Living with Heart

Archive for the Change Category

Parenting in Pain – When the Kids Leave – Express Launch Time

By on December 29, 2017   /   Change, Dry Eyes, Dry Mouth, Fatigue, Inflammatory Arthritis, Meditation, Pain, Parenting, Psoriatic Arthritis, Travel  

Chaos reins supreme! Both kids moving to parts other than where I live – parts a long way from little Queensland!

…and then December came! Suddenly the bookends fall into place. What started 18 years ago with the first steps into preschool have ended with 2 graduation ceremonies – full of pomp and ceremony and magic and a bucketload of nostalgia. Gem and Dizzle have finished University and move onto life and move away. Gem into a remote part of Australia as a pharmacist and Dizzle accross the country into an Engineering role.

Friends, acquaintances and family have mentioned this Empty Nest Syndrome like it is something that you inevitably catch. Perhaps a bug, or a virus. I haven’t caught it yet. I’m preferring to call it the Express Launch Event. In one month they are both launched in a sudden Event. A positive Event that is the culmination of 23 years of hard slog and fun times from Hoty (Husband of the Year) and I.

And I am tired. These last months have been busy and we all know that too much busy does not mix well with Psoriatic Arthritis. There hasn’t been time to catch my breath as things pile up. Good things. Fun things. Important Things. Wonderful life events. But…exhausting. I find myself limping into the new year feeling slightly wrung out. A little like a dish cloth thats been used a few too many times and needs to be thrown out.

So maybe I feel slightly relieved that come late January I will have some quieter time. Time where things won’t be so chaotic. Time where I can get back into my routine of exercise and better eating. Time to do some more writing (yes – I have been so absent).

This is the inevitable tension of parenting. Your needs versus your kid’s needs. And with a chronic condition there is always more tension in one direction.

Don’t get me wrong – I am, as always, the most interested observer of my kidlets lives! I am so excited to see what life throws at them, about where their jobs take them, about how they develop as people and members of society. But……I’ve done most of my bit. I sit here and pat myself on the back. I look back fondly at the time when they were younger but I don’t dwell there.

There is this rarefied feeling in the air right now that this time won’t last. This dinner together might be the last we 4 share together for…many months. This holiday together may be the last we 4 share before things change.

But change is good & always inevitable. And always an opportunity for more, better or at least different.

Thank you for reading this. Thank you for taking time to listen and to hear. Thank you for seeing my life through my joint perspective.

Michelle

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Oh Fatigue – I will manage you with a smile

By on July 1, 2017   /   Change, Fatigue, Inflammatory Arthritis, Meditation, Pain, Psoriatic Arthritis  
Oh Fatigue – I will manage you with a smile

Oh Fatigue – I will manage you with a smile…..said no-one ever.

So about mid March 2017 I woke up on a Sunday morning and started my process of getting up which is really a staged insertion into the world – or maybe a staged extraction from my bed. 

Instead of my stiff, sore but always half jaunty ‘Get up, Dress up, Turn up’ attitude…..SMACK DOWN. Fatigue had hit me a sucker punch. I literally stepped back and fell on the bed (or sat so heavily that my feather pillows bounced – whichever version is more visually appealing).

You all probably know what I’m talking about but if you don’t – well let me tell you about the Big F. It’s not just being tired. It’s not just feeling like you need a little Downton Abbey lie down. 

What it is is a game changer. It’s like your body is moving through wet concrete. It’s like you’ve run a marathon when you’ve just walked to the loo. It’s like an elephant is sitting on your body and you are oozing into the ground. Seriously. This is the one symptom that can’t be escaped – but it can be managed.
How I manage fatigue – The Big F:

1. Stop panicking: This will pass, I am telling myself right now it will pass. It may seem like my body is physically the weight of the world at the moment but tomorrow will be different. It may be worse (hey – let’s be honest here) but it may….just may, be better. Or just different. I’d be happy with either.

2. Think about your Fatigue. OK, I know this sounds weird and you’re rolling your collective eyes and thinking ‘Michelle’s goin’ hippy dippy now’. But bear with me – this actually works. Take a few minutes and think about how the Fatigue feels in YOUR body. Where is it felt most? What shape and colour would you give it? For me, it’s a wet, heavy woollen blanket that is brown and black. It is draped around me and through me and weighs me down like lead. When you have your image – really cement it in your memory. 

