CRPS My Journey - Chapter 5: CRPS and my relationships

How does CRPS affect your relationships?

Remember in the previous post we spoke about how CRPS has the ability to create this immense unfounded guilt? Guilt, regardless whether it is substantiated or unfounded, has an enormous impact on our relationships. And it usually has the greatest impact on the people closest to you, the people that intimately knows you, love you, look up to you and respect you. Add this unfounded guilt with all the other complexity of CRPS and you have a sure killer of relationships. Unless you work at it. And I know from experience, that this may be hard as you are not always in the right state of mind or have enough energy to do so.

One of the most common issues that other CRPS warriors share a lot is the breaking up of relationships. Friends that do not understand what they are going through, loved ones - husbands, wives, fiancés - that walk out on them as they cannot take it anymore, siblings not talking to them or avoiding them as they feel that they just complain all the time, people losing their jobs as their companies and colleagues start seeing them as obsolete. CRPS, as with various autoimmune and other serious diseases, often spiral into a very lonely life, which can end in depression, desperation and ultimately, in certain cases, suicide.

So how did CRPS affect my relationships thus far?

1. Marriage life

(i) Communication

One of the biggest changes that I experienced within my marriage is on the communication side. Yes, I do want to know how Teresa's day was, what is making her happy, what's making her sad, her worries, and what makes her feel special. However, CRPS, and especially when I went onto Cymgen, has led to some emotional bluntness. This was not by choice. It is an unfortunate direct result of the meds, but it still has the same outcome in that I seem to be non-responsive, not listening, maybe even not caring, when in actual fact it is quite the opposite. Deep down my emotions and feelings for her has not changed. It is being subdued by that which is supposed to help me cope with the flaring of the CRPS, and as a result I am thrown into a catch 22. 

On the one hand I want to feel and experience and connect to her on a deeper emotional level, but then I need to go of the meds, which will inevitably increase the effects of the CRPS, pushing it back into overdraft and making me less able to do stuff with her. On the other hand, I want to do stuff with her and create wonderful and positive memories with her, but in order to assist with that, I need to use the meds so that I can be better enabled to handle the flaring of the CRPS. This often results in me being emotionally distant. So yes we will create memories, but not necessarily with emotional involvement.

(ii) Intimacy

And then of course CRPS also has a direct effect on the intimacy and physical part of our relationship. People are not only emotional, social, intellectual, spiritual beings. We are also physical beings, and as physical beings we have physical needs...and especially in a loving and trusting relationship.Unfortunately pain and meds, and even the combination thereof, does often cause hormone changes that may lead low sex drive, erectile dysfunction, vaginal dryness, disinterest or indifference to initiating intimacy, anxiousness, depression and a load of other possible issues that tend to strain the physical connection between two loved ones. And although the physical "us' is only one part of our wholeness, it directly affects our emotional, intellectual, social and spiritual parts of our humanity. And this in return just boosts the unfounded guilt that we already experience. So this vicious cycle just goes on and on, fuelling itself all the time. If we do not break this cycle, it may eventually lead to other relationship problems and ultimately to separation, or even divorce.

The irony of it all is that, open communication and complete unconditional trust, forms part of the foundation of a healthy and strong relationship...the two cornerstones that gets hammered the most when living with CRPS. So the two things that can save the relationship (and yes in my own value based foundation, my faith in Christ is my foundation on which everything is built, however I am not speaking about faith here). Whether you believe in God or not, any relationship need open communication and complete, unconditional trust. As said previously, with CRPS often comes unfounded guilt, social and emotional distancing and loneliness or depression. And speaking from a man's point of view, when the physical intimate part of your relationship is affected as described above, one tends to feel even more guilt as you feel that you cannot fulfil your partner's needs, which cause you to spiral even further into depression, causing even more stress that leads to more struggles and more feelings of guilt. And eventually you start to shut off from your loved one completely. And the irony in all of this is that your partner is actually the ONE person that can help you break this cycle, if you would just open up to them. 

And I can already hear a number of men say, "JJ men do not show emotion. Men do not cry. Men need to be the strong one. Men need to be able to satisfy their partner". When did society start to define who and what men should be and how we should act? It takes a real man to be able to open up to his partner and bare his emotions.

(iii) Bare honesty

I remember a couple of years ago, a friend of mine did this exercise where he and his wife would get bare naked (within the privacy of their home). They would speak openly to each other about their fears, about their worries, about their needs, about their deepest desires. They would then go onto the next part and close their eyes while the other party would touch them on different parts of their body and they would share their true feelings of how each touch made them feel. They had two golden rules though - 1. nowhere during the exercise may they in any way engage in foreplay or sexual activity and 2. total unconditional trust and communication. He said that this was the most daring and humbling experience for both of them, as they literally bared it all on all levels - physically, emotionally, spiritually, intellectually. All pretentiousness, all masks, all barriers were down. There was literally nothing between them. And for the first time they connected on such a deep level that they both ended up crying, with a better understanding and a deeper love for each other.

I don't say everybody should do this, but we need to find a way to protect our relationships and to build our defences - not against each other, but as a unity against the horrible effects of CRPS. 

(iv) Guilt

One of the things I felt especially guilty about, while I was working up to the acceptance stage, was the fact that I could not be strong enough to support my wife in many ways. As mentioned before in this blog, my wife was diagnosed with Lupus (SLE) about twenty odd years ago. Pain has been her normality for many years. I remember her telling me a couple of years ago that one of her biggest fears was to have a day with no pain at all. As pain was "normal" for her, she feared that she would not know how to handle not having pain. It was just the degree of pain that differed from day to day. Now, here I was, complaining, expressing various emotions, struggling to accept what was happening with me, while she never complained, never said when she hurt, always smiled through it all. 

