Rundown on a Rare Disease

Today was a lucky day.

I found a four-leafed clover.

Our garden was a farm paddock before they put a road and houses here, and if we don’t keep the lawn under control it swiftly reverts to type and the clover runs rampant. It’s the first time I found a four-leafed clover – despite hunting for one every summer when I was a child.

Back then, I would have made a wish if I’d ever found one. (Or was that if a ladybird landed on you? Obviously yesterday was a lucky day too, as I had a ladybird land on me and crawl up my arm.)

rundownpin 3Now, I had to google to find out why
four-leaved clover
are considered lucky.

The obvious reason is that they are rare.
1 clover in 10,000 is a four-leafer, apparently, although one study suggests
it’s nearer 1 in 5,000.
Still rare though. 

So today was a lucky day.

There’s another lucky day coming up very soon – 29th February  It is rare too – once every four years, which means 1 day in 1460 is a leap day.
People born on a leap day are rare –
1 in 1,461 people are leaplings.

But rare doesn’t always mean lucky.

29th February is also International Rare Disease Day.

For people living with rare diseases, rare can be a whole load of bad luck. Many rare diseases (and there are about 7,000 you could be landed with) turn people’s lives inside out and upside down and leave them in difficult, straitened, isolated circumstances.

The US defines a rare disease as any condition that affects less than 200,000 people – or 1 in 1,500. Ironically, this is just about the same number of people born on 29th February – and I know which ratio I would rather be part of.

Every year, the last day of February is International Rare Diseases Day. Which means this year it falls on the 29th – I’m pretty sure that’s exactly why NORD selected the last day of February as their awareness day. 29th Feb is a powerful metaphor.

The purpose of International Rare Diseases Day is an “international advocacy day to bring widespread recognition of rare diseases as a global health challenge.”

When I was a kid hunting for clover, I didn’t know I had a couple of rare diseases. Now I’ve discovered I do, I know no amount of wishing on lucky symbols is going to take them away. Instead, I’ve decided to write a post explaining my conditions to help bring about some of that recognition. Today I’m looking at trigeminal neuralgia.

Trigeminal Neuralgia

The trigeminal nerve is the main nerve in the face and head, providing sensation and some movement. Trigeminal Neuralgia is a chronic pain condition affecting the trigeminal nerve.

When the nerve is malfunctioning or damaged in some way, it misinterprets signals and reacts to even the mildest stimulus as if it were pain. And the pain is often excruciating.

Incidentally, trigeminal neuralgia is like four-leafed clover.
Rouughly 1 in 10,000 people have it, although if diagnosis-rates were more accurate, the incidence would probably be about 1 in 5,000 too. And anyone with trigeminal neuralgia makes lots of wishes – wishing for their medicine to work, wishing for a pain-free day, wishing for a cure. . .

Symptoms 

rundownpin 2Any of the following:

Episodes of severe, stabbing pain that patients often describe like lightning bolts or electric shocks.

Repeated bouts of pain lasting from seconds to minutes.

Pain attacks triggered by even mild sensations and everyday movements – such as a kiss, a light breeze, a change in temperature, chewing, swallowing, talking, smiling . . .

Episodes of repeated attacks lasting for a period of time – anything from days to years.

Episodes of constant aching and burning prior to or alongside stabbing pain.

Attacks that do not respond to over-the-counter pain killers.

Attacks that grow more frequent and severe over time.

Pain anywhere along the path of the trigeminal nerve – ear, cheek, jaw, lips, teeth, nose, eye, forehead.

Some Causes of Trigeminal Neuralgia

A compression of the nerve e.g. an artery or vein pressing against it and damaging the protective myelin – imagine an electric cable. The nerve is like the wire inside, myelin is the protective, insulation casing. When the insulation is broken, the bare wires emit electric shocks to anyone who touches them. When that bare wire is a nerve inside your head, you can’t avoid touching it.

Other conditions that cause nerve damage, such as Multiple Sclerosis, or Sjogrens Syndrome.

Injury to the trigeminal nerve, such as stroke, surgery, face and head trauma.

Often unknown.

A tumour pressing on the nerve.

People who get Trigeminal Neuralgia

Anyone.

Marginally more women than men.

More people aged over fifty than younger people.

Treatments for Trigeminal Neuralgia

I’ve written about medications for trigeminal neuralgia in Watching the Birdies.

And I’ve written about pain management techniques in Sun Hats and Self Help.

There are also a number of surgeries available for treating trigeminal neuralgia. Usually patients will be treated with medications first, as surgery is invasive and carries risks. But if medications are unsuccessful, then some patients can opt for surgery.

Surgeries and Procedures

MicroVascular Decompression (MVD)
rundownpin 1This surgery is only for patients with a compression.
A teflon pad is put between the nerve and the artery which acts as a cushion to protect the nerve. Low risk, high success rate.

Balloon Compression
A small needle goes into the trigeminal nerve through the cheek. A small balloon is inserted through the needle. The balloon is inflated against the trigeminal ganglion (the joint of the three branches of the nerve). the balloon pressing against the ganglion stops pain signals transmitting to the brain.

Glycerol Rhizotomy
A small needle is inserted into the cheek, and glycerol is inserted into the trigeminal nerve. The glycerol numbs the nerve so it can’t transmit pain signals.

Nerve Block
Anaesthetic is injected through a small needle into the face. Steroid pain medication (or another medication) is injected into the trigeminal nerve through a second needle.

Gamma Knife Radiosurgery
It’s not really a knife – probably more like Dr Who’s sonic screwdriver! The patient’s head is held steady in a clamp and the gamma knife sends beams of radiation into the skull. The radiation damages the nerves to prevent them sending pain signals.

Radiofrequency Lesioning
An electrode is inserted through the cheek. It is then heated and the heat damages the nerve to prevent it sending pain signals.

Peripheral Nerve Stimulator Device
A pulse generator is inserted in the chest. Electrodes run from the generator to the trigeminal nerve. A weak electric current through from the generator is applied through the electrodes to the trigeminal nerve. The electric current reduces the pain signals.

