CRPS My Journey: Chapter 11 - Colour the World Orange!

When the Fog rolls in!

Have you ever hiked in thick fog? Especially early morning as the sun is just starting to lift its head above the clouds? One moment you are still walking in thick fog, confused, wondering if you are on the right track, with your eyes fixed on the ground in front of your feet, as that is all that you can see. And then suddenly you come around the bend, and the fog is slowly starting to open up, and so is your mental state as you start to notice more of your surroundings, smelling more of the fynbos around you, with glimpses of sunlight breaking through the thick fog. Suddenly you cannot wait to greet the new day that is dawning upon you. It is as if you have just gotten a second breath...and then the clouds start closing again, and it starts to rain and you see the parking lot, and your car - and suddenly it strikes you...damn I need to work again tomorrow...and in one swoop, your joy turns to feelings of depression.

Going off the Lyrica was much like that. The one moment I was still fighting the irritation and all the new side effects, and despite that it felt like the fog was somewhat lifting with me regaining my emotions, over the course of a week I could feel how the feelings was slowly draining away again, until this emotionlessness was left. It felt like a dream where you can see your emotions slipping away, and although you try to grab onto them, they just stay out of your reach. For those of you that have watched the 2015 Pixar movie, Inside Out, I think it is much like that.

So now I am off Lyrica and the feelings are gone, and I am back to faking it, but I do not have any regrets for making the decision that I made. Sure I miss the feelings, but I will find another way to get them back. And if I do not get them back, then I will find a way to deal with that too, as I think I have up to now.

The anxiousness when I enter the shopping mall still comes and goes, but I am dealing with it. One of the advantages of Cymgen I suppose, is the lack of worries. I think that everyone worries more about the side effects than I do, but then again, with the Cymgen I can be calm in difficult situations - perhaps too calm, but calm nonetheless. And this is not me going into denial as I know the side effects I am experiencing....it just is what it is.

The moral of the story!

My son had to do an oral presentation this week about a short story, so he chose Puss in Boots - the 1697 version of Charles Perrault, not the Pixar adaptation. One of the things he had to talk about was the moral of the story, so in preparation we went back to see what the moral of the story was in 17th century society, in relation to the revised versions of today. So in 17th century France the story was told to teach children about their standing in upper class French society and how important that was. It also taught that trickery as a means to prosper was rewarded greatly. Status and being part or the elite of the time was what mattered. If you were not part of Upper Class society, you were ridiculed and looked down upon.

Coming back to the moral of this exact same story in 2022, the moral is more diplomatic. Today it teaches our children that 1. even a small harmless animal like a cat can conquer a kingdom; 2. Like the cat we need to have confidence in our abilities and 3. the importance of using our intellect.

Interesting how the world, and the way we think, have changed in the last 4 centuries. Yes, we still find people in this century for whom wealth and status are everything, and although they may teach that to their children, that is not what is taught by the majority of society or in our schools any more. But why do I tell this story? Because something in the modern version's lesson struck me as being so true in our lives, even when we deal with something like CRPS, Lupus, Cancer or what other autoimmune or incurable disease we may be struggling with - That we need to have confidence in our abilities.

Weaknesses VS Strengths

Now you may think that living with something so dreadful and debilitating as CRPS, how can I have confidence in my abilities? It is like going for a work interview. One of the questions that they almost always ask is, "What are your strengths? What are your weaknesses?" I had a lot of interviewees that would tell me, "I do not have weaknesses". Really? Everybody have weaknesses, just as everybody have strengths. Some people think that they are too important or perfect to have any weaknesses, while for some people it is easier to name their weaknesses than their strengths, because they think too little of themselves.

Knowing both your weaknesses and strengths is what enables you to build your character and to better yourself or excel at certain things, and to move away from other things. When I used to go for interviews, my go to answer was always, "these are my strengths...da...da...da. I rather focus on my strengths. If you want to know my weaknesses, you are welcome to phone my wife, as she knows me better than I know myself". Looking back now, it seems a bit cocky, but somehow it always worked for me, as it would break the tension of the interview. But at a point I had to realise that it is important to know what your weaknesses are, and that knowing your weaknesses is not necessarily a bad thing. It simply means that you know what you need to work at, in order to better yourself.

Thinking of my journey the last year, there has been a lot of shifts between what my weaknesses and strengths used to be, and what they are now. Things that I excelled in, has suddenly become challenges. On the other hand, there were things that I used to see as weaknesses, that I now had to find a way to lean on, for example using my left hand more and more, even writing with my left hand. Thirdly there were also strengths that I always had, but that somewhere along the way made way to other things, or were packed away, that now have been forced to the surface again. Like writing for example. Life changes, circumstances changes...and humans adapt. That is how we were made, to adapt.

Isn't it Ironic though that the one thing that has become one of my greatest challenges and weaknesses the past year, which was learning to write again, is the one thing that I actually needed to build on one of my greatest strengths, which is writing. I had to learn to use a current weakness, to build on a forgotten strength.

