Ora; to survive, escape

*Warning.  Trigger material, suicide, depression, anxiety.

black silhouette of girl in boat
“You’ll be the boat and I’ll be the sea. Won’t you come with me?” -Lisa Hannigan (lyrics and artwork from Lisa’s music video; Ora).

Here is a definition from the Maori Dictionary

1. (verb) to be alive, well, safe, cured, recovered, healthy, fit, healed.
2. (verb) to survive, escape.
3. (verb) to recover, revive.

In New Zealand, “Kia Ora” is our Te Reo Maori greeting. It is used to say hello, wish good luck, or acknowledge someone’s presence.  “Hauora” is the life breath of wellbeing. When we press noses, or ‘hongi’ we are sharing the Hau of one another. The concept of Ora is a beautiful one. I have been seeking Ora my whole life.  Desperately when I was physically ill, and again when I was mentally ill. Just now  it feels like every definition of this word fits my feeling of Ora.

Today I heard a song that made me shiver with recognition. It is called, simply, Ora.  It is composed and sung by Lisa Hannigan.  I don’t know if Lisa Hannigan has used this word the way we know it in NZ, but I liked the synergy. So today, I’m bringing the two together. You can listen to it below.

To me, this song is a siren song. It is an echo of the dangerous thoughts in my quiet mind that told me I should take my life, that it could be simple, that I owed it to my family.  I don’t think Lisa’s lyrics literally mean that, but they sounded like the false comfort of the thoughts I had.

“Bleach me to silver
Under the moon
Pulling the water round
And me to you

I’m going home”

Those type of thoughts only happened when I was not in my right mind.

I could easily have not recognised them for what they were.  They seemed so reasonable, so calm. So devastatingly logical. But my analytical mind would not let go of me.  It asked me questions;

Why would you fight for survival and then throw your whole life away?
(I wouldn’t).

How could you leave them, those treasures of your heart, your beautiful ones?
(I don’t want to, I just want to leave the pain, free them of me).

Do you want your babies to grieve their mother as you grieve yours, only flooded forever with the acid sting that it was your choice to die?  (NO!)

Can you wait a little longer, wait and see if this torment, too, shall pass?
(I don’t think so, but I will).

Why are you thinking these thoughts, Rachel? What has changed?
My meds!

I’ve written before about my CRPS (Complex Regional Pain Syndrome), arising from Gynaecological surgeries and ongoing lady issues.  It’s been a blow, to have fought to get well and still have that millstone around my neck. I am going in for another surgery in three weeks time. I hate Gynae surgery. I hate Gynae pain. I hate taking medicines and having to go to the hospital so frequently for outpatient clinics. I know I am lucky to have the service available; I am so fortunate to have wonderful experts who can help me. I’m currently under the care of an excellent Gynaecological Surgeon, the Pain Team, a Health Psychologist, a Pelvic Physio and the Mental Health Unit. But oh I am weary of hospital crap.

A few months ago, I disappeared from Facebook and took steps to make my life simpler. I left online patient groups, I stopped seeing more than my immediate family and closest friends. I was hanging on by my fingernails, hating myself and my problems, gritting my teeth and pushing through. I kept telling myself we all go through lows. But then the thoughts began. Nasty, quiet, sinister little suggestions. They felt like truth.

I asked my pain doctor about my meds. He thought it was not likely that they were causing my shift in thinking. We pushed on. I was referred to a psychiatrist at the Mental Health Unit to see if she could find something to help. She suggested I increase one of my meds by a significant amount.  At higher doses it not only helps people with pain, but also with anxiety, a frequent visitor to my state of mind. She listed the side effects, which sounded almost exactly like the Dysautonomic nightmare years I have just escaped from.
Oh no no no no no! The voiceless protests clamoured inside my head.

I left her rooms, got in my car and stared at the world outside my window. I put my head against the steering wheel and sobbed. And then my analytical mind began to yell at me.
Rachel! Something is wrong!  You know it is!
Take charge, be your own advocate again. Sort this shit out!

