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Some weeks ... (a ramble with a dash of owww)  ... 2 August 2025

Some weeks, it feels like I’m juggling a dozen things.

Other weeks, I’m probably juggling just a few… let’s say five — but I’ll have forgotten what three of them are and most likely dropped one on my foot.

So yeah, there’s pain sometimes. But I plug on, and get back to whatever I was doing.

I’m no hero, I trudge along, have bursts of enthusiasm, am definitely stubborn and persistent (which I knowww annoys some people). But every now and then, that persistence leads to a little brilliance - which completely surprises me - but keeps me doing my thing!

Also? Naps. Cups of tea, many. And some very understanding people in my life (hi Kel 😘)

It’s taken me a while to figure out why I do what I do - well, why I do so much of it.

At first, I thought it was because I’d been given a second chance. More than one second chance! And it is, certainly, because of those - for the most part.

But it's also because I care about stuff.

Not all stuff. Just some stuff. Well, half the time I don’t care about much, that's true.

Mostly I care about my family. Of course. But I care also, as a sort of sideline (a big one)  about the MS community. A lot. 

I know what MS is.

I understand the MS life. I’ve lived it and still live with a smashed version of it - having experienced the worst of it, to the joy of overcoming a good chunk of it. So - focusing on that community, to help in some way, any way I can - it’s just where I find myself.

There’ve been times I’ve nearly given up though. Well. Only once really. 

Long story, over and done now.

And there ya go, I sidetracked myself - but, I'll get back to what I was intending to talk about ... !!

Where was I?!

I know ... I was going to talk about running an MS support group - because I goof up heaps but I think people are ok with my goofs because they know I try (and my group is full of terrific, kind people).

But I do get into a tangle sometimes, just keeping up, with myself really.

It means something though.

Support groups, they help people - and I'm one of those people helped, I just organise days and times to be honest, that's it! I get helped too, meeting up with others and making friends through those support meetings.

It IS all meaningful.

Even the admin bits.

Even the mornings I triple-book myself, forget where I’m supposed to be, and can’t find my notes.

It’s always okay in the end. I just show up and do what I said I’d do that day.

Even if I’m totally disorganised, I think people appreciate the fact that I’m there.

And honestly? I’m proud of that - even if it’s the only thing I’m known for.

I'm also proud that I started a podcast that shares real voices of people living with MS.

Those stories matter.

They matter even when I fall behind.

They matter even when I doubt myself.

They’ll still matter when I find my rhythm again and hit publish on the next episode - whether it’s a couple months late or not.

People need to hear other people.

And,  a newer project - I’m writing children’s books now. I’ve discovered a new joy, telling stories for children.

There’s something about creating tales of curious pigs, brave kids, and imaginary worlds. I can't help but feel childlike when thinking and writing those stories, and that's no bad thing.

The publishing process drives me slightly mad - but when it works? Feels fabulous.

(I back up everything in five places now, a lesson learnt from one enormous mistake)

Apart from that but through it all - I appreciate so much when people tell me that something I said or did helped.

Or something I wrote made them laugh.

Or something I shared made them feel less alone.

Like the phone call from a friend I hadn’t seen in years, who told me she loves me - because she saw something silly I’d posted online and remembered all the fun times we’d shared.

That’s more than enough.

I'm so blessed. My messy, jumbled-up, occasionally miraculous life is full of things I believe in - even when I don’t get them right the first time.

It’s full of people I want to show up for - even if I arrive flustered, with a to-do list I’ve accidentally ironed.

Which reminds me - my kids still laugh about the time I ‘accidentally’ made a cup of tea… or was it coffee? Never mind. They were all so young back then (me too). And it still cracks us up. Probably the first sign of this wonky, confused, slightly feral life in retirement that I now am blundering through.

So, I don’t always have it together.

(Okay, rarely.)

But I keep going.

Because it matters.

Because I care.

Because I can.

And you and me, we don’t have to do everything.

We just have to do something that matters to us.

That’s how we make a difference.

Even if it’s messy.

Even if it’s late.

Even if it’s weird.

Even when you reach your senior years, and life feels very real.

So maybe… doing what matters to us is enough.

For any of us. At any age. 💛

Take care now,

Colleen

(Writer of children's stories, podcast host, tryer (or try-hard maybe ... I'll see what my kids say, they'll tell me the truth!😁). 

