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

When the Fog rolls in!

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

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

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

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

The moral of the story!

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

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

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

Weaknesses VS Strengths

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

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

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

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

Being Strong at your Weakest Point

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

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

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

A Carrot, an Egg, and a Cup of Coffee

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

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

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

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

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

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

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

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

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

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

Colour the World Orange!

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

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

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

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

When Pain becomes the new "NORMAL"

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

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

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

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

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

 

Perceptions and Assumptions VS Truth and Reality

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

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

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

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

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

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

CRPS My Journey: Chapter 10 - The Joy is in the Journey

To be or not to be...

It has taken a lot of back and forth, weighing up pro's and con's, but eventually we decided that I will not continue with the Lyrica. It was great to have some feelings back, and hopefully I will be able to hang on to some, but it was also challenging at the start. About a week or so into using Lyrica I had a sudden rush of emotions. Being on Cymgen for a while now, it must have been a shock for my system to experience some emotions again, so much so that it was so overwhelming that it left me feeling deeply depressed. But then about an hour or so after this rush of emotions hit me, it was gone - again as abruptly as it came.

Over the weeks I had more emotional encounters, though not as abrupt as before. This time it was more gentle and it felt nice to experience some of them again, and to be able to laugh and/or smile more spontaneously. Unfortunately, with the emotions, also came a dark cloud of irritation. I couldn't shake that feeling that it was building up more and more pressure under the surface, like a veldfire smouldering, lingering in the underground roots, waiting for those oxygen pockets when it can ignite and break out onto the surface again. And no matter how hard I tried to keep this from happening, I eventually had to accept that what I thought I was preventing, was in actual fact me trying to put it back under ground. Teresa noticed what I couldn't, and that was that with the rising pain levels, my irritation levels were being fuelled. My irritation has hit some of those oxygen pockets and ignited.

I think part of the reason why I became oblivious to this was due to the dizziness and increased brain fog that I was battling since taking Lyrica as well. A further issue was that, although I got a lot more sleep than before, I felt ten times more exhausted than before, and with this my reaction time behind the steering wheel was also affected as I struggled to keep my eyes open. This was especially concerning as I would often have my wife and kids with me in the car. Another concern was that if I had to work with power tools, I would not be able to trust myself to be clearheaded enough to do so. So while I was battling all of this, my guard was let down, so that I would not notice how my irritation grew, as I became more aware of my pain and overall sense of not feeling well.  

So the question now was, which would be the best of two evils - no emotions or irritation. On the one hand I had no guarantee that the Lyrica alone would work as I am still on Cymgen as well. On the other hand, should I taper off Cymgen and then find out that the Lyrica does not work, I don't know if I would go back on Cymgen, knowing that I would most probably have to go through that initial 4 weeks of constant nausea again. What I do know at this point is that, despite everything, the Cymgen does help to keep down the rate at which the pain signals are being transferred, which in terms of dealing with the pain is great.

So Teresa and myself came to the conclusion that I would rather battle the side effects of the Cymgen, than that of the Lyrica for obvious reasons. With the lack of emotions, I can still fake it if I must, whereas with the irritation I have the possibility of losing my verbal filter again. And I am okay with this decision for now. But it was (and is) important for me that this decision was not to be taken lightly, nor that I come to this decision on my own. My struggles are not simply my own. It affects everyone around me, especially those closest to me. Therefor I cannot make these life altering decisions in seclusion.

The Joy is in the journey

As I am writing here, I am experiencing a really bad pain day, but that is okay. We took the kids out to Majic Forest yesterday for some light hiking, which was awesome. I have missed hiking and being out in nature so much. I did however discover how utterly unfit I have become, which I hope to use as a motivation to work towards becoming fitter, and hopefully to unlock my internal drug cabinet again. It was amazing to see the kids enjoying what I have enjoyed for such a great deal of my life and, although my hand and neck complained for a great deal of the hike, I really want to work towards doing more of these activities with them. I realised again (and I have said this before) that is not so much about what I used to do, as it is about doing something, no matter how small. I might not be able to climb or do 3 day trails at the moment, but I were able to do a 2.6km hike (1.6mile) with my kids, and that is what matters, that I were able to start somewhere. Who knows, maybe someday I will be able to do longer hikes or more extreme activities again. Yes, I had a bad pain night and have a bad pain day, but it is all worth it. If you know you are going to have pain and burning, why not at least give it a positive purpose. I'd rather have a good reason for experiencing a flare-up, something worthwhile...than just having a flare-up for no reason at all, just because I have CRPS - not good enough anymore... 

