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

The "Complexity" in CRPS

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

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

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

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

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

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

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

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

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

1. Patience

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

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

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

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

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

2. Acceptance

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

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

3. Forgiveness

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

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

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

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

4. Perseverance

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

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

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

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

5. Asking for help

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

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

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

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

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

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

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

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