Tag Archives: dermatomyositis

Ouch! Killing a Killer Sinus Attack.

Only a few days ago, I was jubilantly chirping about finding my happy feet. Well, I should’ve held onto that thought. Stuck it onto my forehead with superglue, although it would need to be written backwards so I could read it in the mirror. “Life is Great”. However, please don’t ask me to actually write that backwards at the moment, as I’m not thinking clearly. I was simply being dramatic.

For those of you who’ve been following my trials and tribulations, you might recall that I was fighting off Fergus the Omnipresent Operatic Cough for about 6 months and it was getting me down. He was so darn persistent that he could’ve taught Calvin Cooledge a thing or two about persistence.

“Nothing in the 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

Well, I managed to have a good couple of weeks, but then Fergus decided to get sneaky. Or, perhaps like me, he has no sense of direction and he was actually heading back down to my lungs, but ended up in my sinuses by mistake. I don’t know. Either way, the results are the same. I’ve been in excruciating pain and my entire head felt like it was being compressed in a vice and the evil Fergus was turning the handle and laughing, of course and his evil eyes glowing like Christmas lights.

Actually, that shouldn’t be written in the past tense. That’s because Fergus is still at it and flaunting his malevolence. Nothing makes Fergus happier than a bit of torture.

Anyway, I’d been having these intense headaches for a few days, and wondering why my eyes were aching and was getting a bit concerned. Other than having Fergus is my sinuses, I have hydrocephalus and a shunt in my head and these were all the kind of symptoms associated with a block shunt and a trip back to the brain surgeon. With my daughter’s birthday tomorrow, slumber party and associated comings and goings, brain surgery wasn’t exactly on my list.

So, I was starting to get concerned. Just a little concerned. Nothing approaching a major, full-on panic attack with all the bells and whistles. However, then I blew my nose, and I swear a real, living breathing alien jumped out. It was freaky, weird and almost terrifying. I’m not going to thrill you with a graphic description or photographic evidence, but let’s just say this thing was a cross between a Killer python and a jelly rat. The sort of thing that has the infection control Police out in their lab coats, masks, rubber gloves and buckets of Domestos. It’s Quarantine.

Fortunately, I was booked in for an appointment with my rheumatologist at Royal North Shore Hospital. This is one of Australia’s top public and research hospital and home to weird and wonderful conditions like my dermatomyositis. My husband, offering whatever encouragement he could to his embattled soldier, said I was going to the right place for the day. True! Why would I want to go to a tropical island when I could be at the hospital? Well, when you’re feeling that crook and concerned your brain’s being devoured by infection, the deserted island can wait. I was looking forward to going back to my familiar stomping ground where there’s enough expertise from rheumatology, lungs, brain, exploding sinuses to handle whatever Fergus was going to dish up this time.

Well, much to my relief, they let me go and I left with a script for more industrial strength antibiotics, and I actually managed to have an extended coffee with my best friend from school at a cafe near the station.(I perk up well).

I should also mention that I was reading Markus Zusak’s: The Book Thief on the train and in the waiting room. It’s a funny book to be reading when you’re feeling really crook and wondering if your number’s about to come up, but it’s beautifully written. I loved the film and started reading the book and got distracted, but wanted to have another go.

Train trips are always a good way for me to really get stuck into a book as it takes about 90 minutes to get to the hospital. Moreover, it’s uninterrupted time and not that jerky stop start reading you have when you’re going off to sleep. Have you read The Book Thief? It’s just brilliant and the language is so poetic and beautiful. It’s also very philosophical, which I love as well. So, after a day of train trips and waiting rooms, I’m now up to page 164 and I take my time to absorb the prose as well. It hasn’t been an express read. I like to let the words and the magic settle like Autumn leaves in the snow (not that we have either here).

Anyway, I woke up at midday today after my husband handled the morning run. I can’t begin to describe the throbbing pain. However,  even walking a metre or so to the bathroom was a huge agononizing effort and I had a glass of water hoping that would help. It was a separate trip to get some Panadol out of my husband’s drawer. I have never experienced pain like this. I had to let those process before I could even ring my husband to tell him how sick I was. That was very humbling, scary. Nobody wants to be that vulnerable. So stuck in a dreadful situation and unable to respond.

