Living with Heart

Archive for the Inflammatory Arthritis 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.

Michelle

Oh Fatigue – I will manage you with a smile

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

My Acid Ankles & why medical names should be simple!

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

I do it for Future Me!

I do it for Future Me!

When asked recently what motivates me to Get up, Dress up & Turn up every day – I had a moment where my brain and my mind were in perfect synchronicity and I said …”I do it for Future me – everything I do now, I do so I can do it in 20 years time”. 
It hit the mark. It hit the mark for the audience but also for me. And I was quietly so proud that in front of a few hundred peeps – I’d come up with the goods! Happy dance time.
You and I both know that the future is like a furtive weather system. At one moment its clear and calm and then – BAM. You’re thrown in the deep end and the storm is taking things from you.

But I really, firmly, absolutely like totally believe that there are things we can do everyday that will take back at least some of that ‘clear and calm’. Even in the most pain with major fatigue – when the storm is raging – there are still ‘things’ that can be done for “Future Us”.

So – what? What are these ‘things’ for Future Me? Well, for me they are the basic things that I try to do everyday regardless of how I feel. 

I do something for myself, 

I do something for someone else, 

I do something for my physical health, 

I do something for my mental health, 

I do something for my family/friends.

I do something for myself. This can be as simple as indulging in a square of dark chocolate, having a coffee in the sun, having an extra long shower, having a massage session. Basically, anything that is self-care. Sitting in the sun on my balcony, rubbing cream into my drying skin…

I do something for someone else. Nothing diverts me out of my pain/fatigue cycle more quickly than doing something for someone else. I admin a Facebook group for women living with Inflammatory Arthritis in Australia (Swell Gals) and I’m on the group every day in some capacity. Even just to like a post or to add a comment of support to someone having a worse day than me. This makes me feel connected, a part of something, like I have a purpose.

I do something for my physical health. This will take a different form depending on how much the storm is raging. On one day I may walk for 30 minutes as a ‘thing’ for my physical health – on other days I will rest and have a sleep. I’ve learnt to listen to my body and hear what it’s saying.
I do something for my mental health. This is a no brainer – or maybe a brainer (lol). Every day I meditate in some form. Some days I will do a formal mediation at night just before sleep. Other days it will take the form of several rounds of deep breathing scattered through the day. I take my breathing down to 4 breaths a minute and this centres me. It keeps me grounded. Other days I will do a visualisation exercise where I envision my pain as being surrounded by a bright blue/white healing light. As though the brightest ocean is bathing my joints with peace and calm.
I do something for my family/friends – my connections. Every day I connect in some way with family or friends. A text to my ‘moved out’ son, a what’s app message to my sisters, a call to my mum. A coffee with my ‘still studying’ daughter. A visit with friends or even just texts.

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

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


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

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.
Michelle

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.

Michelle

My gifts from santa

img-19

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. 

Michelle

He stole my water bottle – and other life props!

 

thumbnail_fullsizerender

‘Could you please fill my water bottle up – thank you so much.’

I swear that’s what I said to the coffee shop dude. He must have been having a serious brain fart because he emptied then threw my water bottle out. He. Threw. My. Water. Out!! Who does that!
 

Ok, calm down Michelle – settle petal – it was a 3 day old water bottle. But…..water is my life prop. Other mythical ‘well’ people might have things like lipstick as there ‘must have in my handbag item’ life prop. Mine is water. And eye drops. And hand sanitizer. And pain meds for all types of pain. 

One of my first symptoms of inflammatory arthritis was dry eyes & dry mouth. Like eyes so dry that my eyelids would stick to my eyeballs (well that was hysterical the first time it happened at 3am…getting slightly old now). A mouth so dry that I would, could and do choke on food. 

These freakin’ annoying symptoms endure. They never leave me. It’s like we’re in a weird friendship where they make me crave water & I have to constantly cave to their demands. None of my drug treatments have really resolved these 2 symptoms. If they were friends they would be so in the frenemy zone.

So back to the coffee shop dude. I immediately asked to buy a new bottle (I do hate ruining the environment because of my need for water in plastic bottles – but what’s a girl to do?) “We only sell water in glass bottles here”. Oh holy stab my eyes out with steak knives – what form of derivative hippsterism is this???? My shoulder already aches from holding my bag – it ain’t gonna cope with glass. So I smile (wanly) and trudge away. 