Acupuncture
Eight to ten needles are inserted into the face at particular acupuncture points and left there for twenty to twenty-five minutes.

Botox Injections
A needle is inserted under the skin and botox injected at trigger points on the nerve.

Iovera Injections
Nitrous oxide gas is injected through three needles into a targeted area of the trigeminal nerve. The gas forms a small ball of ice below the skin, which freezes the nerve, giving the patient temporary relief from pain.
If you have trigeminal neuralgia and medications aren’t doing the job of managing it, speak to your doctor or a neurologist to get a referral to a neurosurgeon for a proper assessment of what procedures will be best for your particular circumstances.

Life with Trigeminal Neuralgia

Some people with TN find the condition is managed successfully with medication and lifestyle changes, such as avoiding chewy foods, or with surgery.

But many more people struggle with intense pain, and the fatigue that often accompanies chronic diseases.

Some people lose their jobs, their friends, even their families due to the debilitating and disabling impact of the disease. They suffer with fatigue, anxiety and depression in addition to the physical neuralgia symptoms. Their lives become isolated and difficult.

This is the reality of many people with chronic illnesses.

It is particularly so for those with rare diseases, as it is often difficult to find other people with the same condition, or medical staff that know much about the condition. It’s so much harder to deal with anything when you feel like you are alone.

As I said before, rare doesn’t always mean lucky.

I am lucky. Not just because of ladybirds or four-leaved clovers. But because my conditions (I also have glossopharyngeal neuralgia, Sjogren’s Syndrome and Ehler’s Danlos Syndrome), certainly at present, are reasonably well managed. Pain and disability limits my life in lots of ways, but it opens it up in others, and I live a good life. And I have a strong network of love and support around me. Many people don’t.

But let’s not leave things to luck. If you know anyone with a rare disease,
even if they don’t appear to be struggling, give them a call.
Let them know you care.

And please share this post to help get “widespread recognition of rare diseases” and to join me in making 29th February less about luck and more about awareness.

Thank you.

rundownpin4


 

Writing from Memory and Life

Memory and experience are fertile places for writers.

I always think the stories and poems we react most strongly to are the ones that strike a chord of empathy or understanding, because we have experienced similar things or thoughts ourselves.

memoryandlifepin3One of my favourite poems is Originally, by Carol Ann Duffy and One Art, by Elizabeth Bishop. Both these poems look at loss – of things, of places, of people – and at change, but from very different perspectives. Which is another thing I love about poems and stories – the ability to get a glimpse of other lives for a moment, to get a sense of what other people feel and experience, which gives us a bigger view of the world, and lets us know we aren’t the only ones who feel how we feel.

This is another poem that I wrote years ago, and has had both a recent rejuvenation, and recent publication, in the summer issue of the NZPS magazine, a fine line

 

Orphan

This place is so big it doesn’t diminish with age
– shrinks me to the smallness of six
think I can outstare the sun

Eyes bleed a kaleidoscope
my fingers sweat
rainbows

This place is so big it understands savannah
explains it in words of one syllable
hot – dry – wide –

I shed my family here once
– hidden in a tangle of blackberry
I tasted the syllables of orphan
until I heard my name
called by my mother’s mouth

Now I know refugee

My tongue learned to ache
with the weight of not talking
My ears untangled speech of a new flavour
– syllables thin and tart as unripe blackberry

This place is so big, I hope there’s space
for an adult orphan coming back
with a whisper of home
on her tongue
but no key in her pocket

memoryandlifepin


 

At Midnight

The clock has struck midnight and all is quiet in our neck of the woods.

atmidnight pin1But there was a time, a few years back, a certain small girl (she knows who she is) thought midnight was not a time for sleeping, but singing.

It’s actually more like a quarter of a century back, and now there’s another certain small girl who prefers singing to sleeping.

I wrote a poem about the first small girl back then, but then left it sleeping in a file. . . until last year, when I woke it up, gave it a wash and brush-up, and sent it out into the world, a.k.a Mayhem Literary journal, to sing.

Poems are like photographs – they can capture a moment in time as vividly as any picture.

What moments in your children’s lives are poem material?

 

At Midnight

You sing like a bird
who never heard of the sun
going down – gulp a breath
in the middle of a word,
so air flows sharp in your throat
and the next note is too high
or too low.

This is what serenades me to bed:
your midnight solo.

In a moonlit wedge of open door,
I see you perched on the edge
of your bunk, a fledgling
on a wooden fence, singing songs
that were old when I was young.
You know every word.

I creep to bed. I haven’t the heart
to tell you be quiet, go to sleep.
I hear when you lie down –
your voice shivers, slides into silence.

In the space of a yawn,
you are asleep again
and I am left listening to the way
the air around you breathes.

atmidnight pin2


 

Self Care, Cat Style

On a day out to Palmerston North recently, we took an unexpected detour.

Most detours are tedious interruptions involving traffic cones and tortoise-paced driving.

Not this one. This one was a spontaneous decision triggered by the sight of the SPCA sign at the side of the road. Shall we go in? we said. The previous week, at the same juncture on the same journey, we’d said no. We had planned on getting a cat sometime, but it still seemed too soon, after our twenty year-old dog, Toffee, had been put down. We’d said we weren’t ready. We’d driven straight past.

Yet this time, we swept in the driveway and pulled up in a crunch of gravel.  Just to look, we said, dodging rain-drops as we crossed the car-park and climbed the steps into the centre.

Just looking didn’t last very long. Ten minutes later we’d looked, liked, chosen and been chosen – the slinky black chap with the coin-sized cluster of white hairs on his chest would come home with us. The moment he put his paw in my palm, and leant his cheek against my fingers, the decision was made.

We spent the rest of our day considering names. Palmerston, because that’s where we were going when we found him. Onyx, or Liqorice, because of his colour. Rembrandt because he’s come to a family with Dutch connections, and because painter’s names are cool for cats.

davWhen we brought Rembrandt home, he bolted for the first hidey-hole he could find – under our bed. We’d expected that – apparently it’s normal for cats introduced to a new home to hide for hours, if not days, while they grow accustomed to the new environment.

