CRPS My Journey: Chapter 19 - Truth & Perceptions!

Truth

Truth may seem clear cut, but it is not always that simple. Well...not the Truth itself, but rather one's perspective on truth. The truth is constant, it is what it is, but how you and I view that same truth may differ vastly. When the apple falls from the tree, it falls. That is the truth. The fact is that the apple fell from the tree. Our perception of that truth may differ however. The person standing behind the tree had a totally different perspective than the person standing in front of the tree, or to its left or right. To the person in front of the tree, the apple fell because of a gush wind that he noticed. The person behind the tree perhaps saw someone shooting the apple, while the person to the right of the tree saw that the apple was eaten away by birds. The person on the left of the tree saw the apple hanging on the tree, and the next moment lying on the ground. Who of these people were right? All of them. The truth was that the apple fell from the tree. Everyone's perspective of how that happened, was different because of their angle of view of the same incident.

If I were to place a box under a cloth and ask 4 people to sit on either side of the box and I lift the cloth, what would they see? Yes, a box. That is the simple communal truth. If I ask each person to describe what they see, what answer do you think I will get? Yes, four different accounts of the same box. Someone might see a drawing on the box, another might see writing, yet another may see a hole in the box, and yet another may see a sticker on the box. So again who is right? All four of them, as the communal truth is the box, but their view or perception of that truth differs. Person number 1 cannot say that person number 3 is wrong because number 3 sees a hole that is not there, while number 1 is clearly seeing a drawing. How would person number 1 know that person number 3 is telling the truth? By standing up and moving into the position of person number 3. Person number 1 need to be able to see the truth from person number 3's perspective.

The truth did not change. It still is what it is. So what changed. The way we perceive or view the truth. And that is where conflict over the Truth often occur. We need to get out of our own comfort zones and get into the shoes of the other person (Figuratively speaking), and view the truth from their perspective. When we look only from our own perspective, we are like a horse with blinkers on that sees only a partial truth - a one dimensional truth. So many conflict can be avoided if we learn to look at the truth from various perspectives, even if it makes us feel uncomfortable.

Recently I was speaking to a good friend and I shared the following. When I was diagnosed with CRPS I had to learn that I cannot live by what I perceive or assume how Teresa would react or see me. We build these images of the people we are closest to, without really listening and understanding, and we act upon that, rather than the truth. And everyone looks at the truth from their own perspective or point of view, assuming the worst in others because their view of the truth might be different. 

The Truth in this case was my CRPS diagnosis. The perspective? My assumption that Teresa would see me as less of a man. My belief that I need to be the strong one, the one that need to be there for her - always - as I have tried to be during the last 20 odd years that she has had SLE. My fear to burden her with my health issues. Her perception: Me shutting her out and not wanting her to share my burden. Did the Truth change? No, the Truth was still me being diagnosed with CRPS. So what was the issue? Our different perceptions of the truth. I had to change my response and my perception on the truth. I had to let her in and I had to trust that she would be strong enough to share my burden, as I have shared her burden for so many years. I had to allow myself to be the weak one and allow her, and TRUST her, to be my strength.

I read the following the other day, which sums this up:

The man doesn’t know that there is a snake underneath. The woman doesn’t know that there is a stone crushing the man. The woman thinks: “I am going to fall! And I can’t climb because the snake is going to bite me! Why can’t the man use a little more strength and pull me up!” The man thinks: “I am in so much pain! Yet I’m still pulling you as much as I can! Why don’t you try and climb a little harder!?”

The moral is— you can’t see the pressure the other person is under, and the other person can’t see the pain you’re in. This is life, whether it’s with work, family, feelings or friends, we should try to understand each other. Learn to think differently, perhaps more clearly and communicate better. A little thought and patience goes a long way. ❤️

~ Author Unknown 

What makes facing the truth so much more difficult is, that besides people's perspective on the truth, people often tends not to be transparent. Perhaps it is due to hidden agendas, or perhaps it is selfishness or a lack of trust. As humans, we often think that people are out to get us. We often think that people have ulterior motives, and this is not always an unfounded fear, as, unfortunately, some people do have ulterior motives. The issue with living a life where we always see the worst in people however, is that we lose the ability to discern when people are truly faced by a truth that alters their lives in a way that they really need support and understanding. 

The truth, which in this case is CRPS, is the one common denominator that unites all CRPS warriors. Our perceptions or our experiences of what that truth means in our lives however may differ vastly. How do I know if, what the other person is experiencing, is the truth? I need to try and put myself in their shoes, look from their perspective and try to understand from their experiences - not my own preconceived ideas or perceptions. Being in my line of work, I am always busy with risk analysis. But what is Risk analysis? I can give a well-educated answer to this, but if I need to break this down in simple layman's terms I would have to describe it as this: Looking from different angles and through different perspectives to the same Truth in order to minimize risk and to create a safe environment. So how do I approach a truth like CRPS? In exactly the same way. I need to view it from different angles and through different perceptions in order to understand other people's experiences of it.

