CRPS my Journey: Being a Warrior: Living with CRPS, Chronic Illness, Depression and Unstoppable Hope

It’s been a while since I posted on my blog, as I’ve spent the past year focusing more on getting my book finished. But more on that later.

Lately, I’ve been thinking a lot about what it actually means to be a warrior. When you live with a chronic illness, calling yourself a warrior—rather than a patient or sufferer—becomes a choice. Some people think it’s just denial or a way to use positive thinking to feel better.

The reality is that, while positive thinking plays a part—even positive reinforcement—calling yourself a warrior when living with an incurable disease means much more. Let’s break it down:

Being a Warrior – Positive Thinking

The dictionary describes positive thinking as: "a mindset where one focuses on the positive aspects of situations."

Now, living with an incurable chronic illness like the Suicide Disease (CRPS), you might ask: what’s positive about that?

Being a warrior means finding moments you can define as positive within your circumstances. It’s about looking for glimpses of hope in the chaos. That might mean a day when the pain is less, or a good chat with someone where you don’t feel judged or disbelieved. It could mean spending time with my kids on the weekend instead of working.

It might even be holding onto the hope that a cure may be found someday—preferably in our lifetime. And even if not in ours, that a cure is still found, so others may be spared the brutality of this disease.

Positive thinking isn’t denial. It’s not pretending that there’s nothing wrong with my hand or my body, or that it’s all in my head. That’s denial. And we already have enough people telling us that—without adding to it ourselves by believing their uninformed opinions.

I’ve always stood by the importance of pushing your limits responsibly—listening to your body. Denying I have a cruel, life-altering disease is foolish. Stopping treatment because I want to “think positive” and “think myself healthy” (I’m not talking about faith—that’s another discussion) is not only irresponsible but also undoes progress and creates more complications.

Positive thinking is about consciously choosing to focus on good things, reframing negative thoughts, and visualising desired outcomes. Instead of dwelling on mistakes, you learn from them and look for ways to improve.

So, I try not to dwell on the bad days. I take each day as it comes and learn from experience. If I know Chucky (my CRPS hand) will flare up after certain activities, I try to reduce the aftershock by using coping strategies and making time to rest and recover. I also ask myself: Is this task really necessary? Can I delegate it?

Positive thinking is about finding ways to move forward while protecting Chucky and reducing pain—without compromising the quality of my work, or my life. It’s about setting goals and figuring out how to achieve them while navigating my limitations.

It’s a mindset that improves mood, reduces stress, and helps sustain well-being.

Being a Warrior – Positive Reinforcement

“Positive reinforcement is a technique used in behavioural psychology to increase the likelihood of a desired behaviour by adding a desirable stimulus.”

It means identifying a behaviour you want to encourage and then offering a positive response—like praise, a reward, or a privilege—when it occurs. It’s a simple concept, but its power lies in consistency and timing.

For example:

• A parent might praise a child for helping with chores, which increases the chances they’ll help again.

But what does positive reinforcement look like when you’re living with a chronic, invisible illness like CRPS—when bad days outnumber the good?

🟠 Sometimes, it’s allowing yourself a rest day after pushing through pain—no matter how small the task achieved.

🟠 Sometimes, it’s placing a heat pack on a burning hand to ease the fire that is your daily reality.

It might not sound like much to others, but when you live with constant pain and bone-deep exhaustion, a warm beanbag or a guilt-free nap can feel like heaven. It’s not luxury—it’s survival, wrapped in compassion.

And sometimes, that’s all it takes to rise again tomorrow.

Being a Warrior – Dealing with the Cards You Were Dealt

Being a warrior means learning to live with the cards you’ve been dealt.

Having an incurable disease isn’t something anyone chooses.

But it’s not something you can outrun, either.

🌀 You must face the storm.

🌀 You can't sidestep it.

🌀 You can't close your eyes and wish it away.

🌀 You can't pretend it’s not real.

Well, you probably can—but denial doesn’t change the facts.

Chronic illness doesn’t follow any rulebook. It doesn’t ask permission.

It doesn’t care about your calendar or your dreams.

It just… arrives. Uninvited. Unrelenting.

But here’s the thing:

You don’t have to play fair to survive—you just have to keep playing.

Being a warrior isn’t about bravado or heroics.

It’s about acknowledging what you're up against… and facing it anyway.

Even if you’re scared. Even if you’re exhausted. Even if you don’t know how.

Because that—that’s what makes you a warrior.

Being a Warrior – Choosing Hope

Choosing hope means believing in a better tomorrow, even when today feels unbearable.

It’s about recognising the darkness and lighting a candle anyway. Hope isn’t naive—it’s brave.

It’s what keeps me going when my body wants to give up.

Some days, hope is all I have. Some days, I dig deep and remind myself of all the times I made it through when I thought I wouldn’t.

