CRPS My Journey: Chapter 16 - From Pain to Remission

Even pain can become a crutch

Difficulties, challenges, bad days, over-sensitive system, hard battle...call it what you will, somewhere something has got to give. I have spoken a lot about how the battle with CRPS is as much a mental one, as a physical one, and how we need to transform our vision or the way that we think, understand and validate ourselves and the situation that we find ourselves in. This is not just a matter of "positive thinking". It is a complete change in mind-set. It is about discovering and rediscovering and then putting into action what we have learnt about ourselves, about the disease and about how to deal with the disease.

Yes, sometimes we fail and sometimes we win, and sometimes we break even. And often it may feel like a waste of time and we may feel like giving up, but it is never for nothing. We often look at CRPS and we see this huge mountain in the way. No-one is denying or contesting the devastating effects of CRPS, but we can become so entangled in our own thoughts and negativity, that we forget to look past this enormous mountain, to see what is on the other side. Looking back on the last two years since my operation, I see a lot of agony, hurt, pain, anger, frustration, challenges, ups and downs along my journey...but I also see a path cut out through treacherous grounds with lots of rocks and stones and thorns in the way. But that's the thing, I am looking back and what seemed to me as being unbeatable and impenetrable at the time, now shines like beacons along the way, pushing, shoving and guiding me towards becoming better at dealing with the disease. A year and a half ago, I was lost and angry and in so much pain that I totally lost my ability to control what and how I was communicating with people. Every exercise, every treatment, every skill felt like I was pouring gas on the flames. My body was over sensitive and it felt that I would never be able to bring that sensitivity down.

I was not in the mood for all these treatments, therapy, skills, medication and all the other stuff that I had to try, so that I could get a grip on CRPS, but I pushed through nonetheless. Today I am sitting here, a year and a half later, and I still have my ups and downs, I still have my flare-ups, I still have my constant pain and lucky packet events.... BUT I do experience that my body's oversensitivity came down. And I do not think that it is only the meds that is causing the gaps between the pain signals to become greater/farther apart, but rather a combination of all of these things that is helping me to cope much better with CRPS. The fact that I can push my limits, instead of giving in to hopelessness, or the fact that I can enjoy my good days and look forward to better days, instead of dreading and fearing the good days because of what may come the day after, is proof of that.

I have grown, not in having unrealistic expectations, but in regaining my hope while staying realistic about my abilities. I have grown because of what I had to endure - it does not lessen or nullify the struggles that I had to endure. Someone once commented on Chapter 10: The joy is in the Journey saying, "No it is not". This person perhaps misunderstood what I tried to communicate. Perhaps the heading was a bit tongue in cheek, but what I tried to convey was that we should not become so focussed on all the bad that is happening to us and all the pain that we experience, that we forget to live and to enjoy and appreciate the good that also happens to us.

The movie, Major Payne was released in 1995. In the opening scene, one of the soldiers get shot in the arm, and as he is crying out, "my arm, my arm" Payne walks up to him and says, "Want me to show you a little trick to take your mind off that arm?" He then goes and break the marines finger, causing the marine to forget about his arm and now the marine shouts, "my finger, my finger". It is so easy to get focussed on the hurt and pain, that you are willing to grab onto the new hurt and pain, in order to forget about the initial issues. Even pain can become like a drug or a crutch if we allow it to be. Always needing the next fix. It is like breaking the finger so that I can forget about my arm that is shot. And I know, I felt exactly the same way. I also came to a point where I felt that I would rather chop my hand off than enduring the constant pain. And the next step is trying to hurt yourself as if you are trying to force your body to do as you want it to do. I remember one evening when I was braaiing (was only Teresa, myself and the kids), how I actually put my hand in the flames and tried to hold it there as long as possible - like punishing my hand for feeling the way he does and for giving me hell because of it. When you are in pain, your mind can push you into dangerous territory.

Of course there are also those people that thrive on being "sick" and gaining sympathy. That of course, is the other side of the coin. When you have flu, they have lung cancer, or when you have knee pain, they need knee replacement surgery. They need to have it worse than everyone else in order to keep the attention focused on them. This is a disease on its own, which I am not going to go into. We all know people like this. Unfortunately, this is also one of the reasons why people, even medical professionals, often do not trust or believe CRPS sufferers - because they have become so used to people getting their fix off being (thinking that they are) sicker than the next person, when in fact there is nothing physically wrong with them. The moment someone with CRPS comes along, where the pain is real, but the signs is perhaps not visible, it becomes hard for these professionals to know what is truth. In Afrikaans we have a word " Ipekonders", which refers to people that has "fantasy illness" to gain sympathy or favours.

