CRPS My Journey - Chapter 7: Honesty

Trapped like a wild animal

A while ago I shared how I suddenly started having these panic attacks, when I found myself between large groups of people. Being somebody that loves hiking, kloofing and caving, since for ever, it felt horrible to suddenly feel trapped in somebody else's body. I have never felt claustrophobic before, until now...and it sucks! I have always been able to jump from heights into deep dark waters, or crawl through very narrow caves or tunnels without feeling distressed. Now suddenly I started to feel like a trapped animal in a cage - scared, threatened, overwhelmed. My heart was racing, my hands were sweating, my body was trembling, I felt that I could not breathe.

The first time that I experienced this, I was standing at the checkout line at a big shopping chain in a well-known shopping centre. They changed the layout of the store in such a way that you had to walk between two isles to get to the checkout point, but the isle is so narrow that two people cannot stand next to each other, and you definitely cannot turn around with your shopping trolley. As I was standing there waiting for my turn, my hand started to burn, sweat and shake. It felt like the people around me was closing in on me and that I had no-where to go. To top it off people started to squeeze past me in this narrow isle, as they either forgot some items or wanted to get to the rest of their families. My heart started to beat faster - I could feel it throbbing in my chest and throat, it felt irregular. Even my voice started to get hoarse and I started to feel light headed. I felt that I needed to get out of there as quickly as possible, and immediately I hid my hand in my pocket - not out of shame, but out of fear that he might get hurt.

However, I knew that if I left the store, I would not have the courage to return - so I stayed. The one thing that sports like tug-of-war, kloofing, hiking and caving has taught me, is to persevere at all cost, no matter how uncomfortable you may be, or how tired you become, or how much pain you need to endure. So I stuck it out. I tried to control my breathing as well as I could, in the same way that I would when I was doing adventure sport, but it felt different. As much as adrenaline usually encouraged me to push through when doing these sports, this time it made me feel like running away. This was all new to me, and that frightened me. Eventually I reached the checkout point, paid for my groceries and left straight for my car. I sat for a while, just trying to recollect what had happened, trying to calm down. My hand was inflamed, I was out of breath, shaking. I sat for a while and then drove home. After this I would feel the same way every time I entered that store. It came to a point where I was reluctant to go to that store on my own. I knew that somehow this had to be a side effect of the medication and everything that has been happening the past year and, pardon the pun, my hand definitely had a hand in this.

I scheduled an appointment with Wendy and shared my experience. At this point I have not yet given a name to what I experienced, so Wendy did that for me - I was having panic attacks. But how was this possible, as I never get claustrophobic, nor do I have a fear of heights or any of that stuff. So the first thing that she told me, is not to look at the past and not to judge what I am currently experience, in the light of what I was used to be able to do in the past. By doing so I was not being fair to myself. Then she started teaching me about the sympathetic and parasympathetic nervous system, how it works and how to react to it.

Fight or Flight

Your sympathetic nervous system is a network of nerves that helps your body activate its “fight-or-flight” response. This system's activity increases when you are stressed, in danger or physically active. It is part of the autonomic system, that is again part of your nervous system, that is responsible for a great number of bodily functions. These are bodily functions that acts naturally and that you do not have to think about on how you need to control them, like for instance your heart rate, your blood pressure, your digestion, urination, sweating and more. It is best known for its role in stressful or dangerous situations where it boosts your adrenaline so that your "fight or flight" response is activated. It can be so strong that woman have been known to lift cars singlehandedly, with their bare hands to save a child, or people have been able to scale high walls to escape danger. These nerves improve your eyesight, reflexes, endurance and strength and increases your heart rate in situations where you need to think and act quickly, or when your body is under stress. It carries signals that put your body's system on alert and takes the lead for as long as it takes to get you through the danger. A perfect recipe for adventure sport as it boosts the adrenaline that you need to challenge yourself and to stay alert. 

Your parasympathetic nervous system on the other hand, have the opposite role as that of the sympathetic nervous system. It carries signals to relax your body's systems and return everything back to normal. That feel-good effect when you have accomplished something outside your comfort zone. These two systems work together to keep your body in balance. 

