I am truly humbled by this moment.

From excitement to a touch of anxiety, it still feels surreal holding Hope Undivided in my hands. This journey began more than forty years ago, but over the last four, it has pushed every boundary I thought was set in stone. It broke me — only to rebuild me, moment by moment.

This book has been in the making for four years… yet, in many ways, the journey is only beginning.

To everyone who believed in me, motivated me, and stood by me while I poured my pain and soul into these pages — thank you.

To Teresa, who carried me through sleepless nights filled with tears, anger, and relentless writing. To Malan and Liam, who had to endure a dad not always present, even as I fought my way back to them. And to every single person who played a part in this journey — in whatever way — thank you from the bottom of my heart.

This book is for you.
For everyone searching for light in the middle of their storm.
For everyone who still dares to believe in Hope.

(📖 Now available on Amazon KDP (internationally)
South African release coming soon — details below in first comment👇

📖 Hope Undivided is now available on KDP Amazon (internationally), and will soon be available through:

·        IngramSpark (internationally)

·        Exclusive Books (National)

·        Bargain Books (National)

·        Wordsworth Books (Western Cape & KZN)

·        Van Schaik Bookstores (National)

·        Protea Bookshop (National)

·        Airport Retail Concessions (National)

You can also pre-order directly from me, and by the end of the year, it will be available on Takealot.

CRPS My Journey: Chapter 31 - Back-A-Buddy: Hope Undivided!

Over the last couple of years I have documented my journey with CRPS through my blog. 

In 2021, my life changed forever when I was diagnosed with this rare, excruciating neurological condition, Complex Regional Pain Syndrome (CRPS), often referred to as the “Suicide Disease” because of the relentless, unyielding pain it causes.

For months, I felt isolated, misunderstood, and defeated. But somewhere in the middle of the chaos, I picked up a pen and started writing — not to escape the pain, but to give it a voice.

Today that voice, that started with this blog, became a memoir: Hope Undivided – Memoirs of an Ordinary Man Living with a Not So Ordinary Disease. A raw, brutally honest account of what it’s like to lose the life you knew, and still find reasons to get up, love fiercely, and hope anyway.

To bring this book to life I need everyone's support. I have created a Back-A-Buddy campaign to help me cover the necessary expenses to have my book published.

This campaign isn’t just about me. It is about getting this book into the world — not for fame, but for purpose. For awareness. For the countless others living in silence with CRPS or other invisible illnesses. For the spouses, parents, and children who walk this road beside us.

Your support will go toward:

Publishing and printing costs (Professional editing and proofreading, cover design, layout, ISBN, first run of books)

CRPS awareness initiatives tied to the book’s launch (Fund CRPS awareness projects and educational talks.)

Translation and accessibility efforts (including audio versions for those living with disabilities)

Distribute my book to hospitals, doctors, and people who need it most.

Stay mobile and present for my wife and two sons—who are my reason for everything.

My dream is simple: to reach those who feel unseen. To show them they’re not alone. And to help shift the conversation around pain, masculinity, chronic illness, and resilience. There is always HOPE!

If you have followed my journey, and Hope Undivided resonates with you — whether you’ve battled chronic pain, supported someone who has, or simply believe in the power of stories to heal — I invite you to partner with me.

My goal is to launch my book in November as this will fall together with CRPS Awareness month.

🎁 Rewards – Thank You for Helping Share This Story

(Every donation matters. Whether it’s a donation, a share, or a message of encouragement—you are part of this journey. To show my thanks, I’ve created a few ways to say thank you.)

💛 R50+ | Gratitude in Ink

• A thank-you email and shoutout on social media
• Name on the digital Supporters Wall

📘 R250+ | Signed with Hope

• All of the above
• Early access to the eBook
• Digital quote card from the book
• Name in the “Hope Undivided Heroes” section

📦 R700+ | Bound by Courage

• All of the above
• Signed paperback copy (SA only)
• CRPS awareness bookmark
• Behind-the-scenes video or voice note
• Invite to a live online Q&A

🌟 R1500+ | Carriers of the Flame

• Everything from earlier tiers
• Name or dedication on the Legacy Acknowledgement Page
• Second signed copy donated in your name
• Option to include a 20–30 word message in a digital tribute section

🙏 Final Words

Your support means more than just bringing a book to life. It’s helping me give CRPS a voice. It’s reminding people that even in suffering, stories matter. People matter. Hope matters.

Let’s publish Hope Undivided together.

With gratitude,
JJ Ritter

Short description of Hoped Undivided

What happens when your life’s path takes an unexpected turn—when dreams shatter, pain becomes a constant companion, and every day is a fight for normality?

