Category Archives: Chronic Illness

Tough Questions About Self-Isolation.

There’s no doubt that here in Australia we’re poised on the edge of a precipice. It’s now a question of how long the corona-crisis will last, and how we can best protect ourselves and our communities.When it comes to this, the anticipated duration makes quite a difference, because you prepare for a marathon in quite a different way than a sprint. Unfortunately, it looks like we’re in for a marathon. So, perhaps isolation in its severest form, is something only to be pursued when there is no choice.

The message has been very clear that social distancing is the obvious response to the Coronavirus. Moreover, it’s a no-brainer for people like me with rotten lungs and compromised immunity. However, what that self-isolation entails is somewhat semantic and more a matter of isolating from people. In other words, you don’t necessarily need to stay locked up in your box at home to be isolated. You could be on a boat. Walk well away from people or go and camp out in the bush. Indeed, I saw quite a few different ways of being outside yet self-isolating while I was down at the beach.

 

So, although I’m largely self-isolated at home, the main reason I decided to go for a walk along the beach was to exercise my lungs and try to build up some strength and resilience. My lungs are quite weak at the moment just from my regular lung condition, but they do improve with exercise which clears them out a bit (even though it makes me cough like a trooper). After all, I need to be in the very best health I can muster in case I catch this thing and being under the weather beforehand, I’m playing a losing battle.

Fortunately, our local beach, especially late in the day, is relatively unoccupied. This is quite a contrast to Sydney’s Bondi Beach which was packed on Friday and Saturday with idiot Australians just begging to catch the damn thing. Indeed, as you may have heard, Bondi Beach was shut down on Saturday as a preventative measure. If people aren’t going to think, then law enforcement needs to do the thinking for them.

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Even parts of our beach were looking over-populated. I walked the other direction which was sparsely occupied. 

At our beach today, there were still a few people down between the flags. So, I drove down to a more remote access point where I could stay within my protective bubble of space. No patting dogs or talking to dog walkers and thank goodness I only saw one friend a few metres away who well understood that I could only wave and keep moving. This was all very out of character for me, because I’m usually an absolute social butterfly given half a chance. I had to hide myself away.

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Idyllic and away from the crowds.

I was pleased I went, and immediately felt the psychological benefits. While being locked away inside much of the last couple of weeks has felt okay when I’m there, I felt so liberated to be at the beach again and out of the house.  Indeed, basking in the sunshine, inhaling the sea air and watching the ocean, I felt a surprising sense of exhilaration and well-being. A certainty that this was good for me and to keep looking for safe ways of getting outside, especially at the moment. We live a bit outside of Sydney and while this provides no certainties, it does provide more secluded exit points.

At the same time, I understand that leaving the house at all, goes against the strictest interpretation of advice.  However, if you’re only in self-imposed isolation, there’s no reason why you can’t go bush. You just need to hope you don’t start a movement.  After all, it’s people and public places which are the problem, not the trees.

Of course, once the virus spreads further, I will be bunkered down like a soldier in their trench, except I won’t be throwing any missiles, pineapple bombs or other incendaries over at the enemy. I certainly won’t be hopping over my trench pursuing it with my rifle and bayonet drawn either (been doing too much WWI research). Rather, my strategy is focused on withdrawal and getting myself as fit as possible by eating plenty of fresh fruit and veg, taking my vitamins and getting what exercise I can.

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Family photo taken 18 months ago.

Unfortunately, my greatest threat is my family. While my husband is now working from home, my son has been home with a cold and our daughter is still going to school and seeing a few trusted friends. She has been self-isolating from the family for some time. So, unless whatever she has can escape under her door like some bubonic slime, we’ll be safe. I’m sure if you have teens you’ll know exactly what I mean. Anyway, as you might have read in my previous post, that’s why we bought a caravan so we can isolate within our family.

I don’t know what the way forward will look like, but for the time being it looks like we need to pull together by staying apart.

How are you and your communities getting on? I’d love to hear from you in the comments.

Best wishes and blessings for protection,

Rowena

 

Watch Out For the Triantiwontigongolope!!

If you thought that the Coronavirus was something to watch out for, you’d better brace yourself because if the Triantiwontigongolope gets out of Australia and takes on the world with equal force, they’ll be nothing left. A close relative of the vicious Dropbear (at least in terms of Aussie folklore), this insect is truly something to watch out for. Well, at least, that’s according to poet CJ Dennis who penned this poem back in the 1920s.

