CRPS My Journey: Chapter 8 - Purpose Driven

In Chapter 7 I talked about my sudden panic attacks. After this I had a number of people share with me how they experienced the exact same thing. They never struggled with this before and since they either have been diagnosed with CRPS (some of them I and some II), or after they have started on Cymbalta or similar medication, they began to get these panic attacks. It just confirms again how CRPS mess with the brain, and although it may be centralised in a certain body part, it does affects your whole being. 

I remember growing up we had a physician that used to say that he could not understand the young medical students of the day that only treat the current symptom. You go to these young doctors, he would say, with a headache, and they give you pain meds for a headache without doing any other physical exam, or you go with a pain in your leg, and they only treat the leg. This physician however believed that your whole body is connected as a unity, and that you can therefore have a headache, but the root of the problem could be in your big toe. 

So yes, it was not that comfortable to visit our physician, as het would always do a full medical exam from your head to your toes, but he rarely misses something. It is thanks to him and his way of thinking and his determination that Teresa was diagnosed with SLE when she was only 21 years old - another disease that is often missed or misdiagnosed due to the similarities with other diseases like MS, Osteoarthritis etc. Also you need to have a certain amount of symptoms and/or markers out of criteria of 14 symptoms that stays the same over a period of time or with every visit, which makes it difficult to diagnose. In Teresa's case it took the doctors a year to be able to positively diagnose her with SLE, as medication threw a lot of her symptoms off. But her diagnoses started with a physician that took the time to look further as just the obvious, believing in the human body as a unity.

And this makes total sense. Just think when you have something as simple as flu. Because your body is aching and your throat is sore, and you are coughing, you often feel blue and miserable and not in the mood for people. It affects your psyche, whether you want it to or not. Our body parts cannot exist in seclusion, cut off from the rest of the body. 

In 1 Cor 12:12-26ff, Paul writes to the Church of Corinth about the Church or the body of Christ and he uses the analogy of the human body. He writes: 

12The body is a unit, though it is made up of many parts; and though all its parts are many, they form one body. So it is with Christ. 13For we were all baptized by [3] one Spirit into one body--whether Jews or Greeks, slave or free--and we were all given the one Spirit to drink. 14Now the body is not made up of one part but of many. 15If the foot should say, "Because I am not a hand, I do not belong to the body," it would not for that reason cease to be part of the body. 16And if the ear should say, "Because I am not an eye, I do not belong to the body," it would not for that reason cease to be part of the body.

17If the whole body were an eye, where would the sense of hearing be? If the whole body were an ear, where would the sense of smell be? 18But in fact God has arranged the parts in the body, every one of them, just as he wanted them to be. 19If they were all one part, where would the body be?

20As it is, there are many parts, but one body. 21The eye cannot say to the hand, "I don't need you!" And the head cannot say to the feet, "I don't need you!" 22On the contrary, those parts of the body that seem to be weaker are indispensable, 23and the parts that we think are less honourable we treat with special honour. And the parts that are unpresentable are treated with special modesty, 24while our presentable parts need no special treatment. But God has combined the members of the body and has given greater honour to the parts that lacked it, 25so that there should be no division in the body, but that its parts should have equal concern for each other. 26If one part suffers, every part suffers with it; if one part is honoured, every part rejoices with it... 

Now with CRPS I have experienced that indeed my hand felt that he was not part of my body anymore...however, the fact that it felt that way, did not make him less part of my body. Even with all his tantrums, he never stopped being a part of my body. I am not going to do an exegesis of 1 Cor 12, but what I want to draw your attention to is that even 2000 years ago they knew that the human body is made to perform as a unity, and when one part of the body suffers, the whole body suffer. So it is not unusual then for us to suffer emotionally and psychologically when we are in physical distress.

The Lucky Packet Disease

When we were kids in the 80's, we used to look forward to the day when we received a lucky packet. It wasn't so expensive as it is today, but the variety of stuff that you would find in a lucky packet seemed to have been much more than nowadays. It was always a surprise to open the lucky packet and find that awesome toy and sweets inside. You never knew what you were going to get next. I have come to know CRPS as the Lucky Packet Disease, but unlike the lucky packets of old, you do not look forward to this one. Throughout this past year I have had lots of surprises with CRPS, and just when I thought that I started to get a grip on it, it hit me with new surprises. The latest surprise is my fingers of my affected hand getting ice cold, even in warm weather, and then that night I wake up with this excruciating pain that drains me and bring me to a point where I start to vomit. And what a surprise that is, because it is as if my hand does not want to accept that he does not actually have physical nerve damage. On previous occasions it was my neck being triggered by my hand flaring up, putting me on crutches with my left leg in pain and not being able to support me; or causing me to struggle to breath; or what about the inglorious panic attacks that suddenly appeared, again starting with my hand - and so I can go on as I have already share a great deal of such little surprises. So hence...the Lucky Packet Disease - or Unlucky Packet Disease if you will. 

