CRPS My Journey: Chapter 29 - You may delay, but time will not. — Benjamin Franklin

“Time is what we want most but what we use worst.” — William Penn

It has been a while since my last post and I thought that I would have more time to sit down with the next chapter, but alas. Strange how time passes by so quickly. How often do we say, "Don't worry, we've got time", just to wake up one morning to suddenly realize that time has run out? Procrastination - the act of putting things off till the last minute. We all do it. "I will start losing weight, starting next week". "I will start with the project on Wednesday". "I will spend more time with my family when I get home". Do any of these sound familiar?

Dawson Trotman once said, "The greatest amount of wasted time is the time not getting started." We often have good intentions and we spend a lot of time planning (which is not a bad thing per se), but often this become so time consuming that we fail to start. And when we eventually do start, we find that time either is running out, or has already run out.

Lately I have tried to focus on finishing tasks that I have set aside due to pain or time restraints, finances or just pure procrastination. Whatever the reason(s) were, regardless of the validity of the reason, I often found myself at the tail end of time. And with my health this was no exception.

It has been almost four years now since I started seeing Dr King at the Spine Centre. Initially the plan was to monitor the degeneration of my vertebrae over a three-year period. Last year as we reached the third year of this three-year period. We agreed that, with my condition seemingly not progressing as rapidly as we feared might happen, that we had beaten the odds. This would mean no operation, which was awesome news, as this was exactly what we tried to prevent as far as possible, partly because of all the risks that came with an operation such as this, but also (perhaps even the greater reason behind this) because we wanted to avoid the possibility of the CRPS spreading to my neck.

Well I saw Dr King earlier this year for a follow-up, and he insisted that we do a MRI, just to make sure that we do not miss anything, as the last MRI was four years ago. He still did not want to operate, and told me that the only way that he would decide to operate, is when my spinal cord and my spinal fluid is being compromised.

A couple of weeks ago Teresa and I both went to see him for the results, and things did not look good. He sat us down and started asking if I had any symptoms, apart from the normal pain, to which I replied no. He explained that sometimes MRI's can be over sensitive, but looking at mine, and zooming in on the problematic vertebrae, he was a bit perplexed. He showed us where c4/5 is pinching the spinal cord creating a barrier whereby little fluid is allowed to pass by. This meant a compromised spinal cord - which we feared.

He asked me to stand up, walk from one side of the room and back, do the heel to toe test, turn around quickly among some of the tests. He had me press up and down with my hands, lie on the bed and do more reflex tests. And this is what baffled him, as according to my scan I should have symptoms like struggling with buttons, falling over, being off balance. In fact, I should have been in a wheelchair. Yet I passed all the physical tests. Yes, Chucky drops stuff from time to time, but that is to be expected. But for all the other tests, I seemed to be healthy.

So I asked, "Doc, is this good news or bad news?", to which he replied. "This is good news, weird and mind boggling, but actually great news. This means that the symptoms can be prevented". And then he explained it like this:

"First of all, I am still hesitant to operate, as we know that the possibility is there that the CRPS can spread to your neck, which we want to prevent at all cost. In more than 700 of these ops that I have done, I never had a patient present with CRPS in this area, BUT unfortunately it is documented, so the risk is still there. Especially in your case with the degree to which you developed CRPS.

However, unfortunately we have gone past the stage now of waiting and looking at an operation as a possibility, to looking at an operation as a necessity. Because of the deteriorating state of the spine, and while you do not present with symptoms, we have to operate to prevent you from getting those symptoms. Should we leave this for say next year, and you develop any of these symptoms, we will still be able to repair the spine, but we won't be able to reverse the symptoms. So if you were to land in a wheelchair, you would then stay in a wheelchair, even though a fusion was done. Therefor we need to act now.

Luckily it looks like we only need to do C4/5 for now, as (although the others do not look great) there is still enough space around the other vertebrae. Also by doing only one fusion, we will hopefully minimise the risk of CRPS flare-up or spread. Obviously with the operation there are other risks like losing arm and/or bodily functions, losing your voice or becoming raspy (usually temporary), secondary infections even bleeding out (worst case scenario should something go wrong), but we will try to minimize all of these as much as possible. Any operation has its risks.

This is a routine operation. We cut on the front of the neck, next to the vocal cords and next to the spine. We take out the cushion between C4/5 and replace it with a spacer, before we fuse the two vertebrae with a metal plate. It will take about a year for the bone to fuse, but you should lose very little movement, and the healing process should be fairly "quick "(in relation to other ops). You will go in the Friday morning, we keep you sedated in ICU for the rest of the day, the next day the physio will visit you. If she is happy that there are no side effects, you will be moved to a general room. I will come by on Sunday, and if you feel okay you will be discharged. A week or two at home and you should be able to return to work. After that I will see you on ten weeks, then three months, six months and then again one year to make sure that there are no complications and that the healing process is going as it should."

Somehow, I thought, hoped that we would still have time. The one thing that probably helped to postpone it this far and that helped to keep the symptoms at bay, apart from the Lord's grace, was my battle with CRPS. Fighting to manage Chucky probably occupied my brain so much that my brain did not notice what was happening with my spine. Well this is not a medical fact, so don't quote me on that. However, I would like to believe that this was the case, as it would somehow give purpose to this horrendous disease called CRPS, aka Suicide Disease - even if it was just to explain in my own mind what I was dealing with.

My op is scheduled for Friday 2 August 2024. How do I feel about it? Everybody asks me that, and I know what people would expect me to answer, but I don't know. Perhaps indifferent or detached? Perhaps it hasn't sunk in yet, or perhaps I have already dealt with this as I had prepared myself over the last three years for the inevitable. Either way, this is something that I cannot shy away from any more. Time, which we thought was on our side, finally started to catch up to me. And so many of the things that I have wanted to do, that I have planned to do, is still unfinished. Do I have regrets? Of course I do. The problem however with regret (and I have said this before), is that regret always comes too late. It does not necessarily mean that you won't have time to fix things, but you will never be able to get back the time and opportunities you have wasted.

