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 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 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

CRPS My Journey: Chapter 23 - From Achilles Heel to Vitamin Supplements: Building strength!

Okay, so my break was a bit shorter than I anticipated, but that is the thing. As soon as I think this is going to be my last chapter, people contact me to tell me how much a certain chapter meant to them, and then asks me to continue as it gives a voice not only to myself, but also to them, as they are going through the same struggles as myself. Suddenly they do not feel alone. What they have struggled to express or get other people to understand - suddenly they found someone that knows and understands something about what they experience. I am so blessed to be able to use what is happening to me, to encourage others that are going through the same struggles, and to advocate CRPS to those who do not know and do not understand. Thank you to all my readers for supporting me in this way, and giving me the strength and the platform to be a voice for CRPS warriors.

Achilles heel

The metaphor Achilles heel often refer to "a weakness in spite of overall strength, which can lead to downfall". According to Greek mythology, Achilles was a demi-god who was instrumental in the Trojan war. Because of his enormous strength and invulnerability, he became the greatest warrior of his time. However, he had one weak point - his heel. The story goes that his mother held him by his heel when he was still an infant and dipped him in the river Styx, so that he would become immortal. And as the story goes he became indestructible...except for his heel, that would eventually become his downfall, as this was the only part of his body that was not wetted by the water. During the Trojan war he was struck by an arrow (possibly a poisoned arrow) from the Trojan Prince Paris in his heel, and he was killed. The only vulnerable spot in his body, became his greatest downfall.

The story or legend of Achilles made me think about life, and how we approach life itself. In 2 Corinthians 12:7 Paul talks about a "thorn in his flesh", his Achilles heel if you will. Although Biblical scholars vary in their interpretation of what exactly this "thorn" was, it is not so much the thorn that I want to focus on, as it is the fact that he had a weakness or challenge that made him look at life from a different point of view. Paul acknowledged his weakness or challenge, but did not let it define him or prevent him from living life to the fullest. He used his "thorn" to motivate and challenge him to be better, to live life to the fullest. In the same way Achilles acknowledged his weakness, but again did not let his weakness define or stop him from becoming the greatest warrior, even though he knew that it may be his ultimate downfall.

In the last month I have lost a number of people in my life, within days of each other. Two of these people that I have lost were friends. They were those people that always saw the glass as overflowing, even though it was only half full, or at times even empty. It seemed that nothing could faze them or get them down. Ironically both of these friends died due to complications of blood clots that they had. It came suddenly, they got treatment, got better and then suddenly without warning were taken from this life. Looking at them and the impact that they made in the lives of the people around them, made me realise that we all have our Achilles heel, that vulnerability that have the potential to be fatal - but how we live in spite of that vulnerability and how we approach life and look at life in spite of that vulnerability, is what makes the difference. 

Achilles heel...we all have them. We can either acknowledge and embrace it and let it motivate us to greatness, or we can give in to it, and let it destroy us along with everything and everyone that we love and live for. CRPS is my Achilles heel, for others it may be heart problems, or blood clots, cancer or auto immune disease. The thorn or Achilles heel should not be the focus point...how we react to it and how we use it to motivate us to live life to the fullest is what really matter. 

This one friend of mine, had a heart attack a couple of weeks ago when a blood clot shot through his heart. The doctors told him he was lucky. I spoke to him a week after, and he was full of life and motivation. He spoke as if he was the healthiest person in the world. If I did not know that he was in hospital, I would not even have guessed it. He had the biggest heart. He had this presence around him when he entered the room. We still made plans for a chat over coffee. He was so sure that he would be back at work the next Monday and planned on showing me some new tools and machines that he bought and wanted to talk about my blog, go to the golf range etc. A week later, he passed away unexpectedly in hospital after suffering a massive heart attack. How ironic. His big heart, became his Achilles heel...and even then he did not let it steal life from him. Out of his hospital bed, he was still helping and caring for others. He has achieved greatness in spite of his Achilles heel. Roelof we salute you!

I often said this, CRPS does not define me. It may be my Achilles heel, but in order for me to be able to move forward, I had to embrace it. That does not mean that I am oblivious to the horrific outcomes of this disease, nor does it mean that I am ignorant of the fact that I have a disability. A while ago I was experiencing some remission. The last couple of weeks though, have been hell. We are mid in our winter season. The snow on the mountaintops causes the weather to drop to 2 and 3 degrees Celsius where we are. Buddy and cold weather do not mix. I think this winter has had a far greater effect on my hand, than last year's winter. Especially with the pain that is going beyond my wrist. It is really tiring. To top it off I am struggling a bit with a head cold. So every time I sneeze or cough, it feels like a painful electricity jolt shooting from my neck down the arm and into my hand, causing excruciating pain an numbness in my hand. So it is either one of my discs that's not a happy chap...or I am turning into the Flash with electricity shooting through my veins. Pain is exhausting. However, I will not allow it to consume me. 