From Pigs to Paint Pots: Why I’m Writing Children’s Books Now ... (25 July 2025)

If anyone told me a few years ago that I’d be writing children’s books today, I’m not sure I'd have believed them. But here I am, knee-deep in story drafts, small pigs, smiling bees, muddled up rainbows and learning curves – and feeling proud of myself!

It all started with an idea that became a story, about a little pig I named Hamlet.

Hamlet is the star of my still-in-the-works picture book series ‘The Next Pig Thing’. He’s a little pig who reminds us all (young and old) that often the best adventures are the ones that surprise us. The series is nowhere near being published yet, I’m still editing the first three books, and yet to look over the remainder still in draft - but it’s coming! Slowly and surely, but definitely.

In the midst of all those pig tales, I wrote and self-published Mum Said There Was Nothing Under the Bed …, my first (actually published) children’s book. It’s a little story about bravery, bees, and little ones believing in things even when their grown-ups don’t - a bedtime tale with a bit of a wink, and dedicated to the littler ones in my life.

But my latest project - and the one that feels like the heart of it all - is a children’s book, tentatively titled Think Splotch. It's not ready for publishing just yet, but soon. To my thinking it’s quietly powerful. It’s about a town where everyday things start to change - where life shifts without warning - and about one boy who learns that even in uncertainty, good can be found.

Behind Think Splotch my thinking was of people living with chronic illness (like MS or MND) — as well as the children who often are beside them. It’s a story I hope will help families find language for things that are often hard to explain.

Proceeds from my sales of Think Splotch will be donated to research for Multiple Sclerosis and Motor Neurone Disease. I know that’s ambitious. I know it’s not likely to make millions. But I do believe – that with support, with kindness, with a few people cheering it on - anything can happen. It really can.

Thanks for being here. For reading. For caring. I hope you'll be here down the track, helping me turn stories into something that might do some good in the world - that would be beautiful.

—
Thank you,

Colleen
Author of Mum Said There Was Nothing Under the Bed (which ended up being published in Portugal or somewhere - and was my first publishing lesson! )… and the upcoming Think Splotch (tentative title?)
(and wrangling a pig named Hamlet in my spare (ish) time) 

Karaoke and Other Acts of ... Bravery? ... 8 July 2025

I split this blog piece this into two parts - because I get weird sometimes and this definitely was one of those times - but here it is! 😁...

Part 1

Not long ago — or maybe it was ages ago (time gets weird after 60… no, after 50 probably) - anyway, it seems not long ago, I stepped up to a karaoke microphone… and sang.

I didn’t run away.

Ok, the first time was with my sister - safety in numbers! - and she and I do have fun together 😆so karaoke wasn't much of a stretch for us 😆

It was a lot of fun, my singing was not, um, good. It was loud though!😊

After that, people expected me to keep singing karaoke - when I was mostly there to cheer my hubby on, the karaoke king, and it was always a fun night out watching all the different people stepping up to sing, good, not so good, better, intoxicated and all sorts.

I did put up my force-field thing, tried not to get talked into it. I was definitely nervous, but ...  truth is, I wanted to, I just didn't want to do it alone.

After a few more "go on"s - I took that deep breath and toddled up to the mic.

And sang. Not well, still, but not an absolute stinker either (says me). Just… sang. With a mic. Loud. Quite possibly off-key in many bits. Possibly not, here and there. How would I know? Haha!

And I loved it.

Now, I’m not saying karaoke is or should be some sort of sacred life rite. But for someone who doesn’t exactly seek out the spotlight, it was something. Definitely a bit brave. Singing, in front of people, not just to myself - was a lot outside my comfort zone.

But - and here I go, acting like some motivator or influencer or something ...

Part 2

There was some sort of big shift.

I stopped caring whether I was “good enough” - instead, I was proud that I was someone willing to try! 

Sure, it took me a while, but I did it!

Thinking about it since then, I realise ... nobody cares, if you're good, or if you're not - and if anyone did, would it matter? Nope.

I’ve kept singing since that first solo effort — quite badly at times. I might have hit the right note here or there, who knows? But overall I’m happy just to be fronting up to that mic.

Because that's brave for someone who doesn't ... sing. 

And it feels good, it's fun !!

(According to Kel, I now have “fans.” I think they’re just being kind… and most likely trying to protect the furniture. I don’t know what protecting furniture has to do with anything, but it felt fun to say it. (sorry))

Anyway, here’s the thing:
Singing out loud — especially with a mic, where people actually hear you — is a great metaphor for life.