3. What were your Big F red flags? When did your wet blanket first appear? Search your recent memories for the above sensation…….Did you subconsciously notice your foot dragging yesterday? Did you have a heavy feeling last week? Did your brain start malfunctioning a few days ago? The idea is to search through your recent memories for the above ‘feeling’. This is your ‘Big F Red Flag’. For me – I knew at least 2 weeks before that somethin was a comin round the mountain. I’d had a few feelings of ‘geez, its hard to get out of this chair…it’s harder than it usually is. ‘Sh&t – I can feel that wet blanket coming – my hallway seems really long’.

4. Start cancelling, clearing or categorising the calendar! The Big F can’t be fought off, it needs to be lived through. Prioritising is the key here – keep all your medical appointments and if you have to work then prioritise that…but ‘just say no’ is a really good phrase for now.

5. Lower your standards – seriously lower them. Lower. Now even lower. The Big F doesn’t give a flying duck if your sink is full of crud or your hair hasn’t been washed for a week. I give myself permission to stay in my PJs all day. I will not feel guilty because this is what my body needs. My ugly wet blanket is here at the moment and this is frustrating but I know it will pass. I will be kind to myself.

6. The next time you feel the Big F think of YOUR image and acknowledge it. Give it a place in your body without judgement or fear or panic. “I am feeling the weight of that ugly wet blanket right now – but I am still Michelle. Feeling this blanket does not change who I am. I can still be happy and calm with this wet blanket.” You get where I’m going with this.

7. File the Red Flags for future reference. Over time you will learn the red flags and you will start to alter your calendar to stop a major SMACK DOWN. Well that’s the theory but – hey – it’s pretty fluid so just go with it.
So, the above, yeah. All sounds really organised and super ‘manageable’. But (you knew there was a ‘but’ coming). Even after a decade, I still get SMACK DOWN. I’m slowly learning to take notice of my red flags. I’m slowly learning to remember what SMACK DOWN feels like. 
And also, the blindingly obvious point is – The Big F is part of my disease process. Duh! It’s part of Psoriatic Arthritis and fibromyalgia. It will be lurking around the periphery of my life forever. I am just a brief shower of rain away from that ugly wet blanket…
Thank you for reading this. Thank you for taking time to listen and to hear. Thank you for seeing my life through my joint perspective. 

Michelle

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My Acid Ankles & why medical names should be simple!

By on May 13, 2017   /   Change, Inflammatory Arthritis, Pain, Psoriatic Arthritis  

On a recent visit to my rheumatologist we had a good old chat and it was going well. I was feeling crap and she was sympathetic in that ‘I’m healthy and a size 6 but I totally understand what you’re feeling’ type of way. 

I had HotY (Husband of the Year) with me so I think she was extra nice. HotY is my secret weapon – he looks so innocently concerned and genuinely earnest that I am by association taken more seriously. (He is really thinking about his latest round of Forge of Empires – but he covers it well).

Back to the rheumatologist – we came up with a long plan to get me out of the ‘I’m feeling crap’ phase. Lots of let’s double this drug and reintroduce this one until your liver flickers et cetera.

I gracefully pointed to the impresssive bulges at the back of my ankles and she became quite animated. “I’d really like to run an ultrasound over that and see what pops up.” I replied that it felt like acid was swirling around my ankles, which I thought was a great descriptive way to explain that I was feeling no love from my acid ankles. Now – Acid Ankles was and is the perfect word to describe my bulges. Simple, descriptive, accurate, understandable, to the point, relatable.

Then she whips the ultrasound out and waves it magically over my bulges and says “massive retrocalcaneal inflammation”. Say what?

How am I supposed to know what this is? I couldn’t even spell it and I was really thinking. Acid Ankles is just more simple. Like really simple. 

So my rheumatologist pulls up a diagram on the computer of what retrocalcaneal inflammation is (I assume she knew how to spell it because she was able to just google it really quickly – she’s smart that way). I listened earnestly to her explanation. I went home and googled it myself. 

After much reading and extensive research here is my explanation for what massive retrocalcaneal inflammation is:
Between my achilles and my ankle/foot joint is a goon sac full of acid that is massive. It is so massive that it is squashing out the back of my ankle creating impressive bulges. The bulges go around my achilles tendon. My achilles is surrounded by a swirling Acid Goon Sack. This causes pain.

Simple, elegant, descriptive, accurate.

