CRPS My Journey: Chapter 9 - A Different point of view

The "Complexity" in CRPS

Just a quick update on how it has been going since my last chapter. So at first Chucky was up scaled to my Appy, and I am glad to say that he has again been up scaled. This time to Buddy. Yes, he still has his mood swings, who of us doesn't, but most of the time we get along much better. There are still days when he feels far away in his own little world, as do I probably as well. I think those are the times that we just need a little bit of a break from each other. I often push him to do stuff to also teach him that I am really trying to trust him unconditionally, and yes there are times that things are easier, and then there are times when things are just so freakin hard, but we persevere.

Wearing the glove helps a lot, especially for the swelling and pain, although the sensitivity or "feeling" still irritates when I have the glove on. About a week ago we started painting Malan's room, and I really had to push through the burning and pain, and my hand was quite swollen and full of tantrums afterwards, but I accepted that, as in part it was my fault. At one point I did promise him only 30 more minutes and we will rest, and then I pushed him for an hour. He did get me back though by tipping a quarter drum of paint on me...and yes, it spilled everywhere BUT him. But I took it like a man and I am willing to accept that I deserved it.

I think though that he sometimes forget that he does not really have nerve damage. He is like a dog that thinks he is a cat. That is when I need to remind him that he and my brain should stop their nonsense and sort out their issues. He shouldn't be so gullible to listen to everything my brain says, just as much as he should not always turn his back on my brain. I think there are times when both of them are just spiteful, and every time they fall for each other's antics. It is like my children. Liam is a real tease, and he knows Malan's triggers. So he will always press on those triggers and then laugh his head off, while Malan falls for it every time and then wants to get a fit and retaliate.

With the issues of losing sleep and/or having these nightmarish bits of sleep, I have again been placed on the sleeping medication, Ivedal. We really need to try and get my sleep issues sorted out as I need to be able to enter the deep sleep cycle - actual sleep, no nightmares, no waking up from pain - so that my body can start repairing itself. Also I have been placed back on Lyrica as a test run, in addition to the Cymgen, to test and see how my pain levels will respond on higher dosages (300mg) of Lyrica.

If the results are positive, I might be able to taper off Gymgen and hopefully start regaining my emotions and becoming less distant and disassociated. At the moment it causes extra dizziness, brain fog and tiredness. I have also experienced a little bit of what felt like emotional distress or a depressive episode, which I really did not enjoy. Maybe I have become so used to not feeling emotional, that these little hints are a shock to my system. I do sleep more though, but I feel 10 times more tired than before, so much so that I often struggle to keep my eyes open on the road. It also feels like there is some irritation starting to bubble under the surface, like a soda bottle that is building up pressure under the cap. On the other hand, I am also not sure how I will be able to notice if the Lyrica makes a difference while I am still on Cymgen. Should I taper off Cymgen and go onto Lyrica and it does not work, I don't know if I will go back on Cymgen again. Don't know if I will have the guts to go through another 4 weeks of constant nausea. So it really is a conundrum - a catch 22.

So whether I am going to make the transition from Cymgen to Lyrica is still open for debate. At the end I will most probably have to sit down with Teresa and the kids and weigh our options and decide which drugs' side effects they are prepared to deal with. I do feel a bit like a lab rat, but unfortunately that is due to the complexity of CRPS - trying to treat a physical change in the brain, with medication that is used to treat actual nerve pain, which my hand is mimicking, without having any physical damage. No matter how slowly you read this...it does sound crazy, like a scene out of some fictional medical tv series, but it is real.

I have been off the Trepeline for more than a week now, and it seems that the nightmares have stopped, which is awesome. So it looks like the Trepeline might have been the culprit. We have also started something new with regards to the panic attacks. Besides the fact that I am trying to push myself to endure longer periods every time that I am in the store, and also trying to cope with the breathing and other coping techniques to enable me to do this, I have also started to take my earphones with, already plugged into my cell phone. So now when I feel that things starts to get too much, I put in my earphones, and put on some of my favourite music and try to disappear in my music. This was suggested by Wendy, and it helps a lot. It relaxes me and takes me away to another world. I am still aware of my surroundings, and I still do my breathing techniques, and I still feel the symptoms of the panic attacks creeping up, but it especially helps in those moments where I just want to close my eyes and disappear from the masses, but cannot do so. So it takes off the edge just that little bit to make me cope a little better.

I have spoken a lot about my bad days and my challenges since I have been diagnosed with CRPS, and although I might not have focused too much on the good days, I want to talk about just that in this chapter - or rather the positive things that I have learned. I have said this before, I think that we often hear so much negativity and challenging stories about CRPS, and my main focus is to create awareness with this post, not necessarily for my own struggles with this disease, but for so many out there that suffer in silence because this disease is often misunderstood and misdiagnosed.