Being Strong at your Weakest Point

In 2 Corinthians 12:10, Paul writes to the church in Corinth, and says: "Therefore, in order to keep me from becoming conceited, I was given a thorn in my flesh, a messenger of Satan, to torment me.  Three times I pleaded with the Lord to take it away from me. But he said to me, “My grace is sufficient for you, for my power is made perfect in weakness.” Therefore, I will boast all the more gladly about my weaknesses, so that Christ’s power may rest on me. That is why, for Christ’s sake, I delight in weaknesses, in insults, in hardships, in persecutions, in difficulties. For when I am weak, then I am strong.".

I know that this was in a different context than what I am speaking about, and I am not about to go into an exegesis of the text or on what was meant by Paul's "thorn in his flesh". What I want to bring to your attention, is this whole idea of being strong at your weakest point, and how often it is exactly that which drives us to be better than the day before, to be victorious, despite our challenges and difficulties. As Christians we believe that Christ's strength is shown, when we are at our weakest point, and that the reason for that is because our ego and our willpower to sort things out on our own, gives way to us allowing and trusting Him to work in us and through us.

I am reminded of the analogy or story of the carrot, egg and coffee bean.

A Carrot, an Egg, and a Cup of Coffee

A young woman went to her mother and told her about her life and how things were so hard for her. She did not know how she was going to make it and wanted to give up. She was tired of fighting and struggling. It seemed that as one problem was solved, a new one arose.

Her mother took her to the kitchen. She filled three pots with water and placed each on a high fire. Soon the pots came to a boil. In the first she placed carrots, in the second she placed eggs, and in the last she placed ground coffee beans. She let them sit and boil, without saying a word.

In about twenty minutes, she turned off the burners. She fished the carrots out and placed them in a bowl. She pulled the eggs out and placed them in a bowl. Then she ladled the coffee out and placed it in a bowl.

Turning to her daughter, she asked, “Tell me, what do you see?” “Carrots, eggs, and coffee,” the daughter replied.

Her mother brought her closer and asked her to feel the carrots. She did and noted that they were soft. The mother then asked the daughter to take an egg and break it. After pulling off the shell, she observed the hard-boiled egg. Finally, the mother asked the daughter to sip the coffee. The daughter smiled as she tasted its rich aroma. The daughter then asked, “What does it mean, mother?”

Her mother explained that each of these objects had faced the same adversity—boiling water. Each reacted differently. The carrot went in strong, hard and unrelenting. However, after being subjected to the boiling water, it softened and became weak. The egg had been fragile. Its thin outer shell had protected its liquid interior, but after sitting through the boiling water, its inside became hardened. The ground coffee beans were unique, however. After they were in the boiling water, they had changed the water.

“Which are you?” she asked her daughter. “When adversity knocks on your door, how do you respond? Are you a carrot, an egg or a coffee bean?”

The author of this story then goes on to explain: "Think of this: Which am I? Am I the carrot that seems strong, but with pain and adversity do I wilt and become soft and lose my strength? Am I the egg that starts with a malleable heart, but changes with the heat? Did I have a fluid spirit, but after a death, a breakup, a financial hardship or some other trial, have I become hardened and stiff? Does my shell look the same, but on the inside am I bitter and tough with a stiff spirit and hardened heart?

Or am I like the coffee bean? The bean actually changes the hot water, the very circumstance that brings the pain. When the water gets hot, it releases the fragrance and flavour. If you are like the bean, when things are at their worst, you get better and change the situation around you. When the hour is darkest and trials are at their greatest, do you elevate yourself to another level? How do you handle adversity? Are you a carrot, an egg or a coffee bean?

The happiest of people don’t necessarily have the best of everything—they just make the most of everything that comes along their way."

Colour the World Orange!

I think this is a valuable life lesson for all of us, whether you have CRPS or not. 

For those that have CRPS, the hardest thing is to be like the coffee bean, because we are often tripped by exhaustion, pain, depression and more. But although we may not be able to change our outcome in the sense that we cannot get rid of the disease or pain or burning, perhaps we can change our environment and the way we do things and go about our relationships. It is much easier to harden our hearts like the egg, and we often do it as we believe that this is the only way to protect our heart. The unfortunate truth is that CRPS does not only attack your body, it also attacks your relationships, your mental state, your dignity, your pride. So it is understandable to be like the egg, wanting to protect yourself. However, sometimes we need to allow ourselves to be vulnerable and let people in. We need to be like the coffee bean, and influence our environment in a positive way. If we want people to know about CRPS and begin to understand CRPS, then we need to be the ones that educated them. We cannot blame them if they do not know, when we do not take the time to educate them.

For those that do not have CRPS, the hardest thing to do, is often to support someone with CRPS, as they cannot really understand what the person is going through, because they haven't experienced it themselves. Also, they often cannot see the signs of CRPS on the outside. You can however create a safe environment where CRPS warriors can be themselves, where they can be honest about how it is going and what they are dealing with, without being pitied and without being judged. Furthermore, you can help to spread awareness by learning more about the disease, and by educating others about it. Even just by forwarding this blog. That could be your way of being like the coffee bean that changes the situation around you.