I remember hearing this poem when I was about 10 ears old and with its rollicky rhythm and great humour, I absolutely loved it and I thought you would too…especially at the moment when other horrors have us in various stages of isolation or taking our chances firmly believing in the great Aussie spirit (and no doubt you have your equivalent wherever you live): “she’ll be right mate!”

So, here goes:

The Triantiwontigongolope

There’s a very funny insect that you do not often spy,

And it isn’t quite a spider, and it isn’t quite a fly;

It is something like a beetle, and a little like a bee,

But nothing like a wooly grub that climbs upon a tree.

Its name is quite a hard one, but you’ll learn it soon, I hope.

So try:

Tri-

Tri-anti-wonti-

Triantiwontigongolope.

 

It lives on weeds and wattle-gum, and has a funny face;

Its appetite is hearty, and its manners a disgrace.

When first you come upon it, it will give you quite a scare,

But when you look for it again, you find it isn’t there.

And unless you call it softly it will stay away and mope.

So try:

Tri-

Tri-anti-wonti-

Triantiwontigongolope.

 

It trembles if you tickle it or tread upon its toes;

It is not an early riser, but it has a snubbish nose.

If you snear at it, or scold it, it will scuttle off in shame,

But it purrs and purrs quite proudly if you call it by its name,

And offer it some sandwiches of sealing-wax and soap.

So try:

Tri-

Tri-anti-wonti-

Triantiwontigongolope .

 

But of course you haven’t seen it; and I truthfully confess

That I haven’t seen it either, and I don’t know its address.

For there isn’t such an insect, though there really might have been

If the trees and grass were purple, and the sky was bottle green.

It’s just a little joke of mine, which you’ll forgive, I hope.

Oh, try!

Tri-

Tri-anti-wonti-

Triantiwontigongolope.

 

If you’d like to read more about CJ Dennis, please click here

Well, I hope that’s given you a bit of a laugh and I hope you’re okay.

If you have something funny to share, please leave a link in the comments.

Best wishes,

Rowena

“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.

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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 Cranky Minion in Corona Quarantine…

Minions are beyond my usual scope. However, today I rescued this character from “quarantine” at the local opportunity shop and brought him home where he took over my chair and our toilet paper supplies. Don’t you think this face absolutely captures the dark side of the Coronavirus? He’s even wearing prison garb.

How is where you are living being impacted by the coronavirus? Is it affecting you personally?

It’s something we’re taking seriously at our place. I have an auto-immune disease called dermatomysitis and a complication of this is Institial Lung Disease. I have fibrosis in my lungs and my lung scans read like the contents of a vacuum cleaner. My health varies quite significantly and I can be pretty well and seemingly almost “normal”, to being very unwell and needing hospitalisation, which we’ve avoided before but won’t be under the current situation.

The difficult thing for all of us, but particularly those of us in a high risk category, is when to self-isolate. How long will it last? If I will be needing to isolate for a long period of time, I’d rather not isolate too soon. After all, there’s a slight risk of exposure atm where we live. It isn’t a dire necessity. However, I’m pretty sure it’s coming.

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So, in the meantime, I’ve thrown a bit of humour at the situation. Had a laugh. Been creative.  After all, what’s the alternative? Getting grumpy and wiping out your opponents at the supermarket? It’s hard to be positive under these circumstances, especially when your life or income are imminently at stake. However, isolation in 2020 is not as painful as it used to be. We only need to jump onto our computers to connect all around the world, or even locally if we’re in enforced isolation. It might not be the same as face-to-face and as an extrovert who loves being with people and misses my friends, I feel it. However, it is something I’ve been doing for around 4 weeks or so each flu season and it hasn’t killed me yet. On the other hand, a bout of pneumonia came very close and it took a long time to get back on my feet and that could also account for the fibrosis in my lungs.

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Most importantly, doesn’t let it get on top of you, and if you’re finding it getting too much, please speak to someone. A trouble shared, is a problem halved.

Best wishes,

Rowena

A Short Victory…Friday Fictioneers.