In these raw, candid memoirs, JJ Ritter shares his powerful journey living with Complex Regional Pain Syndrome (CRPS), known as the "Suicide Disease." Through profound honesty, sharp wit, and deeply personal reflections, JJ explores the turbulent waters of betrayal, resilience, family bonds, and redefining hope.

This book isn’t about finding a cure, nor does it claim to have all the answers. Instead, it’s an honest invitation to walk alongside one ordinary man's extraordinary journey through chronic illness—an inspiring testament that hope, strength, and purpose remain within reach, even in life's most painful moments.

Even when your body betrays you, your spirit doesn't have to.

If you've ever faced a moment that forced you to question your strength or wondered if you're alone in your struggles, this story is for you. Because no matter the challenges we face, one truth remains clear: life, with all its imperfections, is still a journey worth taking.

 

 

CRPS My Journey: Chapter 30 - Always show up!

"You are what you do, not what you say you’ll do.” - -Carl Jung

'SHOWINGUPNESS" describes the degree to which reliability, empathy, care, intentionality, thoughtfulness, and embodiment of “just being there” that is consistently demonstrated by someone. It speaks to one’s willingness to put our loved ones (and/or ourselves) first, but people with great levels of SHOWINGUPNESS do so willingly and gladly. It requires vulnerability—to show others and ourselves that someone or something really matters to us. It also requires sacrifice—it might mean having to delay, lose, or let go of another activity, person, or thing that we care about, when doing so helps us to better prioritize showing up in a truly meaningful way. - Kaitlin Kindman, LCSW

It has to do with life and character and integrity, and it is something that I think we all need to hear and reflect on. Showing up means being there for others, regardless of who you are or what your beliefs and circumstances are. It is human nature to wait for and expect others to show up, but when last did we show up for someone else. It is like forgiveness. Why do we forgive others, when they still wrong us? We do it to set ourselves free. But unlike forgiveness, showing up not only builds or show our character, it also empowers and motivate others.

Something that I have learned, especially when my kids were born, was to be present. It is so easy to get busy with things, whether it be work or social responsibilities, that we often miss out on things that really matter. That extra 15 minutes spent at work to get stuff done that could have waited till the next day, while your kids are excitedly waiting for you to pick them up from school. Or that project in the garage that you just need to finish, as you only have the weekend to do it, while your family have to keep themselves busy. I am not saying that these things do not matter or is not important, but we need to get our priorities straight. I have made myself guilty of this many times.

I remember when we were kids, my mom often used to say to my dad, "Nobody is going to raise a statue in your honour", when he worked long hours away from the family. Hours that he did not always get paid for, but that he still put in due to his strong work ethics. And although his heart was in the right place and he had these strong work ethics that he also installed in us as his kids, those were hours that he would never get back. Time with us as a family that was lost for ever. 

Unfortunately, it has become virtually impossible for people nowadays to not put in extra hours, or not have a second or even third job, just so that they can just make ends meet. That is the sad truth. Yet, in our children's eyes they do not always understand why we are doing this. What they experience is that mom or dad is not showing up when they miss a game, or work late nights.

As I said, I have often made myself guilty of this in the past. So lately I have tried to show up as much as possible, whether it be a hockey or rugby match, golf, a school play...or just taking them to birthday parties. I have even started to take my kids with me when I am busy with some project in the garage, trying to teach them skills and values, spending time with them even when I have something that need to be completed, and allowing them to be creative. It is not always easy, and it is sometimes hard to stay calm and not get irritated, but when done right it is very rewarding.

Showing up for their hockey or rugby matches are crucial. Whether they are playing, or sitting on the bench as a reserve doesn't matter. What does matter is showing up either way to support them. Those are the moments that they will remember, the times that you have been there, having them know that they are the most important people in your life.

Zoey, thank you for showing us the value of showing up

Another way that I have experienced lately that we need to show up, is not only when they fall ill, but also when they experience hurt and loss. A couple of days ago Zoey, their dog became ill. Watching the kids, you could feel their own helplessness, how they were trying to cope with this, while trying to make sense of it all. I had to take Zoey to the vet, and the prognosis was not good. She had started with liver failure, and there was nothing that could be done for her. I stood before one of the hardest decisions that I had to make in a very long time. I could bring her home with medication, but she would suffer until she eventually passed away, or I could have her euthanized so that she would not live the rest of her life in constant pain, eventually ending in a painful death.

I phoned Teresa, and we decided that we were going to do the humane thing, not matter how hard and heart-breaking it was, and that we were not going to bring Zoey home first. We wanted the kids to remember her as she was, and not as she had become towards the end. We would however bring her home afterwards and give her a proper burial. 