I called my hubster and we had a bit of crisis meeting, right there on the phone. We agreed that I would call my pain doctor and wean myself off my meds, one at a time and see if the suicidal thoughts abated.  Inside my cells, I think I already knew which one.  I started with that. Within two weeks, I was calmer.  Within three, the thoughts had stopped. I was back in my right mind.  In pain again, but mentally sound.

I resolved to aim for a med-free regime. To see if walking every day might help to naturally boost my seratonin, might help me cope. The Pain Team agreed, under the proviso that we stay in contact if things became unmanageable.  And here I am.  This morning I woke up and took no pills. I went for a walk. I looked at the view. I hummed a happy tune. I came home and drank a coffee, found some sunshine and listened to music. I heard Lisa’s song. And I thought that I should talk about how sweet and sensible that siren song of my own seemed. I should warn people to be wary of dangerous thoughts. They might sound oh-so-kind but they are wolves in sheep’s clothing.

If your thinking EVER turns in the direction of suicide, or suicide plans.  PLEASE GET HELP. Your families and dear ones would NEVER recover from the loss of you by your own hand. It would never be okay, or better, or a relief.  It would never be a good solution.  Getting help is better. Listening to wise people is better. Trusting that this too, shall pass, is better.

If someone you love is acting differently, is struggling to find joy in life, get help for them. You can only help if they let you, but please try.

Some medications do bad things to people in weird ways, ways not intended by the manufacturer or understood by the doctors. Keep telling people. Try something different. Be aware of side effects.  Call for help!
* never cease taking a drug without medical advice

I am so glad I am here and get to love and write and hum and walk and dream and breathe and be!

X ~Rach

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.

Intermittent Self Catheterisation (ISC)

A Girl’s Guide.
to intermittent self catheterisation

Urinary retention is part of the picture for some people with Dysautonomia.  Sometimes, the nerve messages that allow us to pee, don’t work. I am so proud that I can manage my retention myself, thanks in no small part to our in-home continence nurse program here in New Zealand, some googling and a lot of determination!

Learning to self catheterise is one of the hardest things I have done.  Somehow, it is a mental hurdle as well as a technical one.  Even when you have been doing it for a while, there are times when you can’t make it work.  Those times can bring a grown girl to tears.  When that happened for me, my hubster got googling. He passed the iPad through the bathroom door with a quiet “this might help?”. The pictures he found for me helped a little, but I really wished I’d had a more practical guide.

There is nothing so relieving as being able to empty your own bladder. However, when you feel sick, or bending double makes you dizzy, it can rapidly become a stressful situation.   But it is possible!  I and my fellow self-catheterising friends will tell you that once you get used to it, ISC is a proactive skill and a significant personal achievement. It gives you back control of yourself.

For the next two weeks, I am embarking on a new self-catheterisation routine.  Instead of catheterising when I think I have gone into full-blown retention (no pee for two days), I’ll be catheterising after I go to the toilet and measuring my residuals. My urologist wants to see if I am retaining even when I think I have finished peeing.  My bladder picture swings from retention to incontinence.  At the moment, I’m incontinent. It might explain this.  So, because my mind has been full of all the things I will need to do to ‘go mobile’ with my catheterisation, I began to think about how much I have learned in the last two years. I wish there had been a guide that made sense to be back when I began. So I am writing it!  This is for all the newbie cath girls (sorry boys, your process might need to be written up by a guy).

What you will need:

Sterile medical gloves (or sterilised hands)
Catheter (these are supplied in New Zealand by the district nursing service)
Lubrication jelly
A small handheld mirror.
Baby wipes or antibacterial wipes.
Jug (only if you are asked to measure)
A chart and pen (only if you are asked to measure)
A private, lockable location.  You can sit on the toilet or recline in the bath.  When I first started, the bath was easier.  Self catheterisation takes longer than a normal toilet stop. You need to be able to do this uninterrupted.  If you have children and they are very little, set them up in a safe spot for the duration, or even better, have someone watch over them while you are doing your thing.

First, do a vaginal reconnaissance(!)