Sometimes we are so caught up in our destination, that we forget to live in the moment and enjoy the journey. The journey will not always be smooth and easy. There may be a great deal of tribulation, heartache and pain. But if we take the time to sit back and look hard enough, we will almost always find some joy mixed in there with the hardships. Sometimes we need to look back to see the joy that we were not able to see while we went through the difficult times. It is at times like these that we are motivated again to tackle the rest of the journey ahead. 

Part of my journey this past weekend may have been overshadowed with pain, but sitting next to the dam, taking a breather and just watching my wife and kids, out in nature, happy and full of energy, brought me into the moment so that I were able to enjoy the journey. And when I started to enjoy the journey, it did not take my pain away - as said before, my hand complained the whole way - but it helped me to take my focus off my pain for the moment and place it on my family and the precious time that we were able to spend together. 

In Chapter 8 we spoke about having a main goal or focus, on how we need to focus on where we want to be and where we need to be. We need a purpose to live for and to work towards. But on the other hand we should not be so focused on our purpose that we neglect to enjoy the journey that gets us there. The two is not in contradiction to each other, but rather in cohesion with each other. There need to be a fine, but healthy balance. My journey cannot just be a tool to reach my goal. If that is the case, I am going to miss out on so much of life itself. 

Sometimes we rather approach our journey like a horse with blinkers on, praying to just get through the journey and to reach our goal. We do not want to feel the pain, the burning, the exhaustion, the anxiousness. We do not constantly want to be reminded that we have CRPS, and that it is crippling. BUT...if we can find a way to see past all of this, and to see the little joys along the way, some of them that are actually born out of a state of pain and frustration, like accomplishing something we never thought would be possible since being diagnosed, or experiencing the joy on our children's faces because we spent time with them - then we would realise that even in our pain, there is still joy in the journey. And the more that we take a step back to do this, the easier it becomes, and the more visible the joys become on our journey.

Looking back, and ahead, on my journey, I am often reminded of a song by Michael Card that was released in 1987 called Joy in the Journey. The words go like this:

There is a joy in the journey, 

There's a light we can love on the way.

There is a wonder and wildness to life,

And freedom for those who obey.

All those who seek it shall find it,

A pardon for all who believe.

Hope for the hopeless and sight for the blind

To all who've been born of the Spirit

 

And who share incarnation with him;

Who belong to eternity, stranded in time,

And weary of struggling with sin.

Forget not the hope

That's before you,

And never stop counting the cost.

Remember the hopelessness when you were lost?

In the last couple of chapters especially, I have focused a lot on one's state of mind, radical acceptance and being the pilot of your own journey by making conscious decisions every day. CRPS is not something that will just go away, blow over or that can be cured. Nor is it something that should be belittled or be taken lightly. It takes a lot of effort and hard work to be able to stand up every day and say "this disease is not going to control my life and dictate my actions - I am the pilot of my own journey". And there are many days that you just do not feel up to it, to take on the battle. 

But what is worse?...failing because you have tried and fell short, but getting up, trying again and getting better at it everytime you try...or failure for not trying at all, and never knowing if you would possibly have succeeded. As Michael Card sings, "There is a wonder and wildness to life...Hope for the hopeless and sight for the blind". The only way to experience the wonder and wildness to life is to start with the journey while being present in the now. And that means taking the good days with the bad days, but holding on to the good days - whether it be as an inspiration or a comfort/reminder. That is where we will find the joy in the journey.

I recently came across an excellent piece someone wrote on CRPS, that describes so much of what CRPS Warriors experience, and I want to close off this chapter with this:

Hi, My name is Complex Regional Pain Syndrome

Hi, My name is Complex Regional Pain Syndrome . . . surprised you earlier today didn’t I? Let me introduce myself, some friends who have known me for a very long time call me RSD or CRPS . . .

I’m an invisible inflammatory disease that attacks your sympathetic nervous system. I am now velcroed to you for life. If you have CRPS you hope and pray for remission but there is no cure. I’m so sneaky -- I don’t show up in your blood work, in x-rays, MRI’s can’t detect me, basically there is no test to prove you have me. There are only tests to rule out other things. Others around you can’t see me or hear me, but YOUR body feels me, I make sure of that. I can attack you anywhere and anyway I please. And, I will. Constantly, relentlessly and intensely. 