The company that I work for has a good relationship with a therapist that offers her service to the staff. During my Return-to-work interview, my Centre manager asked me to make an appointment with the therapist, and I went. As we were talking I explained to the therapist how my wife has been living with lupus for so long and how guilty I felt for this CRPS coming into our lives causing me to become less of a man, complaining and struggling to come to grips with what is happening, while I need to be there for her. The therapist became quiet and when I was done she said the following: "Why do you feel guilty? What is happening to you is too much for one person to handle on their own. You had to be strong for your wife for so long, this is your time to be weak, to work through the mourning process so that you can get to the place where your wife is. This is the time that you need to be able to reply on her, that she would want you to rely on her. She will understand. She will support you. She has been through this exact same process. Do not push her away." As it turned out, the therapist herself has been living with Lupus for many years, so she knew exactly what my wife was going through.

(v) Choosing her over and over again

Our actions and decisions is often driven by fear. I had to overcome my fears and learn to open up to my wife. It is always difficult to be honest to someone about your emotions and your fears. It is human to fear that you will be rejected when you show the real you, but remember - before all of this, you and your partner chose each other with all the faults and challenges that each of you brought to the table. So why should this be any different? Often we do not know where to start. The important thing however is that we start...and the sooner that we start the easier it becomes. 

I remember when my wife was diagnosed with lupus, a week before her 21st birthday, we were already in a relationship. So we were able to go through this dark time in her life, together. We could grow and learn together from the start. By the time we got married, I knew what I was getting myself into. I knew that there was going to be good days and bad days. And I was okay with that, knowing that, as far as possible, I would do everything in my power to be there with her every step of the way. Now that I had this mountain to climb, I had to be reminded of that. I had to ask myself, "Why would the woman that I have loved for the last 25 years, with whom I've been through so many life events, the mother of my children, suddenly turn her back on me in my darkest hour?" And I had to realise that my fears and my doubts was the enemy, not the CRPS. Yes, CRPS happened and continues to happen, but how I react to this change in my life, and how I allow it to define my being and my relationships is what matters.

It still is not always easy to tell her when I have a bad day, especially when I can see that she is not having a good one either, but it does give one peace to know that you are not alone in this.

2. My children

(i) Restrictions

I have been blessed with two amazing boys. Both loves the outdoors. Malan, the eldest, is 11 years old and wants to become a veterinarian (since he has been about two years old). Liam is turning 7 next month. He is the wild child, the extreme sporty type - always joking, always pranking his brother and his mom. There is never a dull moment in our house.

Unfortunately, with CRPS comes a lot of restrictions. The saying in the book of Matthew, that "the spirit is willing but the body is weak" often applies in a different, more direct context to CRPS. I often look at my children and think to myself, "today when I get off work, we are going to do this or that", and then we get home after work, and I just do not have the energy to do so, or my hand is in so much pain or burning that I just cannot motivate myself to do so. And this breaks me, as I have always told myself that I will never be an absent father, and that I will teach my kids to love and share what I love, to go hiking and kayaking, rock climbing and such.

But then you look at what you have become as a result of CRPS, and you feel like a failure. I remember one evening after we have showered, my youngest son, Liam, and I were chatting, when out of the blue, he looked at me, and took my affected hand in his small hands, and asked, "Daddy, when will your hand be healed". With tears in my eyes I realised on how much memories we are losing out because of this horrible disease.

Children should not suffer because of our disabilities, but unfortunately this is life - this is the reality for many of us. Some parents do not want to be a father or mother, they see their children as a burden, while there are parents who wants to be a father or mother, that wants to do everything with their kids, but they are hindered from doing so because of a disability or disease.   

(ii) Acceptance

Children often accept, even when they do not understand. But for us that are trying to understand, the effect that it has on our children is hard for us to accept. I do not want my kids to grow up, remembering their dad only as someone that sat on the couch, always in pain, but with whom they had no relationship. The hardest part of looking at my family is seeing, that because of the effects of the CRPS and the meds, my kids seems to be closer to their mother than they are to me. Remember what I said about dissociative behaviour? I don't say that this is the truth, that they are closer to their mother than to me, but looking from outside the circle, that is the perception that I have. And I know that is a barrier that I need to break through so that I can see myself inside the circle as part of my family, and not from the side-line as if I am looking at them from the grave. But it is not easy.

(iii) Adjusting

Through my short journey with CRPS, I had to make some adjustments. One of these changes was that I had to find a way to be able to do stuff with my kids, while still protecting my hand. Not a lot of options when it is your dominant hand. My kids love the water. The problem with my hand is that whenever I put my hand in cold water it feels like putting my hand through a bunch of daggers, piercing skin, bone and tissue.

I remember at Christmas time last year we were spending the day with family when the kids begged me to go swimming with them. I had to muster up courage to convince myself to get into the water. There was this battle inside me where my mind said go, but my hand pulled my body back. And I could feel the fear of my hand pleading me not to do it. So I had to make a conscious decision, not based on fear, not based on feelings, but based on my love for my children. So I just dove into the water. The moment I hit the water it was as if diving into flaming daggers. Long story short, through the pain, I was able to teach Liam to swim that day and the joy on his face, not only because he was learning to swim, but because his dad was teaching him and swimming with him, made the pain and burning and sleepless nights afterwards worthwhile. Soon after this I went and bought myself a pair of 3mm diving gloves. So now whenever I go into the water with them, whether it is in a swimming pool or at the beach I wear a diving glove on my right hand. It does not completely take away the pain and flaring, but it does help somewhat to warm up the water that enters the glove, making it just that little bit easier to withstand the cold. And although I have my limitation of how long I am able to withstand the cold, it does give me that couple of minutes that I can enjoy life with my kids, as normal as possible. 

