couldn’t come inside, “I’m afraid” she whispered, her eyes imploring me for help, even as she refused to accept it. We compromised with her hiding out in the shed. I whispered that she must stay, breathe slowly, wait for me to return. And something big, like an angry mother lioness, began to grow inside me. I stormed out onto the street.  The man, someone I knew to be a friendly, sociable neighbour; wore a rage so deep and fathomless he seemed to have a face that was not his own.  All bluster, I demanded to know what he was doing waking up the neighbourhood. He tried to smile, shrug, appear conciliatory.  But it came out as a grimace, his rage fighting his need to appear normal. “It’s nothing, just looking for my wife” he answered through clenched teeth.  “Get in the car!” he yelled at his daughter.

“No,” I said, with a forcefulness that came from the lioness, “your daughter is coming home with me.  Go find your wife.  Go sort out your problems without dragging her into it!”  My voice lifted with indignation, as I put my arms around his daughter’s shoulders and steered her towards my house.  I was afraid he would see through the bravado (please, please don’t guess where your wife is).  And over my shoulder I hurled, “I will bring your daughter home in the morning when you have sorted it out, and I will not discuss this with you further!”.

He began to protest, and then abruptly, sped off. Somehow he still believed that his wife had run off into the neighbourhood, I imagine he thought she couldn’t have got far, not in her nightie, in public.  I rushed the girl inside.  I smuggled in her mother; so glad to know her daughter was inside too, safe. I was afraid that he might figure out any moment what I had done.  They hid in the room farthest away from our locked door.  In barely audible voices they talked about what to do next. They were so brave.

They called the police who arrived and located the man. The police took him into the house to pack and then took him away. Thanks to the police, to her courage, her daughter’s stalling tactics and the simple act of someone noticing, a new future opened up for her.  For the first time since her marriage, my neighbour and her daughter were free from a terrifying, hidden tyranny. None of us had even known it was going on.  The only thing I had ever noticed about their house was that they never drew the blinds.

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Don’t get involved, they tell us.  Don’t intervene. If you notice something, look away, forget you heard it.  It’s safer that way.  And maybe it is… but only for us.

It’s not safer for them.  What makes our safety any more important than theirs?  Aren’t we all just as valuable as each other?  I could have picked up the phone that night and called emergency services, but by the time I had, the murderous intent of that man could have erased a beautiful person from the earth.   She could be gone.  People need people. Women need women. We are meant to live in community.

Nearly two years have passed since that cold night.  My neighbour is now single, but very much alive. After the police helped her husband off the property that night, the marriage ended; he never crossed her threshold again.  But I still listen out. If I hear something I still stop what I am doing, to investigate. I will always remember that night. The importance of the simple act of noticing.

According to Daniel Goleman, the author of ‘Emotional Intelligence,’ studies have shown that our brains are actually hard-wired to help. We are pre-disposed to acting out of compassion.  I didn’t do what I did that night because I am inherently good, or kind.  Or even because I am foolhardy.  I barely had time to process what was happening until it was done.  I did what I did simply because I noticed something and I reacted to it.  I did what I did because I am human.

So if we are all innately helpful, why is there so much terror happening in the world?  Why the vacuum of compassion?  How has all this misogyny and violence and hatred escalated into so many wars?
Why don’t we notice each other?

Apparently, a surefire way to ‘turn off’ our inherent tendency toward helping, is by focusing on ourselves.  People who perpetrate acts of cruelty have turned off their innate compassionate wiring.  They are deeply absorbed in the justifications of their own thinking.  Their own creed.  Their own agenda. Themselves.  Even the mute onlooker, the passer by of someone suffering on the street.  That person is just as likely to be absorbed in something, self-involved; a phone, the next task, lunch. Selfishness distracts us from our better selves.