What we hadn’t expected was that he would reappear less than half an hour later.
He wandered all around the house, sniffing out other hiding-places, then came and sat next to me on the sofa, pressing up against me for pats.

 

We can learn a lot from cats.

Watching Rembrandt settle into his new environment has been quite an education in self-care. If he gets stressed, like when a stranger comes to visit, he takes himself off to one of those hiding spots. If he needs help, he asks – miaowing, or winding himself round our legs, or a carefully placed paw pulling our hands to the exact spot he wants scratched. If we touch his tummy or somewhere else he doesn’t like, another carefully placed paw pushes our hands away. He’s worked out which are the best windows to watch birds from. He’s sussed out all the sunniest spots for snooze-times.

He knows what he needs, and he’s good at getting it.

But how does what a cat knows about self-care help us?self care cat

We might not be able to snooze in the sun
or hang out in hidey-holes all day,
but there are human versions of self-care,
not that different from a cat’s.
If we incorporate good self-care habits
into daily life, they will make our lives easier
to manage, help us reduce stress, and manage the consequences of chronic illness and pain.

Know What You Need

Rembrandt knows exactly what he needs – kindness, cuddles, kibble and clean water, just for starters. He’s also pretty fond of playing and prowling and pouncing. Sardine suppers, and snuggles on sofas.

Our needs might be a bit more complicated – managing life/family/job when you live with chronic pain and/or illness, for example.

Make a list of your needs

e.g: I need to take a few days off work because I am exhausted.

Go through your list and rank the items in order of priority.

Figure out what you have to know, do, find out etc. in order to make the things happen.

Set achievable, time-sensitive and measurable steps for making the things happen. You are more likely to stick to these than to open-ended goals.

e.g: I will go to the library on Tuesday and get a book about building confidence.
I will read it for ten minutes every day.

Put Yourself First

Are you in the habit of attending to everyone else’s needs before your own?

Do you tend to put everyone else’s wants ahead of your needs?

It’s easy to get submerged and overwhelmed when you are rushing around looking after everyone else, but take a step back and learn to prioritise your needs against other peoples.

You don’t have to be all things to everyone – let them be some things to themselves and, even better, to you.

Be a cat – if Rembrandt wants a quiet time, he’ll take himself off to his favourite spot behind the sofa, never mind if I want to cuddle him. If he wants a chin scratch, he’ll put his head in my hand, never mind if I want to keep typing a blog post!

Ask for Help

dav

If you’re struggling to manage everything, delegate.
Think about what people can do to help you, and ask them.

Too sick to go shopping? Write a grocery list and ask a family member or friend to go to the supermarket for you.

Too ill to take the kids to their soccer match, or even go watch them? Ask another parent on the team to take them. Your kids might want you to go, but they don’t need you. you might want to take them, but you need to stay home and get better.

When you think in terms of wants (what we’d like) and needs (what we have to do), it makes prioritising easier.

Set Boundaries

The first day Rembrandt was allowed out, he scouted out his new territory, and marked the boundaries by rolling around on the ground. We heard a few hisses and growls the next day when another cat tried to walk along our fence. Pretty sure we won’t be seeing any mice now the house smells of cat!

Fortunately, we can just use our voices!

Tell other people what you can and can’t do when you are making arrangements or sharing household tasks etc.

Be clear and be firm. If you can only manage to stay at a friend’s party for half an hour, because staying longer will cost you days in pain and exhaustion, don’t be persuaded to stay longer.

Work out what your limits of energy are, and work within them.

Say ‘No’.

For many of us, saying no is difficult, and we go along with other people’s demands at the expense of our own needs.

If we are clearer about what our needs are, and know our boundaries, saying no to other people becomes easier – and you can offer alternatives if you’d really like to say yes to something, but need to say no.

Take a Nap

Rembrandt sleeps most of the day. Eat, sleep, play, sleep, snuggle, sleep, sleep, sleep, snuggle, sleep, find the sun, sleep – you get the picture. I wish I could sleep as much as he does

Dealing with pain often interrupts a healthy sleep, so taking naps during the day becomes essential.

Even if you don’t take naps, rest-times are still important.
Break tasks up into smaller blocks of time, with rest breaks between.
Relaxation exercises, Mindfulness techniques, breathing exercises and meditation are all great to help you rest or sleep.

Play

Rembrandt has a wild-hour every evening. He loves hiding under a chair and pouncing on a crochet mouse with a long fluffy tail that we drag along the floor on a string.

You might enjoy less feline leisure pursuits!

But leisure is a vital area of self-care (and a great distraction for pain, too). Doing stuff you love makes you happy. So make time for painting or swimming or fixing motorbikes – or even just watching your cat play.

Spend Time Alone

Rembrandt loves sleeping on our feet when we go to bed at night, but some nights, he wants to stay on his own, in the quiet of the lounge. We might hear him padding about, his claws ticking the wooden floor, or crunching on a late night snack as he finishes off his dinner kibble. Or he’ll just be curled up on the sofa, his head under his paw, and refuse to budge when we call his name.

Taking the time to be alone sometimes, even if it’s only five or ten minutes a day, gives us the chance to listen to our own thoughts, or hear our own breathing. To recharge our batteries.

Do something for yourself, by yourself. A walk in the woods, an afternoon at the movies, sit in the sun in the garden, or curl up on the sofa with a book.

And if someone calls your name? Refuse to budge.


selfcare pin

Walking Sticks & Freedom

This morning was one of those grey-white, mizzly days. Warm, and not quite raining, but the sun seemed to have decided to stay in bed, wrapped up in the snuggly folds of duvet-clouds.

I, on the other hand, was fizzing with energy (rare, and not-to-be-wasted), even after a shower. So after breakfast, we decided to go for a walk. The clouds were a bit greyer by then, and I didn’t want to get caught in a second shower, so we headed for our favourite patch of jungly bush, the monkey forest.

There’s three things that make for an ideal walk in our book – creatures, bridges, and beautiful surroundings. Today we had all three. When we got out of the car, there were a few chooks clucking around. As soon as they saw us, they got in line like a bunch of schoolchildren, and followed us through the car-park to the edge of the bush.

