Tag Archives: autoimmune disease

An Empty Harbour – Sydney.

Yesterday, my husband and I went down to Kirribilli for lunch after the first appointment I’ve had with one of my medical specialists since Covid started ravaging our world. I usually go on an outing after these appointments as a much needed pick-me-up, and often end up at Kirribilli by the harbour, where I might catch a ferry into the city (and by city I mean Sydney and yes I’m coming to you from Australia). The other place I end up is Surry Hills, which is also characterised by the terrace house, but is more inner city than harbour if that makes any sense.

There’s a lot to dazzle you in Kirribilli. Obviously, you need to go no further than the Sydney Harbour Bridge whose Northern arch is parked right in its front yard. Across the harbour, the Sydney Opera House is smack bang in your face. You can’t miss it. Although I’m Sydney born and bred, I never tire of these monumental architectural feats. Yet, there’s still the beauty of the harbour itself, which is usually a hive of activity.

Selfie.

So, I was rather taken aback when I was down there yesterday, and the harbour looked “empty”. There was water without boats. No cruise ships were parked across at the International Terminal. Of course not! Could you imagine the huge public outcry??!!! Yet, only twelve months ago these cruise ships were simply part of the scenery. Of course, I photographed them whenever I was in town, because they’re still a novelty to me and they’re absolutely massive, and almost unbelievably big, glamorous and totally dominated the waterfront. However, they’re now gone, and I wonder if these super-spreaders of disease will ever be back, or at least in quite the same way.

However, this emptiness isn’t just confined to the water either. The harbour foreshore is also conspicuously empty. There are no armies of tourist ants marching around the usual suspects. Indeed, in hindsight, it sinks in that we were alone and didn’t see anyone else posing in front of anything. The SLRs, phones and selfie sticks were all gone along with all the people. Not that Sydney’s become a ghost town yet, but she’s not what she was.

How you feel about that, probably depends on your perspective. Less humans is always a good thing for the environment. We are a destructive breed. However, the economics must be tough. I don’t know to be really honest. We live in a protective bubble both thanks to me needing to social distance and my husband needing to work from home to protect me, but also because he has a good job, and he managed to survive the extensive staff cut backs at the university.

There’s been much to lament about covid, but environmentally speaking, it has eased the pressure a little, and perhaps also reminded us of what we’re doing to the planet. That maybe we don’t need to go, go, go quite so much and that we cause pause, slow down and connect more with each other, and it’s not the end of the world.

Geoff in shadow and a glimpse of Kirribilli. This is the chopped off version of the covid beard.

Obviously, our lessons here are quite different to places overseas where so many lives have been lost, and there is so much grief. It’s hard for some of us to grapple with that, but we also struggle with the effects of isolation, or being jammed in together with no escape. I think for many travel offers something to truly look forward to, and also allows many to keep in touch with close family and friends. So, the very tight travel restrictions are really being felt. Last year, our son was booked to go on a six week history tour of Europe, and instead he ended up in lock down with Mum, Dad and his sister and doing school at home. Not only that. We were also living in sheer terror of seeing another human being in case they might secretly, unknowingly have the virus, and particularly that I of reduced immunity and shitty lungs would die. The fact that storm has seemingly passed, doesn’t negate what it was like to live through it, and that until we are vaccinated, the risk, however minute, is still there.

Florist window in Kirribilli.

We wait.

Well, some of us wait.

Others are invincible. We’ve had over a month since there’s been any community transmission here in NSW. It’s very tempting to throw caution to the wind, and get out there and party.

However, our defences at this point are not infallible. One slip up in hotel quarantine, and it’s out. Moreover, we won’t know where it is until someone symptomatic is infected. Yet, does this justify such caution? So many restrictions?

Here we were late last year trying glasses on over our masks.

Given our current status, it’s not something to lose sleep over, but I’m still largely social distancing, trying to remember to wear my mask in high thoroughfare areas, washing my hands more than I’ve done in the last ten years, and won’t set foot on a train. If I’m in a small group, I’ll give my friends a hug, but I don’t shake hands. I think of it as insurance. Moreover, I don’t blow the sacrifices I’ve made through the last year, by not seeing this through to the end.