Before you begin with anything, you’ll need to know where your urethra actually is.  You may be surprised!  I once spent half an hour stabbing my clitoris (ow ow ow!) because I thought my wees came out from what looked like a hole under my clitoral hood.  Uh, nope!  Everyone’s anatomy is different. And the diagrams on the internet aren’t very detailed!  Check out this one.  See?  Not so easy to see what’s what. (Source)

en3009646(I think I shall have to draw something more useful and put it in this post!  Time to shine a light on the subject at hand).
It’s really important to get to know your ‘nether-lands’.  So, to find your urethra, recline in the empty bath with a hand mirror.  Gently stretch the skin on both sides of the invisible centre line that goes from your clitoris to your baby-hole (excuse the basic terminology).  As you stretch along that line sideways with two fingers, look for a tiny opening.  Urethras are very good at hiding and in the beginning, it took me a long time to figure out exactly where mine was!

When you are confident that you know, you are ready to begin.

 

The Girly Bits

 

Gather your materials

…where they will be easy to reach, on a nearby bench or stool. You’ll be one handed, because one of your hands will be holding your ‘nether-lands’ in the right place, so have everything near to the free hand. I am right handed so I use my right hand for all the busy work.

Prepare your girly bits.

Thoroughly clean the areas around the labia with the wipes.  Wipe the inner labia and the area between the inner and outer.  Clean all the way from the clitoris to the poop hole. Always wipe in a downwards motion, never using the same surface of the wipe for a return swoop.  Discard wipes.  Sterilise hands again or snap on new gloves after you have done this.

Get your catheter prepared.

Only open the end of the packaging near the tip of the catheter.   That is the end without the rubber fitting.  It is pointy and has a little hole in it.  Free the end from the packaging and swipe some lubricating jelly on the end of it.  I cover about 3-5cm of the end of the catheter with jelly.  Not so there are globs of it, just so it has a coating.  This will help it slide into the urethra more easily.

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Fold the packaging back over the lubricated end and put it somewhere in easy reach.  (NOTE: If you are using a tube of lubricating jelly, rather than a single use sachet, make sure you never touch the end of the tube with unsterilised hands.  I squeeze a tiny bit out onto my glove and swipe the catheter end through it. This tube should stay with your catheterisation kit, not be used for other purposes).

Just a note on catheters; people develop their own preferences.  The internet picture above shows a short catheter, the photo shows a Nelaton size 12, 40cm catheter. I prefer to use long.  The bigger gauge the catheter is, the faster you will drain, so once you are used to it all, a larger catheter might be your preference. Talk to your continence nurse about which one might be right for you.

Do the business.

You’ll need to be in a position where you can see what you are doing. If you get dizzy, you’ll need to be somewhere safe.  To start with, reclining in the bath was the answer for me.  Now, I perch on the front edge of the toilet seat.   If you are required to measure, position your jug on the floor or bottom of the bath, between your legs. Remove the catheter from it’s sleeve and let the rubber end fall into the jug.  If you are not measuring, you can let the rubber end fall inside the toilet seat.   Keep a good length of catheter up from the toilet bowl though, you’ll need it.

Using one hand, hold back the labia, so you have a good view of that imaginary centre line.

Pointing the catheter in a downwards motion, but pressuring it slightly inward towards you, slowly slide the catheter down along the centre line between clitoris and baby hole. You may or may not have enough sensation to know exactly where the hole is; don’t worry,  practise will help with this part.  When you are at the urethra, (or you think you may be close based on your reconnaissance!) angle the catheter in pointing towards your tail bone.  Repeat this process until you reach it. You will know you have hit the target when the catheter goes in and it stings a little (like that sensation you get if you have a urinary tract infection and you pee) but the sting should be momentary. Feed the catheter in until the wee starts to flow. Eureka!

When the flow slows down,  gently push the catheter in slightly more.  You may have more wee to come, right at the bottom of the bladder.  Do this a few times until you are happy that your bladder feels empty.  Slowly remove the catheter and drop it in the sink. You’ll attend to it soon.

The lost urethra

Pack up.