Even though I faced many challenges after being diagnosed, I still did not trust my hand enough for other specific challenges. More than that, I used to use my hand (and CRPS) as an excuse not to take certain risks in certain areas of my life. I was reminded a while ago of Peter that had to take the leap of faith and get out of the boat so that he could walk on water (Matthew 14:22-33). While the wind was blowing around him and the waves were crashing against the boat, he was able to walk on the water as long as he kept his eyes on Jesus - that was all he had to do. The moment that he took his eyes off Jesus and faced them towards his surroundings and problems that threatened his faith, he started to sink. 

In much the same way, my hand has been like these waves crashing against the boat. I wouldn't take this risk, because my eyes were on my hand. Buddy became an excuse not to take certain risks for fear that Chucky may resurface and prevent me from taking on these new challenges (even though I have taken much more and much bigger risks in the last two years). [For those that knows the DC comics, it is much like killer Frost in the Flash Series - you can tell what we as a family is watching at the moment] So an opportunity came along where I had the chance to take said risk...and I did it. Yes I was hesitant. Yes my faith was shaken as I looked at the waves. But I went ahead and did it any way. Took my eyes off  my surroundings and focused it on the goal before me. And although the outcome did not go in my favour, I am glad that I took the risk. I am certainly at a much greater space in my life, where I will certainly take more of these types of risks in the future. And who know what my future might hold. Perhaps it may be the beginning of a new chapter in my life.

After many years of painful TB, where he eventually lost his leg to the disease, the Poet William Ernest Henley (1849-1903) wrote the well known saying: 'I am the master of my fate: I am the captain of my soul.' He came to understand that the way that he saw life and prepared himself to face its realities, determined his future - not his disability, regardless of how painful and debilitating it was. He understood that you do not shy away from the waves crashing against the boat, but that you face them head on, and use them as a motivator in your life to reach the goals that you have set for yourself.

Although some are lucky enough, not everyone has the opportunity to say their good byes before they die. Live so that others may remember you, not only when you are gone, but now - in the here and now - as a living legend! Any person who can stand up to fight another day, despite the pain and exhaustion, and show the world that their lives still have great value, that they still matter, and that they make the world a better place because they are in it, is a true legend.

Reinventing myself!

I have tried over the last year to change a lot of things to make it easier on my hand, without taking away the challenges or the abilities. For example, I have started to invest in lighter tools. I have found that with certain tools, for example a hammer or a drill, it has become more and more painful to use these tools, especially over an extended time, as they have become too heavy for my hand to manage. Often it is not only the weight or size of the tool, but also (in the case of power tools), the power and vibration of the tools. For example, the Jigsaw. Apart from the speed setting on the orbital jigsaw, the unit powers the blade to move, not only up and down, but in an elliptical cycle. This means it moves the blade slightly forward on the upstroke and slightly backward on the down stroke. All of this causes greater strain on your hand as you need to have a stronger grip and concentration, than a handsaw for instance. You also have to account for possible kickback, which can cause stress or trauma on your hand. Combine that with a hand that has its own personality and you have a recipe for disaster.

The same with the drills. I have found a lighter and smaller cordless drill than the one I always had, that is much easier on my hand, and which in actual fact has got more power than the older drill. Naturally there are certain tools like a grinder for example, that you unfortunately cannot really get an alternative to, due to the grinding force that it creates, but fortunately these tools aren't used that often. In certain cases, I am able to use my Dremel tool for certain tasks that I otherwise might have needed to use these tools. 

I also had to rethink the use of hand tools. So instead of using the hammer that I always used, I have found different hammers for different applications, with much less weight, that can do the same work (if not better) than the older tools. Smaller, more lightweight tools, enable me to do more. It still put strain on my hand, and it still challenges my hand, causing my hand to become tired, sore, burning with painful days afterwards, but it enables me to do things that I otherwise would not have been able to. 

All these tools allow me to do what I used to do before my operation, and more, while creating less stress on my hand (not NO stress, but LESS stress). Yes, perhaps it takes me longer to finish a project, but I am doing it.