So I had a couple of fairly good days where the pain seemed to be much less than usual, and then last week hit. And for the whole week I had a really bad flare-up. The anxiousness, burning and pain in my hand, and really bad pain in my neck came all at once, so much so, that I started to vomit from the pain. I do not know what triggered it, my neck that is. My hand I think just didn't want to miss any of the action, so he made sure that he came to the party with all the bells and whistles. For my neck however, it was probably due to my lack of sleep, or an overdose of nightmarish sleep during those short periods that I do sleep, maybe it is the fact that I have been without my pain or rather "management" medication for my neck the last couple of days...or maybe it is a combination of all these things. All that I know is that I felt soul weary with immense pain and burning. My neck felt inflamed, as did my hand, and the pain went down my shoulders and back, and even my left leg. Even my left lower rib that has been giving issues felt inflamed. For the last couple of weeks, apart from the extremely cold days, the pain felt more manageable, and less intense as usually. So it really felt like the CRPS was going into some remission, until last week, with this flare-up. It felt like a soda bottle that was fairly undisturbed, and was now suddenly been shaken violently. 

Interestingly enough is that for some people it may sound as if CRPS warriors think that they are medically trained, while in actual fact nothing can be farther from the truth. Living with CRPS you get to a point where you start listening to your body, where you start seeing repetitive signs, and where you learn to read the signs well enough to know what it means to you personally. And that is the whole goal of going to therapy to develop coping skills and reading up about CRPS, and keeping a journal of your symptoms etc. so that you can be better prepared and equipped to deal with this horrible disease each and every day. Whereas in the beginning I was afraid of what was coming after I had a good day, I now look forward to having a good day...dealing with the bad day as it happens. It is all about perspective and your state of mind I suppose...and it is all part of the Lucky Packet Experience.

Something that also happened in the last two weeks that may have contributed to the flare-up, has to do with my oldest son. He was very saddened to hear that his equestrian treatment is ending end of September as his instructor has to close down due to unforeseen circumstances. I so badly wanted to feel what he is feeling, to feel his hurt, to be sad with him, and deep down I believe that I do, but no matter how hard I try, I just cannot feel the hurt, or show the hurt that he is feeling. It is like the sun trying to force its way through on a dark and stormy day. No matter how hard it tries, and from how many angles, the dark clouds keep blocking it out. It is a truly horrible experience. It is as if you need to act that you feel the way, that you are supposed to truly feel, and that you do feel deep down, but are unable to show due to this disease and the medications. And I know that it is not because I am a sociopath, or that I do not care, because I do care deeply. It is what it is, due to the medication, and for now there is not much that I can do, except trying to fight the side effects as hard as I possibly can. 

I hear a lot of CRPS warriors complain of exactly the same thing - loss of emotions, loss of empathy. And it all happened after they started on Cymbalta or similar drugs. There is still so much to learn about the human body, how it works, how it reacts to certain drugs and why it reacts the way it does. I do believe that someday, through medical research and development, they may find a treatment that work with less horrible side effects. For now, these medications though, have its place in helping CRPS warriors, like myself, to cope with the disease much better than without it.

A Short History of CRPS

According to the Medical Journal, Pain Reports, the Department of Neurology, University Medical Centre of the Johannes Gutenberg University Mainz in Germany, wrote the following:

"The history of complex regional pain syndrome

It took approximately 100 years to form the acronym “CRPS.” In 1864, Silas Weir Mitchell reported on patients whose disease corresponds to what we now call complex regional pain syndrome (CRPS) type II (Causalgia).⁶¹ In 1901, Paul Sudeck from Hamburg, Germany, described the “acute reflex bone atrophy after inflammation and injuries of the extremities and their clinical appearances,” which corresponds to CRPS type I without nerve lesion.⁸⁷ The next milestone in CRPS history was reached in 1936, when James A. Evans coined the phrase “reflex sympathetic dystrophy”, which has been used for decades.³¹ At a conference in Orlando, 1995, it was agreed to use the descriptive phrase “Complex Regional Pain Syndrome” to avoid claims about pathophysiology."

In his book, Injuries of Nerves and Their Consequences (1872), Silas Weir Mitchell wrote after treating soldiers on the battlefield,

"Usually the pains from nerve hurts are either aching, shooting, or burning…principally burning.