Gather up the catheterisation kit and return all bits and pieces.  Check the measure on your jug, write it down.  Run tap water through the catheter and shake it out again.  If you plan to re-use the catheter, it will need to be sterilised (microwave sterilisers are great for this) but I recommend a single use when you are just starting out.   Empty jug into the toilet and flush. Remove gloves and dispose of them.   Return your catheterisation kit to its home.  I keep mine in the cupboard next to the toilet.

Recognise Your Brilliance.

Look at yourself in the mirror.  See that person?  She is a total legend.  She deserves certificates and gold medals and pats on the back!  You did it!  You brilliant creature you!  Sadly, you won’t be able to share this most excellent achievement with many, so your feedback will be minimal, but I want you to know that I know just how amazing you are!  That thing you did just there?  Skill!

Just a wee Problem

On my last visit to hospital, I was suffering with a pseudo-obstruction, my bladder had also stopped working. I was admitted through the emergency department and was to go straight to the gastroenterology ward.  The ED staff must have been busy, because on this occasion they decided the ward staff could catheterise me.  Usually, I arrive to the ward already done. By the time I made it up to the ward I’d been retaining wee for two and a half days.  It was excruciating, even without the pseudo obstruction pain and a tummy that was distended further than a ten month pregnancy. When the nurse arrived to settle me in, I whispered awkwardly that I was very sorry, but I had my period and I was in desperate need to be catheterised, “so, so sorry”.  I felt embarassed that she would be doing it, apologetic that she had to.  She shrugged, came back with the catheter and a sachet of lube.  “You do this at home all the time, no reason why you can’t do it now” she said, turned on her heel and left me to it.

I was so shocked I couldn’t speak.  I knew I needed to sort it out straight away. The pain and discomfort was not about to release me just because I was upset.  I didn’t have the emotional energy to fight with her. I took a big shuddery breath,  picked up the gear and inched my way over to the bathroom.  By the time I got myself down onto the toilet, I was in tears.  But even if I hadn’t been crying, I couldn’t even see my girly bits because of the abdominal distention. I took a big breath and did it the way I always do. I imagined I could see what I was doing.
And, there!  I got that catheter in, first go, sight unseen!
The relief was incredible. I’m sure I was holding more than 1L of pee!  It took a very long time to drain my bladder.  But as it drained away I felt so proud of myself. Some things are hard to explain, but when you feel out of control with your body, victories like this one feel pretty important. I would have liked to have run the corridors of that ward shouting “Guess what I did?!  Bloody marvellous, I am!”  I would have liked to have shoved that catheter up that nurse’s nose. That’s what!  But I got myself back to bed, curled up and cried a little bit more.

Wee problems are not really that wee, at all.

 

Calling out My Name

So many exciting things have been happening in my life lately.  Thanks to my friend Sheryn, I made a connection with an organisation called Be.Accessible who are passionate about creating social change in New Zealand. Their vision is for our country to be wholly accessible, so that anyone of us can just, be.  It’s a vision that has a great deal of synergy with my own. My own efforts towards building awareness and understanding in our community here in New Zealand (and with people online everywhere) are all about that.  About promoting understanding and acceptance.

Sharon Davies   Be.Leadership Alumni

I feel very strongly about helping people with ‘invisible’ illness and or disabilities, chronic illness and rare conditions that people find hard to comprehend. I write not just for me, not just for people with Dysautonomia, but for anyone who suffers the torment of not being understood, of finding judgement where they should find kindness.  I use my words so that others might find something they can share with their loved ones. A way to explain what they haven’t been able to explain.  Sometimes it is hard to find the words.

Doing that.  Using my words, has brought me to a surprising place in my life.  My health continues to deteriorate, but my heart and mind are filled with bigger and better thoughts than ever before. I saw my Granny today and she asked “Are you well?” and I could honestly reply to her “All is well with my soul!” I have a purpose and a direction that I never even knew was in my future.  I thought everything was so lost to me. I thought all of those things were out the window. Gone. But here I am, about to embark on something new.  The joy bubbles up from inside, how surprising and wonderful life can be!