Fortunately, for me it was temporary. I rang my husband which perked me up a bit and the Panadol and water were starting to work. With a huge blow on my nose, there was also more relief. I’ll be heading off to pick the kids up from school soon and I’ll be back on my feet in my usual style. Rowena is fine.

I’m glad I’m feeling better and finding ways to keep going, get back on my feet and not let chronic health control my life. Yet, on the other hand, I could use some TLC and my own private nurse to take care of me. Peel me grapes. I know I need to rest.

Do you live with anything ongoing, which is challenges you? Please share in the comments and upload your inner Fergus.

xx Rowena

Finding My Happy Feet.

“High heels are like a beauty lift. In a flat, you can feel beautiful, but a stiletto changes your mood, how you move – like a wild, beautiful animal. The idea was always to follow a woman’s wardrobe, her desires.”

Giuseppe Zanotti – Shoe Designer dedicated to providing women with “the most superlative shoes in the world”.

Confession time. While I’ve never fallen head over heels in love with a pair of shoes, I do have a thing for high heels. Indeed, since they’ve become the forbidden fruit, you could even call it an obsession.

Of course, I’m not the first person to believe high heels ooze sex appeal, a sense of fun, glamour and the promise of a glamorous night out. Indeed, anything but a night in with your cat watching re-runs of I Love Lucy.

Unfortunately, some of us are forced to hang up our stilettos long before our time. When even the Stiletto Queen has to hang up her sacred heels, and resort to (dare , I mention the unmentionable) SENSIBLE SHOES.  Or,  as my 11 year old daughter disparagingly calls them, “GRANNIE SHOES”. Whether through disability, accidents, chronic health, we’re left thankful to be alive, able to breathe and even move at all. As trivial as wearing pretty shoes might sound when you’re fighting for your life, they can also represent a broader sense of loss and grief after your life with all your grand plans and dreams, lands on the proverbial snake, instead of the ladder, in the game of life.

“You can’t understand someone until you’ve walked a mile in their shoes.”

This is the path I tread. I started this journey in my mid-20s when subterranean hydrocephalus in my brain, suddenly became graphically symptomatic. It was hard going to rehab and learning to walk again at 26 when all of my friends were out partying, their careers were still soaring and my life was heading the other way. I’d packed up my apartment and moved back in with Mum and Dad and was off to rehab in very sexy tracksuits, joggers and mixing with the over 80s.

Thanks to surgery, ultimately I largely recovered from the hydrocephalus, but still experienced debilitating fatigue.Moreover, the neurons weren’t firing in quite the same way either. I was fine but not fine.

However, at 35, I developed dermatomyositis, a debilitating muscle wasting disease after our daughter’s birth. It took 18 months to diagnose and by this point, I was in dire straights. As soon as I was admitted, I was put in a wheelchair. That was my legs for the next couple of weeks, followed by a walking frame and loads of prednisone. Despair doesn’t even begin to touch the depths of what I experienced then.  Survival was all that mattered and I didn’t even hope to see my children grow up. That was simply somewhere too far over the other side of the rainbow. I couldn’t even go there. They were still babies and wouldn’t even remember me if I’d passed. Rather, there was only today, tomorrow and each and every day was precious…the sort of precious you hold onto no matter how big the storm, how high the waves. Your life and everything you value, is hanging on by barely a thread and you won’t let go.

“What you wear – and it always starts with your shoes – determines what kind of character you are. A woman who wears high heels carries herself very different to a girl who wears sneakers or sandals. It really helps determine how you carry yourself.”

Winona Ryder

Yet, ten years down the track when the pressure’s eased off a bit, my need for footwear has taken on an element of urgency. The pup chewed up my one good pair of sensible shoes. After trawling round a few shopping centres, I haven’t found anything suitable. Not unsurprisingly, sensible shoes for the younger generation aren’t in high demand. Moreover, as much as my daughter might call sensible shoes “grannie shoes”, there’s still a line. A line I still can’t cross. I can’t. I can’t. I don’t want to turn 80 before my time. Instead, I might just have to go barefoot.