Standing there, with my niece at my side, and with Zoey still trying to be strong for me, her person, I realized that even in her pain, she tried to show up for me. And then it hit me, no matter how hard it is going to be, I could never leave her alone at the end to face this alone. There was nothing to think about. I had to show up. I wanted to show up, for Zoey, and for the kids, as she has always been there for us. So I stayed with her till she drew her last breath. It was difficult. It was gut wrenching. But I know that right at the end she was calm and that she knew that she was loved. And as much as this whole experience broke me, I know that in life there are many people that do not have that opportunity to spend their last moments with those that they love the most.

We took Zoey home, and put her in a safe place until I could go fetch the kids. Mufasa, the cat, could feel that something was not right, and when we opened the back of the car he immediately jumped in, something that he never does. He walked towards Zoey, lying wrapped in her blanket, and sniffed at her as if to say his last goodbyes. Then he came and sat next to me with his head against me as if to try and comfort me, while looking for comfort himself.

When the kids got home, we sat them down to give them the sad news. They were completely broken, and started dealing with this in their own way. The first thing that Malan asked was whether Zoey was alone at the end. I am so glad that Teresa were able to honestly reassure him that both Sharné and myself stayed with her, and held her till the end. And again I realised that in his mind, through all the heartache and sorrow, his dad showed up. Perhaps it does not soften the blow that much, and it definitely does not take away the pain, but it does make him feel safe knowing that someone was there for Zoey when she needed it the most.

We offered the kids an opportunity to go and say their final goodbyes, although her spirit has already left her body, but they did not want to stay for the burial - which was fine. All the while Mufasa was sitting on the tree house, watching what was happening in front of him, dealing with this loss in his own way. Even animals do. Yes, Mufasa and Zoey did not play with each other, in actual fact, Mufasa tried to avoid Zoey as far as possible, but I know that he felt the loss just as much as we do. And he knows that his people is hurting and also need his comfort - so he showed up.

Neck Operation

It has been 3 weeks since my operation and just a quick feedback. So the operation went well, and the doctor is pleased with the outcome. As I was waiting for the theatre, he came by to remind me that the main focus of the operation is to relief pressure and prevent paralysis. Should I be without pain afterwards, that would be a bonus. When he opened up, the spinal cord was grey in colour due to the compression. The moment that he removed the disk, the pressure was released, the spinal cord relaxed and returned to a pinkish colour. The operation was done just at the right time. Should we have waited till next year it might have been too late. The fact that I had no mobility symptoms (apart from the constant pain) was a blessing in disguise. 

Hesti asked me how do I felt about the fact that the operation, that we have tried to avoid for three years, was done. In hindsight, knowing what I know now, I am thankful that I was in the position where it still could be done. Above all, the Lord showed up in an amazing way by preventing what should have been the inevitable outcome. The fact that I had no mobility issues, despite what the MRI showed and the actual pressure under which the spine was, was only the Lord's providence. We often are so focused on the trials and tribulations in our lives, that we often do not see what the Lord is protecting us from. I should have been in a wheelchair, yet I showed no signs in mobility loss. This was not by my own greatness, but only by God's grace.

How do I feel after the opp? Better than expected. Yes, my neck is sore at the back, but apart from sensitivity around the wound at the front of my throat, I do not really have pain at the front of my neck. At the back it does feel at times like the skin has been torn off, or that that my neck is burning, and then there is the extreme pain. Did the CRPS spread to my neck? Well only time would tell. At this point I am not ready to jump to that conclusion yet, as the symptoms are still in line with what is to be expected from having your neck and organs bend and pulled in all directions. One thing to remember is that due to the compression before the operation, my muscles and tendons has "shrunk" or gotten lazy, so with the fusion and the spacer, and the decompression, my spine is "longer" again, as it should be. This means that all those muscles and tendons that became so lazy with the compression, is being stretched now to regain its intended position. So yes, what I am feeling at the moment is absolutely normal. Also the fact that Chucky did not flare up, but behaved himself, do somewhat reassure that the possibility that the CRPS may have/might still spread to my neck seem to be minimal - which I am very grateful for.

The issue with living with Chucky and his antics for so long is that there is a good and a bad side to this. The good thing is that you learn to live with and through extreme pain, and learn how deal with the pain. The bad thing is that you learn to live with and through extreme pain, and learn how deal with the pain. So although you have learned to recognize pain and flare-ups and have an arsenal of coping mechanisms, it is easy to just push through the pain that present in different areas of the body due to how "normal" pain has become in your life. And this is then where the line between referring pain (pain that you feel in a different part of the body as where the injury is) and CRPS pain can sometimes become blurry. 