Look around you next time you are on a bus, or in a cafe, or doing the school run. When you are at work, or busy with your daily tasks.  How many people are completely absorbed in themselves?  Have you recently taken the time, without your handheld device or distracting thoughts, to focus on someone else?  To really notice how they are?  To ask them, even? To observe people, be aware of their human value. To seek moments of connection.  When we pause from the demanding distractions of every day life, our natural human instincts have an opportunity to operate. Maybe we need only to do this in our own homes, our own neighbourhoods, our own communities.  Perhaps if we all did this, more humankindness would have a chance to flourish. We could grow something really beautiful. And it might even spread beyond the boundaries of our suburbs, it could even stretch out to cover the whole wide world.

Today, a thousand Bloggers are uniting on one front.  Today we are all writing about compassion. The aim is to provide an antidote to the violence and destruction in our world.  The hope is that by discussing compassion, we can help it grow. You can search under the hashtag #1000speak.  Will you join us in speaking up about compassion today?  Tweet about it, talk about it?

You can even practise a bit of compassion in this very moment.  Look up from your corner of the world. In the simple act of noticing; that is where compassion begins.

And if you want to, you can watch Daniel Goleman’s TED talk on compassion here, please do watch, it is so worth it:

To see more of the posts written as part of the #1000Speak campaign, see the link-up below:
http://new.inlinkz.com/luwpview.php?id=497564

Because, I’m Happy.

There have been some significant changes in my physical experience of life lately.  I’ve been putting them all down to my new steroid treatment regime.  A not-so-scientific assumption made by me.  You see, my improvement is rather a lot better than can be explained by my protocol. It doesn’t make good scientific sense, hence the terms ‘magic’ and ‘too good to be true’ from my general physician and immunologist.  And my attendant happiness is quite over the top, according to my nearest and dearest. It’s not just a surprise to the doctors who have seen me, my husband, kids and best friend are all a little taken back by this new ‘feelgood’ Rach, too.  She’s a lot different to the previous Rach. Even though I have been working really hard on maintaining positivity and searching for answers for all these years; this level of happiness has only been in my world since the immune suppression therapy happened.

Today, I received an email from my friend, Sheryn. Attached was this fascinating TED talk by Shawn Achor.  He’s pretty famous for his psych research into success and it’s relationship to happiness.  You can read more about him here.  And you can watch his TED talk below, more than 9 million people have already, so there must be some compelling ideas in there!

Something he said really struck me.   See, when you are sick, people feed you platitudes and positive thinking speeches a lot. And it all falls pretty flat.  After a while, you even stop responding to them, because those proverbs, or ‘silver lining’ statements don’t actually help much. They just make you feel inadequate for not being able to take them on board.  More work, more effort, more trying in an already trying set of circumstances.

Shawn has done extensive research on happiness, and this is what he says about it:

“Happiness is NOT the belief that everything is great,
happiness is the belief that change is possible”.

This, and some of the other things he said in his very entertaining talk, have had me contemplating my state of wellbeing slightly differently.  Is it possible that I ‘feel’ better than I can reasonably claim to feel, because I believe that my circumstances are changing? Is all this upsurge of happiness creating a better experience of living in my body? Is it in fact, the reduction of fear for the future?  Perhaps, something to do with laying down that burden of believing I am headed down this disastrous path with only one possible outcome.  Now, I have other possibilities.  Based on my strong response to steroids, we know that my problems are largely auto-immune.  An auto-immune aetiology means treatment, treatment means real hope.  Real hope breeds happiness, ideas about the future; a sense of buoyancy.  Could I be feeling inexplicably better, not only because of the immune suppression, but because I am happy?

It’s something to contemplate. I think we are learning more all the time about the connection between mind and body.  I’m not saying that if you are sick you just need to get happy and everything will be alright.  Far from it! There are genuine and significant physical reasons for illness.  And maybe there are emotional factors that can impact your illness further.  Or indeed, your wellbeing. Shawn Achor suggests ways we can improve our mental habits that will lean us into a more positive frame of mind, but I am not sure if being grateful for three things a day, journalling, meditating and performing random acts of kindness would ever swing most of the patients I know into a different prognosis. What I am saying, is that how we feel emotionally is a part of how we feel physically.  It’s something I hope to explore more.