“I cried because I had no shoes until I met a man who had no feet”

― Helen Keller

So, with my shoe situation becoming desperate, I confess I muttered a prayer…a prayer for a pair of simply black shoes, comfortable, supportive and wouldn’t kill me. I wasn’t asking for luxury but something on your feet is a necessity, perhaps not quite in the vein of needing to eat but protecting your feet isn’t frivolous nonsense.

“I’ve spent $40,000 on shoes and I have no place to live? I will literally be the old woman who lived in her shoes!”

Carrie Bradshaw, Sex In The City

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So, after that long preamble, perhaps you can now understand why I was so overjoyed when I spotted a pair of black, Louis Vuitton sandals in the local Vinnies charity shop. They were completely flat and fit me perfectly. I’m not even sure if they’d been worn. Time to do the happy dance, except wait, there’s more. There were also two pairs of luxury Italian leather shoes. These shoes would’ve cost around $3000 new, so I was overjoyed to pick up the lot for $35.00. One pair was a little on the small side, while the others have a small heel and I’m not exactly sure how far I’ll be able to wear them. I might need to use my walking stick or stay sitting down, but I don’t care. I’ll find a way. Find somewhere suitable to wear them, and I’ll be the phoenix soaring from the ashes of disability, chronic health and all efforts to make me old before my time.

By the way, ever the storyteller and writer, I also had to cast a thought about how they got there. Whose shoes was I walking in and where were they going to take me now?  We live round the corner from Pearl Beach, which is a bit of a millionaire’s hideout. It’s where Bill and Melinda Gates stayed when they were out in Australia, and its not impossible that they might have belonged to the likes of Nicole Kidman, Cate Blachette although Hugh Jackman might be too big a stretch. It might even be possible that Carrie Bradshaw and her enormous shoe collection migrated there after Sex In The City folded. Whatever, I hope whoever owned these shoes, led a good life and will share a bit of their sparkle with me. After all, I’m still trying to re-climb proverbial ladder, and reach back up for the stars.

Meanwhile, I’m giving thanks for such a spectacular answer to prayer, and I can’t wait to launch into the next chapter. Surely, it has to be amazing! After all, I’m a believer.

Have you experienced any miracles lately? Please share them in the comments.

xx Rowena

PS The featured image was taken at Circular Quay alongside Sydney Harbour.

Life Was Meant To Be Easy.

According to the “Feel Good School of Thought”, life is meant to be easy. Adversity is a transitory thing that we can simply power through, as long as we “think happy thoughts” and “stay positive”. “If it feels good, do it. If it feels bad, give up.” However, from this perspective, we might as well pull the pin when “shit happens”. There is no reason to live.

Yet, ironically humans thrive on being challenged, using our problem-solving abilities, and overcoming adversity. We’re meant to use what we’ve got, even if some of the equipment isn’t in peak form. Indeed, adapting to these challenges stimulates the mind. After all, we were never designed to be couch potatoes, or even worse, liquid mash. Rather, we were meant to grow roots and broad branches, and stand tall on the inside, no matter what our design. Just think about how often you hear heroic stories of everyday people overcoming huge setbacks and surging forward in a new direction. Indeed, their curse can even become their blessing. The Paralympians embody such triumphs.

“I think a hero is an ordinary individual who finds strength to persevere and endure in spite of overwhelming obstacles.

So many of our dreams at first seem impossible, then they seem improbable, and then, when we summon the will, they soon become inevitable.

Once you choose hope, anything’s possible.”

-Christopher Reeve.

At a more basic level, I remember my Dad encouraging to overcome fear and have a go. His big line was: “it’ll put hair on your chest”. As a little girl, I didn’t quite get what he meant and took him quite literally and I didn’t want hair on my chest. However, these days, this sort of grit has been rebadged as “resilience”. This school of thought poses that we need to experience the bumps and knocks of life to grow stronger and prepare us for the big hit. This isn’t as much fun as thinking happy thoughts and only doing what feels good, but we do emerge more rounded and as the Scouts would say: “prepared”.