Last night I attended an event here in Auckland, down on the waterfront.  It was the graduation for this years participants in the Be.Leadership programme.  The programme aims to mentor people into positions of greater social leadership by providing a year long programme of discussions and learning with some of New Zealand’s great leaders.  Among other great initiatives!  The program cost is $17,000 and this is fully funded for selected participants.  I have applied (squee!) and I am waiting to hear what happens next… so watch this space!

Sharon Davies   Be.Leadership Alumni(1)

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Last month I began writing for the parenting column of a popular Dysautonomia Newsletter in the States. And I met my editor, Ellen, online.  Sometimes when you meet someone, just as it is in person, you just click right away. It was like that with Ellen. She understands me and we have had lots of wonderful email conversations, back and forth from one part of the world to another. She is a wonderful encouragement to me. Recently she sent me this song. It stopped me in my tracks. What a voice. What lyrics!  Thanks Ellen, this song is my new anthem, it so perfectly expresses why I continue to find things that I CAN do.  Life is calling out my name.
Here is Beth Hart singing “Life is Calling”

 

…and, the lyrics…
Sunday morning, the world’s still sleeping
And the rain keeps falling like angels weeping
And I, I feel the tears on my skin
They’re trying to tell me something
I listen

Blues and yellows tap on my window
And I let the night go with all my shadows
And I, I feel the sun on my skin
It’s trying to tell me something
I listen

Life is calling, life is calling
Life is calling out my name
Make it matter, say it louder
Stay alive another day
Life is calling out my name

Perfect houses with good intentions
Where the happy families hide their broken dishes
And I, I hear the scars on my skin
They’re trying to tell me something so
I listen

Life is calling, life is calling
Life is calling out my name
Make it matter say it louder
Stay alive another day
Life is calling out my name

It’s the wind over the ocean
It’s the secrets in the sand
It’s all trying to tell me something
So I’m listening

Life is calling, life is calling
Life is calling out my name
Make it matter just say it louder
Stay alive another day
Life is calling, life is calling
Life is calling out my name

Sliding Scale

I’m a kid again, clinging on to one of those tall steel slides at the local playground. I’ve been working my way up the slide from the bottom; hand over hand, feet slipping.  My grip is slick with the strain. I am so close to the platform that can see the wood grained ends of the planks, right at my eye level.  I shift my gaze to the macro view of peeling paint on the iron frame. Fix my sight, right there. So close! My shaking arms are holding my weight but I need to let go to reach the edge! 

I lunge for it and lose my grip, clutching wildly for the sides as I slip backwards, defeated. I  land unceremoniously on my backside in the puddle at the bottom of the slide.  It was all for nothing. I hear laughter as I move to stand.
“Never mind, you’ll make it when you’re bigger” my sister says. I am embarrassed and inadequate. I glare at that slide and the nasty kids over on the swings and stomp off to the bench.  Who needs to make it to the top anyway?   Stupid slide.

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I have a to-do list for today.  Nothing odd about that, I’ve got a normal first world obsession with lists and accomplishments.  Like many women, looking at their lists this morning, I look at mine and think ‘I can’t do it, I haven’t a hope of getting through that list’.  A wisp of a dream image ghosts across my mind. Sheer slippery metal glinting across my subconcious.  I know that I do want to make it to the end of that list.  Very badly.  I want to feel what it is like again to achieve something.  To stand on the platform, King of my Castle.

There are three things on it.

Two are online banking tasks.
One requires getting up, getting dressed, going to the hospital and seeing my General Physician for our regular check up.

And I recognise, that the girl I used to be would have chewed through that list in no time. Bam. 
Not anymore.  It seems like my lists are getting shorter and my efforts to achieve them are bigger than before.  It’s a sliding scale.  I have reduced my expectations about how far I can walk, about how much I can be involved in school, about work, about social gatherings, about mothering, being a wife, a homemaker, an do-er.  I even modify my view of what ‘feeling good’ should feel like.  I make my ‘normal’ from the abnormal. I shrink my expectations of what I should achieve in a day, yet I never make it to the top of my expectations.  How small must they be?  And why do they seem bigger than before, even though I keep paring them back?