It’s choosing to keep showing up—for my kids, my wife, and myself. It’s believing that there is still purpose in this journey, and that pain doesn’t get the final word.

Being a Warrior – Fighting Back

This is one of the most misunderstood parts of being a warrior.

Fighting back isn’t about aggression.

It’s about refusing to give up. Saying no to despair. Challenging the limitations that society—and sometimes doctors—place on you.

I fight back by advocating, raising awareness, and refusing to be silent.

I fight by trying treatment after treatment.

By showing up at the gym on good days. (well my home gym)

By resting—unapologetically—on bad days.

By living with intention, not just existing.

Being a Warrior – Being Real

This part is vital.

Being a warrior isn’t about pretending everything’s okay.
It’s about being real with where you are.

It’s allowing yourself to grieve, to feel, to cry, to rage.
It’s about saying, “Actually, today is hard.”

It’s the courage to take off the mask. To be seen.
To let others walk with you, even when you feel broken.

There’s strength in vulnerability. Power in truth. Healing in honesty.

One thing I’ve learnt about being a warrior: you don’t have time to be pretentious.
Yes, we fake smiles. Yes, we act okay. We hide the agony to avoid judgement.

But warriors don’t diminish what they face.
Behind the fake smile is someone fighting a battle they wouldn’t wish on anyone.
The pain, the burning, the depression, the anger, hope, failure, struggle—it’s all real.

So when a warrior snaps, it’s not always about you. (well sometimes...but not always 😉)
It’s because the pain is so consuming, it strips away every mask—until you're naked, inflamed, and on your knees… still fighting.

Warriors often feel they can't be real around others. So when they finally break—people see them as rude, not realising what it took to get there.

Being a Warrior – Does Not Mean You Stop Being Human

Being a warrior humbles you. It doesn’t make you invincible.

We don’t take pride in what we’ve achieved because we know the battle’s never over—not until the final trumpet sounds.

People often tell me my story will inspire others. I hope so. But my journey has just begun. Four years of living with CRPS is nothing compared to those living with it for 10, 20, 30 years.

I’m grateful for what I’ve learnt—for still being able to stand. But I still feel every pain, every burn. I still get mad. I still get low. I still feel like giving up.

But by grace—I keep going.

Some of my fellow warriors are my heroes. Just for still fighting.
But even heroes are human.
Today, I may be someone’s hero. Tomorrow, I may need one.

Being a Warrior – Means It’s Okay to Not Be Okay

These past two months, I’ve struggled.
For the first time in four years, I’ve felt disheartened, perhaps even depressed.

Every second month for four years, I’ve seen my psychiatrist. She always asks the same:
“How’s your mood? Are you coping? Should we adjust the meds?”

And I always answered:
“I’m fine. I’m not depressed. I can still face my demons.”

But this time was different. I couldn’t say that.

Why? Because I’m tired. I’m bleeding. I feel at times overwhelmed, like it’s too much.
Not something we easily admit... but maybe we should.

Maybe if we talked more, understood more, outcomes would change.

There’s no shame in asking for help. If we were more honest, there might be fewer suicide attempts.

I have empathy for those who feel suicide is their only option.
It’s easy to judge from the outside. I used to be one of those judgemental idiots.

But there’s nothing cowardly about it. (I am not saying it is okay, nor am I condoning it. None of us know the battles that person face and how much guts and determination it must take to end your own life)

People often feel utterly alone—like society has turned its back on them. And when pain becomes too much to bear, they break.

I had to learn that it’s okay not to be okay. A good friend reminded me of that when she shared this song with me. It perfectly sums up how I felt at that moment:

🎵 Song: “I Am Not Okay” – Jelly Roll

"I am not okay

I'm barely getting by

I'm losing track of days

And losing sleep at night

I am not okay

I'm hanging on the rails

So if I say I'm fine

Just know I learned to hide it well

I know I can't be the only one

Who's holding on for dear life

But God knows, I know

When it's all said and done

I'm not okay

But it's all gonna be alright

It's not okay

But we're all gonna be alright

I woke up today

I almost stayed in bed

Had the devil on my back

And voices in my head

Some days, it ain't all bad

Some days, it all gets worse

Some days, I swear I'm better off

Layin' in that dirt

I know I can't be the only one

Who's holding on for dear life

But God knows, I know

When it's all said and done

I'm not okay

But it's all gonna be alright

It's not okay

But we're all gonna be alright

Gonna be alright

Gonna be alright

I know one day

We'll see the other side

The pain'll wash away

In a holy water tide

And we all gonna be alright

I know I can't be the only one

Who's holding on for dear life

But God knows, I know

When it's all said and done

I'm not okay

But it's all gonna be alright

It's not okay

But we're all gonna be alright

I'm not okay

But it's all gonna be alright:"

Warriors can’t always be strong. That’s not sustainable. Everyone faces storms. What matters is how you face them.