But before I get too far off topic, to take one's mind off suffering, we do not need a different type of suffering. We need to look for those moments when the sun shines through the clouds, where we can feel the warmth on our skin, those moments of hope and relief that we can hold on to. And when we are in the depths of despair, it is easy to think that such moments do not exist. The truth however is that, at times, we need to look away from ourselves to find them and to acknowledge them. I am writing this from my own personal experiences the last two years.

Worry is a thief and a murderer

I think it was Corrie Ten Boom (a holocaust survivor) that once said: "You can either go in a downward spiral of despair, or you can go in an upward spiral of praise" To get to that point however, is not always that easy. That is why it is necessary to allow yourself to go through all the ups and downs, no matter how hard it may be. Unfortunately, there are no shortcuts. That is why it is important to live one day, one moment, one breath at a time.

Most CRPS warriors that I have spoken to worry about something. They worry about their health, about their finances, about big medical bills, about how the world see them, about not being believed, about how family and friends will react, about how they will feel the next day, about how they will cope etc. I had to learn that worrying over what may or may not be is just crippling my healing process. I had to learn to enjoy the now, and to take whatever tomorrow may bring when and if it happens.

In her book Reflections of God's glory, the same Corrie Ten Boom writes the following:

"Once, I had a burden that weighed heavily on me. I set it down and looked at it. Then I saw that everything about my burden was borrowed. One part belonged to the following day, one part to the next week. My burden was a huge, stupid mistake. I realized that worrying is carrying tomorrow’s burden with today’s strength. It’s carrying two days at once. It’s prematurely thinking of tomorrow. On the calendar, there is only one day for action, and that is today.

Making plans is time-consuming. Time is necessary for making wise plans, but carrying them out belongs to only one day—today. We become concerned about the future—our financial concerns, our health. Where does this lead to? Nowhere. Nowhere that is worth the trouble because tension ruins things. It depletes the energy that you need to live today. The Holy Spirit does not give you a clear blueprint for your life, but He leads you from moment to moment. Live for today! The sun will shine on the problems that tomorrow brings.

I read somewhere, “Why don’t we look for something that is easier than anxiety? Worried people are like tightrope walkers, trying to walk over a rope from the past to the future, balancing between hope and fear. In one hand they hold a bag with the disordered past, in the other bag, the feared future. Worrying does not take away tomorrow’s grief; it takes away today’s strength. It does not enable us to avoid evil, but it makes us incapable of dealing with it when it comes.”

I once heard a nice story, a kind of legend. A small clock, which had just been finished by its maker, was put on a shelf in his shop between two old clocks that were busily and loudly ticking away the seconds. “So,” said one of the old clocks to the newcomer, “you’ve just started this task. I feel sorry for you. You are bravely ticking now, but you’ll be very tired once you’ve ticked thirty-three million times.”

“Thirty-three million ticks?” said the startled clock, “but I could never do that!” He immediately stopped in desperation.

“Come on, stupid,” said the other clock. “Why do you listen to such talk? That’s not how things are. At each moment you only need to tick once. Isn’t that easy? And then again. That’s just as easy. Carry on like that.”

“Oh, if that’s all,” the new clock cried, “then that’s easy enough. Off I go.” And he began to bravely tick each moment, without paying attention to the months and the millions of ticks. When the year was up, he had ticked thirty-three million times without realizing it.

Yes, living for the moment, that’s what you need. The Lord’s prayer says, “Give us today our daily bread.” …A person does not fall so much because of the troubles of one day, but if tomorrow’s burden is added, this load can become very, very heavy. It is wonderfully easy to live just for the day."