While that all sounds great in theory, it’s quite a different story when you’re lying face down in the mud with no known way of getting up. At this point, it’s quite natural to feel overwhelmed by shock, disbelief, anger and self-pity. However, if you want to move beyond subsistence, you have get yourself out of the quagmire and start thinking about taking those first few critical steps, be they literal or somehow figurative.  Staying put isn’t an option.

Rowena

This isn’t theory for me, but my own, personal experience. I have walked the talk, sometimes needing assistance.

When I was 25, I was diagnosed with hydrocephalus or fluid on the brain and six months later had brain surgery to insert a VP shunt. The hydrocephalus was pretty freaky. Although it was largely dormant for the first 25 years of my life, it rapidly became symptomatic and for the six month period in between diagnosis and surgery, I lived the bizarre and traumatic life of Oliver Sacks’s: The Man Who Mistook His Wife For A Hat. I had 6 months of intensive rehabilitation, learning how to walk and had occupational therapy to manage my life again. This all culminated in moving back in with Mum and Dad and a year off work. That in itself felt terminal. After all, when you’re living the story, you don’t know how it’s going to end. I slowly got back on my feet. Returned to work. Got Married. Had two kids. Then, the thunderbolt of medical misfortune struck for a second time. The birth of my daughter, triggered so much more than maternal joy. My hands turned raw. As it progressed, I couldn’t sit on the floor and get up again, dress myself. Eventually, 18 months later, I was finally diagnosed with dermatomyositis (DM), an exceptionally rare auto-immune disease where your muscles and skin cells attack themselves. As soon as I was diagnosed, I was put in a wheelchair and spent the next week or two in that and the next couple of weeks in a walking frame. I was only 36. Treatment made a vast improvement, but I went on to develop Institial Lung Disease with fibrosis, and affiliated chest infections nearly take me out most years. The Cough has now become such a permanent fixture, that I’ve called him Fergus.

I didn’t respond well to treatment for the DM, and five years ago, I had seven treatments of chemo. My specialist also changed my meds and I’ve been in remission ever since. Not smooth sailing, but still a relief. My kids are now about to turn 14 and 12 and still have their Mum. Moreover, I’m still an active part of their lives, even if I’ve had five years off work. I am so very thankful to be here. Yet, there are still times, especially when the cough flares up, that I get fed up. After all, I’m human, not invincible.

With the New Year, I’ve been rethinking my status quo and wondering how to get back into some paid work, while coughing like a mongrel dog and feeling dreadful in so many ways, that it’s tempting to sink underneath the waves and give up.

Prior to chemo, I had been employed as the Marketing Manager for a local IT Company one to two days a week. I’d also been working towards a motivational book about turning your mountain around. I had it all planned out. What had started out with a rather feeble New Year’s resolution to vaguely improve my heath through green smoothies, evolved into a surprisingly productive year. I lost 10 kilos, took up the violin and performed at the end of year concert, started the blog and tackled all sort of challenges at an adventure camp run by Muscular Dystrophy NSW…quad bike riding, sand boarding, para-sailing. It was incredible. I’d pulled off so many things I’d never thought possible, and was almost on top of the world.

 

All of these breakthroughs and successes were definitely book worthy and I thought my story could encourage others experiencing the hard knocks of fate, to give living a go. Living with two debilitating, life-threatening medical conditions and consequent disabilities, I was proof that it was possible to carpe diem seize the day even through times of serious adversity. However, my story wasn’t going to end there. The icing on the cake, which I intended to be the finale of the book, was skiing down Perisher’s Front Valley, in effect, turning my mountain around. Yahoo!

Rowena skiing downhill Fri

Skiing in Perisher. You can see my instructor, Tom, in the background…the wind beneath my wings. I went as a member of the Disabled Winter Sports’ Association.

That was the plan. However, while I triumphantly skied down Front Valley, my “victory” didn’t match my expectations. Rather than the exhilaration of triumph, I felt my gut sink with unbridled terror as I perched precariously over the edge, with a huge drop off down the slope to the village below. I felt like fleeing straight back to the safety of the “magic carpet”. However, I had my ski instructor with me and Tom went backwards down the steep start and held my hands to ease me down. By the time I finally reached the bottom after a few spills, I was more relieved than jubilant and I was just glad it was over.

