CRPS My Journey -Chapter 6: Knowledge is power

 When the battle is chosen for you

So this week has been one of those weeks where I had to choose my battles. Unfortunately, I did not really have free choice in this. Zoey, our Labrador, and the Staffies (our neighbour at the back's dogs) decided to have a play date. So they dug a hole from both sides of the fence to visit one another. Now we had this problem before, but each time you close the hole, they just find another place to dig one. 

By now we've had enough, so the boys and myself decided that we were going to dig a trench next to the wall, put down some chicken wire - deep and wide enough to at least irritate Zoey and discourage her from digging - cover it back up and then place retainer blocks down the full length of the wall as well. Simple enough...not so simple though when you basically have one hand to work with. It almost felt like I was putting my hand through forced labour, having to bite through the pain in order to use both hands to get things done. 

But the job got done, and for the next four days my hand was swollen, stiff, incredibly sore and burning like hell...so much so, that sleep was not much of an option. But I knew that this was going to be the case before I started, so I also knew that I would have to deal with it as it happened. The knowledge did not make it less painful, nor did it stop my hand from feeling cut off from my body. In actual fact it felt as if my hand was cross with me, turning his back towards me, sulking and feeling that I have abused him and failed to protect him. What he did not realize though was that the knowledge that I have gained over the last year, helped me to be prepared to shelter and protect him as much as I possibly could. 

Knowledge is power

I realised the truth in something that my spine specialist said when I went for my 6 months' check-up last week: "The greatest defence or treatment against CRPS is knowledge". In other words, trying to understand something that goes beyond our understanding by gaining knowledge of what it does to me, of what triggers it for me, of how I need to deal with it and how I can also help others that have to suffer through this dreaded disease. The greatest power is in what you do with that knowledge and how you allow it to affect you. I can allow it to become part of the CRPS baggage and see the glass as half empty - only focusing on what to expect and how it is going to affect me. Or I can use that same knowledge to somewhat prepare me to "lessen" the blow, by knowing what my limitations are and being creative in dealing with it as to limit the amount of damage to my hand; or to know that I need to have a heat pack ready for afterwards so that I can show love and affection to my hand. So it is not only gaining knowledge about the disease, but also various forms of treatment on various levels in your life, i.e. physical therapy, brain training therapy, mental or psychological therapy, emotional therapy, spiritual therapy and if possible medical therapy.

Having gone through what I have, thus far in my journey, has taught me a lot about what to expect, what to try and avoid, what to do and what not to do. Yes, I have made mistakes in how I have dealt with my hand before, my emotions, my reactions...but I have also learned through those mistakes...and my hand made sure that I paid for those "mistakes". All of this is part of the grieving process. If I did not go through this, I would not have gained the knowledge of how to start handling CRPS in my life. Yes, I do not have all the knowledge, nor do I have all the answers or have I arrived at a place where I can say that I am truly handling it - far from it...perhaps I never will get to that place, but damn I am much closer than I was a year ago. And I realise that for a great number of CRPS warriors, that are still in the process of being diagnosed, or who has only recently been diagnosed, they still need to go through all these stages of grief. And nobody's journey will be the same, just as nobody's triggers are exactly the same, or their treatment, or their body's response to the CRPS and the treatment.

I do however believe that through my own struggles and through the knowledge that I have gained thus far, I will be able to help and encourage others that still need to go through this. For example, in Chapter 4 we spoke about Cymgen/Cymbalta and how it affects my personality in a way that I don't like it. For a great number of people this is a horrible drug with horrible side effects. What I came to realise though, is that CRPS in itself is a horrible disease, and that because it is so horrific, horrible treatment is often needed to counter it - if that makes sense. Getting a SCS implant, or an amputation, or going through PT or mirror therapy, or using drugs like Cymbalta, Lorien or Lyrica all has its horrible side effects, and everyone is affected differently. When you are surrounded by these side effects,  as well as the effects of CRPS, you do not always see the positive that the treatment is doing, or the even worse effects that it is preventing, or protecting you from.

