busted

In the early hours of Sunday morning I tried to get up to go too the bathroom. Considering I’d been almost totally incapacitated for two days it was always going to be a challenge. I woke chef, and we tried to get my up in one sweeping fast manoeuvre. A grand plan indeed, it was just the execution of it which failed with the spectacularity of fireworks off the Sydney Harbour Bridge. And spectularity is so a word.

The sudden, seething, freezing, boiling, blinding yellow pain that ricocheted through my body at that precise moment is something I never ever want to experience again thank you very much. After screaming loud enough to summon apocalyptic horsemen I fell back on the bed stuck in a contorted position like those you see at Pompeii. My right leg, the one wracked with crippling sciatic pain for three months was in the air and bent hard at the knee. My left was bent but the foot at least on the bed.

Shock set in as my whole body shook, teeth chattering and a level of pain convincing me I was either going to die of shock or pass out. I was willing myself to faint but, again, my body wouldn’t comply.

It was time to call an ambulance.

I had posted a photo on instagram a few days earlier saying I felt I was heading towards something cataclysmic with my back and not in a “oh my go I’m cured!” Kind of way.

An adjustment by my chiropractor on Wednesday had sent me back to the worst my back had been. I don’t blame him, I think it was just the timing of adjusting T6 as the time bomb at L4 and L5 going off.

As each day passed my mobility lessened in perfect unison with my pain increasing. Panadeine, ibuprofen and the occasional endone were not even touching the sides and at the epicentre of all this was fear.

Fear trumps pain like an avalanche swallowing everything in its path – reason, logic and calm tumble over each other, clawing for oxygen, desperate for oxygen but instead tumbled over and over until they can fight no more.

The ambulance probably took 10 minutes but it may well have been an hour. If I’d had access to sharp implements the level of self harm to alleviate the pain would have been spectacular.

12.5mg of morphine and the green whistle of awesome (it contains an anaesthethic drug which you inhale and is the bomb) did little to stop the spasming in my right leg and so plans were made on how the get me out of the house as walking was not an option.

Hospital added endone, Valium and an injection of anti-inflammatory and still the spasming rolled on. Endone brought sleep which was welcome as I hadn’t has any that night and then there was 7.5mg of fentanyl (sp?) Which finally got me on my feet.

MTC

Onward.

The gloaming

She wakes as the sun comes up and thinks, ‘maybe it’s gone’. Then tries to roll over the the pain ricochets through her, sometimes starting from the right butt cheek, sometimes shooting from the ankle. It’s a cruel trick her mind plays on her every single morning. Two panadeine forte are cracked, swallowed and then she waits. It normally takes 15, sometimes 20 minutes before she can feel the codeine coursing her veins, sinking her body deeper into the matress.

She fights the calling to close her eyes, knowing if she doesn’t get up now the pain will be excruciating as opposed to horrible. The first few steps to the shower are always good. Hard hot water streams onto her rump in a daily futile exercise to relax muscles so tight her right leg feels a foot shorter than her left. Getting dry is a ridiculous game of crouching to dry her legs and thinking that’s a good stretch only to have agonising spasms as she stands. Then there is the undies game, she tries the good leg first some days, the dodgy leg others. It doesn’t matter. It always ends badly with collapsing on the bed and an internal pep talk to get them on. ‘

 

The first hour is the worst. You are not dying. Nothing is going to break or snap. Take a deep breath. And another one. You can do this. It’s just nerve pain, brain, it’s OK, just a pinched nerve. Breath. But none of it makes any difference. Once that first hour is done then standing is normally ok. Sitting on anything other than a hard chair with a towel folded in three is untenable. Lying down is deadly only for the fact she eventually has to get up and endure that first hour all over again. Curiously, all she wants to do is lie down.

Meanwhile the household comes to life. Breakfasts, washing on, delegations to unpack the dishwasher, fights to umpire, questions to answer. Just breath.

The pain pre-occupies, like water coursing along a riverbed, filling every twist and turn, finding a path between every pebble of her life, every thought in her head. It makes her snap and cross. Each question, request, conversation adding another weight on the pain load she is already bearing. It stops her from paying attention so she drops things, cuts or burns herself when cooking and basically forgets all the things she’d normally consider. There’s a wicked burn on her bingo wing from the pretty lanterns she bought for the Christmas day tablescape that pains as it brushes against her body. She sees it as a welcome distraction from the leg.