However, the story doesn’t end there. Triumph soon did a terrifying back flip, and even before we left Perisher, I’d developed a nasty chest infection, which turned into life threatening pneumonia. Indeed, one night in between coughing bouts, I actually stopped breathing.

rowena piano

Playing Moonlight Sonata after chemo.

At this point, I also found out that the auto-immune disease was in a serious flare and was attacking my lungs. The Institial Lung Disease had become active and I had marked fibrosis in my lungs. Moreover, the report on my lungs read like the contents of a vacuum cleaner bag…ground glass, honeycomb. I was actually surprised there wasn’t any dog hair in there. Anyway, they started me on chemo (cyclophosphamide) a week before Christmas 2012 and I’ve got to say, I didn’t expect to be alive for Christmas 2017. I am a living, breathing miracle, which has been a comprehensive and intensive team effort.

As you could imagine, pneumonia and chemo weren’t the grand finale I’d planned for the book and the book is still on hold as I wrestle with what it really means to be a survivor, grappling with my numerous battle scars and LIVE on. I don’t merely want to exist.

This isn’t something I think about all the time. However, with the new year, I’ve revisited all of this. I’m still wrestling with THE COUGH, while also trying to get back to some kind of meaningful paid work. The two of them are looking very incompatible at the moment, but surely I can find something?

Pursuing this question further requires me to accept my weaknesses, but also to acknowledge and embrace my strengths. Know that I am not a dud. Rather, I’m human. We all make mistakes and have strengths and weaknesses. Of course, that’s something I would say with conviction to anyone else, but I struggle to find that in myself.

So, I guess this takes me to George Bernard Shaw:

“Life is not meant to be easy, my child but take courage: it can be delightful.”

When you’ve experienced adversity, how have you kept your head above water? Please leave your thoughts in the comments and links through to any posts.

Best wishes,

Rowena

This post was published on Smorgasbord – Variety is the Spice of Life.

The Masterchef & the Rabbit.

Rabbits are usually the target, and not the decoy. However, this was no ordinary Rabbit.

This was Rabbit as in “Rabbit & Julie Goodwin” Star FM’s breakfast radio hosts. A few weeks ago, I was contacted by our local radio station. I was simply told that I’d won a prize and Rabbit would be at my house on Monday morning. Mia on the phone didn’t say much and was very adept at evading questions.

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Naturally, I had to do something for Rabbit’s visit. Create a bit of theatre. On Sunday night, I finally came up with the idea of Mad Hatters Tea Party…an Alice in Wonderland theme. After all, where is White Rabbit? I have quite a lot of Alice in Wonderland paraphernalia and it all came together very well….especially with some home-made, gluten free cupcakes which our daughter decorated. I also tied a scarf to the massive Norfolk Pine Tree in our front yard so they could find our house (as if they couldn‘t spot the crowd in the front yard and the tea party and don’t have GPS.) Well, my daughter and her friend were feeling “bored” and nabbed armfuls of my scarves and tied them to the tree. It looked fantastic, but very out there.

Suddenly, Rabbit and Mia arrived…along with a cameraman. Now, I should warn you that Rabbit knows how to keep a straight face and tell pure porky pies without flinching. Rabbit apologises that Julie couldn’t be there and presents me with a signed cookbook…Julie Goodwin: The Essential Cookbook.

As much as I appreciated the cookbook, I sensed there was more. That something else was up his sleeve. After all, they could’ve posted the book. AND, a radio station wouldn’t film someone who isn’t the author, presenting a book.

Then…  a dashing white mini convertible with “COOKING” on the number plate, pulls into our driveway and out steps Julie Goodwin, Australia’s first Masterchef. She’d arrived at our place with a meal…butter chicken, rice with saffron and we were off to the kitchen to prepare the salad together…and for the cameras.

OMG!!! Obviously, I’ve never been the mild-mannered reporter type, but I was uber-excited. I was so happy, that I all but burst into song. Julie was here!

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Well, you might ask why Julie Goodwin came here. After all, our place is hardly Masterchef Central.

Well, that’s a long story.