In my case, not being able to use any pain medication for CRPS, I have had to learn to cope with the side effects of Cymgen, not because I like or enjoy the side effects, or that I have become used to it, but because, despite the side effects, the drugs enable me to cope with CRPS much better than I would have had without it. And if I have to choose between two evils, again I'd rather choose the lesser of the two. So what about withdrawals when I eventually need to wean off the drug? We'll cross that bridge when we get there. For now, I am staying in the moment. I cannot change what has already happened in the past and I cannot worry about what might or might not happen in the future. But I can choose how I deal with what is happening in the here and now. One day, one moment, one breath at a time.

So coming back to knowledge, it is important to gain as much knowledge about CRPS as possible, and to carefully choose which parts of that knowledge applies to you. One of the first things that I did when I was diagnosed, was to join some online support groups, which is great, and I think is definitely needed, even if you just listen to the stories of other warriors. The positive side of this is that you hear other people's stories of their struggles with CRPS, and it makes you feel less alone in your struggles. You realise that everyone is looking for hope. The great thing about social media is that those nights that you cannot sleep, there is always someone somewhere in the world that you can chat to, someone that is experiencing what you are experiencing. So social media is not all bad. I have learned that there are many people that have it much worse than myself, people with actual nerve damage, people that have been living in hell for many years. People of all ages, all nationalities, all cultures, all religions...people that bleed red like you and me. CRPS does not discriminate on age, religion, culture, colour, gender or anything else. Everybody and anybody is susceptible to CRPS...some people are unfortunately more prone to developing CRPS due to trauma - physical and/or mentally. Statistics does show that a higher percentage of woman and a lower percentage of young children and elderly people get it, but anybody can get it.

And I had to learn that although we have a lot in common, not every symptom that I read about is my symptom, not every struggle I read about was my struggle. Yes, it could be, but knowing what I am going through, and knowing other peoples struggles, I had the choice to give in and allow it to overwhelm me, or to work on myself and prevent myself from getting to that stage. And gaining this knowledge helps me to see the warning signs and to do something about it as far as I possibly can. What I also realised was that you cannot grab and try to hold on to every remedy or treatment that you read about. Not every treatment is the right treatment for you. What works for someone else is not necessarily going to work for you. So you can waste great amounts of money and time, and gain a great deal of false hope that only sets you up for disappointment and depression, if you do not gain the right knowledge beforehand. 

I am reminded of numerous times that I saw this product or heard of that treatment, even heard stories of how it helped so and so. However, if I did not take all the data and information that I received and tested it by talking to Hesti or Wendy, people that I trust, people that knows much more about the medical treatments, or that are in a position to collect more viable information on those treatments, I might have threw in the towel long ago. In order to gain the correct knowledge, that would be true in your circumstances, you need somebody trustworthy, someone that has your best interest at heart, someone that you can use as a soundboard. I will often email Hesti when I hear of something that sounds as it might be worth trying in my situation, and then she will answer me back with, not only her opinion, but with proven medical facts to support why she think it might be something that we can try, or why she would advise against it. In the same way she will send me links or articles that she feels might benefit me. In gaining knowledge it is important to have somebody that you trust and that you can use as a soundboard. Somebody that not only encourage or discourage you based on their training or experience, but that also listens to you, that helps you to break open and discover truths about yourself, about the effects of CRPS on you as a person, but also about possible treatments and coping mechanisms that may be right for you. I am very blessed to have these people in my life. Unfortunately, not everyone is so lucky. So I pray that for some people I may be that person in life.  

Returning to online support groups. Yes, it is an awesome way of connecting with people that understand some of what you are going through. however, on the negative side, you do not always hear the positive stories of hope as you'd hope. Stories of remission and how people were able to regain life after CRPS, or rather despite CRPS. You do hear some of these stories, sometimes, but for some reason these people often quietly vanish from these groups and do not always share their stories. This is a shame, as their stories have the potential to help others that are struggling.

