Living with Heart

Archive for the Parenting Category

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

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.


Downsizing for Health – Decisions, Pain, Placentas and Parenting

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.

Parenting with Arthritis, Manifestos & a Benevolent Dictatorship

Parents are the bones on which children sharpen their teeth. Peter Ustinov.

This was written for me, my kids, my family. At one stage I had this quote on a sticky note on our microwave – it so resonated with me and HotY.

Parenting is like climbing Mt Everest – parenting with a lifelong painful disease is like climbing Mt Everest on a downward escalator, blindfolded with no oxygen. You don’t even know when you’ve reached the freakin’ top! It seems to be all just hard slog, fatigue and pain.

The only way that I’ve gotten through the last decade was by being organised, by choosing my boundaries really carefully, by constantly negotiating, by not sweating the small stuff and by making it very clear (like crystal clear) that HotY and I were in charge – totally. Our catch cry became “we run a benevolent dictatorship and we do not negotiate with terrorists”.

There were times we felt that our kids had been replaced by terrorists intent on destroying peace in our home. There were times we despaired that our kids would come out the other end – but they did.

That time Dizzle tagged himself on Facebook in a nightclub at the age of 16 – What.The.Hell. And then he had his fake ID next to his real one – really? As I cut his fake ID into 17 satisfying minuscule pieces I said to him ‘Are you seriously this unsmart! You’re making this way too easy for us’.

But it wasn’t easy. In no way was it easy. That was the front I had to put up. That was the face of ‘you’re not phasing me mate – give me your best shot’. That was me hanging on by one fingernail to being my version of the best parent I could be.

Each and every one of these confrontations sapped me of energy leaving my symptoms flaring. Pain, fatigue, stiffness and knowing it would still be there the next day. So how did we get through? Manifestos held the key for us.

If you go to the ‘WHO I AM’ section at the top of the page you can read about my parenting style of calculated neglect. My adult kids are the product of this – but there is a hell of a lot in between the beginning (sweet child) and the end (the self defining functioning young adult).

Manifestos – yeah the name gives it away…
On the fly – we had to create a way to parent that left no leeway for the kids to manipulate me when HotY was at work. The four of us wrote our first Manifesto when both kids were in High School. More commonly known as contracts – it’s a tried and true way to have a group agreement on behaviour, expectations and consequences. Basically an outline for living with each other in a – if not comfortable – then stable way.

We called them manifestos as a purely tongue in cheek ‘hats off’ to all those manifestos that came before. And being a benevolent dictator meant I was never going to be a Stalin or a Hitler – although there were times…

For us, these manifestos gave structure to after school hours, internet use and extra curricular activities. The four of us all sat down at the beginning of each term and would reassess and redraft a manifesto for that term. It would be written, edited and when all parties had signed then it was put on the fridge as a reminder to us all of the expectations.

The most vital point of this is that your teens need to have skin in the game. They need to have a say and be a full part of the process. In the same spirit we – as parents – needed to compromise. What the hell – stuff the small things, let them go. Gone – see you later. HotY picked you up from a party at 17 with the smell of alcohol on your breath – not touching that – got bigger fish to fry.

HotY and I would always have an end game in mind before we sat down to the negotiating table. There were issues that we were incredibly lenient about – we allowed consumption of alcohol while Gem & Dizzle were underage (within reason and in a controlled way) and we allowed boy/girlfriend sleepovers in Grade 12.

These turned out to be win-win issues because it provided a platform to discuss sexuality with both kids when the issue of sleepovers came up. If they wanted to have the sleepover then they had to be able to discuss contraception, respect for their partner, discretion, self respect, relationships ending and everything that goes with.

There were other issues that were lines in the sand. If either kid was not performing at school to the best of their academic and behavioural ability then the privileges started to disappear.

It was important at this stage to be realistic about what academic abilities our kids had. No use accepting C’s when the kid’s cruising and could be getting B’s. Also, no use expecting B’s when your kid is busting their guts to get C’s. Again, choose your battles.