As I said, I received a message from the radio station a few weeks ago saying I’d won a prize. I suspected this was in response to a post I’d written after Rabbit and Julie Goodwin hosted the breakfast show on Star FM at our daughter’s school. I’ve been a mad Julie Goodwin fan ever since I first saw her battling it out on Masterchef eight years ago.

When I heard that Julie and Rabbit were going to be at my daughter’s school, I drove the 45 minutes up the freeway along with her cookbook and my heart was almost palpitating. Once I saw her on air, I was absolutely transfixed and I found it so hard to pull myself back and harder still to watch her leave… “Julie! Julie!”

Pathetic, I know! Yet, there was just something about Julie, which made me feel home. There was something about her which calmed a raging sea I didn’t understand. I was having a wonderful day and yet something inside me was drowning. The waves were crashing overhead and yet there were blue skies and things were the best they’d been in a long time. Indeed, I’d even become a believer in miracles.

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My daughter and I with Rabbit and Julie at her school.

Anyway,  when I wrote about meeting Julie, I made a tongue-in-cheek remark about how Julie’s never dropped around here with a meal. Of course, I’d never expected that, but around the time season one of Masterchef went to air, I’d been diagnosed with a life-threatening acute auto-immune disease called dermatomyositis, where your muscles attack themselves causing debilitating weakness. Although I’d improved, I wasn’t out of the woods. Our kids were aged 5 and 3 at the time and with Mummy being an endangered species, it wasn’t uncommon for Church or friends to drop in a meal. It’s what you do.

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Dinner with Julie (she’s the cookbook at the end of the table).

Now, I’ve not only received a meal from Julie. I also have another of her cookbooks and it’s time for me to share the love. Pass it forward…at least to my own family.

Bon Appetit!

xx Rowena

PS You might also enjoy reading Bilbo’s account of events. I must admit he did write quite a lot about himself: The Queen of the Kitchen.

Thou Shalt Get Walking!

After weeks of torrential flooding rain, the damn sun came out today and dried up all my excuses.

That meant, that I finally had to get outside and do “the 20 minute walk”.

Even if you barely know me at all, you’d know that I’m not the sort of person who goes timing their activities without some kind of outside intervention.

Enter the physio.

After two weeks on the “ten minute walk”, I’ve progressed to the “twenty minute walk” and while this should’ve generated that warm glow of achievement, it also pressed the panic button… just a little.

You see, doubling the distance, also meant twice as much opportunity for DISASTER!!

This wasn’t just anxiety speaking either. My tripping and crash-landing abilities are  legendary! Indeed, only two weeks ago, yours truly swan-dived right outside the test centre where my daughter was sitting for the illustrious Selective Schools’ Test. Of all the times to have a fall, this came pretty close to  being the worst. That said, at least I had loads of help getting back up.

So, this is why I was a bit wary of going for a 20 minute walk all by myself, even if it was a beautiful sunny day and the beach was calling. Our local footpaths are so bumpy, cracked and overgrown that they’ve become ridiculously rustic, death traps. You don’t even need to be accident-prone to fall.

However, being accountable for my exercise and needing to tick the all-important box on my exercise plan, magically propelled me out of the couch and onto the footpath.

First, however, I recruited Mummy’s Little Helper to act as walk buddy. This was not only so she could not only call 000 in the event of emergency, but also so we could also take the dogs for a walk. Miss took Lady, while I took a much stronger Bilbo and off we went….Miss telling Lady to stop sniffing and keep walking. Their pace helped to propel Bilbo along, although Miss did observe him trying to sniff every single tree and post along the way!

That reminded me of a couple of old dog jokes:

What’s the definition of torture?

A dog in a desert with no trees.

What’s the definition of confusion?

A dog in a desert with two trees.

However, Bilbo didn’t have the luxury of any lingering sniffs. That’s because he too was under the physiotherapist’s regime. The goal, or should I say the prescription, was 20 minutes of brisk walking, which is going to boost your heart rate and build a sweat. Obviously, this is not  a leisurely stroll smelling the roses…or anything else!

Bilbo staring out to sea

Bilbo…  who is either admiring the view or contemplating why he can’t smell the roses anymore.