But I also had to rethink and reinvent the way I used to do things. So for example I started to build myself a proper but simple workbench, with a bench vice, which allowed me to be able to start doing projects again. The next evolutionary event in reinventing the way I do things, was to build myself a proper table saw - as I never had one, and always had to work with the jig saw or the circular saw and a made shift table. But I did not want to just have a table saw, I wanted it to be multifunctional. So I looked for a design where you can fit different tools to it. So for example, the same table saw can be converted into a band saw, or a router table, or to convert a planer into a jointer and so forth. This is still a work in progress and I am using mostly recycled wood, so it may not look perfect, but I need it to do the job well, in a way that I can utilise it, rather than winning a pageant contest. I had to find ways to do projects in a way that I can protect my hand, while challenging him. This also meant learning to work with gloves, the right gloves - gloves that are strong enough to handle slipping blades - not only to protect Buddy, but also to protect my left hand against Buddy. This was quite an adjustment, but I have found a pair of gloves that does not leave a mark when you take a sharp utility knife to it. It does take away a bit of the feeling and sensitivity that you would have when working bare hands, but that is a price I am willing to pay if it means that I am protecting my hands.

I think the most frustrating about all of this, is the amount of time that it takes to make these changes and built these aids, as 1. it took strain on my hand while doing so, and 2. it took time away that I would have wanted to spend on doing other projects. However, looking at the way forward and my abilities to be able to do those other projects, it is not a waste of time. It is investing in my hand's readjustment. I use the word readjustment, as we know that there is no cure for CRPS, which means that using the word recovery is not really truthful to CRPS and can be somewhat misleading. I don't think there is quite a word that can really describe this, but I feel Readjustment do get somewhat closer, as (in order to experience remission) I need to adjust the way I use my hand, how I use my hand and how and where I challenge it. 

This has become a focus point for me over the last couple of months, as I have started experiencing that the CRPS might be spreading. Small things that I have noticed over the last couple of months, that have become full blown signs in the last couple of weeks since we are in winter. For instance, my wrist up to the middle of my forearm is extremely sensitive to touch. Even my medical aid band or my sleeve of my jacket, makes it feel like all skin is torn off and hot coals are thrown on the bare flesh. as I am typing here, my hand, wrist and forearm is in excruciating pain.

At last I have tried the hand warmer (Little Hotties hand warmers), and although the heat helped, I could not stand the sensory irritation that it created. These hand warmers keep warm for 10 hours, after which they are thrown away, but the bag that it is in, and especially the corners irritated the sensation part of my hand so much, that I had to take them out after a while. I have tried them inside my compression glove on top of my hand, but the heat did not go through to the inside of my hand. Then I tried them on my hand palm inside the compression glove, and it felt like sharp razor blades or thin fishing line cutting through flesh and bone. Perhaps a USB heated glove may help, but I am still contemplating whether spending that amount of money on a glove - that may or may not help - just to test it, is worth it. If it works, great. But if it does not work, then I have spent money that could have gone towards medication for example. So it is a catch 22, but let’s see what lies ahead. For now, I still need to find a supplier in South Africa that do supply those gloves, as most of the ones that I have seen is overseas. And then again, it need to be a comfortable material that will not irritate the CRPS.

What about the Rhisotomy? Does not seem to have worked...again. Neck pain is still as bad as ever, arms are getting numb, and whether it had any effect on rewiring my brain...well only time will tell. For now, it does not seem that way. But I still have the coping skills that I have built up over the past two years to get me through every day. 

 

We recently took our kids ice skating. Buddy really did not like the cold. I tried to teach both Liam and Malan to skate. Malan eventually came right, but I think Liam enjoyed the falling on the ice much more than trying to skate. Somehow he mastered going backwards and going in circles, but he just could not learn to skate forward - too wild and hasty. But we had great fun. That night I did not have much sleep, as both Buddy and my neck flared up really bad - but it was "worth" it. There was a point however that both my hands were on fire. I do not necessarily think that my CRPS has spread to my left hand. Perhaps my left hand had a form of "Couvade syndrome" - just instead of mimicking labour pains, he was mimicking the burning in my right hand. But for now I am not too concerned about that. (we took them ice skating a second time, and this time Liam actually learned to skate)  

Meanwhile, I have started to take on my medical aid. I have gathered reports from most of my medical team (therapists included), as well as all my test results, which I forwarded to them, stating my case, in the hopes that they might cover my medicine, or at least part of it, under the chronic benefit. Most of my medical team is on board with this and willing to help. Might be a long shot, but I am prepared to take it as far as I need to. If I succeed, this may be a win for all CRPS warriors that find themselves in the same situation as myself. I will keep you updated.