All James ever wanted was to eat a bowl of ice cream. However, James was severely lactose intolerant and ice cream was forbidden. Now a teenager, he was sick of everyone asking why he he had to have soy milk. Why can’t you have ice cream? What’s wrong with you? To compound his troubles, his mother hovered over him like a hawk. However, she wasn’t going to be at camp, and James had forged her signature on the medical forms. Finally, James indulged in his very first bowl of ice cream. All good until he got stuck on the bus.

….

This has been another contribution to Friday Fictioneers hosted by Rochelle Wishoff Fields. This week’s PHOTO PROMPT © Na’ama Yehuda.

Best wishes,

Rowena

Not Quite A Perfect Father’s Day…

A picture tells a thousand words, but it can also tell a thousand lies. After all, how many of us stick those perfect-looking family photos up on our blogs and Facebook projecting this idyllic life out to all and sundry? Most of us do it unwittingly, simply sharing the moment. However, how many of us are brave enough to tell the truth? Admit we didn’t have a perfect day?

However, to be perfectly honest with you, I don’t believe online is the place to broadcast the truth either. Indeed, my grandmother who had quite a lot of wisdom stashed under the lid, used to say that you never run down your family to other people. While this can lead to the stiff upper lip and a swag of behaviors we’ve tried to overcome in subsequent generations, it also shows respect and allows family members to have their off days without fearing their dirty laundry will be aired in public and they need to hide themselves away.

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However, I’m also mindful that it doesn’t take much to project this image of the perfect, happy family especially if you’re still married to your original spouse and your kids scrub up alright. Indeed, without you even knowing it, you could even become a role model. That’s all well and good if you feel you deserve it. However, a lot goes on behind closed doors. Too much at times and you just can’t spill the beans and get it off your chest because it isn’t your story to tell. Or, as I said, you don’t want to broadcast what was really a blip on the radar…a bad day.

It was much easier to do that when the kids were small. You could share at playgroup about your toddler throwing a tantrum in the supermarket and exchange notes. It feels like more of a betrayal when you spill the beans on your teen. That you need to adhere to the code of silence. This is possibly quite different to when I was a teen and my mother played bridge and tennis with her friends. She was pretty discreet and I can’t imagine her disclosing any of our antics. Indeed, she is known to be very good with secrets…watertight. She doesn’t leak. Besides, I think she was inclined to hold back and keep our family’s business to herself. Indeed, I remember going to stay with her parents being given a list of things not to tell my grandparents for a swag of reasons. However, my grandmother knew I was the weakest link and most of the time I didn’t even need to say a word anyway. She already knew.

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Anyway, this Father’s Day was never going to be perfect. By that, I mean giving my husband breakfast in bed, opening presents and for us all going off to Church together. They always have something special at Church and a photo booth, which is lots of fun if your Father’s Day is shaping up alright, but salt in the wound if it’s not. However, only Geoff made it to Church today. I’m still getting over a virus and am taking things slow. Our daughter was off to dance rehearsals for Swan Lake and the curtain opens in only three weeks. So, she was gone for most of the day. Meanwhile, our son couldn’t sleep and didn’t get there either. It wasn’t a great show of family solidarity for Father’s Day and I just couldn’t make it happen either, which I probably would’ve done if I was feeling better.

However, despite a day which was teetering along like an apprentice  tightrope walker teetering back and forward from the brink, I tenaciously clung to my plans to cook a special baked family dinner and even a family specialty for dessert…my mum’s sponge cake topped with luscious passion fruit icing and dollops of cream. It was quite an effort cleaning all the paraphernalia and vitally important detritus off the kitchen table and I can’t remember the last time we actually set the table and had a more formal dinner.

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The Family Sponge Cake (oops I was struggling to blend the butter into the icing but it tasted great).

I don’t know if good food is a way to the heart, a way of helping people to bond and connect and for some of the walls to come down. However, it seemed to do the trick. Our daughter said the potatoes were the best I’d ever made, which is high praise coming from her as she eats like a sparrow. Our son wasn’t too hungry and was feeling tired and went off to bed without even trying the cake. However, he did start to perk up a bit.

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Indeed, they all did after I produced a big photo album and they started looking at old photos of Geoff’s Mum and Dad and the extended family. This was quite intentional on my part because Father’s Day is a hard day for my husband. His father died when he was around 16 just before Father’s Day 36 years ago. He didn’t get the chance to get to know his father as an adult. Obviously, the kids and I have never met him and there is quite an absence there. We don’t have a lot of stories and only a handful of photographs. So, it was really good to see Geoff and the kids pouring over these photographs and he could talk the kids through them. Our kids are a lot younger than their cousins so it was interesting for them to see them when they were their age. Sometimes, I must admit that it feels like our family missed the boat. We just weren’t there.