So one of the coping mechanisms that I have learned, is to give it time and to stay level-headed - not to put the cart before the horse so to say. I cannot control everything in life, but I can focus on the here and now. I can focus on keeping Chucky calm, while focusing on recovering from a neck operation, without worrying about what may or may not be in six months from now. And if there are little things that present itself, that tend to point towards what we dreaded might happen...well then we deal with that as it happens. 

For now, I am just happy to know that paralysis is off the table, that Chucky has not flared up, and that, although extremely sore, there is a short term explanation for that, so that we can work at getting better. It still looks as if I have two Adam's apples and at times feels like I am swallowing stones, but that is due to the trachea, veins, vocal cords etc. that had to be pulled away so that they could get to the spine. This will still take a while to heal, and so will the temporary raspy voice that it left me with (Dysphonia).

Thinking back at the operation, one of the biggest blessings was experiencing friends and family showing up in support. Not necessarily in showing up in person at the hospital, although some did, but having my back in many ways. With a disease like CRPS, people often feel outcast and alone, leading them to contemplate suicide. If they only had people showing up when they needed it most. 

Teresa went with me to hospital, and stayed till long after the operation. She showed up - as she always does - which meant the world to me. I asked her to stay home over the weekend, but she drove 60 km every day to be with me. For many CRPS warriors that I talk to, this is something that they often long for, but that is non-existent for many of them. But not only that. Even having a doctor or medical professional standing up for them, is often only wishful thinking on their part. 

I was privileged with Dr King and his team, and how he especially showed up. He visited me 5 times from when I was admitted till when I was discharged to make sure that not only the operation itself went well, but also that the CRPS was contained, reassuring us throughout that he did and would do everything humanly possible to protect Chucky and prevent the spread of CRPS. How often do we complain that doctor's visit us only once or twice over a weekend in hospital, if we are lucky? I've been blessed. And he did not only show up for me, but also for Teresa in the way that he treated her, spoke to her and supported her through it all. 

Another person that showed up, was Hesti, my physio. She was not on hospital duty that weekend, but she showed up - physically. As the nurses were turning me after the operation, I looked up and who was looking through the curtain? Hesti. She came to check in on me and see if the operation went well, and to hear how Chucky was handling it. And yes, I could actually confess that even Chucky showed up, which in itself was a great blessing. I would not want Chucky flaring up, while going through an operation like this.

As much as there are people in our lives that do not show up when we need them, we should not forget those that do show up and that want to show up. These are the ones that gives us a new perspective and hope on life. It is often much more difficult to show up, than it is to just stay away. If I am not in the mood for people, it is much easier to stay away from my colleague’s farewell party, than blessing him with showing up despite how I feel. If my son has a rugby match, and the possibility is great that he might stay on the bench and not even play, it is much easier to justify not showing up because I am not allowed to drive for two weeks due to an operation and the fact that I am still very sore and not that mobile. It is a totally valid reason for not showing up, and besides he might not even get the chance to play. Yet, putting aside my own issues, dressing warm, taking my pain meds, taking an Uber or calling someone to take me to that match in order for me to show up for my kid, despite my own discomfort, has much more value and meaning in my child's life - and also in mine.

Today, is all we got. Yesterday we can never have back. Tomorrow may never come. Always ALWAYS show up...no matter how uncomfortable you may feel.

Years ago Al Denson sang a song, "He's watching me" about a blind father that showed up when his child needed it most, and I want to leave this with you:

He's watching me

Back in '63 my little league career had just begun

I had two left feet yet I believed

That I could rise above

I watched the bigger kids

And prayed the coach would put me in

But I sat on the bench

Well, my biggest fan sat in the stands

For each and every game

And though he was blind, he listened for

The coach to call my name

"Please, coach, let me play"

 

You see my dad, he's watching me

Yes, my dad's so proud of me

Even though my dad can't see

He's watching me

You see my dad, he's watching me

Yes, my dad's so proud of me

Even though my dad can't see

He's watching me

 

Well the weeks went by

And summertime was almost at an end

It was a special day, I just had to play

May not get this chance again

The coach put me in

And underneath the stars that night

I got my first hit

When I crossed the plate

Tears on my face, I looked up in the stands

I nodded to the empty seat

That used to be my dad's

The coach said "Sorry, son

Your daddy wasn't here to see"

And I said "Yes he was"

I guess you didn't hear the news

My dad, he passed away

And I know Jesus touched his eyes

And for the first time

 

My dad, he's really watching me

Yes, my dad's so proud of me

Up in heaven dad can see

He's watching me

You see my dad he's watching me

Yes, my dad's so proud of me

Now in heaven dad can see

He's watching me

Up in Heaven daddy sees

He's watching me

Oh, he's watching me

 

Oh, daddy

 

 

Always, ALWAYS show up!