(And I think metaphor is the right word. Possibly.)

What I’m trying to say is:

We don’t have to hit every note.
We don’t have to know all the words (yep, I’ve made some up).
We don’t even need to be confident - just willing.

And I know this sounds like me being weird, again — but it’s true for more than karaoke because it's the same when you:

1. Speak up at a meeting.

2. Say yes to being on a podcast about MS.
   (Hint hint — I’m always looking for guests. So if you have a connection with MS say hi, okay? 😊)
   
   

3. Publish your first book (I'm doing that too! ... stay tuned).
   
   

4. Post your first comment.
   
   

5. Write a blog post you’re not sure anyone will read (helloooo).
   
   

None of those things need to be perfect.
They just need the willingness to show up, as yourself, and try.

So try the song.

Even if your hands are shaking (they will).
Even if your voice wobbles (it might).
Even if it’s AC/DC and you’d asked for ABBA.
Even if you forgot your glasses.

Try the song.

Someone in the room might need to see someone like you do something brave.
Even something silly. Especially something silly.

And you?

Do the thing you secretly want to do (as long as it's safe, and legal, of course)

It may just be the 'wonderful' you imagined. 💛

— Colleen
Still singing.
Self titled National Treasure 😆🤣 (in progress!) 🤣😆

National Treasure in Progress ... (5 July 2025)

(or, what I’ve been up to lately — besides giving myself imaginary awards)

Facebook doesn’t quite do what it used to — you know, random updates, daily nonsense, and knowing what everyone had for lunch. I miss it a bit. Not the over-sharing (okay, some of that was really interesting!), but the feeling of staying loosely connected to people’s everyday lives.

So here’s a bit of mine, all in one lump.

I run an MS support group. We’ve got our next meeting coming up soon — guest speaker included — and another more social-but-still-serious catch-up at the end of July. (Also with a guest speaker, keeps things interesting.)

Behind the scenes, there’s a lot of invisible work that goes into it — sending emails, arranging speakers, doing monthly reports for the MS authority here, being available to talk to people living with MS or those supporting them. Some days I spend the whole morning on the phone and that's fine by me, everyone matters, people matter. And yes, I may have brought games into the meetings… and yes, they’ve stuck. So I take the blame for that one, ha! really, I'm so happy others love word games and puzzles  too!

I’m also guest speaking at a local community group soon, still doing my little bit to help raise awareness about MS.

In the creative department, I’ve been working (slowly but persistently) on a series of children’s books - including a curious little pig and a story with plenty of magic and sparkly sprinkles. The publishing process has been… well, character-building.

I did manage to get an ISBN (go me!) - right before I accidentally saved my book as a picture file instead of a proper document. I’ve lost some hair over that. That book will be published. Eventually. Possibly with a small shrine to backup folders.

The MSMS podcast is still alive and close to my heart - I’ve just been running behind (life, energy, the usual chaos), but new stories are brewing, and they’ll make their way out when they’re ready.

In between all that: I see my personal trainer twice a week, attend the odd medical appointment, and occasionally (rarely) get my hair or nails done. I’m still karaokeing too — my hubby says I have fans. I think people are just kind.

What have I learnt this last month or so?

That juggling doesn’t mean you’re failing — it means you’re trying. That achievements still count even if they take forever and come with a side of swearing. And that showing up — flustered, late, or half kooky — still matters.

Just gave myself a pat on the back… thinking I might go ahead and declare myself a national treasure 🤣😆🤣

I’ve said this all online, just differently – but it’s my life, my blog and I’m sharing here too!!

All for now – live your life well ok 😊 

On stem cells ... (25 May 2025)

This is a post I wrote on my personal social media pages recently: and it's a serious one ...

Recently there’s been an upswing in posts on social media about overseas stem cell treatments (not HSCT).

Some of these overseas procedures begin with unblocking veins - a technique I understand to be known as CCSVI - which generated a lot of attention around 10 years ago – so I want to share a podcast episode that may be helpful to anyone currently weighing their options.