Meanwhile, close friends of mine have barely made any changes. Life’s gone on. However, we respect each other’s decisions. Well, most of the time. I do like to see people comply with the government’s restrictions, particularly as organizations. Do the right thing. After all, to use a phrase borrowed from World War I, we need to do “our bit”. Moreover, for those of us who are more susceptible, we need to go the extra mile which might seem unnecessary, but for us it might not matter. For us, the risks are still too high.

Loved being able to have lunch in a cafe in Kirribilli, and that the table was cleaned when we arrived and great precautions were maintained.

Meanwhile, Geoff and I enjoyed a wonderful lunch in Kirribilli and soaking up those magnificent harbour views on a perfect, sunny Sydney day.

How is covid impacting you where you live? What are you going through? I would love to hear your stories and hope you and yours are keeping well and safe.

Love,

Rowena

PS The vaccine roll out has been slow here in Australia. Given the low incidence rates, there understandably wasn’t the urgency and it was good to wait and see how it went overseas first. However, now that I’m hearing about friends with my auto-immune disease being vaccinated overseas and responding, I’m keen to line up.

Vaccination began on the 22nd February, and we’ve barely scratched the surface of the first category, which includes frontline medical and nursing home staff. he urgency wasn’t here and they’re just starting to vaccinate health workers and frontline staff. These people fall into category 1a, where I’m in category 1b. Although the TV is looking promising, it could well be more than a month before I get my first jab. Again, I’ve got to talk myself through the anxiety and be thankful the vaccine has been developed so quickly or at all. I’m not really suffering or doing it tough, but who isn’t hoping the mass vaccination is going to help restore some real sense of normality. Who wants to live in covidland, even our covidland of very low incidence for any longer than we have to? No! Of course not. We all long to escape. Go back and just enjoy walking down the street, stopping off at a cafe or browsing through a shop without thinking, logging in, wearing a mask and being able to shake hands with a mate.

“The Dog House”…Our Response to the Coronavirus.

Today, my husband and I went and bought a pop-top caravan with a longer term vision of road trips. However, the reality is that we’ve bought the caravan to protect me from catching the coronavirus from the family. We bought something small and cheap which will fit in the backyard alongside the boats, and it needs a lot of work. However, at the end of the day, we’ll have something which is our own and almost becomes a member of the family. We’ve decided to call it: “The Dog House”. That’s not only because it will be parked out in the backyard with the dogs. As you may be aware, “being in the dog house” is when a bloke is in trouble with his wife and he might be sleeping on the couch but the saying is that “he’s out in the dog house”.

For those of you who have been following Beyond the Flow for some time, you’ll be aware that I live with a severe auto-immune disease, Dermatomyositits  which attacks my muscles and that as a complication of this, I’ve developed Insitital Lung disease with fibrosis in my lungs. I live with 50% lung capacity on a good day, and I also know what it’s like trying to get through a really bad day. A few years ago, I caught pneumonia and stopped breathing for a split-second. I was coughing and coughing and coughing and suddenly there was nothing. Fortunately, something popped and cleared my lungs and I was still alive. It took months for me to get out of danger and my lung specialist bluntly told me that if I caught anything else, I’d be finished. This pneumonia also triggered a flare of my auto-immune disease. So, I also ended up having chemo to halt that. So, you see, I have a pretty good idea of what it could be like to catch the coronavirus and what it would mean for me and our family…or the extended community. This is not something to treat with our usual Australian indifference. The “she’ll be right mate” attitude. Some of us will be right. Some us us will still be here but with scarred and damaged lungs, and others will be gone, especially if we as a community don’t take transmission seriously and self-isolate as much as we can. That said, I haven’t completely quarantined myself yet. Not knowing how long this thing could hang around for, I am being very selective.