Just as with the diving glove, I have gotten used to wearing a compression glove every day of my life. Initially, my hand was irritated with the feel of the glove on my skin, and at times it still is, but I had to decide which was worse - the irritation or the pain. I chose that if the glove helps to lessen the swelling and the pain, and even helps a bit against the cold, then I would try to endure the irritation against my skin. In a sense I had to teach my hand to accept the sensitivity or irritation in order to receive the benefit of lessening the pain. Don't get me wrong, the compression glove does not take away the pain and burning, and it might seem that it has become a crutch, but as Wendy also reminded me, "if the glove does help, it is a much safer option to have that become a crutch, than becoming dependant on medication that have long term effects". The glove also enabled me to bring my hand more into the open, not hiding it in my pockets any more, far from the world to see. If it sounds like living with CRPS is always a battle between good and evil, or deciding which is the lesser of two evils...it is because with CRPS that is often the case.

3. Friends

(i) Sifting process

I have heard this a lot, "CRPS showed me who my real friends are".. Yes, CRPS, like many other challenges in life, has the ability to sift out your real friends from those that only knows you when they need something from you. I remember one of my friends, for whom I have always had great admiration, phoned me up when he heard that I was diagnosed. The first thing he said to me was, "I do not know what your relationship with God is like these days, but this whole thing does not sound right" Well that ended in a very short conversation as I did not have much to say to him after that. I mean how do you answer someone who has, for some reason, a pre-set idea of cause and effect, not accepting "things", that does not make sense to them, as a medical condition. 

Yes, I believe in Spiritual warfare, but I also believe that not everything that happens to us is a result of something we did to tick God off, or that the devil is sitting and waiting around every corner, to get us. We were born into a sinful broken world, where diseases, famine, hunger etc. is part our existence. Yes, some things happen to us due to decisions that we made, or because of what is happening in the Spiritual realm...while other things may simply happen because we are all vulnerable human beings. This specific friend got Covid like many of us, and nobody suggested it was because of his relationship with God. He simply got infected by a virus like many of us. 

A great number of people that I spoke to, experienced exactly the same. Once the disease started throwing them with more curveballs, or bad days than good, their friends started to abandon them. Suddenly they were seen as the anchor that held back their friends. This is heart-breaking, but it is a hard reality for many CRPS warriors.

(ii) The rise of true friends

But it is not always bad news. It is in times like these that one also find out who your true friends are. I have spoken to people who suddenly rekindled old friendships that have drifted apart over the years. Suddenly these friends were back in their lives offering, wanting to be there for them - not wanting anything in return. Other people that I have spoken to, made new friends, either due to them sharing the same struggles with CRPS, or because they live with someone who has CRPS. For people that are constantly living with extreme pain, it is not always that easy to make friends outside of a support group. 

Although CRPS is a lonely disease, it does not mean that you are, or that you need to be alone. There are a number of support groups where CRPS warriors can join, and where they can share their own experiences without fear of rejection, verbal abuse or shame. Where they can make friends that understand their struggles. People that look out for each other and support each other. One of the things that helped me a lot, and that made me feel lees alone in this, was being part of a couple such groups. Especially those burning nights when you cannot sleep, there is always someone, somewhere in the world that you can reach out and talk to. It makes you feel just that little less insignificant in this big world, knowing that you are not struggling alone, that there are others like you out there, experiencing the same challenges. People that can sympathise with you, and motivate you and talk sense into you, as they can truly empathise with you, as they themselves have been where you are. 

 

 

CRPS My Journey - Chapter 4: Reborn - Death to Chucky

CRPS is also known as Suicide Disease:

Many patients with complex regional pain syndrome (CRPS) have been known to be at risk of suicide, due to severe pain and its comorbid conditions. The risk of suicide may be associated with affective instability, which is an indicator of emotional dysregulation. - National Library of Medicine

According to the McGill Pain Index, CRPS is one the highest pain levels with a pain score of 42 out of 50. This is higher than amputation and child birth. Partly due to the fact that there is no known medication or therapies that can cure it, yet there are still medical professionals that do not acknowledge it. And yet there are so many people suffering from CRPS that have to live with this immense pain every single moment of every single day.

Pain: An Abstract Construct...yet so REAL - the Darkest hours!

Pain has the ability to change your personality. It can change the way you interact with people and how you react to life events, challenges and everyday situations. It can cause you to lose all inhibitions. You know, that filter that one normally has, that keeps you from just bluntly saying how you feel and what you think...well in my case pain caused me to lose that completely. I was like a raging bull, and the worst part was that I couldn't restrain myself. And because of the pain I did not want to restrain myself as I felt that I was being real to myself and to those around me. I became irritated and blunt. It was not much that I became rude, I just lost my tact in talking to people, especially in the workplace.

Things became black and white, without any grey areas. I became factual without showing empathy. This was especially evident when I had to do disciplinary hearings. I became ruthless. And some part of me felt okay with this. I felt strangely motivated to be completely and openly honest to a point that I could not help showing my true feelings. As the pain was real, so was the honesty. I just did not have the strength to sugar-coat it, or put up my best fake smile while I actually felt irritated when I had to repeat the same thing over and over again on things that has been (for example) a regulation for the last two years already.

Staff and colleagues started avoiding me, and started to talk behind my back. I often would be too straight forward, too strict, too outspoken on matters that had to be addressed. The problem with this was not my focus on what was right and wrong, or being outspoken or even strict. The issue was the absence of my sense of humanity. Whenever I sent emails regarding topics like Health & Safety or Covid Regulations, staff would be cringing as they expected a hot tempered email. As I poured myself into my work to get my mind off the pain and off this dark cloud that was hanging over me, my drive to sort out problematic issues in the workplace became even stronger without any need to show compassion. As long as I followed regulations and ensured that I had my facts straight nothing else mattered. And slowly but surely I was starting to isolate myself from people.

Unfortunately, the fact that I used cortisone also just worsened this. The cortisone helped for the swelling, but usually when I take cortisone it tends to make me irritable and short tempered, which in this case was just fuel on the fire. So I had this combination of intense pain and burning, mixed with the side effects of cortisone and topped off with the internal struggle of trying to cope with something so real, yet so unfamiliar that I was heading for total disaster. It was like a tsunami waiting to happen. It felt like I changed places with the image in the mirror, and although I could see what was happening to the real me, I was unable to do anything about it. Some of my colleagues did not know what I was going through, as I was not ready yet to share my struggles and my pain with everyone. I did not want people to look at me differently and feel sorry for me. I wanted to be treated as normal...as if anything that I was going through was normal.