Living with CRPS is never straight forward. Unfortunately, you deal a lot with cause and effect. For every action there is a reaction. For every good day, there is a couple of bad days, BUT for every couple of bad days there may be a good or even a great day! So what are some of the positive things that I have learnt through my journey of the past year?

1. Patience

In 1360 the English poet William Langland wrote in his poem Piers Plowman, “patience is a fair virtue.” Many has said that the meaning behind this is that the ability to wait for something without getting angry or upset is a valuable quality in a person. When you are in constant pain, and when you are used in doing things for yourself, patience becomes more like a fairy tale in many ways, than a virtue. But this is probably one of the first things that I had to learn.

However, as time went on, and as I struggled with learning to be patient in dealing with CRPS, I discovered that there is a different way to looking at this. As someone else summed it up, “Patience is not the ability to wait, but rather the ability to keep a good attitude while waiting.” (Unknown)

I had to learn the difference in trying to be patient, or emotionally working towards being patient, and changing your attitude towards becoming patient. I tried so hard to be patient and to be emotionally focused and driven to become patient, that I failed in every aspect. I had to get to a point where I would rather make the conscious decision every day to be patient, or to learn to be patient. This meant that I would have to keep a good attitude while waiting. The focus had to be on my attitude or my state of mind.

Looking back at the battle that first couple of months in learning to use a spoon, a knife, a fork, learning to write, learning to draw, exercising to be able to close my hand, to stretch my hand and so forth, I had to learn, and acknowledge, that I was hindering my own growth by sinking deeper and deeper in my own state of mind, which at the time was full of negativity, anger, hurt, rejection, guilt and frustration. And yes living in constant pain, and not being able to do the things you used to, even the simplest of tasks, does that to a person - regardless of you gender. Every person has his or her limit. And I have said it before, you need to go through the whole grieving process, but you cannot stay in that grief for ever.

I had to acknowledge that I will never emotionally feel that I have patience, so I had to make that conscious decision and follow through, no matter how hard it was. I had to learn that my attitude, while waiting for recovery, was more significant than my ability to wait. I wanted everything to be fixed and healed like yesterday, and I would get frustrated if that did not happen. The moment however that I started telling myself that my hand will improve, maybe not today, maybe not tomorrow or next week or next month, but when the time is right - and the moment that I chose not to let my emotions determine my outcome or my recovery - my recovery process suddenly started to get a boost. And when that started happening, I became more positive of the possibilities that lay ahead, so much so that I would start challenging myself by challenging my hand - within limits of course.

2. Acceptance

The second lesson that I had to learn was acceptance. I had to accept:

• My situation for what it was - that it was a challenge, but not a death sentence, although it felt that way at the time;
• That I was not in control, and that what was happening to me was beyond my control - and that it was okay;
• That no-one was responsible for what was happening to me, that it was just the luck of the draw;
• That I needed to ask for help (not something that came naturally), as I could not deal with this on my own;
• That I was not being punished for something that I did or did not do;
• That any guilt that I might have felt was unfounded and untrue;
• That I had to be honest with myself - which also meant being honest with my employer and everyone around me, no matter how far-fetched and science fiction it may have sounded - not the easiest of subjects to explain to someone that is not going through it;
• That I would have to change or postpone certain things in my life, like the adventure stuff;
• That my whole outlook on life would never be the same as before;
• That there would be certain things that I would not be able to do on my own any more, whether it be for a short limited time, or whether it be for the long run;
• That getting better was going to be hard work and would require diligence and focus and perseverance;
• That there would be no short cuts in improving my health;
• That although no medication would be able to take the pain away, or even heal me, I did still have options to improve my quality of life;
• That although emotions are a big part of the human psyche, I needed to mentally start fighting this disease
• That CRPS is not MY disease. I do not own it, nor does it own me - I have a disease that is called CRPS that is affecting my hand. BIG difference!
• That God has not left the building, but that He is feeling my pain and that He believes in me

3. Forgiveness

The 3rd lesson that I had to learn was to forgive. In my case there was nothing that the doctor did wrong, so I unfairly reflected the guilt and blame onto myself. Especially as I felt guilty for having developed something like CRPS, while my wife has been sick for many years with SLE.

I thus had to get to a point of self-forgiveness, a point where I had to realise that I did nothing wrong physically or spiritually to cause all of this. And after a loooooooong battle, I eventually had to forgive my hand itself, as he was not willingly trying to torment me, nor was he responsible for the suffering...that he was undergoing himself.

And of course it did not hurt to forgive other people that had wronged me in the past in different aspects of my life. By forgiving them, I freed myself from unnecessary weight. It did not mean that I have to speak to them or suddenly become involved in their lives again. Nor did it rectify the things that they have done to me, or made it as if it has never happened. I had to forgive them for my own benefit as I realised that I would need the time and energy to focus on getting better, instead of clinging to the past and who has wronged me before.