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Source:  Andersen Layman

 

I’m at the bottom of that slide, looking up.  The ground I am standing on is eroding.  If I don’t jump soon, the slide will be too far away for me to even lunge on to it. I call out for my sister.  “Help me!” 
I can’t see her.  The playground is empty.  The slide looms above me, and I am a tiny thing, an ant. I haven’t a hope of getting up that slide.  I sit down and let the earth take me away in a rivulet torrent of rain and silt. I am tossed in the miniature rapids, growing smaller with each tumble.  Until at last, I am a speck of dust.  The sun beats warm down on my back.  And I, just am.
Sometimes, it is all I can be.

The After Hours

Part Two :: A Day in the Life

The phone rings and beeps and gets answer-machined. My sleep doesn’t happen.
Dad calls in with a giant roll of paper for the kids.  They are going to love that!  I see big posters being created over summer, murals and magic pathways and city-scapes and maps. We have a cup of tea and catch up about the family.  His visit is short, but I am grateful. My stamina is low today.  I need to get back to bed before school pick up.  Just a bit more horizontal time to get me through the next bit of verticality.

The phone beeps again.  It is my friend Cami, she is popping in before school pickup.  But I am pleased, she knows me like family, so she bounds up the stairs and joins me on my bed.  She’s one of those pocket rocket girls who always has energy to burn. We chat, solve some problems in our micro and macro worlds and then, it is suddenly time to go.  I gingerly move to stand. My balance has been a little off today and I am wobbly walking down the hall. I sink into the car seat with relief. A fifteen minute round trip for pick up before I need to stand again.

school pickup

Zed is a box of birds at pickup.  He has much to tell me about his day.  We have a little chat about what the afternoon holds and I acknowledge that he has lots of girls to handle back at home. He says “Mum, did you know that you are the only girl I don’t have to handle?”.  Ha!  He’s a funny little fella! His little funnies are an infusion of happiness every day.  The drive is an easy one, school is close to home. I look through the windows of the car at a stunner of a day.  It’s a gorgeous city; a really pretty drive. The breeze tickles through the window when we pull up at the lights.  We’re nearly home. I park the car and pull myself up into a standing position.  The walk inside is short, I make it up the stairs using both hands on the stair rail. Zed and I tackle his homework while the girls do theirs in their rooms.

4 pm.  I look at the clock.  Zed’s homework is complete and signed off in his homework diary. That makes me feel some accomplishment. It doesn’t always get done which makes me feel ashamed. He heads off to build Minecraft Worlds with the girls. I have at least an hour before I need to start dinner, so I sink back into my bed. It’s such a relief.  I can hear happy noises coming from the kids.  I decide to start this second post about the rest of my day.

The hubster arrives, close on 5.  He wants to know if I would like him to cook the dinner tonight. I look at him gratefully.  It’s been a big day of pushing through. It’s a huge relief that he sees I’ve been struggling. I smile and thank him.  We have a little cuddle, a small chat. We’ve been talking about getting some help around the place, someone to help us with the things I am not managing, someone to take the pressure of him. We discuss a new plan that we are happy with and he stands and gets going with the dinner. I think I should take a picture of him doing that, to use for this post.  My legs are so painful as I walk into the kitchen.  Somehow lately my femurs and pelvis feel like they are made of elastic.  So weak and achey. It makes me wobble.  I lean on the door frame and take this picture to show you a man who deserves recognition, but miss his head from the shot.  Nevermind, back to bed.

school pickup(1)

And then I lie here, looking out my window on the late afternoon. I am so weary I don’t know how I can adequately describe it.  My eyes begin to droop and I am floating.  Drifting away on the afternoon sounds… more traffic, an aeroplane, the cupboards in the kitchen opening and shutting.  The most beautiful man in the world is carrying us into the evening. I sleep.