I’ve always loved bridges. Maybe it’s because of that sense of excitement and possibility I got from crossing bridges as a child – you never know what’s on the other side. Or that sense of delicious fear – maybe there really was a troll underneath. Bridges always made a great playground – Pooh Sticks, and Pirate ships. Gym equipment – I never managed to walk across on the handrail because my balance is crap, but it was always fun trying. And bridges with get-attable struts underneath were great for swinging across a river like a monkey.

OLYMPUS DIGITAL CAMERAThese days, we still play Pooh sticks – even if we don’t have the grandchildren with us. We’ll always stop and have a look at the view from a bridge. And we might even have got into the habit of stopping for a kiss on every bridge we cross.

I’m not sure the bridges in the monkey forest really count as bridges – just a few planks across a drainage culvert, but they are long enough for the two of us to stand in the middle for that kiss, so that’s good enough for me.

Today, I didn’t need my walking stick. That’s always a bonus, because it’s always nice to have both hands free to take photos, or to point out creatures, or to stroke my husband’s back when we have a kiss on the bridge.

But I should probably add ‘walking stick’ to my list of things that make an ideal walk.

Because even though I hated having to use one when it first become necessary, I’ve come to realise that a walking stick is like a bridge. They’re both designed to help make people’s lives easier. One helps you walk across a river without getting your feet wet, the other to walk along a river without getting your hips dislocated.

My walking stick is a symbol of freedom. Scrub that, it’s not just a symbol, it’s a tool. It’s not a badge of disability, it’s a tool that lets me do the things I want to do.

Like last week… we wanted a walk along the river near us (a walk stuffed full of bridges, views and creatures). It was a fabulous spring day, and with all the trees in blossom, flowers blooming on the banks, and fluffy balls of ducklings bobbing around on the water below the bridge, the river-path is one of the nicest walks around. But when I got out of the car, my hip slipped out of its socket.

It didn’t hurt, and walking is actually one of the best ways of helping it go back into place, but walking is a challenge when you hip is flobolling around like a rag-doll. So out came the stick and off we went for our walk.

It’s hard sometimes, making the necessary adjustments to a life with long-term disability or illness. It feels like a loss, when you’ve always been able to walk and run and climb and swing as free as kids pretending to be monkeys under a bridge but then your body decides not to work that way any more. It feels like a failure to need a walking stick, or a wheelchair, or a feeding cup, or a disabled parking placard, or whatever other tools you need to live your life.

walking sticks pinWe all use tools to make our lives easier. A pen is a tool, or a screwdriver or a car. They all give us the capacity to do something our bodies can’t, or to do it better, faster, stronger. I’d never felt a failure using a pen to write down a story instead of memorising it. Or for using a screwdriver to tighten a loose screw because it does the job better than twisting it with my fingers. Or for jumping in a car to drive 8 km to work each morning.

It might hurt when people shout out words like cripple or hopalong or whatever narrow-minded, judgemental drivel that spills out of their mouths. No matter what that stupid childhood rhyme says – sticks and stones may break my bones, but words can never harm me – words can and do harm.

But if we consider all the tools people use in everyday life – cutlery, toothbrushes, zips, phones, shopping trolleys, scales, computers, lawn mowers, buttons… you’ll get a very long and wide-ranging list. Why should anyone feel a failure because their list includes a few extra items?

And as for the name calling? Words can be diffused or transformed, and losses can be turned into gains.

After our walk, I came across a wonderful performance poet on Twitter this afternoon. She totally gets the power of diffusion and transformation. She replaces the word disabled with stick-abled.

Stick-abled. That diffuses the unkindness of being called a cripple, and/or the negative emotional impact of needing a walking stick. And it celebrates and embraces the walking stick for the freedom it gives us.

I call that a success. Gimme my walking stick, I’m gonna have a happy dance.


 

 

Getting Mail

An envelope fluttered into my mailbox yesterday.

When I was a kid, getting post was one of the most exciting things ever. That sense of wonder and anticipation fizzing when you saw your own name on the front of the envelope. Inside was always something worth the fizz – if it wasn’t birthday or Christmas gifts, it would be a party invitation, or a letter from my Nanna, or a notice from the local bookshop that the Laura Ingalls Wilder book I’d ordered a few weeks ago had arrived in store.

As an adult, of course, it’s far less exciting. Adults get those brown envelopes with windows, that never usually involve money siphoning out of their bank accounts.

But yesterday’s envelope was white. My name and address were hand-written. It had a proper stamp, not a printed frank. All reliable signs that the contents would be more akin to those letters of childhood.

Sure enough, the contents didn’t disappoint.

A couple of months back, I submitted a poem to a fine line, for the Spring issue, Masks, and it was accepted. a fine line, the New Zealand Poetry Society’s quarterly magazine, make a small payment of $20 book tokens to the poets they publish. And here was mine!

mailpin2I still haven’t spent the one I got from my poem Crop Circles that was published in the Autumn issue. I’m looking forward to a trip to PaperPlus tomorrow, to browse the book section. Not sure what I’ll get yet. I’ve got the whole set of Laura Ingalls Wilder books now, all of them well-thumbed from many repeat readings over the years. But there are a couple of Linda Olsson books I haven’t read yet, and… and… and…

I need to go browse the PaperPlus catalogue.

So I’ll leave you with poems – the poem I wrote for the masks theme, plus a bonus. The other week I wrote about National Poetry Day, and mentioned the event I was going to in the evening. Turns out my poem, in response to the set theme of ‘together’, came in second place. Hope you enjoy them both.

 

Stilettos and Lipstick

When I go to my sister’s wedding
I will dress myself in my best behaviour.
I will wrap up in a twin cling of primrose silk
and prim smiles, veil myself inside my skin.

I will take a wide-brimmed hat,
black, to shade my eyes. Pale yellow flowers
will flourish in the brim. I will glove my hands
and my tongue in pristine white.

I will stand straight in my polished black heels.
Even when she preens with gold and diamonds
and the husband she stole from me,
I will wear my shining lipsticked smile.