I also wanted to share a Facebook post from one of my dear Muscular Dystrophy friends, Cassie who is in her 20s. I won’t say much about her except to say she’s stretched and extended herself well beyond her disability and conquered so many hurdles. Then, something like this virus comes along, and it isn’t about fear or anxiety. The threat is real. Anyway, here’s what she had to say:

“I haven’t said much about this covid-19 but here is my piece to everyone that may be belittling it or panic buying and hoarding.
This is more than a common cold. sure some minor corona virus’ cause the common cold but this is worst than the flu. Those people panicking, filling up hospital beds and hoarding supplies, you are being totally unfair on everyone else who still needs those products too.
So many people I know, including myself are vulnerable to death from this virus. Surely by knowing me you would realise our lives are worth more than such flippant and infuriating (to me) statements that ”it is just like a common cold” or ”it won’t effect me”. By saying it is not that big of a deal stops people taking infection control seriously resulting in people like me dying. ask yourself how many people do you know with emphysema, copd, asthma, heart disease, weakens immune systems, cystic fibrosis, muscular dystrophy and many other conditions? how would you feel if you potentially carried covid-19 to then they died? just because ”the old and weak” as society deems us often die with any spreadable disease doesn’t mean we shouldn’t be taking this seriously and taking measures to protect EVERYONE. MY LIFE MATTERS TOO AND I DON’T WANT TO DIE!!!”

You’d have to be made of stone if these words didn’t strike you like an arrow through the heart. It’s also a wake-up call to people who aren’t taking this seriously. Do you want to be the one who passes the virus onto someone else who then goes on to die? If we’ve taken the best precautions, then we don’t have a case to answer for. However, if we’ve stuck our head in the sand, then we’re accountable. There have been pure bred idiots who have gone to the supermarket on the way home after being told to self-isolate because they’ve been exposed to the virus. OMG!

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Here I am helping my daughter with her audition for the Andrew Lloyd Webber production of the Sound of Music in Sydney. I had a nasty chest infection and was on the nebuliser but did manage to go with her to the audition.

Anyway, I wanted to share this this with you. Let you inside the world Cassie and I share with so many people who have lung and other medical conditions so you can walk in our shoes for a bit. Breathing in through our lungs, and know what it means to struggle for every breath. I would do anything to stop someone from getting this thing. Like Cassie, I am also determined to stay alive. This should be a no-brainer, but more caution is needed.

Jonathon mask

My son and I making Irish Stew when he had a cold quite a few years ago now.

Please be cautious. Please be kind.

Best wishes,

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.

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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.

 

Coffee By the Sea

Welcome to another Weekend Coffee Share chez moi. If you’re not careful, you’ll end up with a tail in your face or a dog on your lap, especially if you’re joining me for Tim Tams. The doggies can’t seem to read “Not suitable for dogs” on the side of the packet. Don’t worry. I don’t feed my dogs chocolate, although there have been times when their thieving paws have helped themselves. “Go to jail. Go directly to jail puppy dogs!”

While it might seem like I’ve had a busy week, to be perfectly honest, I’ve been a bit of a Homer Simpson glued to my armchair as the alternating heat, rain and chill took its toll. Need to muster up some energy to finish off my son’s room. I emptied out more cupboards while he’s off at my parents’ place and lost my mojo somewhere along the way. Wasn’t such a good idea after all!

Jonathon shark Umina Beach

Monday afternoon, some sort of crane must’ve plucked my son and I out of our respective chairs and plonked us down at the beach with the dogs. Almost straight away, I spotted a fisherman doing battle with a mighty fish and was spellbound. I’ve since realised that the ocean is one of the last unknowns on this planet. After all, Google Earth must have documented nearly each square inch of land. Hidden cameras seem to capture our each and every move. However, who knows what’s on the end of that fishing rod? Who knows what’s swimming around your feet while you’re hanging out at the beach? Yes, the ocean is one of the world’s last mysteries… the last frontier.

I manage to inject a fair amount of suspense into The Boy & the Shark .

For better or worse, I found out we had sharks at our beach. They were baby sharks but who’s to say the rest of the family wasn’t out there as well?

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Captain! oh my Captain!

Tuesday, we went sailing with my Dad at Palm Beach. We motored down to Newport and then sailed passed Scotland Island and then motored back. Although I barely know port from starboard and am more likely to get hit in the head by the boom, I do make good ballast and I did have a go steering. Overall, I found the whole sailing experience very liberating and almost an out-of-body experience. There was such freedom out there and so much space.  Just a vast expanse of water, sky and the sunlight sparkling over the water like a diamond carpet.

