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