Sharing feelings and experiences

Luckily I was referred to a psychiatrist that again referred me to a good psychologist, Wendy, to assist me with coping skills. When people talk of seeing a psychiatrist or psychologist, there is often this stigma that cause you to rather not mention this to anyone. Perhaps it has something to do with the way we were raised, or the image that is presented to us by the programs that we watch on media and social media. But again this was something that I had to overcome. I had to decide which was more important: dealing with CRPS and everything that goes along with it; or hiding away so that I won't become a statistic of a stigma that we ourselves has created in our minds. Since I have been in ministry for most of my life, I was used to being the person that everybody confided in. However, I was not used to open up about my own feelings and struggles, especially to someone else in a therapy session. So I had to learn that it is okay to share, no matter how difficult it may be - and that even I needed to do that. So yes sure, sitting on the other side of the table was definitely awkward, and I definitely felt way out of my depth.

What I did realise though, was that this was something that I had to do, that I needed to do and that it would eventually help me, even if it was just to make sense of what was happening to me in the moment. Although this was not a quick fix, it did help to calm me down over time. And the more that I were able to calm down, the more I were able to start focussing on the Graded Motor Imagery and Mirror Therapy. Talking to Wendy was different than talking to Hesti in the sense that, whereas Hesti explained to me and taught me a lot about CRPS - with Wendy I had to do most of the explaining. But it was also good in a way, as it helped me to open up much more.

Whereas Hesti specializes in CRPS, this seemed to be quite a new field for Wendy as well. I think what helped me the most getting to grips with this whole thing was just that - receiving information from Hesti and in return sharing that information in how I understood it and experienced it with another professional that could help me on a different level. It allowed me to start working through all these scrambled information and fears. Somehow, this was also easier than trying to explain this to colleagues, friends and family. I think partly because there was no relationship with Wendy yet, as with the people that I have known for years, but also because there were no looks of scepticism, feelings of guilt or looks of pity - which was how I felt or believed people closest to me would react. And the reason I think that I felt that way, was because I felt guilty, as if I was letting everybody down. Which of course was not true. It was unfounded guilt, but that is just it. CRPS has the ability to make you feel strong guilt towards the people closest to you - well I certainly experienced that.

"Enlarging" the gap...slowing down the messages!

At the same time that I started with emotional therapy and coping skills, the psychiatrist put me on Cymgen 60, a generic of Duloxetine - in other countries it is also known as Cymbalta - a horrible drug in many ways, but also in certain cases the only drug that does help to an extent. For the first 4 weeks I was nauseous 24/7, to such an extent that I thought of calling it quits. I remember Hesti pleading with me to just stick it out for the initial 4 weeks, reaffirming that it will subside - and I am glad that I listened. If I had stopped within the 1st 4 weeks, I would definitely not have started on the drug again. I have renewed empathy with woman that struggle with morning sickness throughout their pregnancies.

I was placed on this drug in order to manage the pain more effectively. As the CRPS caused my hand to send pain signals through to my brain at an alarming rate, we had to try and slow down those signals. In layman's terms, the purpose of Gymgen was to do just that, to enlarge the gap or slow down the rate at which these messages came through so that my system would not constantly operate in overdraft, and constantly be oversensitive. The less sensitive, the more I would be able to focus on learning my coping skills, on managing my pain better and on focusing on getting the CRPS in remission. Yes, the Cymgen did come with its own set of side effects, which we will focus on in a minute, but for now - after pushing through the initial 4 weeks of nausea - my nervous system started to "relax" a bit. It is worth noting that Cymgen, up to now still, never took the pain away, but it made it more manageable and less of a constantly throbbing pain.

Horrible Side effects

Unfortunately, there is some side effects to using Cymgen, like there is with all medicine. One of the major side effects that I personally have experienced, and still does, is what they call Dissociative Disorder. It is an almost out-of-body experience where you would be sitting in a group, but not really feel like you are being part of the group. You would occasionally take part, but as if you were sitting on the outside of the group, while looking back at the group without feeling part of the group.

This can also lead to emotional abstinence, as in my case. In other words, the absence of feeling and acting upon emotions. So what I experience is that you do not really get sad, nor do you get happy. It is just a state of being - an "It is what it is" attitude. I really need to put in some effort to create half a smile. I remember about a month and a half after I started on Cymgen, I cut my left hand trying to cut a piece of paper. An hour later my phone fell and the screen cracked. Another hour or so after that, I stopped at the garage and they put petrol in my car instead of diesel. A series of events that happened within a three to four-hour period. Now usually this would upset anyone, and gradually it may build up to anger in such a way that you would probably lose it. More or less the normal reaction for any sane person when a number of things goes wrong in such a short period of time.

In my case however it was like I picked up my phone and I remember calmly saying to myself, "oh okay, the screen is cracked". At the garage, instead of becoming upset, I just responded "oh I told you diesel three times and you put in petrol. Okay, how are you going to fix this now? It happened, it is what it is". Even the garage manager looked at me and told me if it was her she would have been furious. It was not as much a feeling of being calm as much as it was a feeling of indifference, almost a feeling of nothingness - if there is such a word.

Another example was when our dog disappeared from our yard. I calmly came in and told Teresa that Zoey is gone. What "scared or shocked" me was the fact that I felt indifferent to the situation. I did not experience sadness, fear, anxiousness, regret, panic or anything at all. Yes, I love Zoey and she is a part of the family, but I did not even feel the need to comfort the kids because their dog was gone. And that probably scared me the most. It is a zombie-like feeling and my actions almost robot-like. Fortunately, Zoey was found and happily reunited with my family, but her being gone and her being found did not alter my absence of feeling anything in the least. For me this is probably one of the worst side effects of this drug.