DBT (Dialectical Behaviour Therapy)

In the last chapter I started talking about DBT. The main focus of DTB is to teach people skills or strategies to help them live their best and most productive lives. It is helpful for people with depression, addictions, PTSD, anxiety etc.

The four core skills that we will discuss is:

1. Mindfulness - the core skill in DBT is being able to non-judgmentally observe yourself and your surroundings. You will become more aware of the physical and mental triggers that cause runaway emotions.

2. Distress Tolerance - deal with painful situations. When you can't change the situation, learn how to tolerate it, accept it, and move forward.

3. Emotion Regulation - learning to make your emotions work for you. Learn to recognize when an emotion is unproductive and change it into a more productive emotion.

4. Interpersonal Skills - change the way you communicate so you get more out of your relationships. Learn to communicate what you want. Become comfortable saying no.

DTB assist you in dealing with the common Truth in ways that help you to cope with it. In my case it is CRPS - that is the Truth. Every core skill that I apply is focused on helping me coping with that Truth. The first skill we will be focusing on is Mindfulness.

Mindfulness

Coming from a strict Christian Afrikaner background, yoga, meditation, mindfulness etc. were things to be frowned upon. It was seen as being part of Eastern and New Age religions and therefor seen by the church as being sinful in nature. And although there may definitely be those elements in Eastern and other world religions, as with everything else, anything can be sinful if you allow it to be. So when I was first introduced by Hesti to Mindfulness, I did not know what to expect, and I was understandably cautious. I soon learned that Mindfulness in itself is a management skill that we often misunderstand due to our limited, and often single-minded, approach to things that we do not know or understand. Mindfulness as a managing skill has nothing to do with having a religious or spiritual experience - it can be, but that is not the intended purpose.  

Mindfulness is a way of focussing on yourself, on your body, the way you inhale and exhale, becoming aware of things that we take for granted, things that come so natural that we do not think about it. Often we learn bad habits in how we breath, especially when you had a respiratory illness. Your often start to breath shallow. In my case mindfulness also helped me with correcting the way that I breath. 

I grew up in an era where we were taught that self-love was wrong and selfish and that you need to love others more than yourself and always place others first. The Truth however is, that if we do not love ourselves, how can we love others. If I do not take care of myself, of my own mental and physical state, how can I take care of others that suffer. In Matt 22:39 and Mark 12:31 Jesus says that we need to love our neighbour as we love ourselves. We were always taught to focus on the first part of these verses - love your neighbour - but were made to understand that love for yourself is wrong and selfish. And this could not be any farther from the truth. Jesus says to love our neighbours as we love ourselves - not more than we love ourselves. If we are to love our neighbours unconditionally and generously, then we need to love ourselves that way too.

Being mindful therefor refers to becoming aware of myself, of who I am, what I experience, what I feel and what I notice about myself. It is taking a break out of my day to calm myself and come to grips with myself, to just focus on me, so that I can cope better with whatever is troubling me, in order to deal better with 1. what life throws at me, 2. how I feel about myself (and Buddy) and 3. showing love and kindness to myself and those around me. 

There are various ways that people achieve or practise mindfulness. Whether it is in your quiet place where you spend time with God, or through music or the sounds of the ocean, or listening to someone with a calming voice - or whatever skill you use to achieve this - everybody need to find what works for them. I have my quiet times, but I also use a technique that Hesti introduced me to - especially when I know that I have a rough day ahead, or even in the middle of a challenging day. (I will post the link below.) 

Mindfulness is a process of rediscovering myself and seeing myself with all my flaws and shortcomings as equal. Not equal to others but equal to myself. In other words, in my case, with CRPS in my right hand, I can experience every part of my body as an equal part, without judging myself or my disability. I can be aware of what both my hands feel and experience, although it may be different, without speaking judgement on myself.

Mindfulness is the foundation of DBT. In order to move on to the other core skills in DBT one need to master mindfulness. Mindfulness helps you to be present in the moment. It helps you to feel life for what it is in the present and not live years in the future. It helps you to accept with the here and now, and not to worry about what may or may not be in the future, of which you have no control in the present. In order to master mindfulness, you need to practice the principle of acceptance, as accepting life for what it is in the present, whether good or bad, helps you to slow down and start focussing on the positive around you - no matter how stressful or negative a situation could become. 