She’s been living with back pain since June and the sciatica since September. Maybe October? There’s been chiro and physio, training and visits to the GP. There’s been talk of steroid injections and resounding medical advice against it. “Let’s just ramp up your pain relief,” is the current approach along with chiro.

But then the anxiety starts to fester. So much codeine, the occasional half an endone when she knows the tightness is in another realm. She tries a day without codeine and ends it completely paralysed, locked halfway between getting up and lying down. Unable to put any weight on her leg and incapable of finding any position where the pain does not shoot up and down her entire right side like a puck in a pinball machine. Involuntarily gasps of pain, tears, locked in a twisted position holding on to the end of the lounge until the neurofen plus and a whole endone kick in. It’s a long 20 minutes.

 

As summer in Sydney gets serious, she can feel herself slipping. The mental war begin waged against the physical pain has been ambushed. The air is heavy with heat and humidity. Cicadas whir incessantly competing with the hum of the fan as the soundtrack to the season as she feels herself sliding into a gloaming, neither night nor day, here nor there, present or absent. Just existing. Knowing it will pass, it will get better, just not today.

 

Onward.

 

a new clinic, a weird feeling

A week ago we had our first appointment at the chronic pain clinic at Sydney Children’s Hospital. Our first contact with this team came about in the immediate days following Oscar’s surgeries. They have been a wonderful addition to Oscar’s team in that they were able to piece together some aspects of him and throw a new light on them which have provided definite improvements.

But our contact with the team had always been on ward and this was a chance for all components of the team to meet with us and assess Oscar.

I have no idea why I knew that but when faced with a room full of seven, yes seven, specialists was taken aback. Well, I do actually. I had just had no time or head space to actually think about what this appointment would be.

For an hour I answered questions from a doctor, a play therapist, a psychologist, an occupational therapist. Oscar even let the doctor check out his feet.

The play therapist was a gem in taking Oscar and Grover to the toilet when they needed to go while also keeping the boys fairly well occupied during the session.

We then left the room while they conferred. Then we went back into the room and their collective decision was for me to come back without any of the children and meet with each of them to discuss some strategies and also provide me with contact with the main government agency which provides support/respite services. Oh, and to add another medication.

So.

None of that seems particularly startling does it? So why did I walk away from it feeling … well, feeling something a whole week later I can still not clearly explain or define?

Overwhelmed? No, not particularly.
Patronised or judged? Maybe? But then maybe that was just because I had my period and was feeling hyper-sensitive and paranoid.
Dismissed? A little.

I don’t know. I get the feeling that perhaps Oscar is not the typical patient they see? That maybe it’s not the most appropriate service for him? I’m kind of at a loss.

This additional drug they’ve put him on? It’s a very low does mild anti-depressant. It apparently works incredibly well with the Gabapentin. It will definitely improve the quality of his sleep.

But it has me in a bit of a spin. I KNOW. ME! The champion of the case for mental illness medication. My child is on an anti-depressant. It makes me uncomfortable. But here I am, doing it. Because I trust the nurse clinician implicitly. I know he – and the team – have very substantial experience and insight into this.

He’s been on it for four days. We’ve got an appointment with the doctor and nurse clinician in two months to review its impact. I’m back there next month for my meeting with the various specialists.

But I’m rankled. Something’s not sitting right with me. Weird.

It was the best of weeks, it was the worst of weeks

You know, never in my wildest dreams of during one of my most creative catastrophising episodes would I have pegged that week of hydrotherapy, physiotherapy and general misery as a turning point in my parenting and indeed the final chapter (still playing out mind you) in an episode in our lives I would look back on as one of our best.

I know, it’s like I’ve been watching too much Oprah and am about to show you my inspiration board.

Such was Oscar’s anxiety during that week of first – first standing in six weeks, first weight bearing in that time, first steps, first getting down (and back up) to the ground, first putting bare feet on the ground – and such was my having to be cruel to be kind – no.more.wheelchair., no, we’re walking, keep going – that part of me was mourning the time he was in the wheelchair and being such a legend.