How what we feel is connected to how we feel.

For now, despite how unsettling Happy Rach is to those around (!) I am riding the wave.   It might dump me at some point, and I’ll probably get sand in my togs and water up my nose.  But right now, I’m riding high, surfing that wave of happiness.   Can you see me up there on my metaphorical longboard, waving at you with a stupid big grin on my face?  Sunshine on my shoulders and wind in my hair.   Hope on the horizon…

Can you see me riding that metaphorical

Because I’m happy.

The Religion of my Heart #1000speak

On the 20th February, #1000speak will have it’s day.

#1000speak is a blogging movement for compassion. Over a thousand bloggers will be writing about compassion on the same day, in an attempt to bring more balance to world.  In an attempt to focus on the beautiful things about humanity.  The way we are able to get alongside one another and help each other, empathise with one another and even take action toward making life better for others.

Compassion

The subject of compassion is one that is close to my heart. A huge part of my purpose in blogging, has always been to improve awareness and understanding about people with ‘invisible’ illness.  Why?  So that people will have more compassion towards the people in their community who are suffering. Invisible illness sufferers, people with chronic illness or invisible disabilities are not the only people suffering, but they are people whose suffering I understand first hand. I know how desperately frightening, lonely and difficult it can be, living with an illness people neither see or understand. And I want to write words to help people see it, to help people understand it. I hope that my blog, my efforts will make a difference for someone.  I hope that their families and close circle might read the words of someone like me, who knows what it is like to deal with the things their loved one is burdened with.  I hope that my words might give them access to a new comprehension of how it is for them. It’s why I wrote this post, Imagine.  It is still the post that draws the biggest numbers, because it explains chronic illness in a way that any person can understand it.  If you are struggling to find a way to explain your illness to your friends and family, share Imagine with them.

When you look at the latin root words for compassion, you will see why compassion is so central to my purpose.  Com means withPati means suffering.  Compassion means to suffer with.  It is closely aligned with empathy, but not the same thing.   Back in June, I wrote this when I was reflecting on my relationship with religion, it is deeply entwined with my thoughts on compassion, so I thought I’d include it here.

“My soul has been trying to get it right.  I try hard to show kindness where ever I can.  This is part of the religion of my heart.  I try to see all people for who they are without the damage that has been inflicted upon them.  I try to bring thoughtfulness and calm.  I try to connect and cherish.  I try to make the step toward a person rather than take a step back.  I try to add value to the world through the children I have brought into it, by helping them build character and strong values. I try to practise compassion and most of the time, I succeed. I believe in choices and consequences and the importance of making sound decisions.  I believe that we are all important, regardless of creed or religion.  And in my ‘religion’, I think having a good laugh at myself and at anything ridiculous is good for the soul”.

As I prepare for my February 20 post on compassion, I’ll be posting things here on the blog and on the blog facebook page.  What the world needs now is more compassion.  When we can suffer with each other, regardless of the differences between us, we will find a new road towards peace, love and understanding.

Watch this from Brene Brown:
https://vimeo.com/81492863

To Be.

tobeornottobe

Toward the end of last year, just as my sorry self was beginning to think I was running out of anything important enough to offer the world, I received an email that heralded a big change.  It was from Kylie at the Be.Accessible organisation.  I’ve written about them before, here.  They do excellent work in New Zealand: working onsite to improve accessibility across the country, increasing employment prospects for graduates with accessibility issues, championing the thinking about accessibility and community with the big thinkers of the private sector and developing leaders for social change.