Mindfulness has helped me a lot, especially during my angry and frustrated season when CRPS was at its worst. It helped me to slow down, to take my focus away from my hand and my pain for the moment, to work towards acceptance and forgiveness and to stop judging myself. It helped me, and still helps me, to just be in the moment, to live one day, one moment, one breath at a time. It helped me to become more aware of myself - not only of Chucky at the time - but also the rest of me. 

This then is the 1st skill of DBT. You don't need to have an illness or disability for it to mean something to you. We all need to practise this from time to time. It is a time to be bare honest and non-judgemental with yourself and to become aware of your being in the here and now.

For those that want to try this, you can follow the link below. Next time we will be looking at the second step/core skill of DBT - Distress tolerance.

 https://youtu.be/WUASVHlfXeI

 

Update on my health

So I was supposed to go for the 2nd rhizotomy on 15 March, but landed myself in hospital on the 14th due to unrelated issues. The previous chapter was written from my hospital bed. I was admitted with cellulitis in both legs. The doctors still have no idea how I contracted it as there were no bite marks, scrapes or lesions. Also the fact that I contracted it in both legs were perplexing to say the least. Fortunately, they found no traces in my blood, or in my bones or the membrane around the bones. But it still meant 4 days in hospital and a week and a half on bedrest with some heavy medications. Initially I thought that it may be an allergic reaction to some new meds that I was trying, but then when my legs started to flame up and swell, and became painful it almost felt like CRPS spreading to my legs. Fortunately, this was not the case, but it sure felt the same in many respects. 

The worst, however, is over. The inflammation and pain is largely gone. My legs still swell a bit when I were too active during the day, so at night I have to elevate it. On my birthday my wife and kids took me out for a picnic at the dam, and we took a stroll around the dam, which aggravated my legs quite a bit, but I am pacing myself.

But what was Buddy's take on what was happening. Before I was admitted to hospital, the doctor put me on a drip in her consulting room and administrated antibiotics and strong pain meds through the drip. Fortunately, she knew what CRPS is, and I also had my medical bracelet on, so she used my left arm instead. It burned like hell and I could just imagine how my right hand would have reacted if the drip was on the right. I had to constantly tell Buddy that this is not about him and that he needed to relax, even in hospital. He was like one of those small dogs that displays territorial aggression whenever someone enter its space. He would start to growl whenever the nurses would come close to change the drip, or take my blood pressure etc. What was refreshing, was that some of the nurses knew what CRPS is, so they knew not to bother Buddy. But yes, time and again I had to tell Buddy to sit and stay and stop barking. Besides that, he behaved himself better than I would expect.

I saw the surgeon again on the 5th of April and he was very satisfied with my legs' healing process. It can still swell up for up to 6 weeks, but I just need to be careful. Due to me being hospitalized, the rhizotomy was moved to the 12th of April, but it has been postponed again (now for the 5th time) to 19 April 2023. So hopefully it will not be postponed again.

Regarding the Cymgen, I started reducing on the 16th of March to half the doses per day. It was the same period of time that I have been on strong pain meds and antibiotics in hospital, as well as the recovery time afterwards. With the pain in my legs and the drips and lots of extra medication, I did not focus on any side effects from reducing the Cymgen - not to say that it was not there, my focus was just on the cellulitis. However, I stopped with the extra meds on the 31st of March. On the 1st of April I became irritated, the Sunday still so, and then I started to become very anxious - 24/7 - with sweaty palms, heart racing in my throat and feeling jittery all the time. It felt like withdrawal. I had a consultation with my doctor, and she said that she thinks it is my body that became used to the Cymgen and is now craving the anti-depression part of the medication. She does not think it is withdrawal though, but in my mind, if my body is craving some chemical that has been reduced, isn't that what withdrawal is though? Anyway, so she took me off Cymgen with immediate effect and placed me on Serta as replacement to counter the anti-depression part of the medication, which will take about 2 weeks to kick in, as well as an Urbanol to use in the meantime. 

Interesting though, is that I have not been anxious or depressed before I went on Cymgen. Cymgen was prescribed as it is the best medication to deal with the pain. The anti-depression part came in as this medication is also prescribed for depression - so it was an added effect to what I needed at the time. Now that I have been on it for a while, it seems that my brain has gotten used to the effect of the anti-depression part, that it did not need, but now craved. It is a fact that our bodies and our minds change as we grow older, but it also goes to show how, what we put into our bodies, can change our whole blueprint, and suddenly that which never used to be an issue before, now seems to be integrated into our being.

I am still continuing with the Epleptin for pain management, which she also wants to push up to at least double the doses. Apparently I can go up to 1800mg per day (600mg three times a day). So we will see how it goes. Will keep you updated.