 

 

CRPS My Journey: Chapter 25 - Dear Chucky...

 

Dear Chucky

Hey Chucky, how are you? Starting this letter with "Dear Chucky" sounds more like a “Dear John” letter, or perhaps a letter to “Dear Abby”. Yet it cannot be farther from the truth.

Let me start off by saying that I am sorry. Sorry that I took you for granted. This was not my intention. In actual fact, I counted so much on you, that I may not always have had your best interest at heart. Sorry that I have allowed you to be in the state that you find yourself in today. You did not ask for this – neither of us did. You did not deserve this. All you ever wanted to be, was part of a family, part of the rest of the body. Chucky is a name that I gave you because you revolted against me…or so it felt. It took me a while to realize that you were also only trying to make sense of what was happening to you, just as I was. It could not have been easy for you to wake up one morning with excruciating and constant pain and burning, feeling totally cut off from the rest of the body – cut off from your control center, the brain. You must have felt so alone, so isolated, so angry, so rejected, sending out signals without receiving confirmation back that everything is safe. You were like Onoda, the man that hid in the jungle for 30 years not realizing that the war was over, only to return in 1974 and be told that the war has ended 29 years earlier. I can just imagine…as that was how I felt. I felt like the father in the parable of the lost son (Luke 15:11-32). It felt like you have turned your back on me, deserted me, hated me. And it made me sad, and angry, and frustrated.

I remember times when you were so angry…angry at me, angry at the rest of my body, angry at the world – hurting yourself, hurting the rest of the body, rebelling in the worst possible way. And that just fueled my own anger, to a point where I wanted to cut you off from my life…literally. It felt at times that it would be better to live without you, than to go through this pain every day. I mean, you already felt disassociated from me, as if you were far away, cut off from the rest of my body. It felt like you had built this whole personality for yourself, with one goal…to make my life miserable and to punish me for allowing you to become this way. I tried talking to you with empathy, I tried yelling, cursing, swearing, ignoring you, but it all felt like pouring fuel on the fire.

It was only after having allowed myself to mourn, with the realization that I had to forgive myself and accept my new reality, that we were able to come to a mutual understanding – declared a ceasefire of sorts, that we would not kill each other, but rather look for common ground and a way to co-exist in a symbiotic relationship – knowing that things would never be the same again. This did not take away the fear and trust issues, but it did help us to start working together towards a common goal – that was, getting a handle on what was happening to us, and learning to cope with, and manage what was happening to us. We had to realize, that we were both affected by this disease, both trapped in a vicious and never-ending nightmare, entangled in our own humanity.

Oh how I took you for granted when life was so much different. Youth has a tendency to make you act as if you are invincible. “Protective clothing are for those that are irresponsible or clumsy, and why walk all the way back to the workshop to get the right and proper tool for the job, when you can use your hand to hit that beam into place.” Have I only realized that I was the irresponsible one, teaching others to wear the proper protective gear, telling them to do like I say, and not like I do. And yes, although the primary cause of this disease started with years of neck pain, you were the unfortunate one to suffer as a result, having undergone an operation to rectify a secondary issue that was caused by trauma, a trigger finger, from not protecting you enough as I should have. Unfortunately regret and stubbornness are often twins, and arrogance their fuel. Have I only listen to myself, have I only taken greater care…but regret is always too late.

Yet through all of this, I have grown (we both have). I have learned to accept life for what it is and treasure every moment of it. I have learned to build safe environments - not risk free, but safe and calculated - rather than closed off defenses. I have learned that when life gives you lemons…sometimes you make lemonade, sometimes you just eat the lemon, or you squeeze it over your food or bake a cake. And at other times you through the lemon away…or you throw someone with the lemons. Life does not come with a step by step handbook, and every answer does not fit every question, nor does every solution fit every problem. Sometimes none fit, and sometimes, when you are lucky, some or even all fit. What makes the different is your approach and how you decide to deal with the issue at that exact moment in time. We cannot plan our whole lives down to the tee and have smooth sailings without storms and sharp rocks along the way.

You have taught me that, when life is at its hardest and you are at your weakest, your survival strength is at its strongest. Pain then becomes a beacon, a compass that guides you safely through the storm, even though it may not feel that way in the moment. Can you just imagine if we were making fire, and your pain did not flare up, but instead went dead silent…it would be catastrophic. I might try to get you back for all the pain and issues that you have caused me, as you would not react on what was happening. 

