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

Belinda Taylor: Would you Rather…?

This ‘Meet My Peeps’ post comes from one of my favourite writers, Belinda Taylor.  A former ICU Nurse, and general Science boffin, mother of Milly the Cat and Monty the budgie, and wife of Chris; Belinda has completed a Diploma of Accounting in the time since her diagnoses.  She has post viral POTS complicated by Myalgic Encephalitis. I don’t think she’s been formerly diagnosed with a wicked sense of humour, but she’s got one.   You may recognise her style from the excellent spoof report she wrote for this blog recently, ‘Breaking News’ all about a cure for chronic illnesses.   And if you are working on one of those 8 Great Ways to Live Well, and need something funny in your day, look no further than Bel’s two pieces.  She makes me smile this girl!

Photo of Belinda Taylor and the quote: "Having a chronic illness of any sort is like a life changing game of 'Would you Rather?'"

Some friends and I used to play a game called “Would You Rather?” at work. Being nurses, it was always pretty easy to find something appalling and stomach-churning to test where your limits of tolerance were. Poo in the eye was always a favourite.
“Would you rather… poo in the eye? Or, to eat a teaspoon of sputum?” See? We were pretty gross.

Having a chronic illness of any sort is like a life changing game of Would You Rather? Would you rather, have your mind deteriorate and a healthy body? Or, have a functioning mind and have your body crap out on you? I’m not sure the first option would be a whole lot of fun, unless your deteriorating mind made you hallucinate all day that you were being fed chocolate macarons by Jamie Fraser from Outlander, while lying in a bubble bath.

Having POTS and ME, I can 100% say that the second option isn’t a bundle of laughs either. I would much prefer poo in the eye. Having your mind say “Yes!” while your body says “Hell, NO!” is a lesson in frustration that is played out in the interaction of your body and mind every day. If my mind and body were once friends, they would have broken up by now and only spoken on birthdays and the occasional ‘like’ on Facebook.

A typical day might go something like this:

Scene: Our heroine is lying in bed in the morning, having just woken up.

MIND: Ugh, I really need to go to the loo!*

BODY: Ha! You know I’m going to make you face plant if you try and get up before you’re well hydrated and have taken your meds

MIND: -but if I drink more, I’ll need to go to the toilet even more!

BODY: Well, ok, if you want to risk it…..

MIND: Fine, you win. I’ll drink this bottle but I’m not waiting for the meds to kick in.

BODY: OK, I can live with that.

erm, what would I know_!(2)

Our heroine commences a wobbly walk down the hall to the bathroom for sweet, sweet, bladder relief.

MIND: I suppose now we’re up, you want to be fed?

BODY: Well, I’m not too fussed. I’d be willing to let you do something else first. Feed the cat maybe, put some washing on.

MIND: Wow, ok, thanks. I’ll get onto that then.

1 minute and 43 seconds later…..

BODY: FEED ME NOW!!!!  Stop what you’re doing immediately and feed me! I’m nauseous, I’m dizzy, I must be fed right now or I really think I might die!

MIND: But you just said-

BODY: –I know, but now I really have decided that feeding me would be the best thing.
I’m getting hanGRY**!

MIND: Well, ok, if you’re going to be like that about it, here, have some breakfast.

BODY: Ahhh, thank you. I love you.
Thank you for feeding me and looking after me with this delicious food. You really are the best.

MIND: You’re welcome-

BODY: -Gah!! What is this?? Now I have food in my belly, I have to do work to digest it?? Seriously? Well you know what this means, don’t you? I’m going to have to steal all the blood and give it to the stomach. Sorry brain, you miss out this time. And heart? Yeah, you’re going to have to work really hard to get the pitiful amount of blood I’ve left you up to the brain. Sorry about that, but I really have my work cut out for me here with all this digesting.

1 hour later

MIND: Do you think it would be ok if we moved now? Maybe we could try a bit of exercise?

BODY: Oooh, exercise, yes that sounds like fun. What shall we do?

MIND: Maybe we could just walk down to the corner and back again.

BODY: Yeah! Let’s go. This sounds amazing. Woo Hoo! Exercise here I come.

Our heroine makes it to the first corner down the street.

BODY: I’m feeling awesome. Can we go further? I’m loving this! I feel so freeeeeee. Let’s go to the next corner. The next corner really would make my life complete, you know.

MIND: Are you sure? You always say you’re quite tired after exercise. I don’t want you to overdo things. I’m trying to look after you. But the next corner would be pretty amazing…

BODY: Yes! Let’s do it. This is… easy.

Our heroine walks to the next corner.

BODY: Um, yeah, sorry about this, but I don’t feel so good. I think the next corner might have been a bad idea.

MIND: But, you said you felt great, you were keen to go.

BODY: What would I know?!

MIND: Well, quite.

Our heroine inches her way back home, to spend the next few hours (days/weeks) cursing her stupid body for being a bit of a tool***.

What would you rather, poo in the eye? Or chronic illness?

 

NB:  Translations below for non-Australians/New Zealanders…
* loo = toilet
** hangry = hungry +angry
*** being a bit of a tool = being a bit of a dick

 

 

Winner! The Big Blue Pill Box

…and the winner is
Hailee Curry!
Congratulations Hailee.
I’ll be getting your blue pill box
off to you as soon as I can!
Congratulations also to our runner up,
Margot le Page
Thank you all for entering!
Rach

 

 

Giveaway

YAY!  I love a giveaway!
Yesterday I visited an outlet pharmacy near my home, the one where I bought my excellent pill organiser.  Last time I was there, I thought I had nabbed the last one.  But no!  There was one there, gently swaying on the hook, whispering “give me away”!  So I bought it and brought it home with me.

You may already have a pill system that works perfectly for you, but if you don’t, this would be a fantastic place to start.  And free!

Knowing what I know now, I would say when it comes to pill boxes, you should start big.  I’ve outgrown quite a few and it took a long time to find this big blue box solution.  This baby can be wall mounted, has an information card at the back for all your meds and doses which can be slipped out and taken with you to hospital as a record of what you are taking. They always ask right when it is difficult to get your head together to remember them all… here’s an easy solution!  Each day caters to four doses and pops out if you need portable pills. The name of the day at the top of each section makes it easy for you or your caregiver to see at a glance if you have missed a dose.  The sections are approximately 2.5cm cubed.  Nice and roomy! If you are not sick but need somewhere for your multivitamins, this might be a good solution for you, too!

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I wrote about my pill-filling-day here, with a catchy accompanying tune, if think you might like to do some musical medicating.

So, do you wanna enter this giveaway?  Just comment below!
Tell me about why you could really do with this little Blue Box!

Entries are open to everyone, you don’t have to have Dysautonomia to enter.  I will post to anywhere, so you don’t have to live in New Zealand to enter either.

Winner will be announced on Wednesday 23rd July.  Woop!