CRPS and vitamin Supplements

The question was asked recently on one of the groups whether vitamin supplements have any influence or effect on either preventing and/or rehabilitating CRPS. 

On 2 July 2021 an article was published online in The National Library of Medicine with the following outcome:

"A total of 2026 patients of whom 632 males and 1394 female were collected in our systematic review. During the entire follow-up period, the occurrence of CRPS-I was evaluated in 1939 patients. Five of the six analysed studies were favouring prophylactic use of the 500-1000 mg daily dose of VC for 45-50 days after orthopaedic or trauma care for prevention of CRPS-I. Only one study found no benefit in VC supplementation compared with placebo to prevent CRPS-I. Analysis of the literature suggests that a daily 500-1000 mg VC supplementation may reduce the onset of CRPS-I in trauma of upper/lower extremities and in orthopaedic surgery."

This was only one study, and the result was that Vit C in high dosages might help to prevent CRPS-I after surgery...in some cases.

There is a website called https://complextruths.org/ which is aimed at CRPS warriors and helping them to live a better quality of life. I do not think that the aim of this website is to promote any "cure" for CRPS, but what they are doing is to look at alternative and natural ways to bring relief to CRPS warriors, without taking away from medicine and coping skills. One of the things that they look at is "Dietary Supplements for CRPS"

It is an interesting read, so I will rather post the whole article here as is, than try and summarize it.

Dietary Supplements for CRPS

Treating Complex Regional Pain Syndrome with Dietary Supplements

Dietary Supplements should be added to every CRPS warriors armory against this disease. From fish oil, which is known to help against allodynia and hyperalgesia, to ginkgo biloba to help fight brain fog, and Vitamin D, which is depleted faster than normal thanks to the CRPS, your body needs vitamins more than ever now. Here is a list straight from our Board of Director's mouths to your eyes, and hopefully, to your belly's, to feed your systems. Whenever possible, try to buy Gluten Free, organic, and naturally sourced.

Many of the procedures we have listed here are FDA approved or are in pre-approval stated, but many are not, and are in circulation around the United States and around the world. We will note whether they are FDA approved (to the best of our knowledge) on the page, but if you know different please, share the truth with us in the comments and we will do our best to follow up. All treatments listed are treatments that are in an active state and are currently in production and being purchased by people with the disease. Our intent of sharing this information with you is to educate, inform and publicize what treatments are available to you so that you can make the best decision for you. If we have personal knowledge, or if our doctors have an opinion, we will notate that in the post, but otherwise, we try to stay unbiased and let the community speak for themselves.

Alpha Lipoic Acid

Several studies have found that Alpha Lipoic Acid (ALA) can help with neuropathy -- nerve damage --related to CRPS, reducing symptoms like pain, tingling, and prickling in the feet and legs. It plays an important role in improved nerve function, reduced inflammation, lower blood sugar levels, weight-loss, diabetes, slowed skin aging and other health conditions.

CBD (Cannabidiol) Oil

Are you looking for a safe, natural and effective way to relieve your chronic pain but don't want the "high" associated with Marijuana known as THC? CBD is rearing its head as the new non-drug (and legal) of choice in a town that has a lot to offer without the risk.

Cinnamon

Many people who suffer from the chronic, intractable pain of CRPS which causes joint and tissue inflammation, are turning to natural supplements to help control their pain. Cinnamon is just what the doctor ordered and Cinnamon is a natural spice which can easily be added to many of your favorite recipes or taken in gel capsules to get your daily serving.

Fish Oil Omega-3 Fatty Acids

Studies have shown that fish oil can slow the progression of neuropathy and help certain symptoms of CRPS such as allodynia and hyperalgesia. These studies show that anti-inflammatory properties are useful in reducing pain and discomfort. Its neuro-protective effects can help to stimulate neuron out growth.

Ginko Biloba Herb

Gingko Biloba is a top-selling supplement due to its long-list of cognitive benefits and well-known abilities to help fight mental fatigue & brain fog, increase cognitive function, improve memory, and increase mental agility to easily perform everyday tasks.

Green Tea Supplements

Green Tea is one of the most powerful antioxidant on the planet and is capable of stopping the unstable molecules called free radicals from damaging your cells. The positive effects on that it has on the brain and heart is just what the doctor ordered for your nervous system and circulation - the main systems impacted by CRPS.