Nobody ever said that pain was a bad thing. It is a necessary part of life. Unfortunately, our interpretation of danger and pain got scrambled along the way. So that which is supposed to protect us, started to torment us, and our ability to differentiate between what is real pain and what is not, became totally messed up. But we did not let that get us down. It may not always be a matter of us being strong necessarily, but at times rather us surviving at all cost because we do not have the luxury of giving up. We get tired…we rest. But when we get fed-up, we cannot give up. We give up…we die. We have learned to persevere more than ever, and we are challenged every day to put our differences aside and find common ground. You may well be my Robin to my Batman, but that does not make you less important or less crucial to my being.

The meds may take away my feelings and emotions, but it does not keep me from sheltering and protecting you. And perhaps I have learned this too late in life…but at least I have learned it and try my utmost to shield you. Thanks for not giving up on me, even in those dark times when you felt so far away. Thanks for letting me know that you are still there, even in those times when the pain and burning became unbearable. Thanks for trying again and again and again, especially in those times when you rebelled and just wanted to throw everything around. Thank you for refocusing my attention to where it mattered most. Together we can overcome anything.

Your greatest admirer

The eye of the Storm

The last couple of weeks I have had some horrible flare-ups. Chucky has not been easy to deal with, and together with the constant lightning strikes from my neck down my arm, causing the same effect as when I hit my funny bone months ago, it has been quite agonizing – unbearable at times. Having not been on my meds for the past two months also did not help, as I could feel how the pain signals were becoming closer together again…and the irritability started brewing under the surface again. Being in more pain, caused me to become more tired. And being more tired, caused me to have more pain as I needed to put in more effort to count on my coping skills. To pour fuel on the fire, I over-exerted my hand the last couple of weeks by finishing projects hands on in very limited periods of time - something that I used to enjoy. I used to enjoy working under pressure towards deadlines. With Chucky, these bars are being raised. It is like taking part in a swimming competition, with weights on your arms and feet. Yes, you will still finish the race, with some resistance...and your body will feel it afterwards.

The one medication that I do however still use (Dyna Sertraline) helps me to subdue the manifestation of my irritability. In layman’s terms…it helps me not to act on my irritability and puts me in an almost limbo-like state. Things that would have infuriated me two years ago is now just “ehh”. Yes, I acknowledge that I am dissatisfied with the situation, but I do not get emotionally involved. Somewhat similar to when I was on Cymgen, but also totally different. I still feel disassociated, but instead of just not caring or giving a damn, I know and acknowledge how and what I am supposed to feel, but on a more rational level if that makes sense. For example, I would acknowledge that I am displeased and I would tell myself that I want to get angry, and should be angry…and even mentally go through all the phases of being angry…without becoming emotionally angry. Quite a weird thing to explain.

When I was on Cymgen especially I had this whole out-of-body experience where I felt that my body was present in the group, but my inner being was detached and I was looking from outside inward, totally detached without being part of the group. This however has made way for a new type of experience. One where I feel trapped inside my body, instead of outside my body. So I still experience some disassociation and feel overwhelmed in social situations, but with the difference being, that instead of feeling detached from my body and looking down or from the outside inward to what’s happening, I now feel trapped in a bubble within myself. No other way to really describe this. It is like getting my body and spirit or soul reunited, only to have my spirit/soul pinned down in a cage. But I am dealing with it. As said before…the “Lucky Packet” disease…never know what you gonna get next.

But why am I not on the medication that is supposed to help my cope by broadening the gaps between the pain signals? Because I am still waiting on the Medical Council to make a decision. My battle with the medical aid has gone as far as the Council of Medical Schemes, who are currently investigating the fund and my case. Their ETA for giving me an outcome, is end of December on the latest. So now we wait. Should we not succeed, I will explore other avenues, but I will continue fighting. This unfortunately means that with our savings on our fund only kicking in again in January, any and all medication comes out of own pocket, which is just not viable at the moment. But I haven’t lost faith yet, and this means I just need to focus more on my coping skills.

But going through this did make me realize that we have not spoken on the connection between CRPS and Depression yet – perhaps touched on it, but not in detail as such.  

CRPS & Depression

“CRPS is a debilitating chronic pain disorder that can negatively impact physical, mental, and social health. Depression, anxiety, trauma, insomnia, and substance use disorders might occur in affected patients. The etiology of CRPS appears to be multifactorial; therefore, effective treatment should be multidisciplinary.”