Shark Smile

Not sure whether it was Wednesday or Thursday my time but I participated in Trent’s Weekly Smile Share. I must admit that I was a little cheeky because I posted a shark smile. While my son was poking and prodding the gasping shark on the beach, I noticed that the underside of the shark’s mouth either resembles a frown or a smile depending on the angle. It was at this point, too, I must admit, that I also realised just how much blogging has taken over my life. I’m an addict.

Although the rest of the week has been fairly quiet, I have participated in 1000 Voices for Compassion’s monthly blogshare. This month’s theme was forgiveness. I decided to write about the difficulties of forgiving Dermatomyositis, the severe auto-immune disease which remains a formidable foe.

Forgiveness turned out to be an incredible theme. Most of us live with something we’d love to exterminate, delete, replay and it is a real struggle to know quite how to deal with all that angst without imploding. I read some incredible stories where writers have ripped open their hearts, souls and minds and let me in. Shared those very painful moments in slow motion frame-by-frame. Sharing such intimate details, naturally brings closeness, intimacy, trust. After all, if you don’t truly know someone, how can you call them friend?

I really recommend you read as many of these posts as you can.

The rest of the week has been a blur.

All I know is that I only have 5 sleeps until the new school year begins. I am hoping that all my preparations haven’t been in vain but we could well see the birth of Frankenstein. Both kids are starting at new schools so we’ve been organising uniforms right down to checking the colour of their socks. Of course, this is all been a conscious process which is such a contrast to arriving back from holidays the night before and stepping right back into familiar shoes. Hey, even the car knew the way! I tell myself I can do it and Geoff will still be on holidays and yet I still feel like I’m about to walk the plank and did I mention something previously about SHARKS??

Deep breath Ro! Stop catastrophizing!

Does anyone else argue with themselves like this?

By the way, sign up starts for the Blogging A-Z April Challenge on Monday 25th January. I strongly recommend taking up the challenge. I participated for the first time last year and loved it but will be doing things differently this year. Last year, I wrote my posts every day and didn’t really have a tight theme. It was something loosely based on my world. While it was fun, trying to write and read so many posts really took over and the whole thing became quite intense. This year, I’m aiming to have all my posts written well ahead of time. Of course, for most of us, there are letters where you have too many options and there are a couple letters which cause such angst but I’m on my way.

Are you planning to sign up? You can sign up here.

Finally, it’s Sunday and we’ve finally returned from picking up the kids from my parents’. Had a great afternoon there where I inevitably ended up in the pool. I can’t believe how quickly I’ve turned into an old lady and all that’s missing is the swimmers with the skirt. Indeed, that would be more flattering. It was after dinner by the time I finally got into the pool and when it came to getting wet and even dipping my lower half in the water, it was painful and took forever.

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Not getting my face wet!

Eventually, finally…I did a lap of breaststroke which must have looked more like dog paddle as I obstinately stuck my head out of the water like a little kid. “Don’t like getting my face wet!!” I tell you. Sometimes, I wonder about this other half. She is such a chicken while the other side throws caution to the wind.

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Swimming with the kids was really good for me because the water enabled me to be much more physical than I am on land.I was even able to give both kids piggybacks because the water takes their weight. I can’t tell you what this meant to me and to them to be able to play together. For Mummy to be awake. Involved. Not having a nap. Not too unstable on her feet to have a go. Mum could be Mum.

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Firing the canon…Photo taken by Geoff (well done!)

Tomorrow, Mum is off to the hairdresser’s at long last. I won’t know myself! Yippee!

By the way, Tuesday 26th January is Australia Day, known by at least some Aboriginal people as Invasion Day. It celebrates or commiserates the landing of the First Fleet at Botany Bay in 1788. That’s 228 years ago. Mind you, this 228 years is just the tip of Australia’s history. It is an ancient land.

We’re not going to be that patriotic this Australia Day. We’re planning to finally see Star Wars 7 and we’re dreading another night consoling a dribbling, shaking mutt as the fireworks go off. However, you can read about the Bicentenary here

Speaking about the dogs, a bit of forgiveness has been required in Bilbo’s court over the last couple of days. Miss has been away for 2 weeks and Mister a week and he’d had enough. He’s been getting quite stressed. Fortunately, they’re back so hope he settles down. By the way, they were both very exuberant when they arrived home today and greeted them with much tail-wagging and paws…no cold shoulders this time!