Another side effect that I experience is a lowered libido, which seems to be quite a common side effect - and not at all a nice one at that. I also started experiencing what feels like claustrophobia when I would be surrounded by people, something that I never struggled with before. This usually happens when I walk into a shopping mall. My hand would start to tremble and burn, I would start sweating, my breathing gets erratic, I get anxious, my heart is beating faster, it feels like I am in this bubble that is going to pop at any moment when I get near other shoppers. I find myself starting to hide my hand again, becoming overprotective, avoiding being too close to other shoppers.

Often the drug also causes brain fog, which just make you feel like you are zoning out all the time - just staring into the distance. Someone would talk and you will listen and hear everything that is said, but appear to be non-responsive and they therefore assume that you are not listening. It affects my short term memory and often results in me struggling to get to some of the most basic words or terminology when talking to people - even on subjects that I am knowledgeable about. I think some people might think that I am having a stroke when my sentences at times come out as slurry or irrational. Funny enough though, writing helps to keep me focussed and enables me to organize my thoughts.

I know that for a lot of people Cymgen or Cymbalta is a horrible drug, and it is one of those drugs that you cannot just let go - you need to be weaned off it over time. And it probably is a horrible drug, and yes I do not like the side effects at all, but for now the pain of the CRPS outweighs the side effects of the drug, and although it is horrible side effects, and although I am trying very hard to fight these side effects I am willing to stay on it while the pain is being managed - for now at least. For now, it is probably choosing the lesser of two evils to at least help me cope and manage my pain. So the purpose of this chapter is not to condone nor to promote Cymgen or Cymbalta but to purely share my own personal experience on it.

Alternative Treatment

Yes, as many other CRPS sufferers, I also went to see a Pain Management Specialist. And as there are CRPS sufferers that had wonderful experiences with their Pain Management Doctors, I had quite the opposite. According to the doctor that I visited Cymgen is the last line of defence as this is the strongest of drugs that might help for CRPS, especially as none of the others helped. This however was not the bad experience, as I have already been informed of this by my other doctors. No, it was when he started to sound like a sales rep, trying to sell me a "solution" to "fully cure" CRPS. I mean who wouldn't want to be fully cured? Unfortunately, it is not that easy. He sat me down and explained that the last step, should Cymgen not help, would be to get a Spinal Cord Stimulator (SCS) which is a device that is implanted under your skin, with wires that goes all along your spine and into the affected limb. It basically does the job of neurotransmitters in your body. What concerned me was the fact that he tried to sell this to me as a 100% cure for CRPS. There is no 100% cure, but besides that, I am not ready for taking this step yet. I remember when I told one of my physicians about this. He told me, "Run...no-one in the medical profession can ever sell you a 100% cure for a medical issue, not even me". I recall him telling me that from all his patients he only had two patients ever that he offered a SCS to, and those were patients where nothing else worked, not medication, not operations...and in their cases it gave them a 15% improvement. To those patients, 15% was a huge improvement as they were able to do things that would otherwise have been impossible. So yes it does work for some people, but not as a 100% cure.

Listening to testimonies on the various support groups, SCS seems to be a big topic of debate. On the one hand you have people for whom SCS makes a huge difference, which is awesome. On the other hand, you have those for whom it did nothing and/or caused extra pain or discomfort, even made it worse. Unfortunately, it often seems that those that the SCS does not work for is in a higher percentage group than those that found it to be successful. It might simply be that the success stories are not heard as often as the stories of failure. I do think that it also differs from person to person, just as with medicine. For me Lyrica did nothing, for somebody else it may work wonders. You only have to look at how CRPS work to realise this. For me cold is hell for my CRPS. It causes flare-ups, it increases the pain and burning. For other people their trigger is heat. For me when my hand is burning, ironically Heat helps to calm it down - not cold. For others, cold calms it down and not heat. The triggers for each person is different, which makes sense as we are all different people with different personalities and makeup. One of the reasons why it is called "Complex".

Spreading of the disease

One of the issues with CRPS is that, unless there is visible swelling or skin colouration, it is also one of those diseases where patients often seem to be "healthy", when in reality they are in immense pain, very tired and often also depressed. It is a disease that is often not visible on the outside...but that does not make it less real than diseases like cancer, lupus, MS and a number of other diseases that is often also not visible on the outside, until it flares up. What it is, is a disease that is often misunderstood and misdiagnosed. And if you have not experienced it for yourself, it might not be easy to fully comprehend what CRPS sufferers are going through. It is not always easy to accept that which you do not understand. I mean, we that do suffer from CRPS, experience it every moment of every day, and even we do not understand a lot of it. I have said this before. Each day is like a lucky packet - you never know what new surprise(s) you are going to get.

Some sufferers experience CRPS in one limb only, others in multiple limbs and still others might have full body CRPS. Some sufferers experience the CRPS spreading to other parts of their body while others only experience it in one part of their body. Yes, it is possible to spread, and it is a real fear for many sufferers that it will indeed spread. It is a nasty disease that you cannot cut yourself off from, no matter how many skills and focus and meditation you use. Yes, all of this is important and it does help a lot, and you should do it, but the fears are always at the back of your head. For myself, when I have a flare-up, it often feels that it is moving to my elbow. Often I put it out of my mind, hoping that it is just displaced pain from the flare-up that I am experiencing in my hand, but what if...

CRPS is not a new disease, nor is it an older person disease. When I was diagnosed, it was the first time that I have heard about CRPS, but speaking to other sufferers I quickly learned that there are a lot of people that has been living with this for years and years. I also learned that there is a lot of teenagers and even small children that are suffering from CRPS.

To be or Not to be...what to do with Chucky?