I had written a piece about my birthday shopping expedition.  It was an accessibility nightmare.  You might have seen that piece, it was called Gone Girl.  Well, Kylie read it and emailed me, inviting me to a meeting to discuss ‘synergies’.  I thought that maybe she wanted to talk to me about my writing, so I went prepared.  I took a copy of my stats from the blog and had prepared to answer questions of the commercial kind.  But Kylie and her colleague Iris, wanted to know about my philosophy.  My core beliefs.  My illness journey and why I write; they asked if I knew what my audience was and for the first time I had an objective measure of what those stats meant.  It was a turning point for me. Kylie asked if I had thought much about the future of my blog and the directions my writing might take. And she outlined the Be.Leadership program.  They invited me to apply.

I came home fizzing. My whole body was shaking with the effort of the meeting, the nervousness I had felt and then the excitement as a whole new possibility opened up for me.  It’s one of the things I have learned to love about having a life that has swerved so far from my original plans. It keeps surprising me!  I applied, and then, on Christmas Eve I received the message I had been hoping for.  I had been accepted into the program.  Every year, 20 people from the disability community are selected to undertake a year of inquiry, reflection and growth in the field of social leadership. We’ll be engaging with leaders from a range of industries and sectors.  We’ll be workshopping, discussing, thinking and growing as leaders ourselves.

One of the things I thought had passed me by when I got ill, was the opportunity to do further study.  I just didn’t know how I would manage to physically do all the things required to even begin.  How I would be able to manage a fixed schedule with an unpredictable illness?   But life seems to be smiling my way.  I will be studying, after all.  I’ll be studying with an organisation who are committed to accessibility, they are perfectly positioned to understand diversity. So it will be possible for me to make the accommodations I need, to do what I need to do. And I will be studying something I am passionate about:  how to help make our society one “where everyone can just BE.” (Minnie Baragwanath).  I’ll be representing the unique perspective of people suffering with invisible illness and disabilities.  I’ll be writing.  And if I continue to feel as I do now on pulse steroid therapy, I’ll be able to do it with so much more energy.

After years of pushing against a tide of impossibility, my own sea of troubles, there’s a ship on my horizon. Once upon a time Shakespeare penned the timeless question; “To be or not to be?”.   I smile, as I write the following words: ‘to Be.’ is my answer.  To be all that I can be.  The programme starts in March, I am gathering together my reading list and filling my head with all manner of anticipations! But before I get all carried away with it, I want to say thank you; because in all truth, this pathway has opened up for me because of this blog… and that wouldn’t exist without my readers. That’s YOU!  I have found that writing about the things that matter gives me purpose, knowing you care about these things too gives me hope.  Thank you for giving my words the chance to enter your space. Thank you for reading and encouraging and helping me through all of the difficulties.  Thank you for sharing with me a passion for growing a compassionate, understanding community for people with invisible illness and disability. Now, it’s time for us to celebrate something great.  The start of an exciting new learning journey.  I can’t wait to share it with you!

I’m off to Be.Leadership!

teddyrooseveltP.S The above quote was mentioned by Bear Grylls in his show, The Island, on the telly last night.  He was talking about great leadership.  It stuck with me because I think it is a vital part of leadership. How important it is to show people you care before you can hope to lead them.  It is my desire to be that kind of leader. I’ll be thinking about that while I prepare for my first ‘Be.Leadership’ task.  Watch this space!

To be or not to be?

Hundreds and Thousands

1521719_10153162285630815_8428987546632118258_nHello.  I’ve been having the sort of family weekend I have been dreaming of for a long time.

A normal kind of weekend.

Let’s see… a bit of shed building, a trip to the airport to pick up Ceci, supermarket shopping, baking, a few loads of washing, movie night, a short family bike ride. A bit of blogging.

Did I mention baking?!  I just banged out a double batch of our family’s favourite chocolate cake!  Then I wrapped the individual portions and popped them in the freezer for lunchbox treats! And yes!  That is worth all those exclamation marks! It feels… so good.  I’ve had this enormous well of frustration over the all the mummy tasks I haven’t been able to do; it’s been getting deeper and deeper over the years.  Sometimes I have let myself wallow in it and feel very, very miserable about it. But today I was able to drop the bucket in and start ladelling out some of the overflow, because today, I did a whole mummy task!  It feels like a real achievement, kind of a yardstick of how much better I am feeling.