Now, when I discussed this alternate explanation to HotY later he was very impressed and suggested it would make a great name for a Bar. Acid Goon Sack Bar & Cafe. But, we would then constantly get raided by the cops because……acid.

So, medical words should be easier to understand. That’s my point. And if I see an Acid Goon Sack Bar & Cafe opening anywhere – I will know you read to the end of this blog…and I will be happy.

Thank you for reading this. Thank you for taking time to listen and to hear. Thank you for seeing my life through my joint perspective. 

Michelle

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Downsizing for Health 2 – Can I keep the kid’s teeth?

By on April 8, 2017   /   Change, Fatigue, Inflammatory Arthritis, Pain, Psoriatic Arthritis  


Yeah, that sounds weird. But it sort of encapsulates the 2 year journey of culling a lifetime of memories to fit into a 96m2 unit. With inflammatory arthritis sticking and staying around like an old fish smell – downsizing was really the only option.

When it all started – about 2011 – I looked at our big old house and it seemed overwhelming. Cupboards full of life, drawers full of memories and a massive collection of 72 pieces of red glass and a gorgeous china dish with every tooth my kids had ever lost. It was weighing me down and holding me back. And the teeth sort of smelled…bad.

The sheer mental energy it took to acknowledge all the things that possessed us and kept us in this big old house was enormous.

I knew that moving to a smaller place was the right action – but I also knew it would take a lot of time and physical energy. With fatigue ever present, I physically couldn’t go for days or hours at a time without a break. I knew it would be months or years to get the house and ourselves ready for the move.

So we began with easy things. We emptied the linen cupboard and threw out anything that had been given to us second hand. For some reason, I had been the receiver of all second hand doona covers from parts of my family. I was even given second hand towels!!! What fresh hell is this?

Why had I allowed myself to be given someone else’s used towels? Because I would always accept them. I would always find room for them. 
I allowed myself to be the recipient of other people’s memories. 

When HotY and I looked at the furniture we possessed, we realised how much of it was second hand from family and how much of it was not ours. Not our style and not part of us.

So, back to the linen cupboard. Once we had the above realisation we loaded up the car and delivered anything in good condition to the Salvation Army, anything in bad condition to the tip. What was left was manageable.

We applied this logic to all our possessions. Emails were sent out asking any family wanting things to come get them by a certain date. After this it was fair game. If I had a quilting group at my house I would lay out a selection of red glass or china cups and say ‘Have at it sista! Take what you want and love it’. 

Over about a 2 year period we devoted a few hours every weekend to culling, giving away and dumping.

Along the way we discovered some interesting things about eBay and Gumtree. People do not want to buy second hand furniture. They really do not want to buy something old – even if it is an antique. So, most of our stuff was given away or sold at such ridiculous prices that they may as well have been given away.

And now, we have 3 sets of towels – for us. They were specially chosen and debated over. The colours are our colours. We do also have 4 guest towels for visitors and 4 beach towels. But now, for everything that is bought, something has to be thrown away.

As I write this I look at a garbage bag full of clothes heading for the Salvos. I just had a birthday and was the recipient of some gifts…..therefore an equal amount of things need to be given away. 

There is a balance in this – a level of equilibrium that is just logic.

Thank you for reading this. Thank you for taking time to listen and to hear. Thank you for seeing my life through my joint perspective. 

Michelle

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Downsizing for Health – Decisions, Pain, Placentas and Parenting

By on March 21, 2017   /   Change, Fatigue, Inflammatory Arthritis, Pain, Parenting, Psoriatic Arthritis  


We are accidental downsizers – we fell into it and it seemed to fit – like a glove that we shrunk to cocoon us.

Somewhere around 2011, HotY (Husband of the Year) and I started talking about moving to a house that was less. Less maintenance, less room with less things to keep clean and less space to put things in. Less for me to do and less for HotY to do on the weekends. Just less.

I’d been unwell for a few years by then and it was dawning on us that – although I was working part time then – my inflammatory arthritis wasn’t going away. It was sticking and not moving and I was getting angry and I was wanting to change ‘it’. But the health cards we are dealt can’t really be changed. You gotta play the hand you’re dealt, with as much cunning and stealth as you can.

The big old house had been a wonderful place for us – our kids had grown up in a pocket of 50’s utopia where they ganged together with the neighbouring kids and took on the world while riding a wheelie bin down the hill. Oh the memories. But at some stage memories aren’t enough and a decision has to be made to move on and to stay in the “state of becoming”.