Life is short and every moment counts. Don't let a moment pass you by to let someone know that you love them, that you care for them. Don't waste so much time on not getting started. There's a famous quote by Ray Bradbury: “Sometimes you've got to jump off a cliff and build your wings on the way down.” Take chances and never take anything for granted.

In the immortal words of Mark Twain:

"Life is short, break the rules. Forgive quickly, kiss slowly. Love truly. Laugh uncontrollably and never regret anything that makes you smile."

Catch you on the flip side!

 

CRPS My Journey: Chapter 28 - Remember, so that you may never forget!

Sitting at the fire, cold beer in my hand, watching my children arguing over who has the best hot-wheels, I am suddenly reminded again of how quickly life can pass us by. In a year or two, they won't even remember what they argued about. And a lifetime from now, tonight will only be a faint memory to them, if any. 

Remember!

My dad passed away last month and thinking back on our life together, I know that we argued a lot, at times because we were too similar...and other times because we did not see eye to eye on a number of things. The age old issue of the young that thinks he is wise, without life's experience to back him up, and the experienced elder, without the ability to accept and conform to the changes that life bring. On the one hand the younger generation that believes that what is happening in this new age, cannot always be solved with the knowledge of a few decades ago, and on the other hand the elder that is not able to accept that what has gone before will not always be relevant today. 

In retrospect it is easy to see now how futile those arguments often were, and how, if we had just taken the time and listened to each other and tried more to understand where the other was coming from, we would have been able to build more memorable memories together. After my dad had a stroke a couple of years ago, he never fully recovered. He had no physical impairments, at least not in the first couple of years after the stroke, yet his short term memory has been affected. This became more and more challenging, especially towards the end when he started to lose his ability to communicate with those around him. 

I remember my dad as being a proud man. From the age of 14 years old he would take the produce to the market, driving at night to miss the traffic officers. My grandfather passed away when my dad was 8 years old, so himself, my uncle and aunts had to help my grandmother to work the lands and keep the farm going. He did not have anyone else that was able to deliver the produce, so he had to do it himself. Eventually the cops realised that they would not be able to prevent my dad from doing this and they arranged that he would be able to get a special license - something that would never be possible today. When they had to sell the farm, he joined the same traffic cops that was so lenient towards him, and he wore that badge with great pride. He eventually worked himself up through the ranks and invested himself in his work wholeheartedly.

The hardest part for him, of surviving the stroke, was probably the day when his licence was taken away from him, and he had to face the fact that he was not able or allowed to drive any more. I think that broke him. It was nobody's fault. It was done to protect him, as well as those around him. Unfortunately, that is the path that a lot of people have to take as they get older. 

My dad was a humble man, always believed in, if you cannot say something good about someone else, then you rather shut up. He lived for his grandchildren, and regardless of whether any of us 3 sons screwed up and even rejected him or forsake him, he was always there for us, a safe haven to where we could return without being judged. There were many a time during the past few years where I longed to be able and sit down and talk to him and ask for his advice, when I was not able to because of his inability to communicate. Something that I never thought that I would need or want when I was younger. I always felt that we had no connection growing up as he was always working, and it often felt like I had to grow up alone after my mom died when I was 13 years old. It was only later in life that I realised that it must have been hard for him to take care of a teenage brat, while trying to deal with the pain and sorrow of losing the love of his life, and still keep the lights on as well. Yet he never backed down, and he never projected his own suffering, pain and grief onto us.

Liam and Malan did not take it well when he passed away. Malan would cry uncontrollably and Liam put on this strong facade of not being phased by the loss that he just experienced, something that he had not experienced before and therefor did not know how to deal with this immense pain and heartache. Much like myself, when my mom passed away. Teresa lost a father and was broken. Myself? Malan asked me about a month after my dad passed why I never once cried? How do you explain this to a twelve-year-old boy?

It was not that I did not love my dad. I did and I missed him tremendously, but I think (apart from the emotionless effects of the medication) I have had time to say my good byes or process the inevitable when he was still with us. The last couple of years was tough seeing him in a state where his health was deteriorating more and more, knowing that we could not do anything to prevent it. I often felt that, looking at him, that what I saw was not living, not for him, nor for my stepmom who had given up everything to care for him, putting her own life on hold. I think being there when he passed away, with the last memories of him responding to Malan en Teresa's voices and the touch of their hands, gave me inner peace. He did not struggle at the end; he did not let out a big final last breath. He just quietly passed on, peacefully. And the fact that he had no pain anymore as he entered the throne room of God, was comforting. 

On the one hand I would have loved to talk to my dad about my fears when I was diagnosed. On the other hand, I am thankful that he never knew about CRPS and my struggle with this disease. Although a reality, I don't think any father should lose a child or experience their children suffering with such a horrible disease, causing them to feel helpless. This has got nothing to do with the support system, this is just my perception. As a dad I would lay down my life for my kids, if it meant preventing them from having to suffer.

Why do I share this? I don't know. Perhaps it is a way of working through this event in my life. Or perhaps it is because looking at my boys as they argue about hot-wheels, I suddenly realised how short life really is. I don't want my boys to remember me as a distant dad that was constantly in pain, not able to make memorable memories with them. When I get to that point where I may become paralysed, or completely shutting down (not saying I would, but no-one can outrun time and life), and my kids are sitting next to my bed, what will they remember? What will they carry with them when I am not there anymore? Will they have absolute peace within, knowing that I am in a better place? 