Sheathed in a padded vest beneath my dress,
I won’t fall on stiletto barbs she shawls
in a simper of all’s fair in love…

I will drink one flute of champagne.
In slow, occasional sips, to stop the bubbles
getting up my nose.
I will smile.
All day.

And when I get home,
I will shed my smile. I will strip to my skin
and step under hot rain in my shower,
to scrub away the sheen
of silk
and sister.


Baking with Nanna

I perch on a high stool in Nanna’s ribbon kitchen,
my red throne in her empire. She measures in palms
and carefree glances. Sugar and flour dunes rise
in a Pyrex ocean. Butter pebbles scattered on top stick
to fingertips like wet sand. There is no elbow room.
We rub shoulders crumbling ingredients together
and she whispers a secret – she never uses that jug
my mother bought her, with its red ladder of metric.
Nanna’s jug is blue, polished stoneware, milk etched
in white script. She fills it to a pint, and lets me pour.

mailpin


 

Watching the Birdies

Our avian wildlife put on quite a show for us on Friday morning.

We keep a bag of birdseed by the front door, and every morning pour handfuls of it on the fence outside our dining-room window, so we can watch the birds foraging while we eat breakfast. We always see a swarm of squabbling sparrows and their more docile cousins, dunnocks, diving in for the juiciest seeds. A couple of chaffinches and greenfinches often join the fray, and once or twice a silvereye has dropped by to see what’s going on.

Today, we tried something different. We scattered the seeds on the driveway, where we could watch any birdie activity from the comfort of our sofa. It was a good move. Within minutes, the concrete driveway was a moving carpet of birds. The chaffinch couple obviously put the word out to their mates, because I counted at least ten of them scrapping with the sparrows.

Eight greenfinches and two silvereyes came along too. Even several blackbirds and starlings, who don’t usually have any interest in the fence-feeding, showed up to check out the party, skirting around the edges like bouncers at a nightclub, fluffing out their feathers and puffing out their chests.

Overseeing the melee of seed-munchers were a couple of tui, sitting in the neighbours tree and turning their beaks up at the sugar-free fodder. On the garage roof, a rotund seagull strutted back and forth along the edge of the gutter, giving its best attempt at looking half-starved.

It was all very distracting when I was supposed to be writing a poem or three for different National Poetry Day events.

They reminded of the first neurologist I saw, when the lightning-bolts and hammer-blows of pain in my face had not yet acquired a diagnosis. Or at least, my GP and I were pretty sure the diagnosis was trigeminal neuralgia, but the neurologist was less clued up than we were.

Despite his mis-diagnoses, the neuro did at least try to treat the pain I was experiencing. First he prescribed Tegretol (Carbamazepine) and Baclofen. Tegretol is considered these days to be a first line of treatment for TN (trigeminal neuralgia) and other nerve pain, as for many patients it is very successful at stopping the pain.

birdiespin3It was for me too, in terms of pain relief.
Or at least, it looked like it would be – I’d begun to get some pain reduction, when some side effects kicked in – extreme, almost vegetative fatigue coupled with sudden onset of suicidal thoughts. Those hit me like a wrecking-ball smashing into a brick tower. So the neuro took me off Tegretol, and replaced it with Gabapentin (Neurontin).

As the neuro described Gabapentin as a second choice, I remember asking “OK, the $64,000 000 question – how effective do you expect Gabapentin to be?” The answer was 100%. The side effects I’d experienced with the Tegretol ceased within twenty-four hours of coming off it, and apart from slight dizziness the first couple of days I didn’t experience any side effects to the Gabapentin. (I learned later this was probably because I’d been started on the correct dose and titrated up to a therepeutic dose at a slow rate. With the Tegretol I’d been started on too high a dose.)

No side effects was fantastic. But 100% pain relief was not forthcoming. After three or four weeks my pain had reduced, but by about 30 to 40%. I was still on a relatively low dose, but the neurologist decided that as it hadn’t worked 100% by then, it wasn’t going to. He said to come off the Gabapentin, and told me there was nothing else he could do.

“Watch the birds out of the window,” he said. “That’s what I do to distract myself from the pain when I’ve been sitting too long at a conference and get an aching bottom.”

If I’d been a bird at that moment, I’d have pecked his eyes out.

Now, I’m all for watching birds as a distraction technique because I know as part of a toolbox for managing to live with pain, distraction helps. Alongside breathing exercises, relaxation, meditation, mindfulness etc.

But as a shoulder-shrugging, slapdash suggestion to a problem that has many other avenues available to the doctor that cares to explore them, no way is ‘look at the birdies’ a viable solution.

Because my GP was the kind of doctor who does explore other avenues, we discussed different treatment options and research papers and came up with a treatment plan that meant I wasn’t just left looking at the birdies. (Though I’m pretty sure the neurologist would have needed to bingewatch birdies to cope with his sore bum from the naughty chair he’d have been sent to after the hospital heard from us about his antics).

So what are the medical options available aside from ornothological prescriptions?

Anti-Convulsants

1medspicAnti-convulsants were developed to treat the epilepsy, not pain, but it was discovered that they are good for treating nerve pain because they slow down electrical impulses which reduces the nerves ability to send pain messages.

Tegretol and Gabapentin are the first choice of medication for most TN patients, but there are several others available if these two are no good.

They are not like over-the-counter pain meds that you take as and when you have pain. To control the neuralgia pain, they need to be taken regularly.

3medspic
Muscle Relaxants

These do what they say on the box and reduce muscle spasms.

Muscles contracting or twitching is a trigger that exacerbates trigeminal neuralgia pain.

They will sometimes be prescribed as the only treatment, or alongside anti-convulsants.

 

Anti-depressants

2medspicAnti-depressants are effective for treating nerve pain.

It’s thought they work by increasing neurotransmitters in the spinal cord which in turn reduces pain signals.

Trycyclic antidepressants are most often used for pain.

The doses needed to control pain are much lower than doses needed to manage depression.

 

6medspicOther Additional Treatments

There are a number of options available either by prescription or bought over the counter.

These are useful to have on hand for extra relief.

Some days I wouldn’t be able to clean my teeth without painful lightning bolts if it wasn’t for my extrastrong, antiseptic toothpaste numbing my mouth enough to get the job done.

