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

Complex Regional Pain Syndrome (CRPS)

I haven’t talked much on this blog about pain.  In fact, for a long time, I preferred to ignore the topic.

Where does it hurt_(1)

Many of my friends in the invisible illness community have concurrent diagnoses of Complex Regional Pain Syndrome, and within my own family, my sister has been dealing with chronic pain for most of her adult life. It is a debilitating and exhausting challenge for the body and mind.

I previously had neuropathic pain with my Dysautonomia. Peripheral and abdominal mostly. And then I sustained nerve damage during a gynae surgery three years ago. However, the distractions of my primary diagnosis meant that it wasn’t immediately clear the surgery was the cause of my pain. I’d had a steroid injection to the site after the surgery, then gradually over time, my pelvic pain returned and increased. It affected my gait and had a dramatic impact on my mobility. Walking with a cane possibly exacerbated it, but without it I would have been unable to walk further than ten metres. It hurt so much. The pain extended from the left inner pelvis, down the middle of my left leg into my ankle. I found osteopathy helpful. I took pain medications (gabapentin and oxynorm) and modified my life. I thought that it was just another curve ball thrown at me by my dysfunctional body. I didn’t connect it with the gynae surgery. Or at least, not until after the six months of methylprednisolone infusions; when my pain disappeared completely.  That’s when the lightbulb went on for me.

When an awful symptom is removed and you experience life, pain-free, it makes you acutely aware of how much it was affecting your life.  I realised both how bad that pain had been and how long it had been bringing me low. As I weaned off the steroids, the pain returned.  I had another, more minor, gynae surgery.  This time, the pain post surgery was excruciating. I was certain that some medical misadventure had occurred. The specialist in the hospital explained that they couldn’t find cause for the level of pain I was in. I agreed that a referral to the pain team might be useful.  I was in remission and just had this pelvic issue to sort out.  Eager to get beyond it, I was keen to try anything.

The Gynaecology Pain Team have been so wonderful. I see an anaesthetist, a pelvic phsyiotherapist and a psychologist.  They believe that pain is exacerbated by a number of factors, and first introduced me to the concept of complex regional pain syndrome. This is what my psych wrote in her last clinic letter:

“We concluded that following 32 years of neuropathic pain from [auto-immune neurological disorder -Pandysautonomia] and three years of neuropathic pelvic pain she will, in all probability, have central nervous system sensitisation”.

That just means that my nerve pathways over time have amplified my pain signals. My body is in pain, and the pain I feel is more extreme than might be felt in the same scenario by someone who hasn’t been experiencing chronic pain for a long time. The longer you have pain, the worse it feels.  But don’t worry, things are in hand here; I am managing fine with all of the measures we have put in place. I have another surgery scheduled for August, when hopefully we will have a clear direction for treating the nerve pain. I am hopeful we can reduce it significantly.

I thought there might be others who can relate to this part of my story. If you want to read more about CRPS, look here.  If you are in New Zealand and have been diagnosed with Complex Regional Pain Syndrome too, you could join this facebook page. And for a quick overview of invisible illness (yes, CRPS falls into this category) have a look at this  clever infographic by Victoria from www.burningnights.orgThank you so much for sending me your infographic, Victoria.

 

Source: http://www.burningnightscrps.org
Source: http://www.burningnightscrps.org