No-one wants to talk about death, yet no-one can outrun it. This is the one thing in life that is certain, that we all are going to die, eventually. What do we do with the time that was lend to us for this short period? 

The aftermath

Following my dad's passing, it was as if Chuckles was feeling my loss as well. Perhaps the fact that I was not able to show emotion, filtered down to him, causing him to gorge himself in the emotional distress that was to be expressed through burning, extreme pain and swelling. After a short hiatus, Chucky stepped back in his full glory, and to be frank, he has not left since. This led me to read up about Impaired Empathic Abilities among Patients with Complex Regional Pain Syndrome (Type I). 

The purpose of these studies was to assess correlations between empathic abilities and multidimensional aspects of pain. But what is empathic abilities? Researchers define it as "the ability to sense other people's emotions, coupled with the ability to imagine what someone else might be thinking or feeling or the ability to understand the experiences and feelings of others outside of your own perspective." Although the studies mainly deal with the ability of patients with CRPS 1 to show empathy towards other people, it did make me think of my own ability to feel emotions and the effect that it has on Chucky. A phenomenon called embodied emotion.

Embodied emotion suggest that emotions have the ability to affect the body. A person may be aware of these emotions, or these emotions could be subconscious, thus being outside a person's awareness. The challenge being when these emotions are subconscious, as they can become difficult to manage and therefor continue affecting the body. Researchers suggest that this has to do with how the brain and the nervous system process emotions. These sensations in the body functions as signals that help people to become aware of feelings or emotions that require their attention - a theory known as the "somatic marker hypothesis".

Reading up on this really resonated with me, as this was exactly what I was experiencing. Thinking of how I am stripped of emotions, or rather of the ability to feel emotions, even with the death of my dad, and how Chucky started to flare-up at exactly the same time, started to make sense. In the past I have learnt that, usually before something like the flu or some physical illness or event, Chucky would start to flare, signalling that something was brewing. In the same way it seems that he had decided to be the harbinger and/or outlet for my emotional distress. It is as if my brain and my nervous system is channelling my emotional distress into my hand, as a way to create a release mechanism.

Something else that I have been reading a bit recently is the effects of hypnosis on CRPS. I have asked around on some of the support groups whether there was someone that had experience with this. Sorry to say, that there were few to none that replied that they had tried this. Trying to find studies on this has also not been as fruitful as I have hoped. Few studies have been done on the effects of hypnosis on CRPS. Some studies suggest that Hypnosis can effectively be used as part of the treatment for CRPS, but also stress that not everybody will benefit from this. Unfortunately, hypnosis is not a cure that will take away CRPS. What it does do, is to assist you in dealing with the disease and teaching you even more coping skills.

I have reached out to some hypnotherapists in the area to find out if they were able to assist with hypnotherapy to treat CRPS, and how they would be able to do this. The results were as follow: Some of them claimed to be able to assist with and even treat Chronic pain successfully, yet speaking to them I soon realised that they did not know anything about CRPS, and after I explained what CRPS was, they confessed that what they understood about Chronic pain, did not even start to comprehend CRPS. Clearly their understanding of Chronic pain did not include CRPS.

A second group claimed that although they did not know about CRPS, they believed that after the first session, they would be able to build a baseline from which they believed that they would be able to treat CRPS. Perhaps even cure it. RED FLAG!!!

A third group immediately confessed that they did not know what CRPS is, although they have helped others that suffered from chronic pain, but that they were willing to study up on CRPS and learn more about it. They also suggested a first session to determine a baseline, but more so to see whether hypnotherapy would indeed be able to assist or not, giving no guarantees, but offering to investigate the possibilities with me with an open mind.

I am yet to try this, and if I would, it would be with the third group, as they seem more likely to take an investigative journey with me, rather than offering a false cure. Hypnosis is explained as "a changed state of awareness and increased relaxation that allows for improved focus and concentration." The better health channel explains as follow: "Some researchers believe that hypnosis promotes particular brain wave activity that allows the mind to take in and adopt new ideas, while others suggest that hypnosis accesses the 'unconscious mind', which is more open to new ideas than the rational 'conscious mind'."

So in short, hypnosis seem to be a more in depth way of practicing self-awareness. Unlike what is portrayed on television, the hypnotherapist that I have spoken to assured me that you are also fully in control and can get "out" of the tranced state whenever you want to. There are even courses on how to do self-hypnosis. 

Have I tried it yet, either of them? No. Will I ever try it? Most probably yes, even if it is only to have the experience and to see how it would be able to assist me in my treatment of CRPS. What do I have to lose? Even if it will be able to help me with dealing with my emotional distress or lack of emotions, then it would definitely be something to explore further.

Any treatment or coping mechanism that helps me to keep moving forward, is worth pursuing. And if it means less relying on medication, and regaining more control over this disease, then it is a win-win.

Retreating to my inner self!

By now the kids had started to settle down a bit. Still playing with their hot wheels, they managed to find a way to play and work together, building tracks, making ramps and challenging each other to do better. In the warm glow of the fire, I look at Chucky, thinking about the rough start that we had three years ago, and how far we have come. At least it has been a while since I wanted to put him into the fire - fighting fire with fire. I think of my dad and how much we could have done differently, but then I am also reminded of those specific events that were memorable, some of them that I have almost forgotten about over the years. I think of my own brothers, how we do not really talk any more, well the one at least. Not everybody is destined to be in your life forever, not even family. Some were meant for a season, while others were meant for life. And that is fine. It is life. I look over at my kids again and pray that they will stay close for life.