The sympathetic nervous system, or your brain if you will, just need one "event” to create an association. In my case, my sympathetic nervous system has established that going into this store was dangerous and stressful, and therefor that I had to protect my hand. So every time I set foot in that store, my "fight or flight" response kicks in. The challenge for me would be to re-train my sympathetic nervous system so that it can realize that entering that store, or any place where there are a great number of people, is not the enemy. 

Wendy continued to explain this in a way I could understand by using the analogy of adventure sports. She asked me how I handle or approach kloofing for example. I explained that when you are standing on top of a 14meter high waterfall, where there is no turning back, adrenaline becomes your friend. You know that you need to jump and you therefor channel your adrenaline and nerves into doing so in a safe manner. When you have done these trips so many times, that it becomes routine, something that you do not have to think about, and you realize that fear, nerves, that surge of adrenalin - everything that makes you feel alive is not there anymore, that you are just going through the motions - that is when you know that you need to stop, take a step back and re-evaluate why you are doing it - just take a breather. In this case adrenaline is what is keeping you alive, it prevents you from making dangerous mistakes and help you to take calculated risks. If you lose this you're in deep trouble, and you endanger everyone else around you.

Stand up and Fight

So Wendy explained that with these panic attacks, it is exactly the same, except that with these panic attacks, we want to reach that point of routine and ease, unlike adventure sport. We want to become accustomed to the surroundings. We want to get to the point where I do not have to think about it anymore, where I do not experience being in danger anymore. Part of this is to realize that the adrenaline will last about 10 minutes or so, that it will pass and that I do have a choice of how I am going to act upon it.

As with adventure sport I need to slow down my heart rate and control me breathing, and it need to be intentional, every time, until I get to the point where it becomes natural again, where it becomes routine. I also need to learn not to feel guilty about having these panic attacks, especially when remembering that this has never been an issue before. I need to live in the moment.

I know that panic attacks are not only a possible side effect of CRPS, or it's medication, and that many people do get them regardless of what else is going on in their lives. I do find it interesting though, that these things that are happening to me, all have one thing in common...my affected hand. It seems that my hand is my radar, a premonition of what is about to happen. This only made me realize more and more that I need to take this fight to my brain, more intensely than ever before. Yes, I need to protect and encourage and sooth/calm my hand when it is in distress. Yes, I need to do my exercises, treatments, therapy etc., but at the end of the day I need to take the fight to where the battle is raging...my brain. Your approach should be a total mind shift. This is not an easy road though. You have to make a conscious decision every single day that you will not give in, that you will not only try to survive, but that you will do everything possible to LIVE. You wake up every morning and decide to make this mind shift, and then you decide to fight the side effects of the medication, and you decide to fight whatever challenges your brain throws at you....and it is tiring, but you have to follow through. 

People look at CRPS warriors and often think that nothing is wrong, but they don't know the effort it took to just give them half a smile, or to talk to them in a friendly tone. They don't know how much effort it takes to stand up straight, to act normal as if nothing is wrong, to push through constant pain. But you, the affected person knows...and still you make that decision every day to do it, not for them, but for yourself... Because not making that decision means giving up on life itself. And that is not an option. In Chapter 6 we spoke about knowledge and the importance of gaining as much knowledge as possible in your fight against CRPS. That knowledge would be a waste of time - it would mean nothing - if I do not make the decision to act upon that knowledge every day, to stand up and fight...and follow through.

Small wonders

I have received a great deal of positive feedback on my blog, especially on Chapter 6, for which I am eternally grateful. A number of people have asked me if they may share this blog. Please do so. The more we get it out there, the more we can create awareness about CRPS. Please feel free to also post comments on this blog, or like and follow it. 