I trudged around looking for somewhere that would sell me just a plain bottle of water. I had a busy day and this extra trudge had not been factored in and I would pay for this later. Well after 10 minutes I found a water bottle and lovingly stroked it as I antibacterialised my hands and cracked the top – and swigged away. Bliss.

This whole event really got me to thinking about how dependant I am on my little life props – the things that get me out the door and keep me within a reasonable level of comfort.

And none of the things below are luxuries – they are my essentials. My lovely little precious bottle of Hylo-forte eye drops are número uno – if I don’t have that bottle and a backup – well life as I know it ends and that’s it. I really need to have access to water because – throat closing up – not fun. Anti Bac gel – because I don’t want the germs I already have little alone your germs (sorry not sorry). Lip balm – dry lips are a pain. And then there is the pain meds – I have a lovely array for any occasion. Sort of like some people have an array of lip gloss in their petite hand bags – I have the equivalent in pain meds. 

So what are your life props? What’s your ‘must have in my bag’ items?

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. 

Yes, Yes & No – getting through big life events

dsc05562-copy
Over the years I’ve come up with various successful and spectacularly unsuccessful ways to deal with big life events (like weddings, major birthdays, Christmas etc). It is quite staggering how really dumb I can be at times – and I say that with lots of love for me and the realisation that, like, I’m not really dumb – I just act it at times.

When an event is on the horizon my Mind is telling me one thing and my Mouth will be doing the total opposite. “Yes, of course I can come to lunch and then go out to dinner. Oh, I’m really good at the moment – don’t worry – I’ll be there!” How many times have I had variations of that conversation? Too many to count.

The problem is that I always turn up when I say I’m going to. I over-schedule myself. I max out my energy and then I crash & burn (burn baby burn). But I’m learning and getting better at life managing myself.

A recent example of better life management occurred in the week leading up to Gem’s 21st. We had family coming from all over for the celebration with the arrivals starting on the Wednesday before the weekend. I have this totally nutso enormous extended family that I love, love, love and I knew there would be heaps of lunches, coffees and catchups. I rationally knew that I needed to conserve my energy and dole it out like chocolates to kids at Christmas. My Mind knew this….but my Mouth had other ideas.

I had been asked to talk at an arthritis event that was 4 days before the party just when all the family would start arriving. I initially said ‘No’ – because I was being totes sensible and just an amazing life manager. I said ‘No’ because the focus of the week would be on family and I couldn’t give the talk the preparation that it needed. This was my Mind merging with my sensible Mouth in one perfect moment of union (OK – that sounded weird but you get my drift).

But then….. I went and said ‘YES’.

What the? I knew I was crazy but the words just kept coming out of my mouth and I couldn’t take them back. I told HotY and he said “What the actual %%%% are you thinking? You cannot pull this off – you will drive us all crazy because you will be stressed out of your mind!!!”

So, I stewed on it for weeks and got stressed and got anxious and pretty much catastrophised the entire week into a volcano that would explode leaving me a lump of dried lava lying in its wake. When I catastrophise I don’t go small – I go mega, big volcano, big lava. How could I get out of it without hurting anyone’s feelings & without looking like a total flake?

Then I had another merging of Mind and sensible Mouth. I wrote an email and said ‘No’ and explained why. And guess what? They understood. They were supportive and they said “Have a wonderful celebration with your family.” The sky didn’t fall in and the volcano didn’t explode and I never made it to the dried lava stage.

We’ve all been in this situtaion. You want to go to all the things but you’re body physically is not gonna keep up. So, this Christmas only choose the events that you are really invested in going to. Saying a gentle but firm ‘No’ is the most important thing to learn. And also sticking to the ‘No’ is pretty essential.

I’m trying to be a better life manager for myself. I’m learning to prioritise the things that I do. Maximising my social/people connections that are meaningful to me & keep me part of the bigger world. It can be a big drain on energy to attend these events but making the effort is all about keeping those connections I talked about last week alive and thriving.

So, don’t you be rushing in and saying ‘Yes’ to everything in the lead up to Christmas. Don’t you dare! You’ve been warned! Only say ‘Yes’ to what you, yourself can manage. What your body is able to cope with and what your sensible Mind says is good to go. And when you say ‘Yes’ – say it from the heart and really enjoy yourself.

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

Page 1 of 212