Strange how life follows the same patterns in all areas of life. Whether it is dealing with our relationships with those close to us, or dealing with illness and disease, or dealing with your own humanity and mortality, there is always something there to connect one thing to another. Life is always trying to rectify itself by adjusting to whatever direction it has taken. Life is not a smooth ride, nor does it move in a straight line. At times we are in control, and then there are times when it feels like life has taken off without us, leaving us stranded in total chaos. Those times that you wish that you could just push the pause button on life to allow you to catch up. Unfortunately, life does not work like that. But maybe that is just it. Perhaps if we focus more on the now, enjoying the moment, instead of worrying about what could have been or should have been, life might not pass us by so quickly. 

Looking at my kids, it is clear how easily we can remove ourselves from life. How many of us have become spectators rather than participants in our own lives? For me CRPS has done that, although it is probably not fair to lie everything at the foot of CRPS. It is like saying "the devil made me do it" - we often give the devil too much undeserved credit for bad choices that we often made ourselves. In the same way, it has become easy to blame everything bad that happens on CRPS. And yes, perhaps for a great deal, CRPS is to blame, but I still have the choice of how I will react to the curve balls that this disease throws at me. And looking at my kids I realise that the best way to convey this message to them, is to have them see me as someone who never gives up, just as my dad did when my mom passed away. 

Thanks dad for showing me the way! And thank you, the reader for allowing me to share this part of my journey with you.

 

  

 

CRPS My Journey: Chapter 27 - "Fear (like quicksand)...the longer you stand in it, the harder it is to move."

“Courage is resistance to fear, mastery of fear, not absence of fear.” – Mark Twain

Oxford Dictionary:

fear (noun): an unpleasant emotion caused by the threat of danger, pain, or harm.
fear (verb): be afraid of (someone or something) as likely to be dangerous, painful, or harmful.

At the start of a new year, sitting next to the beach with my family, I have had some time to contemplate on the term "fear", how it affects the human psyche, especially when dealing with Chronic pain and how it affects the outlook on our future. For many of us, fear has become an integral part of our being, whether we use it as a survival mechanism, a motivator, or whether we simply give into it due to an emotional inability or lack of strength to work past it and overcome it. I don't think there is one person in this world, that has not been confronted by fear at some point in their lives. The sad reality is that for many people, fear has become an all-consuming part of their lives.

I remember when I had my operation, that started all of this. My greatest fear at that time was to receive anesthesia, as I usually get sick afterwards. Never would I have thought that that fear will be replaced with greater fears that would set of a whole chain of fearful events. Whenever I felt that I have reached my limit, the next fear would rear its head, and another and another - each time worse than before (or so it felt). Some fears I could see/feel creeping up on me, while others just sprung on me like a wild cat. I soon had to realise that I cannot live my life by what my fear(s) "predicted" MIGHT possibly happen. In some instances my fears might have been justified, but in other instances it had no justification at all. It has become so easy to live like a tortoise, continuously retracting my head in my shell, living in fight or flight mode all the time.

Looking at the new year that lies ahead, I cannot but wonder to what extend we will allow fear to guide our thoughts, actions and abilities in the days to come. For some of us it may be the familiarity of living in fear that keeps us there - a false sense of "security" where you know that you need to escape that fear, but fear the unknown beyond that fear..

Frigophobia - a persistent, abnormal, and unwarranted fear of coldness, despite conscious understanding by the phobic individual and reassurance by others that there is no danger. It is also known as cryophobia, cheimaphobia or cheimatophobia.

For others it may be the fear of fear itself. Fearing the emotions that you experience when fear overcome you.

Phobophobia: is the fear of fear itself, but more specifically, of the internal sensations associated with that phobia and anxiety, which binds it closely to other anxiety disorders, especially with generalized anxiety disorders (free floating fears) and panic attacks.

Regardless of the reason why we entertain fear in our lives, we need to agree that fear, although a valid basic human emotion, can be a useful instinct...but can just as well be a disruption in our lives when not managed, thus allowing it to get out of control. Fear is programmed into the nervous system and works like an instinct to protect us. From infancy, our survival instinct is to respond in fear when we sense danger or feel unsafe, but it can also originate from imagined dangers. In such instances it can lead to distress, and when left untreated, it can become so extreme that it can lead to an actual threat.

This made me think of fear in my own life, especially living with CRPS (and the connection between fear and CRPS). A known fact is that fear can cause a variety of anxiety disorders. Anxiety on the other hand can manifest in a physical form through muscle spasms, muscle twitching, cramps, pulsing, throbbing, tremors, and involuntary muscle movements. These symptoms have a direct impact on CRPS and are also symptoms often associated with CRPS.

For many (most) of us living with CRPS, fear has become a part of our everyday lives. Fear for the unknown - fear for how our body will react on new challenges. Fear for the known, that the things that we are attached to will come to an end, but also fear for what we know will follow when we step out of our comfort zone, or do something that we know will end in flare-ups. Nobody that lives with chronic pain willingly want to ignite more pain. Many CRPS warriors report a fear of movement that can worsen symptoms and increase disability

Metathesiophobia, or the fear of change. We fear change, again because of the unknown element that change brings. What if my CRPS flares up? What if I cannot handle the pain? What if I cannot accomplish this thing because of my CRPS? What if...

Often when we live in this type of fear, it becomes easier to just avoid life in the hopes that we rather not aggravate our CRPS. It is exhausting enough to live with CRPS, that we often feel that we do not have the energy to hold onto life. Yet nothing worthwhile has ever been accomplished without putting yourself out there, jumping into the unknown (knowing what you know). So what if...my fears are unsubstantiated or irrational and I actually achieve what I thought would never again be possible? Isn't that in itself worth a try?

Pain can create a barrier in life...but it can also become a motivator if you allow it. Yes, it might not be easy, and I might not feel like it at times (or ever), but I owe it to myself to try. I may never be able to do some of the things that I used to - that is something that I have to deal with. I may never be able to live without pain again - that is something that I have to accept. But I will never know what I am able to accomplish, in spite of my pain, if I let fear dictate my life.