Although CRPS is not a mental health condition, but, neurological condition. CRPS can cause or worsen anxiety, depression and stress. It can sometimes even lead to post-traumatic stress disorder (PTSD), especially when a limb is or feel cut off from the rest of your body – whether physically or mentally. The reality is that it is these disassociated feelings and anxiety, trauma, PTSD etc., that often lead to suicide and/or thoughts of suicide, which lends the name “Suicide Disease” to CRPS. So although depression may not be the cause of CRPS, it may very well be a result of CRPS.

In an article that was published in The Journal of Pain (https://doi.org/10.1016/j.jpain.2017.02.277), a study was done on the relation between depression and CRPS and the question was asked, “Could depression be a causative factor in the development of CRPS types I?” The outcome of the study noted the following: “Studies have shown that patients with depression have an increased rate of having chronic pain, including CRPS. These patients also have poorer outcomes of recovery.” So although depression as the “norm” may not cause CRPS, it does seem possible in some cases, not necessarily causing CRPS 1, but heightening the possibility of developing CRPS 1. Although this is an isolated study, it does make sense if you take in consideration that CRPS 1 is a neurological disorder. So if you are prone to develop CRPS 1 at some point in your life, for whatever reason, suffering from depression beforehand may speed up the process of developing CRPS 1. Depression puts your body under pressure, it lowers your natural defences, which heightens your body’s vulnerability.

Imagine having so much pain, knowing that NO medication on this planet can 1. Heal the condition, 2. Take away the pain and 3. Fix what was broken – and having to live like this for the rest of your life, being limited to what you can and cannot do and when you can and cannot do it. Imagine having so much pain that it affects your energy levels, your sleep patterns, your concentration, your social life, your sex life…the list goes on. For most diseases there are medication that can offer some sort of relief, but what you have is not like any other disease and this disease does not play well with medication. As a matter of fact, while no medication helps for the pain, some medicine even worsens the pain. Now imagine having to face every day, with the insomnia, burning, swelling, sweating and everything else that comes along, then you can understand how easily one can fall into a state of depression.

So when someone with CRPS focus on things like meditation, coping skills, desensitizing techniques etc., it is not only to get a handle on the pain, but also to combat depression. CRPS can never be treated in a protected bubble. Treatment will and must at all times be holistic in its essence. CRPS 1 testifies to this, as this is a neurological disease with physical manifestation, but without physical origin. In other words, there is no nerve damage, unlike CRPS 2. Yet it is not a mental disorder, which makes it even more complicated or complex.

Some of the medication that CRPS warriors are put on are medications that they use to treat depression, due to certain properties that these meds have to assist the body to deal with the pain and to lift the spirits. Yes, some of these medications numb the emotions, but it becomes a necessary part of dealing with the pain. Emotional anger and pain fuel each other. So when you are in so much pain, you become angry, and when you become angry, it worsens the pain as you become more aware of the pain and the helplessness of the situation. Meds like Epileptin, Dynasertin, Cymgen etc. sort of breaks this vicious cycle by (among other things) taking the emotions out of the equation. So while phycologists and psychiatrists do not like the idea of your emotions being cut off or blunted out, for someone that struggles with constant pain, it gives them a means of dealing with the pain, without having to worry about the emotional baggage of the disease. Unfortunately, as with everything else, it does have its pros and cons, something that we have talked about before.

The following was posted in the National Library of Medicine (https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8970239/), “There is conflicting evidence for a relationship between psychological factors and psychiatric symptoms and CRPS. When symptoms are present, it is uncertain whether they predispose to, predate, or result from CRPS. A retrospective study of 64 patients with CRPS reported a higher prevalence of mental illness compared to individuals with other chronic pain; the most common conditions were adjustment disorder, depression, alcohol or tobacco abuse, and personality disorder.12 A forensic evaluation of 55 patients with CRPS noted depression in 60 percent, panic attacks in 20 percent, alcohol or other substance abuse in 18 percent, and somatoform disorder symptoms in 42 percent.13 A prospective study of 152 patients with CRPS detected a higher prevalence of post-traumatic stress disorder (PTSD), compared to individuals with other chronic pain and healthy individuals.14 Patients with lower baseline anxiety, fear of pain, and perceived disability have better prognoses, compared to patients with higher levels, because the latter group might minimally use the affected limb, paradoxically leading to increased pain and disability.15 Catastrophic thinking might predispose individuals to CRPS due to a heightened perception of pain.8 Although no studies assessed the prevalence of insomnia, this is likely present due to the strong bidirectional relationship between chronic pain and insomnia.16 Furthermore, sleep disturbance can exacerbate pain (especially the following day) or predispose individuals to develop chronic pain.16”