These Manifestos were key in keeping everyone on the same page and minimising the after school angst that you all know about. I felt a real sense of calm if there was a Manifesto on the fridge – OK so that’s my uber controlling side showing again. But it was important for me if I was having a really bad pain day to know that there were still rules in place, homework guidelines for the kids to follow and a general direction.

The priority of these manifestos was 1. meeting school academic requirements, 2. meeting sporting commitments, 3.meeting family commitments and 4. controlling the often overwhelming social & social media lives that both kids had. This involved a massive amount of negotiation on social media use and a few ‘disabling of Facebook accounts’. By the way, do you know how hard it is to disable a Facebook account? It’s like you’re part of a cult and they won’t let you go. They.Have.You.

So that’s the framework of our parenting – and it sounds really cool. Like, I sound like an awesome parent and like the most benevolent dictator ever heard of. But you know that’s just the glossy colour enhancing filter I popped on. Reality always intrudes. Mostly, reality was named Dizzle – but Gem had a few spectacular appearances as well.

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.


My gifts from santa


With the season of giving upon us I’ve been thinking of all the gifts that have manifested in my life since Inflammatory arthritis came and took up residence. Full disclosure – this has been a hard one to write because although I have made a conscious choice to focus on the positive aspects of my disease – there is still a whole lotta crap that comes with it as well.

1. First of all I have the pure unadulterated luxury of time. In this world of extreme ‘busy-ness’ I have that elusive but double-edged sword gift called ‘time’. I gave up work in early 2014 and I probably will not work again – unless my arthritis really gets it’s act into gear and settles down.

So I have time. Time to spend with friends in an in-depth, meaningful way. I have time to read, to see weird movies, to research for friends and time to volunteer in the arthritis community. I also have time to potter and to ponder. I so often hear from friends how busy they are, how they can’t fit anything more into their life and I feel a faint wistfulness. Nah, not really – well maybe sometimes in the dark of night. Slow, small living is fitting me nicely. 

2. By some magical sleight of hand the burden of my arthritis that I thought would ruin my kids teen years turned into gifts that they are still learning from. (OK – so that sentence sounded great inside my head and might be true but also might be another warped construct of my brain.)

I felt guilty for not picking them up from school every afternoon – but- they learned the independence of walking home or catching a lift with friends.

I felt guilty that the meals I was putting together weren’t nutrition plus – but – both kids are healthy a decade on and don’t appear to have any physically discernible mineral or vitamin deficiencies (although Dizzle does have that weird big nose issue…)

I felt guilty that I couldn’t make it to all of their sporting events – but – HotY stepped up to the plate and never missed a game, match or quarter. This really cemented a deep bond that both kids have with their father.

I felt guilty that I was setting a ‘sick’ or somehow ‘weak’ female role model for them – but – my numerous sisters stepped up to the plate and filled the gap. 

When I look back on this perceived ‘gap’ I realise that Gem & Dizzle saw me struggle, in pain, sometimes unable to walk. But they never saw me quit or back down from what I was faced with. 

Well, they probably did but I have a little dream cave in my head where they saw me as a warrior fighting some mythical beast and always coming out triumphant. But, there were also the times I was on the floor in tears.

So despite all my worrying and monumental stressing that they would be somehow deficient because of my illness, Gem & Dizzle are driven, independent young adults that don’t shirk from a hard job (unless there’s a pub crawl on and then Dizzle will shirk till the end of time). Dizzle looks back on his teen years following my diagnosis and says “You were always home in the afternoon – I just remember you were always home when I needed you”.

Did I want to be home – hells no. But that cloud had a silver lining because when they needed a sounding board I was there. I remember one afternoon when I was so fatigued that I literally couldn’t lift my head from my pillow. The kids were fighting and when I didn’t appear to loudly intervene they bought the fight to my bedroom. No biggy. I was still involved in their life – even from my bed.

3. I am a different person than I was a decade ago. If I hadn’t become ill I never would have started my practice of meditation and my practice of mindfulness. I would never have started my practice of gratitude. I know these things have made me a better person and a better friend. 