I had to make a decision early on in my diagnoses and treatment - whether I am just going to accept CRPS as my new norm of living, or whether living in spite of CRPS is going to be my new norm. I chose the second option. Have I been able to reach this yet? NO not by a long shot, but I am working at it every day. And as long as I am able to be working at it, I have not stopped living. One of the stages of grief that you have to go through is acceptance. This is not accepting CRPS as a death sentence and therefor giving up. It is rather accepting it for what it is and working on getting a better understanding of it so that you can focus on living life to the fullest. It is accepting that the past is just that, the past. It is accepting that you need to rethink the way you do things, in order to build a better future. It is accepting that no matter how painful CRPS is, you have a second chance on life, not an easy one, definitely not a perfect one, often a challenging one, but a second chance on life none the less. What you do with it...well that is up to you.

One of the changes that I had to make was to change my attitude towards Chucky. I had to start loving it again, nurturing it, praising it when it did something well and showing empathy and understanding when it failed or hurt or just did its own thing. So we made an agreement - we would try not to hurt each other. I would stop seeing him as Chucky the vengeful one, regardless of whether he complied to this agreement or not, but because I wanted him to be part of my body again. So as a start I would start to see him as my apprentice...and not as Chucky anymore - regardless of how far and distant he would feel.

I would approach him like when you are trying to win over the trust of wild and scared dog or cat that has been abandoned on the street and that had to fight for himself for so long. In the same way that you would approach this dog/cat, trying to win over his trust so that you can take care of him, in spite of his mistrust of humans, I had to approach my hand as well.

Gaining mutual trust was(is) not easy. I had to verbally tell my hand that I trust him not to cut off my left hand while using a grinder, or not to hit my left hand with the hammer - that they are not enemies. It did not take away the fear of doing so, and at times he would still drop things or injure my left hand, but it suddenly felt that there was more of a symbiotic relationship developing where I would listen to his pain, but he would also try to behave. Yes, there are still things that I do not feel comfortable in doing, like belaying my child when he is rock climbing for example. So yes I still have not tried it, not because I do not want to - I so badly want to - but because I still do not trust my hand enough to do so. It is a process.

Another thing that I found was that almost always I would experience more extreme pain after I tried something or did something where I had to use my right hand. I recall my staff having to do paving at work. They have never done this before so I had to teach them how to do it. As I like to be hands-on, it was very difficult for me to do training from the side-lines. Being new to this, it took them 3 days longer than it would have taken an experienced team, so on the last day I decided to jump in and assist them. This was the Thursday before a long weekend and we finished the job late at night. Although I tried as far as possible not to use my right hand, it was not always possible. So for the rest of the weekend I was on my back, neck flaring up, right hand swollen, stiff, sore, burning, oversensitive, really given me hell.

So the week after, I discussed this with Wendy and she replied with this: "Knowing that your hand will react or counter react to what you are doing, you will have to choose your battles. Ask yourself, this task that you need to do, knowing that it is going to have the following response from your hand - is it necessary, is it worth it? Some tasks may be necessary or worth it - like building a bed for your son or helping the staff to accomplice their goal - know then that you have to expect your hand to flare up and be prepared to deal with that. If it is not necessary or worth it, do not do it - maybe somebody else can do it. You need to learn to give tasks over to them. Know to protect your hand, but also know to pick your fights carefully so that you are prepared for what is coming next"

And this is probably one of the hardest lessons that I had to learn thus far. For someone who likes to be hands-on, in control and be actively involved, it tends to be very difficult to let go and let others. But you know, when you do...people may just surprise you.

CRPS My Journey - Chapter 3: Chucky part 2

CRPS defined

"Type 1 complex regional pain syndrome (CRPS 1), formerly known as reflex sympathetic dystrophy (RSD), is a clinical syndrome of variable course and unknown cause characterized by pain, swelling, and vasomotor dysfunction of an extremity. This condition is often the result of trauma or surgery." 

"Causalgia is technically known as complex regional pain syndrome type II (CRPS II). It's a neurological disorder that can produce long-lasting, intense pain. CRPS II arises after an injury or trauma to a peripheral nerve. Peripheral nerves run from your spine and brain to your extremities" - Definitions: Mayo clinic

Various sources estimate that up to 90% of CRPS sufferers possibly do not have direct nerve damage and thus falls into Type 1 CRPS category. 

The struggle is real

I was never one to back down from a fight, but being at war with yourself, especially with something like CRPS pushes you to a total new level. You are tired all the time. Everything becomes a struggle - to get up in the morning, to go to sleep at night, to stay asleep, to smile through the bad days, to talk to people, to do activities, to push through the barriers...even to breath - everything makes you tired, it involves lots of effort. Things that you usually do without thinking about it like brushing your teeth or breathing, walking etc...you suddenly become very aware of. At times it may feel like you are standing in front of this huge mountain. While you are still struggling to get the courage to place one foot in front of the other to start climbing, you see your peers around you running up what seems to them to be a small hill. And it often feels as if you have barely started your climb when they have already finished the race without breaking a sweat.

But eventually you also learn not to compare yourself, and your new "disabilities", too much with the abilities of others, even when it is often hard not to. Getting to grips with not living in the past and not being able to do what you used to do, is more difficult than one might realise. With Chucky I had to go through all the stages of the grieving process. And to a certain extend I am still experiencing some of the stages from time to time.

Although CRPS is not curable, it may be possible to go into remission from time to time. What I have found with Chucky was that I had bad days and extremely bad days. Especially in the first couple of months most of my days would be extremely bad days, but once in a while I would have a "good" day - which was actually just a bad day with less pain, swelling and burning - you know like a bitter pill covered in sweet chocolate. If you keep the pill in your mouth long enough, the chocolate melts away and the bitter sting of the pill hits you like a hammer and lingers for the rest of the day. And I always feared those days more than the extremely bad days, because whenever I would have a "good" day, it would be followed by 2-3 extremely bad days. Normally with an extremely bad day you more or less knew what to expect, but after a "good" day, there would usually be some new "issue" as well. It was like opening a lucky packet every day and getting a new surprise each time - a horrible vicious circle.