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Dinner is busy.  Five at the table. The Hubster, me, Bee, Zed and Em. CC is on study leave, so she is at the shops.  😉  Yummy food. I join everyone at the table for dinner.  Some nights I just can’t do it, but it’s a big priority for us, so even when it is really hard to sit upright, I push for it. Mealtimes are the catch up session, the time we all get together and learn about what the day brought us all. Sometimes we play word games or construct progressive stories. It’s hiliarious!  Sometimes I’m grumpy and it’s not so much fun.  Tonight was a middling kind of dinner time. The kids discussed the latest developments in their Minecraft worlds. Apparently Em’s virtual cat died when it teleported into a swimming pool. So much laughter about that, so I guess it isn’t as tragic as it sounds.  They try to explain to me that in Minecraft Survivor mode you can die unlimited times. I don’t understand the point of a survival game if you can die and then be not dead.  They give up trying to explain it.  Then Em’s parents arrive to pick her up. We have a reciprocal arrangement with them that helps us to manage the kids’ swimming.  Em comes to us on Wednesdays and her parents do the swim run on Fridays.  They are our neighbour friends.  Thank goodness for them. It makes so many things possible.

Tomorrow, the cleaner will come to give our house a proper clean. I look forward to Thursday afternoons, such bliss to have clean floors!  Sometimes I will go and sit in the bathroom after she has cleaned it just to breathe in the smell of the cleaning fluid.  It makes me happy to know it is clean. It won’t last long, but for that moment, it is perfect. We need to prepare for her, so after dinner I perch on Zed’s bed and try to wrestle his recalcitrance into the form of a cleaning robot.  I thought he’d be happier to clean up if we used the robot voices. But, no. There are knights and soldiers and motorised hamsters hanging out with elaborate cardboard sculptures and dirty socks. Time to get on it.  It takes us a long time. By the end of it, Zed’s stuffed toys and I have all gone to bed, long before the kids.

school pickup(2)

We’ve got great kids; they’ll choose their own audio book and get themselves sussed for sleep time, usually.  Tonight Zed is particularly tired, so he melts down before bedtime; his Big Daddy picks him up and carries him into bed.  Bee gets herself organised for school before her later bedtime. Late Spring evening winds are tousling the branches of the tree outside my window. I am finishing this post. Mentally toting up the jobs I didn’t get done today. Berating myself for being so useless, for being such a drain on my husband. I check my thoughts and console myself with the thought that soon it will be time for my favourite cuppa.  The ‘after hours’ cuppa with my man.  I make my way back out to the living room and we sit/lie in comfortable companionship, tonight we’ll watch some Sci-fi we’ve saved.  The whole time we are watching I will be jiggling my feet and flexing my ankles.  It doesn’t help the peripheral neuropathy but I instinctively try to fix it by moving. The pins and needles and burning sensations will make it hard to focus. I will go to bed before ten. I will feel like I have been running a marathon all day.  I will sink into bed like I haven’t seen it for days, even though today it has been my cradling arms of a mother, the sanctuary of my sickness.  The place where I pass my days.  Hello again, pillow.  No need to ask you how you’ve been.

…and the lights go out on another day…

The Reality Slap: Giveaway!

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

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

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


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

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

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

Good luck!

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

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The Lament for the Numb

Listen to Dave Dobbyn singing his Lament for the Numb. 

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

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

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

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

 

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

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

 

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

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

 

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

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

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

 

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

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

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

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

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

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

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

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

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


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

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

Thanks Pia, for your wonderful call to action.  

How are you?

If I met you, I’d smile.  
Maybe you’d ask me how I am.  And my smile might wobble a little.  It’s not a question I can easily answer.  I don’t want to lie, but if I told you the truth of how I am, you might do that little sliding sideways step and make a mental note not to get stuck next to me next time. So I’d say
“…fine, thanks.  How are YOU?” and we would talk about that instead.

But I think it might be time to break out the real answer.
“I’m not doing so well”.  Thanks for asking!

My name is Rachel and I have a neurological disorder that is a dysfunction of the autonomic nervous system.  That means, all the functions of the body that are automatic.  Breathing, Heart-beating, Blood Pressure, Temperature regulation, Digestion, Bladder and Bowel functions.  Just a few of the things that make our bodies efficient places to live.  In my body, all of them are affected.  I have a pacemaker to assist my heart and medications to help with the rest.  They are the ambulance at the bottom of my cliff. But when you look at me, you can’t see how I am falling.  They call my illness an ‘Invisible Illness’.  It isn’t easily apparent. On my worst days, I’m in the emergency department, or here, in my bed.  Dealing with all manner of broken body problems. I might be tapping away on my keyboard. Connecting with the world in the best way I can, out of sight.  But on my good days, when I am visible, I might be beside you, chatting about how you are, and smiling. Looking fine.