CRPS is a heavy enough burden to bear without unnecessary baggage that I could in any case do nothing about.

4. Perseverance

When you are used to being able to work with your hands, and you suddenly are not able to use your dominant hand due to trauma, it really feels as if your whole world is crumbling. You feel useless, frustrated, angry. I remember feeling that I would never be able to use my hand again. It felt that all the occupational therapy was a waste of time. Obviously it wasn't a waste of time, but that was how I felt in that moment.

Imagine how it feels when you have to learn to squeeze a soft rubber ball and you are able to do so with your weaker hand, but your dominant hand, which is your affected hand, does not even make a dent in the ball. You need to actually use your left hand to try and fold your right hand over the ball. Then comes along someone else and they press the ball as if they are putting a hot knife through butter. I remember one of the exercises I had to do at the therapist was to screw and unscrew bolts and nuts onto a board, using my affected hand only. That was rough as it was difficult enough to pick up the nuts and bolts and hold them in my hand, let alone trying to screw them on and unscrew them. I have explained before how challenging it was just to change spark plugs on my car.

However, I had to persevere. And this is where my adventure sports and my tug-of-war training skills resurfaced. One thing that these types of sport teach you is to persevere...to push your limits...to push through the pain barriers. It was not easy, and there were a great number of times that I felt like giving up, but then I would remember why I wanted my hand to become better and what my end goal was - and I would just push that little bit farther again.

Perseverance is not something that comes naturally. It is a skill that you need to learn and then have to adapt to. I was fortunate that I could have learnt this skill when I was still at school in my tug-of-war years, as I were able to mentally go back to that time in my life and draw strength on what I have learnt, and to re-ignite that ability to persevere. And of course I had the support of my family, friends, therapists and doctors to keep me on track and to prevent me from giving up, but most of all I had my faith that kept me going. As much battles as I had with my hand, even more I had with God...but NEVER was there one moment that He gave up on me. And knowing that He believed in me and my abilities, that He has given me, made me want to persevere even more.

5. Asking for help

When you have basically had to take care of yourself from the age of 13, it is not easy to ask for help. I came to understand some of what the elderly must experience when they get to a point where they cannot do things for themselves anymore. I had to learn to ask. Shame, the person who had to deal with my needs the most, is the strongest woman that I know, my wife Teresa. Suddenly she had three children at home to take care of, of which the biggest one was almost baby like. She had to cut my food, feed me, help me to get undressed (which I didn't mind), help me to shower (again No complaints here), help me to get dressed etc. Remember, at the start of all of this I had a knee and hand operation, so mobility was also a big challenge.

Small things that I was used to be able to do, now suddenly became my biggest challenges. My only options were to either ask for help, or starve to death in my own uncleanliness. Yes, it is embarrassing and humiliating, BUT it also humbles you. Even with my kids, I had to ask for their help at times. I had to get over the idea of me being their dad, the one whom they need to turn to for assistance. I was at a point where I needed their help and had to put my pride aside and ask for their help when needed. And I actually found that it was fun for them to help.

We all need help from time to time, whether it be professional help, help from our family, friends, neighbours...even strangers. We should not be afraid to ask. Yes, I still do not trust easily, but even those that trust people the least, sometimes need to let people in and ask for help. As I said before, people at times may surprise you.

Of course you need to protect yourself, but when you are in pain, you do not always have the luxury of being picky or demanding or smallminded...you learn to be grateful. We were not made to be alone, and no-one suffering from CRPS should ever go through this alone. You suddenly gain a different view on life and on how you approach it, a new perspective.

We can go out into the world and be miserable and discontent and angry at this disease, and we can allow it to consume our whole being, and just give up on life...OR...we can go out with a positive and open-minded attitude where we try to focus on what we can do and achieve, rather on what we cannot. It is a choice that we make, just like patience, acceptance, forgiveness, perseverance and asking for help are all choices that we make.

If I choose to be hastily and refuse to learn to be patient, I cannot blame someone else if I get hurt again in the process. If I choose not to forgive, I cannot expect to be free. If I choose not to accept, I cannot start to heal. If I choose to give up, I stop living. If I choose not to ask for help, I end up all alone.

We all make hundreds of choices every day, from the moment we wake up to the time we go to sleep. Some we do not even think about, while others are conscious decisions. If I do not want to be a product of CRPS, but want to get a grip on it and put it into remission, I need to make conscious decisions every day. I cannot simply rely on chance, and hope for the best. Yes, I might not be healed from CRPS and yes I am going to get tired and probably discouraged at a point, but I have the choice to improve my quality of life. And I have the choice of how I am going to react on the feelings of discouragement and negativity and frustration, and anger etc. It is still my choice - NOT that of CRPS!

So why do I want to become better? That is the question that every CRPS warrior need to start with. And once we have answered that truthfully, the healing or progress can begin.

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.