I still have a choice of being part of this life, or just accepting my fate and give up. And this is a conscious decision that I have to make every day. And this decision starts with my choice of what I am going to do with my fear. If I decide to allow my fear to consume me, I cannot expect to overcome any physical, mental or emotional challenges that pain my bring. However, if I decide to say no to my fear, to live every day, one moment, one breath at a time, to accept the bad with the good, and not live in the past, then I have the ability to create hope within myself to say yes to life...no matter how painful it may be.

One of the greatest feelings that I experienced when I was still hiking and kloofing was the sense of accomplishment afterwards. Knowing that the pain and exhaustion that I experienced during the hike was worth it. Looking out from the top of the mountain, enjoying that incredible view and that peace and tranquillity that nature brings, made all the pain and battles to get there seem like a distant memory, a necessary discomfort to achieve an amazing outcome. 

Conquering my fear does not mean that I deny my pain, or that I blind myself to my condition. It simply means that I refuse to become a slave to fear. Conquering fear comes in various forms. In practice it may mean that today it might be working with the band saw, despite fearing flare-ups or how my hand is going to react on the strain of holding the wood straight, overdoing it with fine motor skills or the possibility of injuring myself in the process. Tomorrow it may be the fear of just being able to get out of bed, being able to grip something in my hand without dropping it or experiencing more pain, after pushing my limits today. Fear comes in many forms. Fearing what the future holds, what my condition will be tomorrow, next week, next year or in ten years from now. Fearing that CRPS will spread to other areas of my body. Fearing what I may or may not be able to do as time goes by.

I have read the other day of a CRPS warrior that recently got the diagnosis that her CRPS spread to her internal organs. Others have lost limbs due top CRPS. While others gave up on life and tried suicide because they just could not live with this disease any more. Whatever our fears, we all have them. One thing however that I have thought about a lot while contemplating the definition of fear, is something that might sound like a cliché. It is something that Franklin D. Roosevelt said during his 1933 inaugural address: "There is nothing to Fear but Fear Itself".

Fear in itself can become greater than any external threat or possible flare-up or possible extreme outcome of CRPS, as fear can become our primary obstacle to progress and success. When you live in fear, you close yourself off from all and any possible blessings and positive influences in your life. If I continue to live in fear of what CRPS may or not do to me, of what I may or may not be able to do tomorrow or the day after, or whether it is spreading or not, I will continue to close myself off from living life to the fullest, as far as I possibly can. I will prevent myself from conquering things that may have become obstacles and challenges in my life due to CRPS. I will eventually stop living.

Fear cannot be my future. If I want to live a more fulfilling life, despite this disease, then I cannot live by fear. There is difference between living in fear, and living responsibly. Of course I need to be responsible in whatever I do. That is when I need to use my fear as a motivator to 1. prove my own fears wrong, and 2. to achieve progress and success. One day, one breath at a time. Today a win may be helping my kids to build something special for their mom, tomorrow my win may be to be able to get out of bed, open my hand and pick up my cup of coffee. A win may not always be wow and extraordinary when you have CRPS, but a win is a win and that is awesome in itself. You see how I can see the same scenario either as a fear or a win? It is all about perception.

Living in fear causes extra stress. As CRPS warriors often exhibit heightened levels of anxiety and depression, fear may directly and indirectly lead to flare-ups. In my own life I have experienced that the more I protect and hide my hand out of fear that people may bump into it or I my hit it, the tenser I get, and the easier that tension lead to flare-ups. And as Murphy’s Law would have it, I would often bump it, the more I am trying to avoid bumping it. As affirmed before, CRPS is not a mental illness, however fear and my physical and emotional response to that fear definitely have an effect on my condition, how it presents and how I respond to CRPS. If my fear consumes me, it will have a negative impact on my CRPS, but if I overcome that fear or channel that fear and use it as a motivator, I am more likely to achieve goals that I otherwise might not have been able to.

Unfortunately there is no quick fix or solution for dealing with fear, and for people that have struggled with fear their whole life due to their circumstances or the type of personality that they have, it may never be easy to let go of their fears. NOT easy....BUT not impossible.

There is a saying that goes: "You become what you feed your mind". If I tell myself often enough and long enough that I cannot accomplish something because I have CRPS...I will eventually believe it and I won't even try. BUT...if I tell myself every day that I am going to attempt something and that I will take the smallest achievement as a win on which I can build my confidence, strength and abilities, before long, I will have achieved much more than I initially set out to achieve. Never sell yourself short because of fear. I would not have been where I am today, if I had given in to my fears after being diagnosed. Yes, I still have my bad flare-up days, I still cannot do a lot of stuff that I used to - either at all or in the way I used to - I still get anxious when I challenge myself or do something which I know will increase my pain for the next day or two or three. However...I deal with that when I have to. For today, if I am able to achieve something that I were not able to do yesterday, then that is a major win. If I need to rest tomorrow, then so be it. It does not mean that I am lazy, simply that I am rewarding my body by looking after it and listening to it, for the win that I had the day before. It is all about perspective.

Michael J Fox put is so well when he spoke about his struggle with Parkinson’s: "You deal with the condition, and you deal with people's perception of the condition. It was easy for me to tune in to the way other people were looking into my eyes and seeing their own fear reflected back. I'd assure them that 'I'm doing great' — because I was. After a while, the disconnect between the way I felt and the dread people were projecting just seemed, you know, funny."

When fear propels into anxiety...