As said before the type of CRPS that I was diagnosed with does not react to pain medication. In actual fact, as explained to me things like CBD and morphine only aggravates it, making it worse. So why is Chucky acting the way he is, when I do not have physical damage to the nerves? The answer lies in the brain as the control centre of the body. 

An Amazing Organ that can be so Cruel

The brain is an amazing thing, but it can also seem to be very cruel at times. Living with neck pain for so long probably contributed to me developing CRPS. Someone once told me that as bad as it seems, I can be thankful that I had the hand operation first instead of the neck operation, as the CRPS would most probably have targeted my neck - one of the reasons that we want to postpone a neck operation for as long as possible.

So in layman's terms, how does CRPS affect me the way it does. Due to the constant pain,
my brain has started to compensate on various levels. One way was in the way it viewed my hand after the operation. Pain is an abstract construct. It is the body's alarm system that sounds as soon as danger is near. So when I had the operation, my hand sent messages all the way up my arm through my nervous system, up my spine to my brain to warn that there is danger. However, because my brain has changed its view of my hand, it also changed its response, as well as how it interpreted the warning messages it received. So while my hand kept sending these constant messages to the brain, the control centre, to say that there is danger, the brain never sent back the messages to the hand to let it know that the danger is gone and that my hand is actually healed. As a result, this caused my brain to almost not acknowledge my hand by making my hand feel as if it does not belong to my body any more. It also caused my hand to become oversensitive to touch and caused this constant feeling of immense pain and burning, excessive sweating, swelling, change in skin colour, loss of hair, twitching, horrible reaction to cold temperatures etc. And although the brain is involved, and although it might have seemed and felt like I was going crazy, I had to learn and accept that this is actually not a psychological problem, but a physiological one. Yes, it affects your psychology at the end of the day, but it is because of this physical changes that is taking place inside the brain. If only Chucky could also realise and understand this, but there was (and still is) a long way to go towards total acceptance and gaining respect for each other.

Therapy

I was introduced by the spine specialist to this amazing Physiotherapist, Hesti. Hesti is a no-nonsense, straight shooter therapist that fully invests in her patients. She wasn't afraid to give me straight answers to the often difficult questions that I had on CRPS. When I started with the physiotherapy, she sat me down, asked a lot of questions, did some tests and then started to explain the type of therapy that we would be doing. As I listened I thought, how on earth would this type of therapy help my hand to heal and the pain to subside, but I was ready to try anything. 

I remember Hesti asking me why I wanted my hand to be healed. I mean really, isn't it obvious? But it made me think, apart from getting rid of or minimising the pain, why did I want it to become better. And I realised that one of my biggest motivations was to be able to build memories with my kids again and to be the husband to my wife that she deserved. I didn't want to feel helpless and hopeless. So in order to work towards getting better, I had to deal with both my overactive emotions, as well as my oversensitive hand - two things that at this stage were fuelling each other. 

We started off with some physiotherapy and then went on to start with Stage 1: Left/Right Discrimination. According to the Neuro Orthopaedic Institute, "this is a process which requires complex brain activity. Results have shown that this process reduces many chronic pain states like CRPS, Phantom Limb pain, Osteoarthritis etc. This process trains your active parts of your brain associated with movement to discriminate between your left and right limb without firing off a pain response." (www.gradedmotorimagery.com)

Left/Right Discrimination consists of a number of cards of the specific limb that you are struggling with. The idea is to be able to correctly distinguish between the left hand and right hand pictures within a certain given time. Looks and sound much easier than it actually is. I got about half of it right on my first try and took much longer than the time allocated. It is strange and frustrating at first. When you do this for the first time it feels like your brain is physically spinning around in your head as it is scrambling to try and make sense of what is happening. It is a strange, strange experience. The more you focus on this however and the more you do it, the better it becomes. At this point we were trying to work on the pain and burning, but also on the distant, disassociated feeling of Chucky. And of course Chucky did not like this at all.

My homework for the first week was to try and do some sketches and time myself to see how long it would take for Chucky to start complaining. I barely reached 20 seconds, if that much, before I could not stand the pain any more. Next we had to try and unlock the drug cabinet in my brain to motivate my brain to start creating its own natural opioids. This was partly to be done by walking 2 km each day (trying to get some exercise) - not an easy task when you do not have any energy to do so - very difficult to motivate yourself in such a state. And then I had to do the left/right hand discrimination. At the end of the first week Chucky felt enraged and I felt that I had no strength left. I had to keep a log of everything, also my sleeping patterns. We had to find a solution to my insomnia, caused by the pain, in order for my body to be able to get the necessary rest so that I would be able to manage the pain much better. I felt really discouraged. And I became angrier - angry at myself for not being able to reach my goals, angry at Chucky for not working as a part of my body and doing its own thing. And as time went by I started to resent Chucky.

I remember telling Hesti that I think it would be better to have Chucky cut off. I was used to pushing through pain barriers, but this time it was just too much. I could not handle this anymore. Hesti looked at me and asked, "So let’s say we cut off your hand, and the pain is still there, what then? All you would have done then is to create another problem as now it would become a phantom limb, meaning that the limb is gone, but the pain is still there." And then I started to understand what she meant by her explanation right at the start that this is a physiological change in the brain in how it views my hand...but I still wanted to get rid of Chucky.

People that know me probably thought that I've totally lost it as I would have these constant verbal fights with Chucky. To me my right hand has not only gotten its own personality, it has become its own personality in the form of Chucky. I would say go left, Chucky went right; I would say pick up the cup, Chucky would drop or throw the cup; I would try to fix something, Chucky would attack my left hand by sticking the screwdriver in it; I would try to get some sleep...Chucky would shout and scream as if he was having a rave or rock 'n roll festival and kept my whole body up. It was like dealing with a rebellious child that would throw tantrums when he did not get his way, or when he did not get any attention. When I ignored him, he would scream in pain and flame up.    