L'Arginine Supplements for Circulation

L-Arginine is primarily used to increase circulation and blood flow for enhanced vascular function; including areas of the body like the heart, head, and eyes. Some believers that suffer from CRPS say that the longer they take it, and with CONSISTENT use, it can even take the edge off the burning nerve pain and it can actually help warm up ice cold skin temperature because of the increased blood flow.

Magnesium

Do you suffer from brain fog, muscle cramps, migraines, and nerve pain from chronic pain brought on by Complex Regional Pain Syndrome? That could be because CRPS causes nutritional depletion of many nutrients, minerals and vitamins due to the myriad of drugs to help us fight the symptoms of CRPS.

Vitamin C

High Doses of Vitamin-C after an injury have been shown to decrease onset on CRPS in some studies, which have shown that Vitamin-C can be used as a preventative, if used in high doses of 500mg, for no longer than 50 days, following an injury such as a wrist fracture.

Please note, that none of these types of food is a magic cure for CRPS, but I do think that, seeing that the body is more than just flesh and blood - as CRPS so clearly proves over and over again - it is something that every warrior, not only CRPS warriors, can look into as a way to prolong life and hopefully decrease pain to some extent. Again it is not a magic cure, and there may not be one of these food groups or vitamins that bring any relief to you, or perhaps it inflames other medical issues...or perhaps it may just be the thing that you have needed all along to enable you to live a better, easier life with CRPS. I know in my case, Cannabis (CBD) is not an option as it increases my pain, but for others it may be helpful.

When I think of my dad, I remember how he always taught us as children that a lot of medicine has its origin, or its roots (pardon the pun), in plants or in nature. Things like Aloe Vera has long been used in its original form, before being "branded" in the form of pills, creams, drinks and so forth. Things like Cannabis, sour fig, African Wormwood, Buchu, Rooibos and many more were used through the ages in various forms for their natural anti septic, anti-inflammatory and medicinal properties. I remember how our house used to smell of buchu vinegar (used for sprains), or African wormwood or buchu (boiled as a tea), fresh rooibos tea (made from freshly dried stems). 

The same with vitamins. We did not have all these vitamin supplements of today. Perhaps they were on the shelves in the eighties, but it was very limited, and not really affordable for the average Joe. Between us and the neighbours, we had guava trees, pear trees, vineyards, loquats, strawberries, gooseberries, mulberries, quinces, figs and more. That is where our vitamins came from, directly from the earth. We grew our own corn, green beans, carrots, potatoes, tomatoes, broccoli, cauliflower and more. Again, that is where our vitamins and dietary supplements came from. Fizzy drinks were a luxury. We drank freshly squeezed juice or we got fresh juice delivered by the milk man (or Milky as we used to call them). That was where our vitamins came from.

Perhaps it was a much simpler time, without the fast foods, preservatives and packed schedules of today. Having a telephone on the wire and not cell phones and laptops made that we were less stressed. If you missed a call, that was it - you missed it, and probably did not even know it. People talked to each other, instead of sending emoji’s. Your actual face was the emoji. Families had dinner together, without the tv. In a sense, the world made more sense back then. Yes, a great deal of the diseases that we have today was misdiagnosed because of a lack of knowledge, but I do think that we lived healthier lives, that helped us to manage a lot of these things much better. Many of us probably lived with these diseases without knowing it. And because some of these diseases was not known, treatments were not readily available, as modern technology to diagnose these diseases and develop these treatments were still experimental and in development stages. But then there were also those diseases that doctors already knew about, like CRPS, that are so complex, that proper treatments are still being developed and re-evaluated and tested. This is not always a quick and easy progression.

At the end of the day, treating CRPS is not as simple as popping a pill. Treatment involves a holistic approach. I had extreme pain earlier the week, and somebody asked me why don't I take something for the pain. I answered her, "Pain medication don't work. It is like a foreign substance that enters my body, and my brain shouting to my body - that's probably for you - and my body answers - I don't touch that stuff, it must be yours".  

Yes, I do use medication, but for a different purpose. But the medication alone is not enough. All of these coping skills, mirror therapy, re-inventing myself, taking in vitamins etc. is needed to treat something so complex, that it becomes somewhat more bearable for me and enables me to push my limits. Lets face it, we all need a little bit more sun and natural vitamins. In the next chapter we will be looking at spoon therapy. Take care.