There will be times when fear becomes unavoidable and ultimately ends in anxiety attacks. You will remember that earlier in my blog I spoke about getting anxiety attacks when I entered a certain store, and how I had to learn to deal with this when it happened. Anxiety attacks are horrible, especially when this was never a problem before. So how can I approach this and get my control back, before it leads to more harmful situations? By grounding myself. There are different techniques that one can practice, but it basically come down to this...breaking the fear cycle, by calming oneself and regaining control of you actions and emotions and surroundings. To deal with this, I practice mindfulness, which I spoke about in Chapter 19. Another way of dealing with this is by following these tips:

1. Take a few seconds to look around you
2. Find 5 things that you can see
3. Find 4 things that you can touch
4. Find 3 things that you can hear
5. Find 2 things that you can smell
6. Find 1 thing that you can taste

By doing this you are starting to ground yourself, when you feel that you have lost all control of your surroundings. You are brining yourself back to a safe and calm space where you can regain control of your emotions.

Medical gaslighting

A term that was unknown to me until recently when some CRPS warriors shared their experiences on this. I have known about this practice, but I never knew that there was a formal term for this called Medical gaslighting. But what is it?

Medical gaslighting is term used to describe doctors or medical practitioners who wrongly deny a patient's illness entirely, for example wrongly telling patients that they are not really sick, or blame a patient's physical illness or symptoms on psychological factors. These healthcare providers will often refuse to order labs or imaging, even if your symptoms warrant a closer look. This often leads to a misdiagnosis which in turn lead to delayed or wrong treatment. Another form of medical gaslighting is rude or condescending behaviour on the part of the healthcare provider.

In the technological and advanced age that we are living in, it is hard to believe that these type of healthcare providers still exist. Martin Luther King Jnr said, "Nothing in all the world is more dangerous than sincere ignorance and conscientious stupidity". Knowing that something like CRPS has been diagnosed a hundred years ago, or even not knowing and refusing to seek assistance from other colleagues in your profession, while still refusing to see and acknowledge the symptoms and the disease itself, is to live in total ignorance and conscientious stupidity.

Knowledge does not start when I open my mouth, nor does it start when I read or study a book. True knowledge is gained when I start to truly listen, without preconceived ideas, in order to gain a greater understanding.

Since my diagnosis I have been blessed to have had healthcare providers that knows about CRPS. In certain cases, they are well educated in CRPS, in other instances they have limited knowledge but are willing to learn. And in cases where I had healthcare providers that have not heard of the disease before, they were honest about it, and willing to learn and listen to gain some understanding. That is saying a lot in a country where very little is known or heard of the disease. Which makes it even worse when you hear of Medical Gaslighting in 1st world countries where you find Clinics and institutes that specializes in treating this disease. How can it be that despite growth in the medical field, you still find healthcare providers that refuse to listen to understand and just blatantly deny that which they do not understand and do not know. Perhaps it is a matter of "ignorance is bliss", perhaps it is stubbornness or perhaps it is a matter of having seen too many patients that tried to mislead the medical profession by claiming to be ill when they were not. Whatever the reason(s) are, one cannot refuse to see the truth, simply because of one or two patients that may have played the system. You cannot leave those who truly suffer and need help out in the cold, because of what you have experienced or what you do not understand.

The specialist that initially diagnosed me (I have shared this before) told me once that I am in a better position to explain CRPS and what it feels like and how it affects me, than he will ever be. This does not make me a specialist in the field, however it does make me an expert in my own body and someone worth listening to. And yes, expert does not mean All-knowing or having the right to be condescending. It does mean that I have personal knowledge and experience that are valuable for those in the medical field to search for answers, treatments and a possible cure.

Holly Teichholtz, head of communications at the Fox Foundation said the following of Michael J Fox: "His message is so simple, it gets forgotten: The people living with the disease are the experts,".

Neither the healthcare provider, nor myself, have the luxury of being condescending towards one another. Treating other humans with decency and respect is a basic human value - regardless of whether I am a doctor that has studied for many years or a patient that have to live in this living hell each and every moment of every day. The only way to look for a solution is to do it in partnership with each other. As much as the healthcare provider need us to trust them, we also need them to trust us.

Follow-up on Counsel of Medical Schemes outcome

According to them they have investigated my case, and although they "understand" my case and my plea, and although they have "empathy" for me and other CRPS warriors, they denied my request as the medical aid is adhering to the "minimum" prescribed benefit...which in layman’s terms mean that they do not have to do more than that or even have to commit to reviewing it. It is things like this that create the image that CRPS is not chronic enough for medical aids to acknowledge it as being the chronic disease that it is. I have 30 days to appeal this, which I will be doing. I have contacted the legal counsel of Rare Diseases SA for advise on this matter and will report back on the outcome.

May 2024 be a blessed and fairly pain free year for all.

CRPS My Journey: Chapter 26 - The Suicide Disease

Suicide Disease

"CRPS is known as the "SUICIDE DISEASE" because suicide is the leading cause of death of people with CRPS" (CRPS Awareness Fact)

Someone asked me the other day, seeing that Suicide is the leading cause of death for people with CRPS, if I have ever contemplated suicide myself?. Truthfully and thankfully I can confirm that I have not yet been driven to that point. Yes, I have contemplated cutting off my hand many times, but suicide...never. So in a sense you can say I have thought more of murdering Chucky, than killing myself in the process - especially in early days. Nowadays not so much, since Hesti set me straight on the crucial fact which is: Living with Chucky = CRPS / Cutting Chucky off = CRPS and Phantom Limb Syndrome.

Don't get me wrong, I still get mad at Chucky, and might lash out at him saying that I am going to cut him off, but at the same time I will protect him with everything in me. It is just frustrating I guess. Suicide however is a total different ball game. Yet it is a reality for many CRPS warriors for whom the pain and loneliness have become too much, losing all hope, seeing suicide as the final outcome or solution to dealing with this life that they have been dealt with.

But let's look at why CRPS is known as the Suicide Disease and why this is such a tremendous problem.