And as an added bonus, I have a blogging friend who runs a regular instagram baking event.  She calls it #sundaybakingsunday.  I’ve wanted to join the sunday bakers since I first found out about it, but by the time Sundays rolled around, I was always too unwell.  So this Sunday, I baked, and I instagrammed it! I’m not much of an instagrammer, so that felt like a double win. Thanks to having the ‘roids on my side!  Rach on ‘roids is such a different creature to get used to.

She contains all of the latent wishes of the Chronic-ills Rach.  She carries all the internal lists and hopes and pressures. She is determined to use all this Steroidal benefit to good use.  She’s on a mission! But if she is honest, she’s overdoing it a bit.  Probably a lot. She’s been racing around like a crazy thing, trying to ‘catch up’. And so she crashes.  And it’s true, she recovers much faster than she ever did before.  But she’s feeling a bit stressy.  A little overwhelmed.  Probably a lot like the average Mum.

Before Kellie passed away, she and I were talking about how it was going to be when she got better. She said she was afraid she would take wellness for granted. She didn’t want forget the lessons she had learned while she was sick and go back to the busy-ness of life pre-sick.  She wanted to remember what was important. We promised each other that we would keep each other on track.  And I have been thinking about that conversation.

I seriously doubted I would ever feel like this again, you know? Able!  So I wasn’t prepared when it happened. But I am feeling more able, and it is a carnival of possibilities!  I don’t know how long these good effects will last, or if this treatment regime will eventually lose against the ‘thing’ that is attacking my autonomic nervous system. So I am conscious that this time I have on the other side; this feeling-good-ability, is so very, very precious. I don’t want to waste it. So why do I find myself heaping on the pressure? Diving into stressville? Why must I cram so much into each day?  I’m like a starving creature in the face of a feast.  I’m so afraid someone is going to take it all away.

The hubster and I had a chat about that today.  About taking it easy, slowing down.  That maybe I need to “Settle, petal”.  So I am here, on my bed, in my ‘corner office’  …taking some time out to write this little update.  I hope you are having a good weekend too.  I hope there is enough of the relaxation to balance out the tasks.  I hope there’s a little bit of mooching in there somewhere. I hope you are getting the balance right.  I hope we are all remembering what is important.

Regular life has become pretty busy since I was last here!  Slow down you lot!  And you, too, Rach on ‘roids.   🙂  You don’t actually have to do hundreds of thousands of things just because you CAN.

Do you feel overwhelmed by the pace of normal life too?
Are we all just a little bit crazy with all the things we try to get done?
Why do we do that?

Uncharted Territory

I am so excited to be writing this post!

This morning I had my appointment with the immunologist who is overseeing my steroid infusions.  We went through all of my symptoms; what has improved since the infusion, and what has stayed the same.

I am able to drop one of my medications!

But that was only the start of the good news.  He is pleased that I have had such a positive response to steroids.  He wasn’t expecting it.  He said that if I hadn’t, my options now would be severely limited.  But I have!  And I am starting to really believe that a different outcome might be possible.

Taken as a whole, the last three weeks I’ve felt better than I have in the six years since I first got hit by a nasty virus (let’s call it the ‘thing’).  Even feeling a little better would have been a win.  But I have felt, overall, a lot better. Better even than an improved sense of wellbeing, is that some of my autonomic dysfunction is also better.  Of note, I’ve been less dizzy, I am no longer constantly nauseous, my post-prandial bloating is reduced and I have had better (though not normal) bowel and bladder function.  I can sweat in some places that I couldn’t sweat before. And my fingers, three of which on each hand, didn’t wrinkle in water before steroids, now do.  In addition, the neuropathic pain in my extremities, hip, pelvis and left leg are vastly improved.  We haven’t checked my pacemaker statistics yet to see if things have improved there, but that will happen over the next few weeks.