To quote Bob Dylan “You always have to realise that you’re constantly in a state of becoming, and as long as you’re in that realm, you’ll sort of be alright”. This really resonates with me. I want to keep moving, keep evolving, keep learning all sorts of ‘becoming’.

Our big old house was just that – really big and really old. It had grown with us and aged with us as well. It had seen all the parties we’d celebrated – it even had Gem’s placenta buried under the concrete slab we had laid when we renovated. (OK – I am aware that sounds really whacko weird but it’s the god’s honest freaky truth). I was handed the placenta when I left the birthing centre and didn’t know what to do with it – so I stuck it in the freezer for 4 years – as all sensible people would do. I can tell you’re laughing and when I look back …no words. But what comes next is even worse – or better?

When we renovated – thinking that we would live in the big old house forever and health problems would never linger, it seemed natural (and really really creepy) to bury the placenta under where Gem’s bedroom would be. Holy Shut the Front Door and don’t tell the new owners. Every time I catch up with our old neighbours this story is retold and laughter abounds. And who are they laughing at?

Apart from what lies beneath, in the big old house there were more wrinkles than you could poke a stick at. And, quite literally, you could poke a stick through some of the gaps in the painting. When we eventually bit the bullet and painted the house the painters used 15 pallets of spac filler! If I ever drive by it now I know it is truly held together by ‘No More Gaps’.

The garden took about 4 hours a weekend to maintain and the stairs were becoming a problem for me, not to mention the 6 sitting areas we had to keep clean – it was too much.

So we started floating the idea of moving in a proactive way rather than a reactive way. Move then, when we could make the choice rather than wait until maybe my health would make the decision for us.

By this stage, I resented the house to the point of almost hatred. It felt like a massive millstone around my neck. Every day when I walked up the steps I would look at all the ways it was falling apart. Falling apart a lot like my body. It took me 2 more years to get HotY fully on board and for the move to happen.

So we looked at a few smaller houses and quickly realised that this solution would still have all the problems of the big old house. And then, after one spectacularly large Dizzle party we woke up frazzled (not dazzled) and looked at each other and said ‘Why? Why would we want to move into a smaller house with the massive personalities that were flowing with us?’. It didn’t make sense.

So we floated the idea of NOT moving to a smaller house. Instead, moving to 2 units and physically separating our kids from us. By the time this actually happened Gem was 18 and Dizzle was 19. These 2 units would have to be in the same building so that we could still be a ‘family’ and share meals but would be separate enough to allow them some space to develope ‘adult’ skills and do their secret university business in a protected place.

It seemed like the perfect, if unorthodox, solution for us. And it was. So now, at the end of 2016, Hoty and I live in a 96m2 Parent Land unit and our kids live in a 2 bedroom 2 bathroom Party/Study Land unit a few floors below. It has been this way for just over 3 years now.

Gem & Dizzle come up for dinner most week nights and then they magically GO BACK to Party/Study Land. It is the most awesome thing. How many times have you just thought to yourself ‘geez I wish my kid would just be here for the nice times and then go somewhere else for the rest of the time’. Yeah – I hear ya.

I never have to see if they do their washing, if they change their sheets, if they wash their cereal bowl, if they iron their clothes, if they cross-contaminate white shirts with black trousers when washing. It’s is totally plausible deniability.

And I cannot express how much this living arrangement has improved my relationship with my son, in particular. Gem and I have always had a smooth rapport while Dizzle and I have a more fractured rapport. Dizzle and I would have screaming ‘wake the neighbours’ fights about the state of his bedroom, the amount of time he was drunk, hungover blah blah.

We now have civilised trolling sessions over a meal.

We now have discussions about life, politics and how much Gem & I love Clementine Ford and how much Dizzle dismisses her as a ‘feminazi’…gggrrrrrr. He can reel me in like no one else on earth and it’s because we are so stuck in being similiar.

And always, at the end of the meal and discussion, Gem & Dizzle go back to Party/Study Land.

So it has definitely delivered to HotY and I a level of peace and that all important control over our environment. OK – so the control is for me but it does soothe me.

Of course, you’re wondering how we went from a big old house to a 96m2 unit? Next week I’ll delve into the culling process that took 2 years…..

Thank you for reading this. Thank you for taking time to listen and to hear. Thank you for seeing my life through my joint perspective.
Michelle

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