In the episode, Vicki shares her experience of undergoing CCSVI in Australia (she was a registered nurse at the time) - a significant part of her MS journey. Of course it will be better if you listen to the entire episode but listening from around the 15 to 31 minute mark, you’ll hear her entire CCSVI journey: copy/paste this link to listen

https://www.buzzsprout.com/2247071/episodes/16461366

Some overseas operators today offer a version of that CCSVI procedure, adding to it with stem cell injections. Others offer stem cells alone, sometimes bundled as a package including accommodation, physiotherapy, or wellness treatments.

Of course, MS is incredibly personal and complex. Each of us makes our own decisions - as we should. It’s our body, our condition, and our right to choose how we manage it: medication, therapies, or procedures.

That said, I do have concerns around the quality of information available when making those decisions around ‘stem cell’ procedures. I care very strongly about informed choice.

Ultimately, results from CCSVI clinical trials were disappointing, and the procedure was not found to be effective for treating MS.

MS Australia has a helpful summary of the CCSVI trials, copy/paste this link

https://www.msaustralia.org.au/.../disappointing-results...

It's the stem cell promise that draws people in. But here's the challenge: apart from marketing language, it's often really unclear how the stem cells are being used, how they’re meant to work, or what evidence supports their use in the offered fashion, for MS.

The use of, from my readings, ‘yet-to-be-determined-safe’ embryonic stem cells - and that glaring lack of transparency worries me.

You probably and I certainly know I’m not an expert, but I feel this is important to share.

PS: I was diagnosed RRMS in 1998, transitioned to SPMS around 2014, and progressing rapidly, had HSCT in Russia in 2017 – so I know how it is, I’ve lived a long time with MS and done all the researching, searching and hoping, and have taken the leap to an unconventional procedure.

We all seek hope, better options, and positive outcomes – it’s only natural when living with MS).

Please research carefully, and ask questions.

I wish everyone strength, clarity, and support - whatever choices you make, wherever your MS path takes you.

Informed choice matters. Let’s look out for each other.🩵

What if We're Already Resilient? ... (11 May, 2025)

This has been perplexing me for some time: seeing people make money by selling us things we don’t need.

It’s clever. It’s also marketing.

And the number one unnecessary “product” being sold right now?

Resilience.

So, what’s this resilience fad about?

Resilience has become a trendy concept.
People are offering courses, programs, and “training” – suggesting it’s a skill we lack, something we need to learn or develop.
We're told it takes work. That it can be taught.

And that we might like to pay to learn all about it.

But stop, let's take a minute ...

What if we don’t need to build resilience?

It’s human to seek growth, to seek to understand, to seek improvement.

That’s how we’ve built the world around us - and it came naturally, that constant striving for 'better'.

The search for improvement is part of being human.

But it's become a marketing tactic.

Resilience isn’t something we need to learn.

It’s something we already have.

When disaster strikes – whether it’s illness, trauma, or a natural event – we respond. We don’t rehearse. We don’t train for it.
We just act. We help each other. We endure. We adapt.
We always have.

Resilience isn’t rare – it’s universal.

Of course, there are exceptions. Some people – through no fault of their own – may find it harder to access or express resilience, especially when facing severe trauma, cognitive challenges, or complex life circumstances. Acknowledging this doesn’t make resilience any less universal - it just reminds us to hold space for each other with compassion, not comparison.

Resilience exists in nature. In animals. In people.
It’s a natural part of being alive.

What’s often being sold as “resilience” is … something else:

A performance. A mask. An outdated idea that being resilient means hiding our feelings or never breaking down.

Our emotions don’t need fixing.
They’re part of being human – the joy of success, the ache of loss, the warmth of love, the heaviness of grief.
Feeling things deeply doesn’t make us weak.

And it doesn’t mean we’re not resilient.

How we feel in any given moment, means nothing but that we are human, we feel  things.
What matters is that we continue on. That we show up. That we adapt in our own way.

Resilience is not:

• A skill to master

• A mindset to practice

• A course to pay for

• A checklist, mantra, or slogan

It’s already there, in each of us.

Those selling resilience courses may have lived through great difficulty – and that’s valid. Their stories may inspire us. But their life experiences cannot be transferred to us through a workshop or a workbook.

We can admire people who’ve come through hardship.
But let’s not confuse admiration with purchasing power.

And that phrase we hear in tough times – “what doesn’t kill us makes us stronger” – maybe it rings true for a reason.

Because resilience isn’t something we gain from a program.
It’s something we find in ourselves – again and again – when life asks it of us.

So, the next time someone tries to sell you resilience, remember this:

You already are.