4. I have learned what it is to be married to a man who has an unshakeable belief in me. A man who married me for better, for worse, in sickness and in health and got the sickness part in spades. He is my anchor here.

5. I learned how strong I am. Like I am seriously as tough as nails. When faced with constant pain you either have a cup of concrete and toughen up or you fold. There was no ‘folding’ happening on my watch.

OK – so this all sounds so wonderful and deeply moving blah blah blah. And all of the above is true. But its still a shit thing to have a disease that won’t go away and is so unpredictable. I still get jealous of the busy people that have so much they have to fit into one day that they complain about it. And I still get angry at people who are perfectly healthy and don’t appreciate every second of it!

So I have finished this fantastically positive post with a blast of reality. Wishing you all a festive season filled with as much laughter & companionship as you want and with all the gifts you truly need. Ill see you in 2017!!

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. 


Trekking, 21st’s & a Grand Admission

Trekking, 21st’s & a Grand Admission


Thank you for joining me as I view life through the lens of living with inflammtory arthritis – recently updated to Psoriatic Arthritis.

Today two monumental things happen. My daughter, my precious Gem dives into 21. We had the party a few weeks ago because of the other monumental thing – my Husband of the Year (HotY) is going on his first overseas holiday without me.

I’m feeling happy, heartbroken, hopeful, worried and a type of sadness that I can’t really verbalise.

Celebrating a 21st is a fabulous thing – its that magical period in your life when anything still seems possible and there are bright green rolling hills before you. Gem has brought a depth to my life that has been profound. She was 11 when I was diagnosed with Inflammatory Arthritis and has had to learn early how to navigate public transport, cook a meal and basically  – be organised. There were times early on when I couldn’t drive and my pain was almost overwhelming.

It breaks my heart that she has witnessed this, absorbed this and that it has shaped her. She is studying Pharmacy now and she approaches her degree with a slightly different view than her peers. She has seen the good, the bad and the ugly of medication. 

I look back and feel a strange amount of guilt – I mean, surely I could have done something to stop my illness touching the lives of my family, or maybe I could have stopped the illness. Is my arthritis my fault? Have I done something so wrong that this is my punishment? Illogical thoughts. Irrational thoughts. However, they are there and they deserve their place within me.

But I sit here right now – in this moment – feeling such joy at the young imperfectly perfect woman that Gem has become. Pride, accomplishment, fear, hope.

Also, today my husband travels to Nepal to trek to a remote mountain village in the Lhi area to help in rebuilding some of the devastation caused by the earthquake of 2015. Lhi is not on any tourist map and it will be a tough 6 day walk to get in there and a rise in altitude to about 3,500m.

This is the first overseas trip that HotY will go on without me and I am bereft. I’m not bereft because he’s going. I’m freakin’ bereft because I’m missing out!! This is my absolute FOMO moment.

My heart and mind are with him. My body is not up to the task. My sadness is a physical thing and has its place nestled deep inside me. Under different stars I would be leading the Trek. I would be proudly squatting to wee on the trail. I would be braving the broken down bridges I’ve seen in photos. I would be in awe of a place different.

I love travelling but it takes a lot out of me and requires months of planning. Lucky I am a planner, a thinker, a doer. So the planning is part of the journey for me. I am planning my husband’s trip – even to the extent of going to the travel doctors with him to ensure he got the right injections. 

This is where I make a grand admission – I am freakishly controlling. Like a serious control freak. My family are constantly driven crazy by how much I want to micromanage. The worse my health is on any given day will increase my need to control my environment. I’m not alone in feeling this. Many people who have a chronic pain condition feel they have lost control of their body, (you bloody dirty, rotten traitor), so start to exert control in other areas. Yeah, Yeah – I know the psychology behind it, but it’s a hard thing to control. It is a beast that niggles, finds fault with others and sets rules that are too tight.

But I am learning to loosen myself, slowly, like a tangled roll of barbed wire that needs some straightening out.

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.