Only Someone Who Has Chronic Pain or Illness Knows…

“Illness is the night side of life, a more onerous citizenship. Everyone who is born holds dual citizenship, in the kingdom of the well and in the kingdom of the sick. Although we all prefer to use the good passport, sooner or later each of us is obliged, at least for a spell, to identify ourselves as citizens of that other place.”
~ Susan Sontag, Illness as Metaphor

 

I’ve been unwell since my teens.

There have been so many diagnoses. (I won’t list them all here, although perhaps I should.)

I’ve pursued so many kinds of treatments. (Really. In over thirty years of continuous concerted effort I’ve done more kinds of diets, therapies, herbals, treatments, drugs and totally-out-there-hokey-but-I’m-doing-it-because-desperate regimes than I care to mention. Hundreds of thousands of dollars worth. And I’m still here. So some of it must have worked.)

There have been times where I have only been able to see myself through the prism of loss.

But that’s soul-destroying. It makes you die while you are still alive. And I want to live. So mostly I choose to view my life by framing it up around what I can do, rather than what I can’t.

I have read deeply and widely, in order to get an inside angle on my health. I have come to understand my body better. I have become a master at hiding or managing disability and at creating a life that works on my terms. Mostly.

Some days a pain comes. Or some other symptom. After which I spend hours backtracking and investigating. Was it because of something I ate? A chemical? Lack of sleep? A million other possibilities? Did I do this to myself or make things worse? I’ve lost days to this kind of hypervigilance. It never helps, although it can gift me a temporary illusion of control.

I have a long, long list every single day – of pains and problems and freakish symptoms which it long ago became too boring to mention, even to myself. Mostly it is background noise in my life. I live with pain. I live with the kind of things that would have other folk rushing off to the doctor. After a lifetime of discussing them with doctors and having no resolution these kinds of things become your new normal, and then, eventually, just part of your life.

Mostly, just like other people with chronic or terminal illnesses, I have continued to look quite unremarkable on the outside. Maybe just a bit tired sometimes, or a bit puffy or drawn or pale.

Image from www.wallls.ru

Image from www.wallls.ru

These days I’m actually doing much better. Especially after two solid years of horrendous antibiotic therapy for Lyme. After major surgery last year ( and then the superbug I acquired) and an avalanche of new drugs (and some old favourites) and then Chinese herbs, essential oils, modified diet (again!) and intravenous vitamin C.

I feel like I’ve turned a corner. I can function better, I have more energy than I’ve had in years. Life is opening out a little more for me. People comment on how well I look.

Although that better is comparative.

I still can’t drive. My vision is still impaired. I still need early nights and nana naps to get through the day. I have a horrible startle reflex. When I’m tired. I lose words. I sound like. A badly. Edited film. With pauses and breaks in. All the wrong places. Because. Brain not working properly.

I’m still immuno-compromised. (And please, will you quit rolling your eyes and commenting about how it always seems to be one thing after another with me? Yes, that’s true. Because I am immuno-compromised after so many decades of illness. The bugs that barely register with you or that inconvenience you for a few days still have the power to take me down, or even out. Don’t visit me when you’re sick. Wash your hands more. Practice good hygiene. Rant over.) Incontinence issues? Yep. Not quite nailed the superbug? Yep. Foods that send me spiralling into misery? Yep. Exhaustion? Yep. Pain that wakes me up and keeps me up? Yep. No libido? Yep. Tendon stiffness that sees me hobble when I get out of bed, or up off a chair after sitting for a while? Yep. Pay for increased activity levels with increased night-time pain and exhaustion the next day? Yep.

Yep.

Still, I have coping strategies, and meditation, and healing foods and emergency triage treatments. I have a wonderful local GP and acupuncturist. I have an incredible husband who is my full-time carer (although I hate to think of it like that, it’s the truth.) I have a beautiful group of friends and an online community who lift me up every day.

My life is good. It’s precious and wonderful and I am grateful for every breath.

Mostly.

I am one of millions just like me. People living with or despite conditions and illness. We’re doing our best. For some of us that’s actually pretty messy and awful at times. Most of which you won’t ever see. Some of us can’t get help. Some of us aren’t believed. Some of us don’t have the financial resources or the energy or education or support to even try to get past what ails us. Some of us will fail, decline, die despite help and treatment. Some of us have trajectories that are all downhill.

So, what can you do?

If you’re one of the millions, try to find some small thing each day to focus gratitude upon. Look at what you can do. That’s a big ask at times, but I’ve come to realise that what we focus on magnifies. I’d rather focus on the pleasure of savoring a cup of tea than on the fact I can’t see the bloody thing clearly anymore. When I focus on what still works and what’s still good, peace comes to me. You can heal or endure when you’re peaceful, more than you ever can when you are stressed or angry. (I know this from experience, but I won’t say ‘trust me’ – it’s better if you experience this yourself too, so that you can own it as truth in your body rather than just a concept in your mind.)

If you’re not one of the millions yet, know that it’s entirely possible that one day you might be.

If you’re not one of the millions, please stop pandering that New Age drivel to us about how this is all a beautiful learning experience, or that our souls chose this, or that we somehow created it, or perpetuated it. Or how we can turn this into a wonderful soul-growth opportunity. Or that God only gives us what we can handle. Don’t hang that judge-y guilt-trip on us. It’s not helpful and it’s not kind. Especially when we are having a bad day, which, incidentally, may be invisible to you. If you are one of the millions, stop hanging that guilt-trip on yourself.

Know that if a vegan, paleo, superfoods, raw diet, prayerful contemplation, soul-searching, vibration lifting, better exercise routine, detox or no-negative-thoughts regime actually worked for everyone there would be no more cancer or depression or chronic illness, or genetic abnormality or disorder already.