(Cornelia Arnolda Johanna "Corrie" ten Boom (15 April 1892[1] – 15 April 1983) was a Dutch watchmaker and later a Christian writer and public speaker, who worked with her father, Casper ten Boom, her sister Betsie ten Boom and other family members to help many Jewish people escape from the Nazis during the Holocaust in World War II by hiding them in her home. They were caught, and she was arrested and sent to the Ravensbrück concentration camp. Her most famous book, The Hiding Place, is a biography that recounts the story of her family's efforts and how she found and shared hope in God while she was imprisoned at the concentration camp. - Wikipedia)

Worry VS Concern

Worry has got nothing to do with planning. There is a difference between planning how to improve your finances, and constantly worrying about it. Planning implies that you are doing something about your situation, no matter how small it may seem. You are concerned about your situation and therefor you are trying to find solutions. Being concerned is more fact based and geared towards problem solving.

Worrying on the other hand is geared towards murdering your dreams and robbing you of your future by stealing your now. Worrying anticipates problems with an overwhelming feeling of loss of control.

I had to learn that worrying is breaking down the little strength that I do have left to fight CRPS today, so that I have nothing left for the fight of tomorrow. Yes, it is human to worry. It is human to fear. It is human to lose faith. It is human to break down and just give up. But it is also human to fight. It is human to look for solutions to problems. It is human to ask others to hold your arms up when you get tired in order to keep faith. And it is okay to just be human. When people talk of being human, they often make it sound like a bad thing, a big NO-NO, an unforgivable sin. Newsflash! We are human! We were created to love and care and hate and pray, to laugh and cry, be joyful and get angry - even to worry or to be concerned. But we were also created to think and to feel, to separate, to isolate, but also to embrace and ask for help.

I remember when I was about 10 years old, I wrote the following in my Bible: "It is better to give than receive, but sometimes you need to be able to receive, in order to give!" We often give so much of ourselves to others that we forget to refill and stock up ourselves. People with CRPS, or any other illness, can still add major value to this world. I think that we often try to change people’s mind on how they see disabled people that have physical disabilities in order to include them in society. Yet the ones that suffer in silence, like people with CRPS, MS, Lupus, Cancer etc. is often shun and pushed out of society, by those that are closest to them. Earlier on in my blog I said that one of the biggest dangers to CRPS warriors is the absence of knowledge and the inability to understand something that you cannot see and that you have not yet experienced yourself. And that have not changed.

The concerns that CRPS warriors have, and even the worries that we have, are real. Perhaps the fear may not always be real, BUT it feels real to us. And when you are in that situation, No-One can tell you that the feeling is not real. The reality may differ, but the feeling is our human response to what we experience. And nobody can tell you that you may not feel that way. The challenge is to be able to discern between what I feel and what is real...or better put, between being concerned, and being worried. I have found that the moment that I take the leap from being concerned to being constantly worrying, my foundation becomes shaken and my hope diminishes. Now this is a very easy progression when you have something like CRPS, and that is why it is so important to transform your mind and guard your heart. A large part of my road to "healing" or remission was/is dealing with acceptance and renewing my mind. I had to decide - were I to go down a spiral of despair (and at the beginning I did, and it was okay for a while, but I realised that I cannot stay there indefinitely), or were I to go in an upwards spiral of praise - taking the focus and my thoughts away from the misery of a diagnosis that sounded like a death sentence.

Worries can do nothing for you, except drag you deeper and faster down that spiral of despair. Taking a step back from yourself and your circumstances, raising your concerns and looking and working towards workable solutions, frees the mind, and reignites your hope in seeing the impossible become possible. I write from my own personal experiences, discoveries and awakenings. I write from my personal point of view, what CRPS has done and is doing to me personally and how I am dealing with it. I do not have all the answers, and often it feels like I have only started to scratch the surface, but I am thankful that my journey and my experiences are able to help others and encourage others - even if it is only to let other CRPS warriors know that they are not alone in their struggles.

Remission

"a temporary diminution of the severity of disease or pain." - Oxford dictionary

How do you know if CRPS has gone in remission?