Suicide itself is a major global problem. The International Association for Suicide Prevention (IASP) and the World Health Organisation (WHO) released the following statistics in 2023:

• An estimated 703 000 people die by suicide worldwide each year.
• Over one in every 100 deaths (1.3%) in 2019 was the result of suicide.
• The global suicide rate is over twice as high among men than women.
• Over half (58%) of all deaths by suicide occur before the age of 50 years old.
• A previous suicide attempt is the strongest risk factor for death by suicide.
• Globally, suicide is the fourth leading cause of death in 15-29-year-olds.
• Suicide occurs across all regions in the world, however, over three quarters (77%) of global suicides in 2019 occurred in low- and middle-income countries.

According to the National Library of Medicine, patients with CRPS may have a higher risk of suicide than the "general population". In a specific study that was done on CRPS patients, it was reported that 49.3% of patients with CRPS considered suicide and that the actual suicide attempt rate was 15.1%. These rates are higher than those of the general population and other pain populations.

Consequently, many patients with CRPS are severely restricted in almost all areas of life. These restrictions pose a substantial challenge to them in their lives, which may lead to emotional distress such as depression, anxiety, anger, frustration, and hopelessness.

Patients with CRPS often experience flare-ups. Such flare-ups are difficult to cope with and manage, and accordingly, the patients’ emotions are likely to fluctuate. Repeated fluctuations in negative emotions can develop elaborated, entrenched, and sensitive suicidogenic cognitive structures, thereby increasing the risk for suicide behaviours." (Korean J Pain. 2021 Jan 1; 34(1): 94–105. Published online 2021 Jan 1.)

As said before, having a debilitating, chronic disease is also isolating to a degree. A great number of CRPS warriors shares experience similar to the following: At first people that you work with professionally, colleagues, even friends and family feels sorry for you. After a while they realise that it won't get better, and then inevitably they begin to move on without you, leaving you feeling abandoned and ostracized. The more acute your symptoms become, the more you become viewed as who you once used to be, as if it is not already hard enough for you to deal with the reality of that, living in a body that hate you, a body that is constantly at war with itself.

CRPS, usually starts in a limb, which manifests as extreme pain, swelling, limited range of motion, and changes the skin and bones. It may initially affect one limb and then spread throughout the body. Over a third of CRPS warriors report symptoms throughout their whole bodies. We all have our own way of describing what CRPS feels like, and yet the ugly truth is that according to the McGill pain index, CRPS pain ranks higher than childbirth, amputation, and cancer...more agonising than the amputation of a finger or toe without painkillers. It is an aching, burning, bone-crushing, debilitating pain, that can become all-consuming, not merely nagging. Things that should not cause pain under normal circumstances (for example, the light brush of fabric or wind) may cause a person who suffers from CRPS intense pain.

Having such excruciating pain day in and day out have an enormous effect on your emotions and your overall mental state, leading to emotional dysregulation, i.e. difficulty regulating one's emotions. You feel overwhelmed, have difficulties controlling impulsive behaviours, or have anger outbursts. These negative emotions can be difficult to cope with, leaving you feeling uncontrollable, hopeless and entrapped. These intense responses can cause trouble with relationships, work, school, and daily life, increasing the risk of suicide tenfold.

Pain intensity can have a major impact on suicidal ideation (thoughts of committing suicide) and impulsivity (the tendency to act without thinking, for example blurting something out, buy impulsively, crossing the street without looking etc).

CRPS affects many brain functions. A key change occurs with the sensitivity of the mechanisms that cause the symptoms. I have explained before how the pain is able to get worse when you just think about moving the body part, even if you don’t even move it an inch. Mirror therapy is one example of that, where your affected hand feels the pain intensifying, while you are touching your non-effected hand in the mirror. Your brain sees the affected hand as being in trouble, and act upon it.

It is the complexity of CRPS and the effect that it have on the brain that is able to bring mental strain to a disease that is neurological in essence with physical manifestation, and not psychological to begin with. Every person has a breaking point, and for a great deal of CRPS warriors that breaking point unfortunately ends in suicidal ideation, with many going as far as attempting suicide and even succeeding. We need to break this vicious circle. We cannot allow a nickname like Suicide Disease to authenticate itself by literally stealing life form people that did not even ask for this disease. With about 50% of CRPS warriors having suicidal thoughts, and 15% actually going through with it, we have a huge responsibility in breaking this curse.

The month of November might be CRPS Awareness month, but it is not only about educating people on the disease. It is also about saving lives. By showing love and understanding, by embracing people that struggle with CRPS, by allowing them to feel that they matter, that they are worth your attention, that they do not have to feel alone and isolated from society. We may just be able to save them from contemplating suicide as a final solution to the hell that they are living in. There is a saying under CRPS warriors, "If hell was a disease, it would be CRPS".

Suicide is real, and it is a threat to CRPS warriors, not because CRPS is a psychological condition, but because the impact of CRPS can lead to psychological conditions. Suicide is a major problem worldwide, and although suicide hotlines and organisations and support groups are important and fighting hard to combat the problem, we are yet to see a major turnaround in numbers and decrease in suicide attempts. There is no shame in asking for help when you feel that you cannot cope any more, yet many people do not feel comfortable or brave enough to ask others for help. This may be more a reflection on society's lack of unconditional love and support, rather than on the mental state of those who struggle with suicidal ideation. If these warriors do not feel safe enough to ask others for help, because they are afraid of the shame and stigma that the world associate with suicide, how can we expect the statistics to change. 

Whether you are a CRPS warrior like myself, or merely part of the greater population that does not battle CRPS, we need to renew our minds. We need to change the way we look at suicide. We need to break down all our preconceived ideas, and judgements and shaming. None of us can possibly know and understand what someone else is going through and what they experience to push them this far. It is easy to say that suicide is the coward's way out, but if you and I have not walked one step in that person's shoes, how can we be so judgemental about how and what we perceive that person's actions to be.