The dreaded check-up

I went for my 6 months' follow-up at the spine centre, something I really was not looking forward to. I think it has something to do with knowing what you know, and in the back of your head expecting the worst possibilities, without giving a voice to it. So you walk into the Dr's office dreading the worst, while you really do not know what to expect. I mean, your brain knows that this is not just a routine exam to give you a clean bill of health. Your brain knows that your spine is in trouble, and your hand do not for one moment let the opportunity go by to remind you that he is also full of s.....issues. I think my hand has found a way to silently communicate with my spine, behind my brain's back, and tell my spine - lets stir things up a bit. I think at some point one need to start seeing some humour in all of this. These conditions are not going away, so you might as well approach it with some humour. Not making fun of CRPS, but approaching yourself with a lighter mind-set.

Anyway, so the exam was not that bad. He did not tell me anything that we have not discussed already. He confirmed again that he does not want to operate right now and that we will be trying to extend it for as long as possible, unless it becomes a critical matter between being able to move or becoming paralysed. He explained that although my spine is a disk problem and not a nerve problem, i.e. there is no nerve being pinched, when he cut, het need to cut very close to the nerves. With my hand being as it is, the possibility is that, if the CRPS is not managed properly, it could affect my neck and spread down my spine. We now know that I am prone to things like CRPS, and in his words I "got dealt a very bad hand". So we are taking it year by year with check-ups every 6 months. Hopefully we can extend the inevitable as long as possible.

For now, we are doing what we've been doing the last couple of months. I am continuing with my mirror therapy, graded motor imagery, therapy, meds etc. This blog also helps a lot. As I have said before, it is for raising awareness, but at the same time serves as self-therapy. As I am working on this blog, my hand is actually not too bad. I get this strange feeling that he realises that the blog is about him, so he thinks he is the cat's whiskers. The moment I start doing something else, he starts complaining. Typical - spoilt brat...LOL. 

Bonus:

A while back, I was jokingly telling one of my co-workers that perhaps I should write a musical about my journey. She said "why not", and that made me think. If I had to really do this, what would it be like? What type of music genre would fit best with a condition like CRPS that is so full of extreme ups and downs and surprises? It would definitely not be classical. I think most of the time it would be more hard rock or metal, mixed with some country - you know what they say - a good country song always has love and lost in there somewhere.

So I started to have this image of these two main characters on stage. Entering from the left is this always changing character that is trying to work out what is going on, trying to cope with all the changes taking place, trying to find his place in this world. On the right is a character, a mix between Chucky and the Joker from Batman, full of himself, determined to show everybody who is in charge, that he does not need anybody, that he does not report to anybody but himself, that he does things his own way with no regards for those closest to him. A character that is so absurd, so grotesque that does not care about anyone but himself.

And it would probably go something like this:  

CRPS: The Musical

1st Act

(Left stage) Entering a dark rainy cloud singing:

"Yesterday, all my troubles seemed so far away
Now it looks as though they're here to stay
Oh, I believe in yesterday

Suddenly, I'm not half the man I used to be
There's a shadow hanging over me Oh,
yesterday came suddenly

(Yesterday by the Beetles)

(Right stage) Entering Chucky as the Joker from Batman

Oh Lord it's hard to be humble

When you're perfect in every way

I can't wait to look in the mirror

Cause I get better looking each day

To know me is to love me

I must be a hell of a man

Oh Lord It's hard to be humble,

But I'm doing the best that I can

(Lord it's hard to be humble by Mac Davis)

2nd Act

(Left stage) Suddenly a roaring lion jumps on stage and starts to rock:

You can't touch this
You can't touch this
You can't touch this
You can't touch this

Yo, I told you
You can't touch this
Why you standing there, man?
You can't touch this
Yo, sound the bell, school's in, sucker
You can't touch this

(Right stage) The Joker replies:

I used to have a girlfriend,

But I guess she just couldn't compete,

With all of these love-starved women,

Who keep cowering at my feet

Oh I probably could find me another,

But I guess they're all in awe of me

Who cares?