Under such torments…the strongest man is scarcely less nervous than the most hysterical girl…The men…described ‘mustard red hot,’ or ‘as a red hot file rasping the skin’…. this pain was an associate of the glossy skin.… The burning arises …almost always during the healing of the wound. It never attacks the trunk, rarely the arm (upper) or thigh…Its favourite site is the foot or hand…a state of torture which can hardly be credited…The part becomes exquisitely hyperaesthetic so that a touch or tap of the finger increases the pain. Exposure to the air is avoided…with a care which seems absurd, and most of the bad cases keep the hand constantly wet…Two carried a bottle of water and a sponge, and never permitted the part to become dry. The temper changes and grows irritable, the face becomes anxious and has a look of weariness and suffering. The sleep is restless…the rattling of a newspaper, a breath of air, the step of another across the ward, the vibrations of a military band or the shock of feet when walking, increase the pain. He walks carefully, carries the limb with the sound hand, is tremulous and nervous…in two cases the men found ease from pouring water into their boots…One wet the sound hand when obliged to touch the other."

Some of the treatments that he used was water dressing and rest therapy. And over the years, as various drugs were developed, Morphine was often unsuccessfully used for CRPS. Seeing that it took a 100 years to get to what we know about CRPS today, with limited resources and technology, it is clear that the symptoms did not change, however in the space of a 100 years the treatments for CRPS have evolved, as new knowledge about the disease increased. So who knows, perhaps in the next 5, 10, 20 or even a 100 years from now they may develop a treatment or drug that actually help without the horrible side effects. But for now, with the medical advancements that brought us to where we are today, the side effects trump the constant excruciating pain of CRPS. 

Yes, it is a bitter price to pay for some "normality", with "normality" being the irony. One need to choose which broken normality you are going to choose - CRPS with constant excruciating pain and uncontrollable oversensitive emotions - but emotions none the less; or CRPS with less constant pulsating pain, and seemingly no emotions at all. Each with their own pro's and con's, but at the end of day it is about becoming a better and healthier person.

Purpose

Reflecting on my Journey thus far and what I have shared thus far, I want to return to what we spoke about in the first couple of chapters namely my view of my hand, and especially my focus if you will. I think that it is important that we should understand how focus work, what role it plays in our life and how it helps us to achieve our goals.

Focusing on your affected body part, without losing your focus on life is often a very difficult distinction to make. One can often become so invested in your disability, or the pain that you experience, that you start to lose your grip on life. CRPS has taught me that although my goal need to be to get a handle on the CRPS, and to get it into remission, I cannot achieve this if my focus is only on my affected hand and the pain and the disabilities that it brings. My focus should go beyond my affected hand. My focus need to match my purpose. How can I explain this?

Let's say your goal is to reach the top of Mount Everest. You do not simply start walking or climbing. No, the first thing you do is to set smaller goals for yourself, reachable goals. Why do I say "reachable" goals, because you do not want to become discouraged before you even started. The purpose of the smaller reachable goals is to motivate, prepare and encourage you to reach the next goal. So ideally, you would enlarge every goal as you progress, which means that every time you set off to reach the next goal, the challenges get bigger. Once you have reached your first goal, you have started to step out of your comfort zone. If you stay on that goal too long, it becomes your new comfort zone and that line, where you feel challenged, moves further on. That is how life works.

Just look at babies. First they just lie there, till they reach the stage where they are able to lift their head and eventually turn around. Next they start pushing themselves up on their arms, until they start to pull themselves forward. Eventually they start to sit up, and crawl. Next they start pulling themselves up on furniture until they are able to stand. Eventually they take the first step, take the first fall, try again until they start walking. They however do not stop here, as they will eventually start running and jumping and do a lot more exciting things. This is not just life happening by accident...it is babies reaching certain goals or milestones, and they are doing this by pushing themselves beyond their comfort zones, beyond their current limitations. Once they have accomplished a goal, they will continue doing the same thing, until they push themselves to reach the next goal. But doing the same thing over and over is not just a senseless repetition, it is their way of focussing on reaching their next goal. 

When I think back at the beginning, one of my first goals was just to be able to close my hand - as simple as that. The next goal was a bit harder, stretching my hand to regain the movement towards the back of my hand so that I do not have crooked fingers. And it took a lot of pain and frustration and crying and swearing...and patience. Then I had to set my next goal, to learn how to write and draw again. And every time I had to realign my focus and broaden my view. And every time the challenges became harder as there were also more and more psychological challenges. I mean just imagine what it feels like to have to learn to write again at age 44, to learn fine motor skills again, to feel like you are back in grade 1, and to see that your own grade R and grade 4 children can do these things and more, as pro's in relation to you, to have your wife help you shower, to have her cut your food for you, even at times feed you. I do not have to imagine it, as I lived every moment of this for months. And one of the hardest parts of this was that it took weeks, months to reach many of these goals - but I would not allow myself to lose my focus on achieving those goals, and when I felt frustrated and weak, people like my wife, my children, Hesti and others were there to encourage me and to scold when I needed that as well. They would not let me give up, so how could I allow myself to give up.  