Don’t hang judgement on us when the network-marketing-product, special diet, cleanse-in-a-box, worked-for-your-neighbour or someone-you-read-about-online cure, doesn’t work so well with us. Or when we just don’t want to try one of those things. Again. For whatever reason.

Don’t tell us we’re heroes or warriors. We’re only dealing with the hand we’ve been dealt. Don’t tell us that you don’t know how you’d ever cope or that we’re incredible the way we are coping. Some days we don’t cope. Don’t perpetuate the myth of the incredible brave-warrior-ill-person. It’s just one more pressure we don’t need.

Please don’t treat us like we’re invisible. Please keep including us and inviting us. Even when we’re unreliable, or can only attend for a short while or not in the way you (or we) would prefer.

Unless you’re going to be mean or judge-y. In which case it’s actually better if we’re invisible.

Let’s not hide illness and disability anymore. Let’s bring it out into the open where it belongs, instead of shaming ourselves and each other around our perceived frailties and failings.

Every single one of us will know illness or injury or critical failure of something we had previously taken for granted at some stage in our lives.

Let’s treat this with kindness. Kindness isn’t a cure, but it’s a very helpful medicine.

Holding you in my prayers and meditations,

Nicole <3 xoxo

On Overcoming Obstacles

“Nothing in this world can take the place of persistence. Talent will not: nothing is more common than unsuccessful men with talent. Genius will not; unrewarded genius is almost a proverb. Education will not: the world is full of educated derelicts. Persistence and determination alone are omnipotent.” ~ Calvin Coolidge

 
I have always wanted to be a writer.

I wrote my first full book when I was four, complete with illustrations.

Writing was what I did. It was who I was.

But contracting Lyme Disease at sixteen changed all that. I began to lose words.

By the time I moved to the Kimberley, when I was in my mid-twenties, things were significantly worse.

I write about it here, in the draft of my memoir, based on that period in the Kimberley with my Aboriginal Aunties. At the time, my diagnosis (I’ve had many before Lyme) was relapsing and remitting multiple sclerosis.

“I stepped out of the laundry block and looked up at the sky. It was filled with beautiful streaky…

It was filled with beautiful…

You know.

Those white things.

What were they called?

For the life of me I couldn’t find the word. White was all I could come up with. I knew they weren’t called white. I knew they had a name. But that word, whatever it was, remained dangerously elusive.

Fluffy?

Bear? No, that wasn’t the right word. I sighed with exasperation. Now I couldn’t remember what bear was. But it was brown. Like a tree trunk?

A quiet horror awakened in me. As I ticked off the possible causes – lack of sleep, dehydration, low blood sugar – I knew it would be none of them. I dreaded to think that it could actually be multiple sclerosis. This dull worry exploded inside me, and a moment later my inner warning lights came on. My vocabulary had shrunk dramatically over the past several years, but I’d never lost a word before. I’d always been able to find another word that worked. If I couldn’t say beer I’d say ale or tinny or cold drink. I had good coping strategies. Even when my cognitive function hit a major low I’d managed. Point in case: I had been coping with my new lack of ability with numbers. After all I could still read words, I could still read numbers. I found a way around the problems.

This was the first time I had looked at something familiar and gone completely blank. Words, knowing how to string them together, writing them, speaking them, crafting them, had always been the one thing I could do well. Writing was my fall-back plan. My secret love. What if I lost my words? I couldn’t bear to think about what my life would look like if that happened.

All week it worsened. I never did remember that word for the white things in the sky, and couldn’t even cheat a little by looking them up in my dictionary because I didn’t have a starting point. I also noticed that things didn’t stick in my brain. After reading and re-reading a fax and still struggling to make sense of it I resorted to a list of short bullet points, summarising as I read each paragraph. The bullet points kept my thoughts in order, and jogged my memory. I was reluctant to ring my doctor back in Brisbane, worried that he’d tell me to leave the Kimberley and come home immediately, from which I’d eventually end up in an aged-care facility with all of the old people who had also lost the ability to think and do for themselves.

I became suddenly, stupidly, enormously insecure. Carefully I observed myself, keeping notes in my journal each day. My cognitive dysfunction became worse when I was tired or stressed, and my best time was from when I woke up until lunch. There was a black hole each afternoon where my brain function was massively retarded, and it picked up a little again after four in the afternoon. I rearranged my day so that my mornings were all about problem solving, writing and math. My afternoons were filing, tidying and simple tasks that didn’t need much brain power. No-one else noticed that anything was wrong. I still managed to work each day and complete my duties. However, no matter what I did, the sudden decline in my mental ability was terrifying.”

 

That terror, that dumb incapacity, that lack of ability to find the right words, to remember the plot or the characters, to hold a train of thought? Those things have plagued me my whole adult life. The last paragraph from my memoir extract? That sums up living with Lyme. That sums up three decades of my life.

Sure, I’ve still written. I’ve compensated. I’ve found ways to get words on the page. But they haven’t always flowed, and as the number of pages increased so did my confusion.

Now, after two years of hard-core drug treatment, and a host of other helpful modalities and herbs, my brain is healing. I am healing. My function is coming back.

At my writers’ boot camp this weekend, words have been pouring out of me. Good ones. Words, that when I read over them later, make me weep.

Because I have found that place again. The one that has been lost to me for thirty years. I can remember plots and characters, I can see where something needs to be edited, and I can reach into that wellspring of ideas and still find my way back from the catacombs.

That’s a handy thing.

After thirty years I have so much to say!

Your take-home on all of this?

Don’t ever give up.

Ever.

Be resilient. Be determined. Trust that you will find a way.

Holding you, and those intentions for you, in my meditations and prayers,

Nicole xx

Image from danhilbert.wordpress.com

Image from danhilbert.wordpress.com