My pain is far better controlled on Dilantin than on Gabapentin, but it’s not perfect. But I’ve noticed when I have IV steroid treatments for my Sjogren’s Syndrome symptoms, I find it also relieves my neuralgia symptoms.

4medspicAlternative Options 

Some people can’t take conventional medications, some people don’t want to, and some need additional support.

Talk to your doctor if you are trying something different, like natural remedies. Natural doesn’t necessarily mean safe, and some remedies interact badly with some meds.

 

Remember, I’m not a doctor. I’m sharing information I’ve learned through my own research and experience, but if you are having problems with your meds or suspect you have trigeminal neuralgia or need any other medical advice, see a doctor.

Most doctors don’t belong on a naughty chair!

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Poems, Prompts and Plums

Tomorrow is National Poetry Day for New Zealand. For the last month, my Facebook feed has been full of information about all the different events happening around the country. If I had limitless funds, and could either clone myself or time-travel, I’d be racing around to poetry readings from in Dunedin, Christchurch, Wellington, New Plymouth and Auckland, just for starters.

In the absence of magical powers, I’m contenting myself with heading to the event at my local library. The writing workshop group I go to has been asked to kick off proceedings with a reading of some of our work, before the open-mic session, and then the big news of the night… the announcement of the winners of the district libraries poetry competition.

I haven’t decided what poem I’ll read yet. By 5pm tomorrow I should have written at least three new poems, thanks to National Poetry Day events. At midnight tonight, I’ll get a list of 10 words e-mailed to me, and have until midnight tomorrow to write a poem including each word in the right order. At ten past one tomorrow afternoon, if I tune in to Jesse Mulligan’s afternoon radio show, I’ll hear him announce some words – 6, I think -and will have until 2pm to write a 6 line poem using the words, in whichever order I like. And there’s another tab open on my laptop now, for a site called Given Words. Five prompt words, used in any order and grammatical structure, in a 200 word max poem – to be submitted by midnight tomorrow.

All these contests have a slightly different approach to the prompt words idea, but they all have one thing in common. They impose a limitation and rules on the writer. This kind of writing activity is really useful for developing your writing craft. When you have an idea of something to write about, it’s easy to fall into your comfort zone – familiar style of poem and choice of words, etc. But imposing structure through form, prompt, content or limitations such as length, it can take the writer in quite unexpected directions.

I prefer to write free verse. I prefer reading free verse too – so for me, it’s always a challenge writing a specific form, especially if there is rhyming involved. But I like to try every now and again, because to me it is like flexing writing muscles – the more I use them, the stronger they become. Nailing a particular style of poetry helps make my comfort-zone writing better too.

I doubt I’ll be pulling off any form poetry in the next 24 or so hours, but you never know – it all depends on where the words take me when I get them. Until then, as my National Poetry Day contribution, I’m sharing some of the different forms I have come across.

diamante quake pinDiamante 

The Diamante poem is a shape poem – the clue to the shape is in the name! It’s a seven line poem short first and last lines and long middle lines, so it forms a diamond. This would be a lovely form to teach children to write when introducing them to poetry – there’s a real playful attitude to words involved in this style..

It seemed the perfect form to use to write about an earthquake – they often start with small signs, quiet rumbles and shakes that spread out to longer, more violent ones, before dwindling away again.

 

Haiku Sonnet

Riffing off the style of both haiku and sonnets comes this little number! A haiku sonnet. I can’t remember where I first came across the haiku sonnet form, but if you like the syllabic structure of haiku and the rhyming couplet finale of sonnets, you’ll probably enjoy having a go at this.

All you need is four haiku and a rhyming couplet.

The first one I wrote was not fit for public consumption – just some pretty-pretty observations about Spring, but after practising writing haiku and getting my head around the deeper features of the style, I gave it another go.

BASHO’S TRAIL

shivering bamboo
umbrellas mossy logs
walking Basho’s trail

silver river glides
under boughs of red acers
ancient book opens

soft with fallen leaves
stone slabs carve the hillside
lines from Basho’s pen

Jizo statues stare
heads cocooned in red crochet
summer sun blazes

Three hundred years since Matsuo Basho set forth
to walk and write The Narrow Road to the North

 

dazzle pinBlues Sonnet

I came across this form when I was given a prompt to write a blues sonnet about food and Egypt.

The sonnet has many forms. Originally the Petrarchan sonnet, from Italy, it has been adopted and adapted by other writers over the years.  I’m sure many of us remember sleepy, sunny afternoons in the schoolroom, stifling yawns over the teacher’s readings of Shakespeare’s sonnets to his mystery love.

With a strict rhyme scheme and meter to follow, they are a demanding form to write but well worth the effort.

 

Villanelle

The basic structure of a villanelle is 19 lines – five tercets (three-line stanzas) and a quatrain (four-line stanza), with two repeated rhymes and two refrains repeating alternately.

One day, I might finish writing one. It’s on my must-try list, but for now, the closest I’ve come is reading Elizabeth Bishop’s One Art, which I do every month or so. One Art is my favourite poem and she makes the villanelle look easy. It’s not!

plumspinReply Poems

Not strictly a form, but a great writing exercise that makes you adhere to a particular structure.
The idea is you respond to a poem someone else has written – in the same style.

For several months, I swapped e-mails with friends in the UK, and we wrote them in the form of the William Carlos Williams poem This Is Just to Say.

That was a novel way of sharing our latest news with each other – but I finally got round to writing a more serious response poem the other day for my writing workshop group.


This Is to Say Back

I found the note
you left
on my fridge
about those plums.

Perhaps
you didn’t realise
poison
laced their skin.

Forgive me,
but you’ve already
stolen
more than plums.

 

This list is a very small selection of all the different poetic forms you could write. I’d include more, but right now, it’s coming up to midnight, and I’ve got some prompt words to check out.

You never know, they might even turn into a villanelle.