Being a Warrior – Begins with a Mind Shift

Being a warrior begins with a shift in mindset.

It’s about courage, resilience, and a commitment to overcoming challenges—inside and out. Not brute strength, but mental fortitude and a proactive spirit.

Warriors are driven by something bigger. Often, it’s the desire to serve, protect, or inspire—even while suffering.

When I look at fellow warriors, I see people encouraging others in the middle of their own flare-ups.

Being a warrior means choosing to shift your mindset. Your struggle doesn’t have to be a meaningless burden. It can become your motivator—and a tool to help others.

Here are some warrior traits, and how to develop them:

🛡️ Courage and Resilience
Warriors face adversity. They find bravery in fear and grow through challenges.
• Push beyond your comfort zone and confront your fears
• Learn from setbacks and develop strategies to recover.

🎯 Discipline and Focus
They stay focused and build routines that support their goals.
• Establish daily practices and boundaries that support your goals

🧠 Mental Toughness

They withstand pressure and manage stress.
• Practise stress-management and emotional control. Try to stay focussed under pressure.

🌱 Service and Purpose

They live for something greater than themselves. Whether it's serving others, protecting those they love, or fighting for a cause—they don’t live only for themselves.
• Set Clear Goals by defining your values and your mission.
• Serve Others by contributing to your community—even when you're struggling.

🔄 Adaptability

Warriors are not rigid. They know adaptability is crucial. Life throws curveballs, and being able to pivot is part of surviving and thriving.

·        Stay Flexible by recognising when you need to adjust your plans or approach.

🤍 Humility and Self-Awareness

Despite their strength, warriors remain grounded. They’re self-aware, know their limits, and are open to learning.

·        Stay Humble by being open to feedback and growth.

·        Live in the Present by focusing on the now—avoiding the trap of past regrets or future worries.

 

But what if I can’t live up to this? What if I feel like I’m failing?

That doesn’t make me less of a warrior. It makes me human.

I don’t have to be perfect. I just have to get back up—one breath, one step at a time.

These traits aren’t rules. They’re inspiration.

The Merriam-Webster dictionary defines a warrior as:

“A person engaged in some struggle or conflict.”

And isn’t living with a rare disease exactly that?

We fight battles on all fronts—physical, emotional, mental, financial, spiritual.

Our bodies are in conflict. That overflows into everything.

So when a warrior says, “I’m not okay”—that’s okay.

No one gets to judge. They don’t know the journey.

Some days, just getting out of bed is a victory.

And even when it’s not easy, we do it. Because not doing it? That’s worse.

Rest if you need to.

But at some point, get back up—and fight.

 

Hope, Humour, and a Hint of CRPS

So, I did a thing. I published this on my blog in April 2025.

I decided to write a memoir. Not just any memoir—this one’s about living with Complex Regional Pain Syndrome (CRPS), which, if you’re new here, is also lovingly (read: horrifyingly) referred to as The Suicide Disease. Fun times, right?

But before you back away slowly, Hope Undivided: CRPS – Memoirs of an Ordinary Man Living with a Not So Ordinary Disease isn’t just a 300-page pity party. It’s raw, it’s honest, occasionally tear-jerking, often weirdly funny, and deeply personal. It’s a book about pain—but more than that, it’s about faith, survival, parenting, frustration, and the fine art of not swearing at medical professionals. (Too much.) It's about HOPE and the will to never back down.

We’ve reached 16% of our goal on the BackaBuddy campaign, which I’m incredibly grateful for. To everyone who’s donated, shared, or just sent a kind message—thank you. You’ve kept the fire going, even on the days when I felt like tossing my laptop out the window and eating cereal for dinner again.

But here's the deal: we still need R41 800 to cover publishing and printing costs. Think editing, layout, cover design, proofreading, coffee for the writer, coffee for the editor, and therapy sessions for both. (kidding)

The plan is to launch the book this November—fittingly, CRPS Awareness Month. That gives me 2 months to wrap up writing, editing, panicking, and proofreading this beast into something worthy of your bookshelf (or bathroom magazine rack—I’m not picky).

So, if you haven’t yet supported or shared the campaign and you’d like to be part of something that brings light to an invisible battle… now’s your moment. Every donation, every share, and every “You’ve got this!” helps bring this message of stubborn, unreasonable, ridiculous HOPE to life.

Let’s get this book into the world. With humour, heart, and hopefully no typos.

👉 Support or share the campaign here: https://www.backabuddy.co.za/campaign/crps-awareness

https://youtu.be/Qop5XLgwkNc?si=OhwHcJW49yvE5mnc