Meanwhile, there’s my Dad. We usually catch up with my Dad on  Father’s Day every year, although there are some years we celebrate on a different day because plans simply don’t come together, which is what happened this year. Father’s Day is held on the first Sunday in September here in Australia, and with the first Sunday falling on the 1st, it caught us off-guard. We didn’t have anything planned.

Dad didn’t mind. He was feeling exhausted as well and was happy to have a quiet day. We all seem to be getting over the Winter colds, which were compounded by heavy rain and winds during the week, which only reinforced our lethargy.

So, it wasn’t a perfect day. However, it did remind me to hang in there, even when things are far from perfect, and keep beavering away towards building connection, bridging gaps, misunderstandings and grumpiness. Never give up. If you think that sounds like a rallying cry, you’re right. I’m still trying to convince myself. However, your nearest and dearest are worth fighting for. Indeed, they are your world. For many of us, our forebears bore arms and defended our country and our principles. However, how many of us would make the supreme sacrifice for our family? I don’t know. Or, perhaps we’re prepared to die for our families but not prepared to live?

“If you bungle raising your children, I don’t think whatever else you do matters very much.”

Jackie Kennedy

These are difficult issues. What would I do to save my family? Would I give it my all? Or, would I shut up shop. It’s all too hard. After all, there probably is no perfect family, although there probably are perfect moments which we need to seize hold of and savor for eternity.

Perhaps, we should also abandon the entire concept of the perfect family. Understand that a Happy Birthday, Father’s Day, Mother’s Day might need to be considered beyond the day itself when things turn pear shaped or even go catastrophically wrong. That it’s not just about the date but about celebrating the person and our relationship and might be more about something that happened last week, a few months ago than this particular day.

Naturally, for many father is a stranger. An unknown on a whole range of levels. Sometimes that’ s a ache and other time something not experienced, isn’t missed and perhaps others have even filled those shoes. I will not dare to presume to understand.

So, I guess I’m feeling like making a toast to overcoming disagreements, strained relationships, misunderstandings and working through even times where we are treated badly and a serious apology is in order. That’s not to gloss over the pain, betrayal and disappointment. It’s not to condone and accept domestic violence of any kind. However, it is to encourage working through rocky relationships and trying to nut things out, smooth things over and to keep talking. This  is as much directed at myself as anyone else. I find it much easier to retreat inside myself and shut the door. However, love and relationships are the most important things to me and it’s ultimately detrimental to  do that. The only way forward is to come out of my hidey-hole and get the ball rolling.

I am hoping you might also find these reflections helpful and you might like to add some thoughts or experiences in the comments. Our families and relationships mean the world to us so let’s try not only to keep hanging in there, but to also bring out the best in them too.

Best wishes,

Rowena

On The Run…Friday Fictioneers.

“Over my dead body! Dot thundered. “You won’t get me into a nursing home!”

However, the good Lord had other plans. Sent a blood clot to her brain. It wasn’t strong enough to take her out, or destroy her mental faculties, but it had left her paralyzed in a wheelchair.

Dot was sure she could manage at home. Yet, her daughter had her assessed and off she went. Worse than jail, and she’d committed no crime.

However, where there’s a will, there’s a way.

Her daughter locked her up, but her grandchildren set her free.

Grannie was on the run.

….

100 Words

This has been another contribution to Friday Fictioneers hosted by Rochelle Wishoff-Fields. Every week we write 100 words to a photo prompt. This week’s PHOTO PROMPT  Linda Kreger.

My take on this week’s prompt was inspired by my husband’s aunt who was a strong-willed, intelligent and independent woman who lived at home with her son for many years after a stroke left her in a mobility scooter. Unfortunately, she had another fairly massive stroke which didn’t kill her but she couldn’t go home and it was hard for all of us when she had expressed her wishes so clearly but there was nothing anybody could do. That was her lot. This stroke, by the way, had again only really affected her mobility and she was still as bright as a button and it was a tough cross to bear. I would’ve liked to set her free.

Best wishes,

Rowena