My specialist explained that this response really puts us in uncharted territory.  A positive response to immune suppressants, means that the ‘thing’ I have has been attacking my autonomic nerve conduction and pain receptors by switching on an immune response in the wrong place. This immune response is suppressed by the steroids.  Because the erroneous immune response is suppressed, my body is functioning more normally.  This may indicate that nerves we previously thought were permanently damaged may, in fact be okay.  Which in laymans terms means I might be able to improve my autonomic nerve conduction and pain with immune modulation.

It means I am a better candidate, on paper, for further treatment.  So the next step is for me to see all of the specialists in my team.  I will go back to the other immunologist, my neurologist, my cardiologist, my urologist and my gastroenterologist.   They will provide their opinion on my function mid-steroid therapy.  If they concur with the immunologist, that this steroid response is good news, there will be more treatment options available to me.  I am so full of gratitude and joy.  I am not sure if I can properly explain.

Instead, I will let the pictures do the talking.  The photo on the left shows me on a typical morning before immune suppressants. The one on the right, I just took, standing in my kitchen after climbing my own stairs;  after my appointment this morning.  I feel good.

Who's That Girl_

Me, that’s who!
The Me I am meant to be!

IMPORTANT:  Every patient is unique.  The causes of Dysautonomia are varied and complex. If you suspect that you have an auto-immune variant of Dysautonomia, please seek the advice of an Immunologist.  Their recommendations for you will be based on your own medical history and individual situation. I do not claim that Pulse Steroid infusions are a cure for Dysautonomias.  It is still early days for us in my six month course of this treatment.  Continued efficacy of this course of treatment is our hope, but as my specialist said, we really don’t know what will happen next.  We are thankful that it opens up further treatment options.  We are particularly hopeful that the 20% chance of remission will be odds that fall in our favour.   And of course, I sincerely hope that if you have been battling with Pandysautonomia in a similar way to me, you will be able to explore what this might mean for you.  I wish you all, at the very least, the same experience I have had so far.

Life is a beautiful thing.  Don’t give up!

Out of the Woods?

Screen Shot 2015-02-03 at 10.48.21 am

I’ve been listening to my daughter’s Christmas CD in the car this summer.  I like it when the kids like music that I like too.  It doesn’t always happen! My son is into The Scat Man, and although the sentiments are lovely (think bad rap: I wanna be a human being/ not a human doing/ I couldn’t keep that pace up if I tried/  But if part of your solution/ isn’t ending the pollution/ then I don’t wanna hear your story told…) the relentless scatting and boppy beats drive me crazy.  So, given the alternative, my favourite track on Bee’s CD is a song called Out of the Woods.  It’s here:

Taylor Swift: Out of the Woods
(this was filmed right here in New Zealand, I like that)

I love this track so much.  It makes me think of the things that are going on in our micro world at the moment.  My early fantastic flurry of a response to steroids, my more recent dip back into some of my less fabulous symptoms.  It’s a rollercoaster hope ride. We’ll see the immunologist again tomorrow.  In 24 hours I will know if he thinks my response is a good indicator for a next step. And I’m rolling down the track, thinking “are we out of the woods yet?  Are we in the clear?”

It’s a catchy set of lyrics, I like the repetitive mantra.  But what makes the song really something is that beautiful line somewhere in the middle.  The writer and her partner are in the hospital, after a frightening experience, they’ve been in the metaphorical woods, when:
“the monsters turned out to be just trees…
and when the sun came up
you were looking at me”

I like that because it makes me think about my man. The road has been treacherous and difficult.  There are scary things around every corner. But when the sun comes up, he’ll still be looking at me.  🙂
Thanks BobbyD.  I’m glad to be navigating these woods with you.