I can cause severe pain or, if I’m in a good mood, I can just cause you to ache all over. Remember when you and energy ran around together and had fun? I took energy from you, and gave you exhaustion. Try to have fun now. I can take good sleep from you and in its place, give you brain fog and lack of concentration. I can make you want to sleep 24/7, and I can also cause pain and special form of insomnia. I can make you tremble internally or make you feel cold or hot when everyone else feels normal. I can cause one limb to change color, look bruised, feel super sensitive randomly for seemingly no reason. I can also give you swollen hands and feet, swollen face and eyelids, swollen everything. OH, and just because I started  in one part of your body, don’t think I can’t travel and effect other limbs or any other part of your body. I choose to torment. I can, and likely I will.

I can make you feel very anxious with panic attacks or very depressed. I can also cause other mental health problems. You know crazy mood swings? That’s me. Crying for no reason? Angry for no reason? That’s probably me too. It is hard to not feel hopeless when you have me beating your body up constantly. So many people that we visit are literally dying to get away from me and will go to great lengths to end it all over our inseparable bond. I can make you literally scream out loud, anytime of day or night, anywhere you are because I can create pain that makes you sure someone just stabbed you with a knife. Making you look crazy is fun for me.

I can make your hair fall out, your nails become dry and brittle, your teeth become brittle and crack, cause acne, cause dry skin, the sky’s the limit with me. I can make you gain weight and no matter what you eat or how much you exercise, I can keep that weight on you. I can also make you lose weight. I don’t discriminate.

Some of my other inflammatory disease friends often join me, giving you even more to deal with. If you have something planned, or are looking forward to a great day, I can take that away from you. You didn’t ask for me. I chose you for various reasons: That sports injury, needle stick, sprained ankle, or that car accident, or maybe it was the surgery to correct a bone problem. Whatever the cause, I’m here to stay. 

I hear you’re going to see a doctor to try and get rid of me. That makes me laugh. Just try! You will have to go to many, many doctors until you find one who can even try to help you effectively. Most of them will make you feel like you are to blame, or worse, it is all in your head. I’ll convince them that you are crazy because normal people know that you can’t have all those symptoms all over your body and still walk around looking normal.

You will be put on the wrong medication for you, pain pills, sleeping pills, energy pills, told you are suffering from anxiety or depression, given anti-anxiety pills and antidepressants. There are so many other ways I can make you sick and miserable, the list is endless -- If your body is all of a sudden dealing with things that were never issues before -- yep -- that’s probably me!

Shortness of breath or “air hunger?” Yep, probably me.

Bone density problems? Can’t regulate body temp and poor circulation? Constant “electric jolts” and “burning sensation” Yep, probably me.

I told you the list was endless. You may be given a TEN’s unit, get massaged, told if you just sleep and exercise properly I will go away. You’ll be told to think positively, you’ll be poked, prodded, and MOST OF ALL, not taken seriously when you try to explain to the endless number of doctors you’ve seen, just how debilitating I am and how ill and exhausted you really feel. In all probability you will get a referral from these “understanding” doctors, to see a psychiatrist. I will make you question your own sanity at times. I will make you contemplate unthinkable scenarios.

Your family, friends and co-workers will all listen to you until they just get tired of hearing about how I make you feel, and just how debilitating I can be. Even after explaining to those you interact with regularly that I’m the MOST painful disease known to man, and there is NO cure, they will say things like “I hope you have a speedy recovery”, “Feeling any better today”, or “You don’t look sick”. Those who don’t know me well have no idea how cruel and unusual my punishment can be.

Some of them will say things like “Oh, you are just having a bad day”, or “Well, remember, you can’t do the things you use to do 20 Years ago”, not hearing that you said 20 DAYS or 20 MINUTES ago. They’ll also say things like, “If you just get up and move, get outside and do things, you’ll feel better”. They won’t understand that I take away the ”gas” that powers your body and mind to ENABLE you to do those things.

Some will start talking behind your back, they’ll call you a hypochondriac, while you slowly feel that you are losing your dignity trying to make them understand, especially if you are in the middle of a conversation with a “normal” person, and can’t remember what you were going to say next. You’ll be told things like, “Oh, .my sister had that, and she’s fine on her medication” when you desperately want to explain that I don’t impose myself upon everyone in the exact same way, and just because that sister is fine on the medication SHE’s taking, doesn’t mean it will work for you.

They will not understand that having this disease impacts your body from the top of your head to the tip of your toes, and that every cell and every body system and organ can be effected. Not what works for someone else. The only place you will get the kind of support and understanding in dealing with me is with other people that have me. They are really the only ones who can truly understand.

Forever yours,

Complex Regional Pain Syndrome (Author Unknown)

Warriors never give up! Yes, we get tired! Yes, we feel wounded! Yes, we bleed and scream in pain! But we NEVER give up!!!

 

Burning Nights