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Learning to Live With It

It’s the middle of winter here in New Zealand, and we’re already seeing signs of new life all around. It’s a gorgeous, sunny day today so I’ve just had a traipse through my garden. It’s heaving with welcome signs of spring, like the purple flowers starting to put out their spears on the hebe shrub, and the yellow flowers on the succulent I don’t know the name of. It’s been looking a bit bedraggled this winter after a hefty prune in autumn, but its  purple leaves are beginning to get that lovely polished shine like plums.

There’s the unwelcome ones too – dandelions poking their noses in everywhere and some scrubby, groundcover thing with pinky starflowers and suckers that will cover the entire lawn if it’s allowed. And one sign that should probably be unwelcome, but is very pretty – a patch of bright yellow flowers like floppy hats, growing under the cabbage trees. Probably I should rip it out by the roots and incinerate it now as I’ve a suspicion that it’s clover and that stuff will encroach like crazy, but the grass is so long it’s hard to see what the flowers are attached to.

In my ‘previous life’, before my health crapped out and I had to learn to eke out my energy with economy in mind, I’d have got straight out there today and mowed the lawn, dug out some dandelions and whipped all the weeds out from under the shrubs and trees while my husband built the raised beds we’ve been planning for veggies. They’ll need to be planted soon.

But it’s this life, and I’ve had to learn to live with it. I can plant and prune and weed and water, but any digging or mowing that needs to be done is my husband’s job these days. Some things are pretty easy to learn to live with though – sit in the sunshine with a gin and tonic and a gardening magazine while he gets his hands dirty? Don’t mind if I do!

Learning to live with it isn’t all gin and tonic and sunshine though. How many of us with chronic health conditions have heard the phrase ‘You’ll have to learn to live with it.’ from our doctors because there is nothing else they can do?

When you have a chronic condition that is rare and poorly understood or difficult to treat, that is progressive or has no cure, it’s not unusual for doctors to run up against a dead end in treatment. Surgery isn’t always an option. Patients might have allergic reactions to medications. Heavy-duty medications used for conditions like trigeminal neuralgia sometimes cause liver damage after prolonged use, and often become less effective long-term. There is a limit to what medications can achieve – they relieve symptoms but can’t necessarily reverse a condition, or cure it.

When doctors say you’ll have to learn to live with it, they are not washing their hands of you. They are being realisitic – they are out of treatment options.

But not all doctors are created equal. I’ve had some great GPs and specialists, some good ones and one that was a bloody disgrace. So sometimes they are out of treatment options because they don’t know enough about the condition you have – as a patient you may have to advocate for yourself for trying particular medications, getting second opinions etc. And sometimes they are out of options because there really is nothing more they can do to treat your condition.

It is hard to hear that there is no hope of a cure or a treatment for your condition. Patients are often angry, shocked, frightened, confused and, particularly if the doctors bedside manner is lacking, interpret you have to learn to live with it as the doctor being dismissive and cruel rather than realistic and honest.

Ways to Find Acceptance

Support Groups

We all need a sense of belonging, and all too often chronic illness is an isolating experience. Try and find a support group for your condition in your area so you can meet with other people who face the same type of issues.

Online is an option too – search for groups on Facebook that you can join. Or start one yourself.

Counselling

Life changes, sometimes beyond recognition, when chronic illness comes calling. You may have to give up work. You may have to give up activities you love. You may find friends and family get impatient with you, or drift away.

A good counsellor will help you find a way through the tangle of emotions like grief, anger, resentment, fear that big life changes and losses incur.

Writing and Art as Therapy

Writing and art are effective therapies you can do for yourself at home. Some examples:

  • write down all your negative feelings and thoughts – then throw the list away. It’s a good way to express things you can’t or don’t want to say to other people
  • write a letter to whoever has upset or angered you -your doctor/family member/friend. Tell them exactly what you think of them and why. Then throw it away.

Throwing these pieces of writing away is a symbolic act of getting rid of the feelings that are dragging you down.

  • write a list, focusing specifically on your health issues, of all the things you think should not have happened to you, all the things that frighten you or make you angry etc., all the things you hate. Then write another list of all the opposites – what happened that helped, what has made you feel happy or brave, all the good things.

Words can be difficult to find so art makes a good alternative. Any art activity makes a good distraction or relaxation activity, but there are also specially designed art therapy activities which help you work through your emotions.

Pain Diary

Sometimes a doctor will ask you to keep one for a number of weeks to help them assess your condition. Pain diaries are versatile tools that help us get a detailed overview of our conditions and how to manage them. Have a think about what you need to include in yours. What I needed to record for EDS is quite different from the symptoms I needed to get a handle on for Sjogren’s Syndrome.

You might need one that focuses on pain, or fatigue. You might need to include hour by hour changes. You might need to include sleep patterns or diet habits. Find an app that suits you, or design your own.

If you are completing a pain diary for trigeminal neuralgia, recording the time, duration and intensity of attacks is a good start for helping you recognise any patterns in your pain. To get a comprehensive view of the impact the pain has on your life and of specific things that trigger your pain, you’ll need more columns. Include columns for describing the pain, recording what medications/treatments you have, food & drink consumed, activities undertaken, daily self-care tasks, temperature and weather, and general comments on  your mood/sleep/stress. You’ll start to see which of these things are problematic, and to what extent.

NB: A diary is a good interim approach, but it does make you focus a lot of attention on your pain/illness, which is sometimes counterproductive. Once I had a pretty good handle on my triggers and the best ways of relieving flare-ups, I stopped keeping the diary and started focusing on more positive things.

Self-help techniques

I’ve written before about how breathing exercises, relaxation, Mindfulness etc help manage pain, and stress and insommnia. They are also great mood enhancers. If you feel relaxed it’s less difficult to tackle difficult emotional situations.

Explore New Ideas

You may get into a trap of thinking you can’t do the things you used to love because of pain, fatigue, etc. But very often, you can find new ways to do things – I can’t say I ever loved digging or mowing, but I do love having a nice garden. But now my husband does the heavy lifting tasks, and we are redesigning the garden with raised beds so I can be more involved in the planting and growing and tending.