"There's no known cure for complex regional pain syndrome (CRPS), but a combination of physical treatments, medicine and psychological support can help manage the symptoms. It's estimated around 85% of people with CRPS slowly experience a reduction in their pain and some of their symptoms in the first 2 years. But some people experience continuous pain despite treatment. In rare cases, further problems may develop, such as muscle wastage in the affected limb. There's currently no way to predict who will improve and when this may happen." (www.nhs.uk)

I do believe that there is different stages or experiences of remission, and that it may not be the same for everyone. Someone like myself with Type 1 CRPS, may experience this different than someone with Type 2 CRPS. Mainly due to the difference of one having actual nerve damage and the other not. So remission for myself might possibly look quite different from someone like say Frank (Ch. 12) for example, just as the worsening of the disease may take quite different turns as well. Yet I do believe that for both, remission may be possible. Understand this, remission does not mean that you are cured. Remission simply means that there is a reduction in pain and a reduction in the symptoms. It does not mean that you are guarded against flare-ups, nor that CRPS will not be triggered again or even spread. Remission is the body's response to various and continuous treatments and rehabilitation therapies, to take a breather and slow down on the body's ability to become over sensitive or over stimulated.

When I think back at the beginning, everything triggered my CRPS. I would hit my elbow, and my hand would scream in pain. The blow was nowhere close to my hand, but because my senses and my brain were so oversensitive to what was happening, I was hit ten times as hard. But apart from that, every moment of every day was like that. I was like a spring that had this enormous amount of tension on it at all times. So as time went on and I continued with a whole network of therapies, that tension became less and less. It did not disappear, but it became more manageable. my hand still breaks out in flames when I hit my elbow, I still have constant burning and pain and stiffness. It still reacts to cold, it still sweats and feel smooth and cold, but I have regained certain amount of mobility in my hand that enables me to do certain stuff, even if only to a certain degree or breaking point. Stress still triggers it, as do a lack of sleep, or over exhaustion of my hand, but for the most part it is not that non-stop pulsating excruciating pain. I am still constantly tired and I still experience the side effects of the meds. I can differentiate between good and bad days, more than in the past two years. Yes, perhaps it is the effects of the medication that only pulls a temporary cover over the symptoms, but even if it is, isn't that why I was placed on this medication in the first place. The purpose of the medication was to bring me to a point where I would be able to slow down my system overload and sensitivity to such an extent, that I could push through with the therapy.

So, to an extent, I believe that I am experiencing remission in the sense that CRPS has become more manageable, and that certain functions have returned, or become easier (although not necessarily painless). I do believe that the warmer weather also plays a big part in this, and I realise that come winter, this may change again. I am not blinded to that fact. Thinking of the last year and a half, I barely felt any difference between winter and summer - it all felt like winter. The one thing I know however is not to let my guard down. Now, more than ever, I need to continue with my therapy. It is easy to slack down when the pain is not so constant. That makes it even harder to focus on therapy, as all you want to do is take a break. But, it also makes it much easier to experience a flare up, because you are more relaxed. It is like when you are driving down a dangerous mountain pass.

I remember when I used to do a lot of camps in Bainskloof, I came to a point where I got so used to driving the mountain pass with it's narrow two-way lanes, that I even became reckless. The pass is full of turns and bends and it is easy to go over the edge if you do not focus on the road. Driving it so often can create a false sense of security, so much so that you start to increase your speed every time you go up or down the mountain, till you get to a point where you reach the foot of the mountain and suddenly realise that you have no recollection of coming down the mountain at all. You went through the motions without concentrating, without thinking, without really taking note of what was happening around you. The danger of this is, that this is when you start making mistakes and when accidents happen.

Going into remission, can have a similar effect. Everyone wants to experience remission, and it can be so overwhelming when you do go into remission, that you forget to focus and to continue fighting the battle. You can get the same false security, thinking that CRPS is gone, or that the worst is over, that you start going through the motions, not concentrating, not focussing, not taking note of the triggers along the road. Remission need to be enjoyed. remission need to be appreciated. Remission need to be used to renew your strength and to build your defences. Remission need to be a time where you work twice as hard to keep the flare-ups at bay. No-one knows how long remission will last. For some it may be years, for others, months, weeks or days. When I think of Teresa and SLE, she had times where her remission was for short periods before it would flare-up again. At other times it would be much longer periods of time. However, she knows that especially in her remission periods, she cannot let her guard down. She knows that if she wants to stay in remission, she cannot suddenly spend hours in the sun. She knows that she need to keep her stress down. She knows that she need to exercise to keep her joints flexible so that the SLE is more manageable. She also knows that should she ignore these things; she can expect to have bad flare-ups.

Perhaps there may not be a cure for CRPS, but we all strive towards at least experiencing remission. Remission does not mean that we are healed...it simply means that we are fighting twice as hard as yesterday.