Suicide may not be the answer, but unfortunately for many it seems to be the only way out. If we know someone close to us that are really struggling, and we do not step in and support them, and listen to them and pray with them and encourage them, then we have failed them. The world need more heroes...ordinary people that care enough to stand up and say, "you are not alone, let me help you". Ordinary people that do not judge, that do not criticize, but rather say, "I may not know or understand what you are going through, but I will carry you and support you when you do not have the strength to carry on".

Suicide is no joke...it is also not the answer, although it might feel that way at times. All fighters get tired. All fighters lose their way sometimes. All fighters feel alone at times. But being a fighter is not only about the fight or whether you keep standing and whether you get knocked down. It is about how you get up when you are knocked down and how hard you hit back. It is about not quitting when the fight gets tough, but knowing when to lean on the support that others offer you. It is okay to be tired...it is not okay to give up.

Signs to look out for:

In South Africa there are 23 suicides per day with 230 serious attempts. There may be warning signs that you can look out for to help someone who is considering suicide. Some of these may include the following:

Talking about:

• Feeling unbearable pain
• Death or a recent fascination with death
• Feeling hopeless, worthless, or trapped
• Feeling guilt, shame, or anger
• Feeling like they are a burden to others

Changes in behavior or mood:

• Recent suicide attempt
• Increased alcohol or drug use
• Losing interest in personal appearance or hygiene
• Withdrawing from family, friends, or community
• Saying goodbye to friends and family
• Giving away prized possessions
• A recent episode of depression, emotional distress, and/or anxiety
• Changes in eating and/or sleeping patterns
• Becoming violent or being a victim of violence
• Expressing rage
• Recklessness

Other red flags are:

• Talking about immediate harm to oneself or others
• Planning to attempt suicide (for example, searching online for information about how to attempt suicide)
• Acting in such an erratic manner that you are concerned about their safety

Whenever you find yourself in a situation where you see these signs in someone else, please reach out to the Suicide hotline in your area and get them the professional help that they need. And should you ever find yourself in this situation, know that you are not alone, that there is help and that you do not have to go through these struggles alone. 

CRPS Awareness month

Thank you to everyone that helped spreading awareness during the month of November. One of my colleagues even went so far on Colour the world Orange Monday to educate the people in the minibus taxi, that she was travelling in, about CRPS as they were asking why she was wearing orange hearts.

Meanwhile I still have not heard back from the Medical Counsel, but they have asked for time until end December, so let's hope that there will be some good news. The Rhizotomy that I had earlier this year seem to have had the opposite effect of what was intended. So the hope was to stimulate and assist with restructuring the brain, but it seems that it just amplified everything. The electric shocks down my arm and into Chucky has started after the Rhizotomy and has intensified ever since. It feels like Chucky is being tased with very high voltage every time this happens. 

Sleep has once again become one of the worst activities, as the pain keeps amplifying. Apart from the excessive sweating, swelling, hair loss and colour change, my left elbow has started to mimic the same pain and burning symptoms as Chucky - constantly and without missing a beat - while the skin has become very sensitive to the touch. My elbow also reacts the same way with cold, as Chucky does. Initially I thought that it might be tennis elbow, or that I might have strained my left arm as I was trying to compensate for not being able to use my right arm as before. However, it is becoming more and more concerning that the alternative might be inevitable, i.e. that the CRPS might be spreading to my left arm as well.

There are studies and articles that suggest specific ways or patterns in which CRPS tend to spread, however with CRPS nothing is ever according to specific trends or patterns. I have learned to always expect the unexpected, and never to be surprised when something out of the ordinary or out of character happens. It might be so much easier if CRPS stuck to certain rules, but then it would not be called” Complex".  

That being said, I will see the specialist again early 2024 to do further tests to determine what is going on. So without formally labelling it, I will treat my arm under the assumption that it is either the CRPS that is spreading or the nerves in my neck causing havoc, misfiring in all directions.

I Won't back down

Lately the song, "I won't back down" by Tom Petty (1989) has been on my mind a lot. I think this is a song for every warrior out there. I have included the song below, however I have decided on the 2000 version of Johnny Cash, which has more of a country vibe to it than a rock vibe as it was initially intended. 

Johnny Cash suffered from Shy Drager Syndrome (SDS), a movement disorder which is often referred to as a Parkinson plus syndrome or Multiple System Atrophy (MSA). It has been said that he covered this song, in many ways, as a response to his personal ailments that he suffered prior to making this album (American III: Solitary Man). So, from one warrior to another, here is "I won't back down" as sung by Johnny Cash. Enjoy!

 

 

I Won't Back Down

Well, I won't back down

No I won't back down

You could stand me up at the gates of Hell

But I won't back down

No I'll stand my ground

Won't be turned around

And I'll keep this world from draggin' me down

Gonna stand my ground

And I won't back down

Hey baby

There ain't no easy way out (I won't back down)

Hey I will stand my ground

And I won't back down

Well, I know what's right

I got just one life

In a world that keeps on pushin' me around

But I'll stand my ground

And I won't back down

Hey baby

There ain't no easy way out (I won't back down)

Hey I will stand my ground (I won't back down)

And I won't back down

Hey baby

There ain't no easy way out (I won't back down)

Hey I won't back down

Hey baby

There ain't no easy way out (I won't back down)

Hey I will stand my ground (I won't back down)

And I won't back down (I won't back down)

No I won't back down

Source: Musixmatch

Songwriters: Tom Petty / Jeff Lynne

I Won't Back Down lyrics © Emi April Music Inc., Gone Gator Music, Notoriousjbpsongs