What things do you like doing? List what makes them difficult for you. Then list some positive solutions – do the activity for a shorter time, get a disability aid like a walking stick, change the time or place you do them…

Maybe you do have to stop the activity altogether. Write a list of new skills/hobbies you’d like to learn. Arts and crafts, music, cooking, tying flies for fishing, learning the history of architecture… let your imagination go wild with possibilities.

Even in the middle of winter, if you look for signs of spring, you’ll find them.


learningtolivepin1

Editing Poems with a Giraffe and an Ostrich

Where I live on the Kapiti Coast in New Zealand, towns are the filling in a very beautiful sandwich. One slice of bread is the turquoise Tasman sea, which is garnished with Kapiti Island, a bush-clad native bird sanctuary and reserve 5km off shore. The other slice is the perpetually green slopes of the Waikanae hills, unfurling 500m into the vast sky.

We have a slice of the hills visible from our kitchen window. From here, the ridgeline of the hills is a smooth, wavy line, looking very like a row of joined up lowercase ns in a child’s handwriting exercise. The sweeping flanks of the hills are dark green from the ranks of pine trees marching up them. But let your eye sweep northwards along the ridge and you’ll see where the pines revert to native bush – lush, green slopes of kohekohe trees and giant ferns sprawling up to the sky.

giraffe pinHidden beneath 330 hectares of this dense canopy is Hemi Matenga scenic reserve. The reserve, one of the largest remaining patches of native kohekohe forest in the Wellington area, is home to tui and kereru and ruru. When we still lived in the centre of Waikanae we’d often hear the ruru’s mournful hoot floating on the still, night air as we were falling asleep at night.

A couple of walking tracks wind through the cool shadows of the bush, and a steep, sometimes muddy, 514 metre climb leads from the reservoir at the entrance on Tui Street up to the grassy lookout at the summit of Hemi Matenga. From up there, spread out below are spectacular views across Waikanae, out to Kapiti Island and across the sea to the South Island.

And if you are below, at a particular point of a particular road, lift your eyes to the ridgeline of Hemi Matenga and you will see…

a giraffe.

Yep, a giraffe. But you have to be fast – drive a few metres further and the giraffe disappears, wearing a pretty cunning camouflage of tree. Oh, alright, it IS a tree – but it does make a convincing looking giraffe. And if you squint a bit, you might spot a slightly distorted looking ostrich several paces away staring down at the giraffe.
Our grand-daughter calls it the Dr Seuss ostrich.

When I was teaching, I used to drive past the giraffe-spotting spot every day on the way home from school. I always looked out for the giraffe and his ostrichy friend. I’ve seen them in all weathers – light rain, grey skies, bright sunshine, moonrise, even freckled with a thin, lacy coat of snow – and snow down to 500 metres around here is hens teeth kind of event. Sometimes cloud cover was down to where the bush on Hemi Matenga gave way to houses, and giraffe and ostrich were as hidden in the cloud as the birds under the canopy.

Now we live in the next town and I’m not teaching any more, we don’t often view the ridge from the right animal-spotting angle. Yet the habit is well-ingrained and by chance last week I was in Waikanae twice. The first time was a clear, sunny day, and the giraffe looked strong and sturdy standing against the blue sky chatting with his ostrich pal. The second it was a grey, mizzly kind of day, and mist swirled around the slopes of Hemi Matenga. No creatures to be seen.

giraffe pin3Seeing and not-seeing them again reminded me of Contours, a poem I’d written some time ago about seen and not-seen things.

As I said at the beginning, one slice of our sandwich home is the ocean and Kapiti Island, sitting a few km out to sea. The island is an iconic symbol of local identity dominating the watery horizon. 40-odd km over its shoulder, depending on weather and light-quality New Zealand’s South Island advances and recedes, appears and disappears daily.

These changing views of the South Island were the focus of Contours. That, and loss. But I didn’t like the title, and there was something missing, some connection that changing the original title and tweaking and trimming some of the lines didn’t do quite enough to convey what I wanted.

So I’d done what I usually do, and left the poem to marinate. Sometimes all that is needed is to step back for a while – a few days, several weeks, maybe six months – and take your mind off it. The solution will often present itself when you’re busy looking the other way.

PRO TIP – keep a pen and pad beside your bed in case the solution strolls along in the middle of the night. The notepad function on cellphones is useful too, or texting yourself. These days I always keep something to hand where I can record ideas – I’ve lost too many to the ether by trusting my memory to hold on to them until morning!

In this case, it was my two, long-time-no-see trees masquerading as wild animals that presented the solution. They seem to capture some giraffey, ostrichy character and emotion that makes them look as if they could trot off into the moonrise wing in hoof together. I realised it was exactly that sense of character and emotion that was missing in my poem.

After that, all it took to fix my poem was one hour, two lines coaxed into sunshine, and three lines banished into mist.

Now all it needs is to be read.

 

The Language of Maps

Waves roll a turquoise silk swatch
from this coiled wire of road
to Kapiti Island.

Beyond Kapiti’s sharp, green pleats,
silk sea still unfolds, spreading
to another piece of this jigsaw land,
the last interruption before Antarctica.

The South Island is so clear today
I think I should see red flares flower
on pohutukawa trees,
and your yellow, wet-suited arms
wheel through white splashes of waves,
while blue flashes of tui wings
guide you to harbour.

A ribbon of dust streams silver glitter
through my fingers. My view blurs.

Some days, the South Island
is just an indigo suggestion, a smudge
blurring sea and sky,
or a soft tumble of clouds
gathered on a distant hem of water
below snaggletooth mountains.

Other days, its shape is so sharp I think
the continental plates shifted miles closer.

Under a star-sequinned shadecloth
of night, I know where it lies,
from spasmodic scythes of silver light –
maybe a lighthouse signal
in the Marlborough Sounds.

But on days clouds draw heavy drapes
across the sky, or rain falls in grey stripes,
my only sight of the South Island
is when I open the glovebox
and unfold a neat rectangle of map
you put there before you left.

You taught me the language of maps,
a fluent lexicon of contours and coordinates.
You said all paths can be traced with a map
and compass; all landmarks found.

Because of maps,
I know some things are not lost
just because they are hidden from view.

giraffe pin1


 

 

 

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