By the way, the idea behind the 20 minute walk is to do a 20 minute walk…no more, no less. It aims to create frequency by surreptitiously sneaking into your daily routine, so you almost don’t realise it’s there. As if!

So what’s motivating my walks:

  • Increasingly the number of steps and kilometres on the health app on my phone. I have found this very encouraging and motivating….both when the results are positive and negative. You find out what you’re capable of and when your steps are low for the day, it encourages you to get back out there. Keep moving. Worth noting, though, that you do need to walk around with your phone to get accurate results. If you feel like cheating, you could also attach the phone to the dog, but you’d only be cheating yourself.
  • Increased fitness and strength leading to greater endurance.
  • Exercise helps prevent chest infections and improves lung health, which is critical for me!
  • Exercise & sunshine boosts your endorphins boosting your mood.
  • Enjoying the beautiful outdoors and spreading my wings by getting out of the house.
  • Running into friends on my walks.
  • Possibility of losing weight.

Before I head off, I’d like to exercise my bragging rights. Although I was feeling that a 20 minute walk was going to do me in today, by the time we reached the beach, we felt like talking the dogs down to the off-leash, dog section of the beach. I lost track of how long we walked for  but it was probably more like an hour. We ended up walking for 3.5km and reached 5,600 steps. This was a vast improvement on 824 steps on Friday and 2,650 steps on Thursday.

So, I deserve a huge pat on the back and my daughter gets a huge thanks…both from me and the dogs!

I thought you might find my walking progress encouraging and that if you’re having trouble getting started or sticking with it, that you can do it. We can do it. Please keep me posted on your progress.

xx Rowena

The Itis…Monster Flash Fiction.

Neither awake nor asleep, she could hear his gravelly voice huffing in her ear: “I’m going to get you!”

She knew that voice too well and flinched. His grotesque form leaning over her bed, she could almost feel his fingertips touching her skin. With the stench of rotting flesh, this monstrous beast came from the very pits of hell.

Trembling, she shrank into a very tight ball.

No! She was still determined to get the bastard. Wring his neck. Finally, destroy the beast.

But there was nothing there.

No monster to slay with her almighty sword.

Yet, there was!

Rowena Newton March 13, 2016.

March 9, 2016 prompt: In 99 words (no more, no less) write a monster story. You can pick any perspective, even that of the monster. It can be literal or symbolic; it can be heroic or realistic. Think about the shifting roles of what is a monster and who is a monster-slayer. Consider how easily we give the label to others or to fears we can’t name.

 ……

itis: Suffix meaning inflammation.

On the 22nd August, 2007, I was diagnosed with a severe, life-threatening auto-immune disease called dermatomyositis. You can just imagine being diagnosed with something like that. The word itself is bad enough and it took me at least a month to pronounce it let alone spell it. However, the disease itself was far worse. It took 18 months to correctly diagnose after boarding a horrifically intense, medical merry-go-round.

It is hard to believe that someone who is still walking around and indeed still breathing, could have been so debilitated. Most of my muscles had wasted away and I needed help getting dressed and even pulling my blankets over me at night. Yet, I was also mother full time to a toddler and a baby not to mention the crazy afore mentioned Old English Sheepdog, who morphed into an energetic Border Collie pup somewhere along the way.

Newton Family & bilbo

A family photo with Bilbo as a pup Mother’s Day, 2007. This was 3 months before my diagnosis and despite how I appear in the photo, I was already very ill.

Six weeks before my diagnosis, I tripped over at home and much to my horror couldn’t get up at all. This wasn’t due to injury. Rather, I didn’t have the muscles left to get myself up. The disease had gobbled them up. I rang my husband at work, over two hour’s away. We didn’t even discuss getting an ambulance. He suggested using a chair to lever myself up and when that worked, I simply got on with it. That said, we gave a friend our front door key and tried to spend us much time as we could with my Mum. Our home became the most terrifying place in the world for me.

