Living with Heart

Archive for the Meditation 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.


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. 


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.