Thus, with CRPS pain being one of the highest pain diseases, it seem that the possibility of developing depression is much higher than with other diseases. So the verdict is still out on whether or not depression may or may not have a contributing factor on developing CRPS 1. Again shining the spotlight on the reason why this disease is called “Complex Regional Pain Syndrome”. I do think however that what we can take away from these studies is that there definitely is some kind of correlation between CRPS and Depression, although it may not affect everyone, and/or affect everyone in the same way. Living with CRPS definitely make you prone to developing depression, but it also seems that in certain cases, that living with depression may make you prone to developing something like CRPS. So can I really prevent this? It is hard to tell. Can I treat this? Yes, I do think so. Perhaps not the CRPS, but very well the depression. But it is not as simple as just popping a pill unfortunately (although medication is a vital part of treating/preventing depression). It requires a strong foundation and support system (ironically, often one of the first things to go when people are diagnosed with CRPS), a willing and open mind set (that may often be affected by the depression itself), coping skills that not only help you to manage CRPS, but also help you to manage and treat depression…and lots of prayer founded in a solid foundation of Faith. 

One thing is for certain, there will never be right conditions to fight CRPS, whether it is linked with depression or not, or perhaps even other health issues. There will always be the next fight and the next...different, bigger, more challenging. Todays victory just mean that we need to fight so much harder tomorrow. Following the Springboks win over the All Blacks in the 2023 World Cup Final, Siya Kolisi had the following to say, which we could all learn from:

"Coach Rassie [Erasmus] said great things are never achieved in ideal conditions, and this wasn't ideal conditions for us as a group. Playing the home team in their home country was one of the hardest things to do and obviously when we played the last game against England, which was tight, we had to fight and today as well, no different." (Siya Kolisi: Springbok Captain RWC 2023)

RARE Disease ambassador

I have been blessed with the wonderful opportunity to become part of Rare Disease South Africa as a Patient Voices Ambassador for CRPS 1. I have the opportunity to attend the RARE X 2024 Conference in Sandton in February 2024, but unfortunately won’t be able to attend due to the cost of attending the conference, travelling, accommodation etc. Let’s hope that in the future they will path a way for attendees to be able to take part and do presentations via other communication platforms like Zoom, Skype etc., or perhaps they will schedule a conference down in Cape Town. Who knows.

Colour the world orange

November is that time of the year again where the focus falls on creating awareness about CRPS, with the “Colour the World Orange” day falling on the 1^st Monday of November (6 November 2023). People are asked to wear orange in support of people living with CRPS.

What does Colour the world orange day mean?

On Nov. 6, 2023, members of the CRPS/RSD. community will celebrate the 10th-annual Color The World Orange day to spread awareness of this poorly understood pain disorder.

Read more on https://www.colortheworldorange.com to see how you can become involved in creating awareness.

On 25 October 2019 Adrie Barnard wrote the following article for Huizemark, a real estate company in South Africa (https://www.huizemark.com/news/color-the-world-orangetm-day):

“Colour the World OrangeTM Day

The first Monday in November is dedicated to bringing awareness to Complex Regional Pain Syndrome with Colour the World Orange Day which was founded in 2014. Reflex Sympathetic Dystrophy (RSD), describes an array of painful conditions that are characterized by a continuing (spontaneous and/or evoked) regional pain that is seemingly disproportionate in time or degree to the usual course of any known trauma or other lesions. Usually starting in a limb, it manifests as extreme pain, swelling, limited range of motion, and changes to the skin and bones. It may initially affect one limb and then spread throughout the body. The pain of CRPS is continuous but varies in severity.

The sixth-annual Color The World Orange™ Day for CRPS/RSD on 4 November 2019 aims to create awareness of this rare disease and hopefully a better understanding of what it is about. As a real estate company with a passion for the colour orange we will participate in getting the voices heard of those affected.

Visit the CTWO Facebook Page and website for ideas on ways to Colour the World Orange. The easiest way to get involved is to wear orange on this day and post orange pictures (orange food, orange drinks, orange flowers, orange clothes) to social media with the hashtag: #CRPSORANGEDAY™

At the last count, 130 buildings and bridges around the globe will be lit orange on 4 November 2019 for the sixth-annual Color The World Orange™ CRPS/RSD Awareness - from Las Vegas, Pennsylvania, Texas, New York and many more cities in the United States to Perth, Brisbane, Logan, Darwin in Australia; from England to Germany!

Let's do our share in South Africa and colour the World Orange!

Author: Adrie Barnard”

It has been four years since this article was written, and we have yet to experience South Africa coming forward in creating greater awareness for those living with CRPS - unlike other countries where towns and cities cloak themselves in orange in order to help create awareness for CRPS. Let’s hope that we will be able to do the same in our cities in the near future.