But then I realised that not only did Oscar taking those first steps, even though he was scared and even though his muscles must have been screaming at so rudely being called into action, he did keep going. The word ‘resilient‘ is getting a work out in this house like ‘journey‘ does on any reality TV program.

But something else happened that week. Something wondrous.

The nursing consultant from the chronic pain team visited us. The chronic pain team are part of the pain management unit who visited us post-op and this time around had dropped by because we’d run out of Gabapentin and because it had been that team who had requested it, it was them who had to determine what happened now. Thank goodness I say as when I mentioned it to the registrar she was all, ‘oh we should get him off that as he won’t have any pain issues now’.  

This nurse – Dave – is an absolute legend. Full of information and knowledge and interest in Oscar and what a difference we’ve seen in him since starting the gabapentin. For you see, while that drug was initially designed as an epilepsy medication it is useless as that but incredibly effective in treating neuropathic pain and indeed, anxiety.

Then he gave me a lesson in what neuropathic pain really is – that it is a dysfunction of the central nervous system – but most importantly how much more they see chronic neuropathic pain conditions in kids with cerebral palsy (CP).


Long story short, medical developments such as the use of botox in children with CP means many such kids are not undergoing orthopaedic procedures until adolescence and in turn, the pain clinic at Sydney Childrens Hospital are seeing much higher rates of chronic pain disorders in these kids than in others. Apparently Melbourne’s Children’s Hospital are seeing the same trend.

It makes sense really – here you have children with issues of the brain getting the right messages to parts of the body so messages regarding pain may well be compromised as well.

He spent some time explaining the different pain pathways of the body, about the ascendant and descendant pain messages the body and brain send and how pain and anxiety are very close relatives indeed.

He asked if Oscar had any ‘hot spots’ or areas of the body he didn’t like you touching. Um. HELL YEAH. Anywhere on his head, neck and shoulders, the small of his back, his feet. Hence haircuts being hell, trying to get him moving along by a coaxing hand in the back or a gentle (or firm) push results in a meltdown of epic proportions and the putting on of shoes always being a nightmare.

Oscar’s teariness. His anxiety, His total over-reactions to non-painful situations as paralysing pain.

All of it, ALL OF IT, ties back into this faulty pain identifying and resolving system.

I can not find the words to express how liberating this information has been. The aspects of Oscar’s personality that we find the most difficult, the most debilitating to him and the most disruptive to us as a family are not something we just have to live with. To bear.

It can be managed. We can teach him strategies to minimise it. We can use strategies to off-set it. It does not have to be how it has been.

My mothering of this child has been completely re-energised.

At the moment we are – obviously – focused on getting through the rehabilitative phase of his surgery. The Gabapentin goes a long way to helping minimise his neuropathic pain in his feet and his anxiety about the road ahead. We are using phraseology and approaches that are less, ‘come on Oscar’ and more ‘tell me how it feels’ or ‘you tell that brain it is OK’.

Down the track there will be psychologists and exploring other ways to help Oscar liberate himself from the debilitating grip chronic pain can hold over his life. The pain specialist and nurse both know our paediatrician well and have already made contact with him to keep him in the loop with what their thoughts are about Oscar and the way forward.

So you see? There were tears and tantrums. There was me being the enemy and that he hated me and that he was going to run away (I kid you not, this kid’s language has come on LEAPS and BOUNDS. Even if it is to tell me he hates me and is going to run away). There was me forcing him to walk, talking tough while inside my heart was breaking, coaching him along.

But there was Oscar seeing what he could do under the most difficult of circumstances.
A family galvinised that we are in this together (Jasper’s kindy teacher told me how on Monday he filled her in on Oscar’s progress, that he was home and that now he can walk when before he couldn’t and all these other things he couldn’t do but now can)
There was me acknowledging my son is capable of so much more than I previously thought.
There are new relationships forged with therapists and medical professionals.
There is a new bond between me and my Oggaboy that had been worn down through years of just wading along trying to make the best of some pretty shitty circumstances.
There is hope.

The best of times indeed.

Onward.