November is International CRPS month. The first Monday of the month, which this year falls on 7 November, is Colour the world Orange Day. During this time people are encouraged to wear orange in support of CRPS warriors. Everyone can help to spread the news, not only in support of CRPS warriors, but also as a way to create awareness about the disease.

When Pain becomes the new "NORMAL"

I remember years ago when Teresa got sick, we had gone through a lot of the same struggles, emotions, uncertainty, anger, fear etc. as I went through when I was diagnosed with CRPS. It was hard for a 20-year-old to hear that she must stay out of the sun, that she need to adapt to whole new kind of lifestyle, that it would be challenging for her to do multiple or even one day hikes. I mean how do you stay out of the sun from 12:00-15:00 when you are on a two-day hike. It is impossible, but what was the alternative? So she started to wear long sleeve shirts, long trousers, a hat (when at the beach or hiking etc.), and over time this became "normal for her. Even in 38 degrees’ Celsius weather her arms and legs are covered, in order to protect her as much as possible. Unfortunately, this does not keep the heat away, just the sun from her skin. The problem is, that when she is exposed to sunlight, she starts smouldering like a vampire...just kidding. But seriously, exposure to the sun and to heat, causes the lupus to flare-up in a terrible way, which means that you aren't able to touch her skin, her joints hurt really bad, she looks flustered, she gets nauseous, she is just in such immense pain which can last for days, weeks...even longer.

So a couple of years back, we were talking one evening, and out of the blue she said, "I don't know any more what it feels like to have no pain, as I have pain every day. I am afraid that if I should have a day without any pain, I won't be able to handle it. Pain has become normal to me; it is just the degree that varies". And this troubled me ever since, because it is not normal for pain to feel like it is normal. It shouldn't be normal. And it was only after I got CRPS that I could truly understand what she meant and truly sympathise with her, because that is what CRPS is...it is constant pain that becomes "normal" and causes you to fear a day without pain.

Another thing that I realised while speaking to someone over the weekend, is that if this is how I feel and what I experience having no physical nerve damage, I cannot imagine what other CRPS sufferers must go through, that have actual nerve damage. And then again, although all CRPS warriors have certain common experiences, no-one can say that their pain feels worse than another's. I don't know what someone else can handle, just as they do not know what I can handle. What I do know though is that the pain and burning that they feel, although a construct, is very real to them, just as it is real to me.

It is hard for people to understand thát which they cannot see, and I get it. If you think THAT is hard, try understanding it when you are the one experiencing it, without being able to see it - that is even harder. So I do not get angry at people that struggle to get their heads wrapped around this. Not at all. What does upset me is when that same people goes ahead and belittle someone that is going through something like CRPS, especially on their good days. Having a good day does not mean that the fight is over. It just means that you are in that calm-before-the-storm-period, you now like in war. That period where you replenish your food supplies and energy, where you recalculate your losses and winnings and restrategize your next battle. Yes, you enjoy the good day, but you also know that your biggest battle is close by. So you savour the moment, and you enjoy the moment, because tomorrow you will again be fighting the hardest you have ever fought.

I often hear that CRPS warriors feel guilty when they have a good day, because of the way that other people react. Instead of being happy for them and supporting them, they rather shame them, telling them that they do not know what real pain is, or that they cannot be sick, because they do not look sick, or because they are doing something that they normally cannot do due to pain or exhaustion. Misinformation can be very dangerous. We need to stop looking at people with preconceived ideas of what we think someone with CRPS is supposed to look like, and start educating ourselves on what CRPS is and how it can affect you. Why is it so easy to believe that someone has cancer, even when they do not have hair loss due to chemo, or present no physical outward symptoms, but people still struggle to believe that certain people suffer from CRPS, when they cannot see physical symptoms. We need to start seeing every human being as an individual, that is affected in different ways according to their individual make-up.

 

Perceptions and Assumptions VS Truth and Reality

Recently the following was posted on one of the support groups (by 2hon5):

"You walk at home? Do you even need your wheelchair?"

Yes, because walking in my own house is different than walking class to class at school. I don't carry a heavy backpack at home. I'm not on a tight schedule at home. I can sit on the ground at home. I can ask my parents or siblings to help me at home. I can crawl on my hands and knees at home. I can lie in the middle of the hallway at home. I can sit on counters and tables at home. I can bear a lot of pain at home. I can show that pain at home. I can collapse in the middle of crawling up the staircase at home.

Don't tell me or anyone else where or when they need to use their mobility device"

Why is it easier to believe our perception that someone is "faking or lying" because they have one good day, rather than the fact that they are living in pain most of their lives? It is as if people would rather believe their own worst assumptions, than actual truth and reality. Can it be because it is easier to close your eyes and not see the hurt and suffering around you, than opening your eyes, feeling their hurt and acting upon it in a way that make their battles easier?

I we can stand up as human beings to create awareness for world hunger, cancer, world peace etc., then we can also stand up during the month of November to create awareness for CRPS. Can I challenge you to wear something orange on the 7th of November so that CRPS warriors will know, that they are not fighting this battle alone! I know of a whole "community" of CRPS warriors that will appreciate the support. For one day (or month) in die year, you will be able to make them experience heartfelt support, instead of feeling socially excluded. CRPS warriors need your support!