It did make me realise though, that my journey with CRPS, and what I have learned and experienced, may be helpful and mean different things for different people in different stages of their lives. The friend with the blood clot, that is threatening the lives of her and her unborn baby; the wife, that is struggling with lupus and who does not know what it feel like to be without pain anymore; the stranger that is suffering from Multiple Sclerosis, that is grateful when he is able to move his toes when he wake up in the morning; the woman whose husband lost his job, because of his cancer that has spread; the guy, that just met the girl of his dreams, only to find out that she has an untreatable disease...everyone have their own stories to tell, their own heartache to share, their own battles to fight. 

This blog is not meant to be a quick fix, nor is it meant to give anybody all the answers, or to create a sense of false hope. It is to create awareness. These are my struggles, my discoveries, my journey...my understanding of what is happening to me. And if it does help anybody out there that is struggling, with whatever life throws at them, even if it is not CRPS, then I am very rich and my heart is full. If my story prevents another CRPS warriors from contemplating suicide, then I am grateful. Another big lesson that my journey has taught me is not to take anything for granted any more - that breath of fresh air, that one day of less pain, that little bit of extra energy - these are all blessings in disguise. Appreciate the small things in life. We are often so focused on the big events and big achievements, but we forget that they are built on these small little wonders. Miracles still happen around us every day, we just need to stop, sit back, look away from our problems and struggles and regain a new clear look on life.

Honesty

But my Journey has also taught me that there is no time for being pretentious. Time is valuable and therefore we need to be honest and true to ourselves and everyone around us. Everything that I share in my blog is meant to be as raw and honest as possible, as I experience it - my HUMAN experience.

In the words of Billy Joel (Honesty):

I can always find someone,

To say they sympathize

If I wear my heart out on my sleeve

But I don't want some pretty face

To tell me pretty lies

All I want is someone to believe

Honesty is such a lonely word

Everyone is so untrue

Honesty is hardly ever heard

And mostly what I need from you

That is what a lot of CRPS warriors are asking for...Honesty. They want to be themselves, they want to be able to share their experiences, truthfully, without being looked down upon or judged. They want to be believed. They want medical professionals to be real and honest with them, to tell them the truth, and if they themselves do not know, also to be truthful about that...instead of making them feel as if they think they are crazy, or seeking attention. CRPS in itself is already a heavy burden to bare. 

I have experienced this with a number of CRPS warriors that I have spoken to. And because they feel that they are not allowed to be honest, they either fake a smile, just so that no-one can see the truth of their suffering; or they experience that people around them shy away from the truth as they do not want to upset them, or do not know how to act around them. 

Just be real, be honest. We all have our own struggles, and not one person's struggles is less important than another person's. We build walls and defences, and I often wonder whether it is to keep other people out, or if it is to keep our pain and experiences in...maybe it is both. Unfortunately we cannot expect honesty from people around us, if we do not allow them to see our true selves. As a CRPS warrior myself, it is not always that easy though, as you not only allow people to have a true insight into your pain and experiences, without setting yourself up for rejection and more hurt. That however, is part of the battle. 

If I think back on how far I have come since my operations and being diagnosed with CRPS, and how I was caught up in how I perceived people would react. Yes there were times when my perception was right...but more often people surprised me. Just the fact that I do not have to hide my hand anymore as an act of "shame", is a major WIN for me. But it started with being true and honest with myself, about everything...who I am, what defines me, what I experience, how I feel about it, how I feel about my hand, how I treat my hand... And yes, there are often days when it may look dark and I become tired of the fight...but then I just breath, take it one moment at a time, and reaffirm to myself that I will do everything in my power to kick CRPS's butt. Yes, CRPS may be part of me for the rest of my life, BUT I refuse to have it redefine me and tell me what I can and cannot do. Sure I need to choose my battles, and yes there may be things that I physical won't be able to do anymore. I may do things slower or different than before, I might have to look silly by swimming with one diving glove on, or wear a compression glove for the rest of my life, even have to push through the pain just to perform simple everyday tasks like lifting my spoon to eat porridge...but it is my choice to make until I cannot make that decision any more. Yes I have CRPS, but CRPS is not MY illness. I acknowledge it, but I refuse to own it. That is my Truth.