There is no cure for Dysautonomia.  My doctors haven’t found a cause, but for some, a cause may be found and a treatment begin.  For the majority of us, ‘treatment’ means symptom management. A regime of medications and interventions; it is a ride on a runaway roller coaster in an abandoned theme park.  Frightening, unpredictable, overwhelming.  Autonomic dysfunction like mine is more commonly seen in late stage Parkinson’s or Multiple Sclerosis, but without a primary cause it is rare. There are few of us in Australia and New Zealand, but we are resourceful!  We have found each other on the internet and we work together to find information, resources and hope. I cannot imagine how it must have been for people with rare diseases before the internet.  It makes me want to cry imagining how very isolated they must have been.  I am so grateful for my finger tapping friends all over the world.  Shouting a two dimensional hello into the ether.  Arms reaching far across the digital divide with comfort and solidarity.

So, How am I?  Really?
So frustrated, so scared.  See, I have two kids and they are still so little.  Zed is six and Bee is nine.  I linger at bed times, holding them in my arms, always for just a bit longer.  My lips against the hair on the tippy top of a warm head, my cheeks pressed up against the moist stamp of little hands. My thoughts, always on what the future may hold for them.  My heart in my mouth and my own hands grasping at the time slipping right through them.  I want to be the mum who walks beside her grown kids, head up high, laughing and joking. Not the incontinent invalid, too spent and struggling to keep pace with the conversation.

I’m heartbroken, so sorry.  See, I have this husband.  He’s the best man I have ever met, and I got to marry him.  He’s tall, and lovely and practical and smart.  When we argue, we make up.  When we struggle, we push through.  When we love, well, there is no song, no poem, no flower that could help you understand.  It’s friendship to the power of two.  It’s trust in the face of despair. It’s warm and good. It took me so long to find him and then, Dysautonomia found me.  How is that fair?  It breaks my heart that he has to live my diagnosis with me.  My husband; my friend.  A commitment in sickness, but where is the health? I want to be the wife he can run away with, when our child-rearing is done. The wife he can play with; he’ll chase and I’ll run.

I’m lost, so empty.  See, I had a great career.  I was a teacher, and I loved it.  I worked with kids who had exceptional ability.  My last job was teaching a small group of gifted child writers. And I still think about every child I have ever taught.  I still yearn for a classroom of my own and a chance to engage in those exchanges when learning is the light illuminating our world. Where sparks fly and inspirations blaze.  Where questions and commentary, connections and community fill me with hope for the future of our world.  I miss being their teacher.  I miss seeing them shine and watching their possibilities unfold.  I want to be the one lighting the bonfire, I have so much tinder for the fire. But now, I just teach myself. Patience.  Every day.  I grit my teeth and get through the next thing, I swallow my shame about what my body won’t do.

But I’m really glad you asked how I am.  Because even though I am all of those things I write about above… I am also amazed, so genuinely gobsmacked by this life. I have lost so many of the things that meant so much to me.  I had very specific plans for my life, for all the things that I thought I should achieve.  But I am finding out something quite extraordinary.
I actually have, SO much.

I have everything that matters.  

I have love.  I have a purpose.  I have words (and I intend to use them!)  Being sick is not a picnic.  But it is a bit of a fast track to finding your true self.  And in spite of everything, I am back to the basics of Rach. For the first time in my forty years of life, I like me. I have so much more insight and empathy than I could ever have had before.  I am writing and connecting.  I am meeting ‘my people’, from right where I am.  In the comfortable discomfort of the present situation.  From my bed.  From a place of real true, me. I feel all these sadnesses, all the fear and loss and frustration.  But I also feel a peculiar kind of free. 
I feel like I have found: me.

I turn and I smile, at you.

Because, actually, I am fine, thanks.
But truly, how are you?

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