Dermatomyositis can be difficult to diagnose and yet I had these distinctive tell tale red stripes across my knuckles, which are known as “rainbow hands”. Early on, I received a false negative on a blood test and once you eliminate what you’ve got, you’re in considerable strife. My uncle who is a dermatologist, ended up diagnosing it at my cousin’s wedding. I was obviously severely ill and while I was sort of thrilled at the instant weight loss, I suspected something sinister. Just getting in and out of chairs was murder. Even in that dark, ambient lighting my uncle recognised those rainbow stripes on my hands and was on the phone the next day. Three days later he had results and an urgent appointment with the Professor of Rheumatology at Royal North Shore Hospital in Sydney. He told me to take my toothbrush as I wouldn’t be coming home. Two and a half weeks later, I left hospital in an ambulance bound for rehab for 6 weeks.

The kids went to stay with my parents. Mister was 3.5 and Miss was only 18 months and still breastfeeding.

This wasn’t the case of the kids having a holiday with their grandparents. It was incredibly traumatic and even though I knew I was very ill at the time, I was later told that I didn’t appreciate just how sick I was and that they’ve lost patients at that point before. The long delay in my diagnosis had almost been catastrophic.

I still remember Mister asking me: “Mummy better?” with his big brown eyes and blond curls and saying nothing. We didn’t know. Our son’s development froze for a good six months after that. He stopped doing a lot of things he’d been able to do and regressed. He also got very angry with me. He wanted his old Mum back and how was he supposed to understand and accept what we couldn’t?!!

Before this all came about, when I used to think of monsters, I used to think of baddies lurking in dark alleyways or public toilets grabbing me by the throat. I never thought that the greatest, most terrifying monster I would ever face, would be inside myself. Indeed, the very problem with any auto-immune disease is that it’s your body attacking itself.

The monster is inside you.

Now, that does make things tricky, doesn’t it?!!

You are not your disease and yet it lives inside your body and your cells start attacking each other, themselves. Yet, it’s not you…whatever!!

That’s starting to sound like one of those brain busting conundrums.

My brain hurts. How about yours?

Time for a good old-fashioned cup of tea!

xx Rowena

 

The Masked Intruder.

You creep…
a foul, odorous gas
permeating
my each and every cell,
even creeping in between
the fibres of my bones.
Splitting my very atoms
to build your sovereign shrine
within each cell…
a nest to lay your poisonous eggs.

Catastrophization turned real,
blasted invader!
You can’t even leave
the smallest little part of me
alone.
Penetrating deep within my DNA,
you lurk beyond the microscope.
No one else can see you
but I know that you’re there.
A Machiavellian villain
purring like a cat
toying with its prey,
you enjoy my pain
and laugh.
You bastard!

What am I supposed
to call you?
How can I figure out
quite who or what you are?
You might have a name.
Be something out of a textbook.
Of course, Google knows
exactly who you are.
Yet, even they can’t explain
why you came.
Or,why you came to me.
After all,
why didn’t you go next door?
Find someone else to be
your magnificent host?
I’m not going to blame
my God of love
for all your hate…
my pain.

Yet,
the earth has turned
round and round
and I still don’t know
why you came.
I didn’t offer you tea,
let alone cake.
Yet, you stayed.
Now, you are I are bound
together as one.
I am the bride.
You are the groom.
A forced union,
I had no say in it.
No say in it at all.
I never vowed a thing.

So,
how can I break through
the chains which bind us?
Bind us together as one.
Until death do us part.
There is no divorce.
No escape.
We are fused.
Melted together.
This is forever.

Or,
So I thought.

Suddenly,
You were gone.

Your ring’s still on my finger
but your hands are no longer
wrapped around my throat,
squeezing out my very last breath
until my face turns blue, corpse-grey
while you somehow kept me alive
but only just.

Dare I ask you why you left?
Or, if you’ll return?
No. There’s no time to stop,
reflect or introspect.
I’ve changed all the locks.
Carpe diem seize the day.
I’ve finally reached
the other side of the rainbow,
basking alone in the sun
where even your shadow is gone.

I live inspite of you
but maybe even
because.

Rowena Newton
3rd February, 2016.

Written on the train to and from a dentist appointment at Kirribilli. I was fuming because it seemed that the dermatomysitis had affected my teeth. Not hugely but was playing silly buggers. Grrr!!! It set off yet another round of cannonfire.