In October 2021 I wrote the following on one of the support groups:

"Does anyone else have conversations with their affected limb? My hand and I had a fallout yesterday so we are not on speaking terms at the moment. Kind of a love/hate relationship. He's got a mind of his own. Ignores me totally. I talk to him he growls by burning. I scold him he shouts at me with pain. I'm afraid if I smack him he is going to hit me back. He's crazy

Perhaps he feels punched in the gut because I am trying to have some normality in spite of him, thus causing him to get less attention. Sorry Chuck but suck it up buttercup!"

This was my new reality that I had to deal with every single day, and us not being on speaking terms happened quite often. Chucky constantly felt far away, as if not part of my body. When I touched my face, it felt like somebody else's hand touching my cheek. Even when I looked at it, it did not look like my hand. There was this constant distant feeling, apart from the pain and burning. But even then, I felt the pain and burning and horrible sensation when I touched stuff, but it did not feel like my hand. It is weird to describe. 

I recall the first time that I did the mirror therapy. So the way the mirror therapy works is that you have a "box" where you place the affected limb (in this case my right hand) in, so that you can't see it. Then you remove everything like your ring, watch etc. from (in my case) your left hand so that it looks the same as your right hand. You then keep your left hand in front of you on the table. So what your brain is seeing is "both" hands - i.e. your left hand on the table, and the hand in the mirror (which is a reflection of your left hand, but looks like it is your right hand). It is very awkward doing it the first couple of times. So Hesti told me to keep my hand still in the box, while I do certain motions with my left hand while focussing on the hand in the mirror. 

Now I don't know if you have ever tried to do that exercise where you put out your right leg and start turning your foot in circles to the right. Next you take your right hand and do circles in the same direction as your foot and everything goes well. Finally, you start turning your hand in the opposite direction while you try to keep your foot turning in the original direction, and it is chaos. No matter how much you try, your foot automatically changes direction as well to synchronise with your hand. It feels like your brain is going crazy trying to comprehend what is going on.

The same happened when I did this Mirror therapy exercise, but more than just this feeling of my brain spinning around, Chucky started to scream from the top of his imaginary lungs. He started to curse in pain, spewing flames as my brain could not reconcile what was happening. My brain knew that my hand was in the box, not moving, but it saw my right hand in the mirror moving - it could not understand how that was possible. I remember Hesti asking me which hand was in pain, the one in the box, or the one in the mirror. I mean really...Chucky, my affected hand. And again she asked me stating that it made a big difference in whether it was the hand in the box or the hand in the mirror. So I replied, the hand in the box. So she explained how my brain was trying to process what was happening and as a means to do this the pain signals were being fired up to try and find that "normality". 

And I find this often. Thinking back on when I started going for therapy and as tried new drugs (which I will be addressing in the next chapter) I often found myself putting my hand in front of the car's aircon just to feel the pain, to feel alive, in times when the pain was less or suppressed. Although CRPS is a physiological issue, it has the ability to mess with your mind. and that may be part of the reason why you feel drained and tired all the time. It keeps you in this constant battle with yourself. It prevents you from getting to the deep sleep that you need for the body to restore itself, and by doing so it creates various other issues. It is not an easy path, and it does have a much greater effect on your family than you think.

Is there a cure for CRPS? NO! Is it possible to go in remission? Hopefully YES. As life and my faith told me, anything is possible. I want to close off this chapter with a story that may give a bit of hope to somebody out there. 

Pushing the limits

In the midst of trying to manage my pain and getting my pain and emotions under control, I decided to build a bed for my youngest son. Yes, some may say a very brave thing to do, others might say a very stupid thing to do - for me it was a matter of proving to myself that I am not helpless or hopeless and that Chucky is not going to determine my life and what I can and cannot do. I ordered the raw material, tried to do some sketches of what the bed had to look like (and yes simple was not going to do it, it had to be spectacular, practical and somewhat challenging - as if CRPS was not challenging enough. I mean everything about it from holding the hammer or screwdriver, to cutting the wood, assembling and finishing off was challenging). I decided on a 3/4 loft bed with cupboards under the bed where he could store his toys. This was probably one of the most daring things I have done since I have been diagnosed, and while my pain levels were still through the roof - but I started on this project. Now normally such a project may take a day or 2 up to a week, depending on how much time I have to work on it.

It took me 7 weeks to complete this project, but I did it. Believe me there was a lot of swearing and crying and shouting - from both myself and Chucky - a lot of blood and sweat. I would work a bit, stop and try to ease Chucky's pain, then work a bit again. A simple thing like driving in a screw would sometimes take me 5-10 minutes to do as I struggle with the weight of the drill, or Chucky would just drop the screwdriver. Cutting the material, making sure it was straight and secure took me half a day, with lot of prayers that the Lord would just protect me from cutting of my left hand in the process. Every tool that I picked up felt like a ton, Chucky was complaining, sore and tired and quivering...shaking at times. But you know what, I did it. Yes, I was in a hell of a lot of pain afterwards, but it was worth it. I have proved something to myself and seeing the joy and pride on my young child's face was worth every bit of pain, every burning, every tear. In that brief moment the look on my child's face overshadowed the grief that Chucky brought me.

I just need to add - one thing that I did not do was the routing of the edges. Sorry but I just did not trust Chucky enough to do this after the great job that I have done up to that point - in spite of Chucky - so I asked a friend to do that. But for the rest of it I was able to do it by myself. Yes, it was not as perfect as I had hoped, yes some things I would have wanted to do differently, yes the fine motor skills were hell, especially when I made the knobs, but I did it, I conquered something in spite of this disease.

For those of you out there that are struggling with CRPS, may this be an inspiration for you to challenge yourself in spite of the CRPS. No matter how small you start, take the challenge and regain some of your life that was stolen from you.