So coming back to Everest, in order to reach my goals, I need to have certain focus areas. For one, I need to do my homework, mentally prepare myself. Next I need to focus on physically preparing myself - even spiritually, emotionally and financially. I cannot go and run the 100meters and think that I will be fit enough to climb this mountain range. I need to gradually increase my strength and stamina, I need to adjust my lifestyle, what I eat and drink and how much and how often. I need to work on my breathing, my mental and emotional coping skills and so and so on. Yes, my Goal is the top of Mount Everest, but along the way my focus is adjusted all the way as I reach all these other goals that will eventually enable me to reach the top. The problem comes in when I am so focused on my disabilities and challenges, that I cannot see the next goal, and therefore get side-tracked or tempted to just quit. When you are climbing a mountain like Everest, you often reach the top of a mountain peak just to find out that you are actually not at the top yet, but that there is another mountain higher than this one. Eventually you reach that one, and low and behold, there is another higher mountain to climb. and so it goes on until you eventually reach the top of Everest. Although Everest is the highest mountain peak, it is still part of the Himalayan mountain range. 

If I want to reach the top of the highest mountain, I cannot just focus on the rough road that I am on, or the challenges that I face, or how many mountain tops I need to cross to get there. My focus need to go beyond that. My ultimate goal will always be Everest, but I need to realise that in order to reach that goal, I need to have all these smaller goals that becomes steppingstones to reach the summit.

But why this analogy? Looking back on my journey, and looking at the road ahead, living with CRPS has taught me, more than ever before, the importance of having a main goal, as well as where to put my focus. 

Realigning my focus

When you embark on life's journey, you do so with certain goals and focal points. Then from the side-lines things like CRPS hits, and suddenly your foundation is being shaken, and your goals and focal points becomes blurry. You even start to give up on your passions and dreams, as you feel that all hope is lost. This is not a blow that you easily recover from as your whole trajectory in life is forcefully being changed into a direction that 1. you could not have foreseen and 2. that was not part of your plans and ideals and goals and 3. you did not ask for. You start questioning yourself, and so you start with an inward search. You start asking questions like "Who am I?", "What is my purpose", "Where am I going?" "How will I get there?" The irony here is that these are the questions that we need to ask ourselves every day to make sure that we are still on the right path to reach our purpose, our goal, but for some reason we tend to wait for a big life changing event before we ask these questions. The difference being, that if we ask these questions daily, we are always realigning our focus so that we can stay on track with our goal. However, when we only start asking these questions when we are thrown with a big life event like CRPS, we often ask this out of self-doubt and emotional turmoil and fear - which for some may not be a bad place to start as it causes you to actually start. 

I had to learn that I need to realign my focus, that I need to gain new perspective on my goal(s). I had to realise that, yes perhaps some of my life goals that I had before CRPS were more difficult to reach than others, but in effect I had to rethink how I was going to get there. That might mean that some of my goals may not be the same as it was before my diagnoses, as I might not be able to physically achieve some of them anymore. Or perhaps I need to follow a different path to reach my goals. That does not mean that I have to lose all hope. Also it does not mean that I need to give up on all my dreams. What it does mean is that some of my dreams may just be harder and more challenging to reach than before. It means that I need to get to grips with my new limitations, so that I can focus, not on my limitations, but on how to overcome them or to do stuff in spite of them. If I had given up hope when the first challenge came, I would not have achieved what I had in the last couple of months.

I have been wanting to build a bed for my youngest son for so long. I had the plans for how long, the wood stacked away for how long - and then I went for an operation, and was diagnosed with CRPS. I could not even hold a pen in my hand, let alone tools or screws and stuff. And I have shared this story in chapter 3 in "Pushing the limits". Yes, I had a goal before the operation, a clear picture of what I wanted to build, plans worked out in detail. Now I was suddenly thrown off track. So I had a choice, I could just drop my goal, or I can reset my coordinates. And that is exactly what I did, regardless of how hard it was to do. Yes, the bed does not look like my initial vision and goal was, as I had to adapt to my abilities, and yes it took weeks with excruciating pain to complete, and some things I would have wanted to do differently, but I eventually reached my goal...and DAMN I did a good job, if I may say so myself.

Never give up! Do not let your focus on your limitations be so strong, that you lose sight of your goal. Find your purpose in life. It may feel as if your life has lost its purpose, but even in the darkest of times, there is always hope.