I never get lonesome

Cause I treasure my own company

The Lion roars in agony:

You got mud on your face, big disgrace
Somebody better put you back into your place, do it!
We will, we will rock you, yeah, yeah, come on
We will, we will rock you, alright, louder!
We will, we will rock you, one more time
We will, we will rock you
Yeah

The Joker full of himself replies:

I guess you could say I'm a loner

A cowboy out lone, tough, and proud

I could have lots of friends if I wanted

But then I wouldn't stand out from the crowd

Some folks say that I'm egotistical

Hell I don't even know what that means

I guess it has something to do

With the way that I fill out my skin tight white jeans

The Lion and the Joker in harmony:

Thunder, thunder, thunder, thunder

Thunder, thunder, thunder, thunder

Thunder, thunder

I was caught In the middle of a railroad track (thunder)

I looked 'round And I knew there was no turning back (thunder)

My mind raced And I thought, what could I do? (Thunder)

And I knew There was no help, no help from you (thunder)

Sound of the drums Beating in my heart The thunder of guns

Tore me apart You've been Thunderstruck

Rode down the highway Broke the limit, we hit the town...

Thunderstruck, thunderstruck Thunderstruck, you've been thunderstruck

[(You can't touch this by MC Hammer) / (We will rock you by Queen) / (Thunderstruck by ACDC) / (Lord it's hard to be humble by Mac Davis)]

3rd Act

A man walks out of total darkness onto a well lit, empty white sanded beach, with cars speeding by in the distance, singing:

I'm only human, I'm just a man
Help me believe in what I could be
And all that I am
Show me the stairway, I have to climb
Lord for my sake, teach me to take
One day at a time

The Joker jumps in again:

You put me through it

I'll still be doing it the way I do it

And yet, you try to make me forget

Who I really am, don't tell me I know best

I'm not the same as all the rest

I am the One and Only

Nobody I'd rather be

I am the One and Only

You can't take that away from me

(I am the One and Only by Chesney Hawkes)

The Man on the beach

One day at a time sweet Jesus
That's all I'm asking of You
Just give me the strength
To do everyday what I have to do
Yesterday's gone sweet Jesus
And tomorrow may never be mine
Lord help me today, show me the way
One day at a time

(One day at a time by Marijohn Wilken and Kris Kristofferson)

The Joker tries hard to get his say again

I want to break free, I want to break free

I want to break free from your lies

You're so self-satisfied I don't need you

I've got to break free

God knows, God knows I want to break free

(I want to break free by Queen)

The Final Act

A tired warrior enters the stage, put down his battle gear, fall on his knee and lift his eyes to heaven:

… Carry on, my wayward son

There'll be peace when you are done

Lay your weary head to rest

Don't you cry no more

… Once I rose above the noise and confusion

Just to get a glimpse beyond this illusion

I was soaring ever higher

But I flew too high

Though my eyes could see, I still was a blind man

Though my mind could think, I still was a mad man

I hear the voices when I'm dreaming

I can hear them say

… Carry on, my wayward son

There'll be peace when you are done

Lay your weary head to rest

Don't you cry no more

… Masquerading as a man with a reason

My charade is the event of the season

And if I claim to be a wise man, well

It surely means that I don't know

On a stormy sea of moving emotion

Tossed about, I'm like a ship on the ocean

I set a course for winds of fortune

But I hear the voices say

… Carry on my wayward son

There'll be peace when you are done

Lay your weary head to rest

Don't you cry no more, no

… Carry on, you will always remember

Carry on, nothing equals the splendor

Now your life's no longer empty

Surely heaven waits for you

… Carry on, my wayward son

There'll be peace when you are done

Lay your weary head to rest

Don't you cry, don't you cry no more

… No more

(Carry on my Wayward Son by Kansas)