CRPS My Journey: Chapter 25 - Dear Chucky...

 

Dear Chucky

Hey Chucky, how are you? Starting this letter with "Dear Chucky" sounds more like a “Dear John” letter, or perhaps a letter to “Dear Abby”. Yet it cannot be farther from the truth.

Let me start off by saying that I am sorry. Sorry that I took you for granted. This was not my intention. In actual fact, I counted so much on you, that I may not always have had your best interest at heart. Sorry that I have allowed you to be in the state that you find yourself in today. You did not ask for this – neither of us did. You did not deserve this. All you ever wanted to be, was part of a family, part of the rest of the body. Chucky is a name that I gave you because you revolted against me…or so it felt. It took me a while to realize that you were also only trying to make sense of what was happening to you, just as I was. It could not have been easy for you to wake up one morning with excruciating and constant pain and burning, feeling totally cut off from the rest of the body – cut off from your control center, the brain. You must have felt so alone, so isolated, so angry, so rejected, sending out signals without receiving confirmation back that everything is safe. You were like Onoda, the man that hid in the jungle for 30 years not realizing that the war was over, only to return in 1974 and be told that the war has ended 29 years earlier. I can just imagine…as that was how I felt. I felt like the father in the parable of the lost son (Luke 15:11-32). It felt like you have turned your back on me, deserted me, hated me. And it made me sad, and angry, and frustrated.

I remember times when you were so angry…angry at me, angry at the rest of my body, angry at the world – hurting yourself, hurting the rest of the body, rebelling in the worst possible way. And that just fueled my own anger, to a point where I wanted to cut you off from my life…literally. It felt at times that it would be better to live without you, than to go through this pain every day. I mean, you already felt disassociated from me, as if you were far away, cut off from the rest of my body. It felt like you had built this whole personality for yourself, with one goal…to make my life miserable and to punish me for allowing you to become this way. I tried talking to you with empathy, I tried yelling, cursing, swearing, ignoring you, but it all felt like pouring fuel on the fire.

It was only after having allowed myself to mourn, with the realization that I had to forgive myself and accept my new reality, that we were able to come to a mutual understanding – declared a ceasefire of sorts, that we would not kill each other, but rather look for common ground and a way to co-exist in a symbiotic relationship – knowing that things would never be the same again. This did not take away the fear and trust issues, but it did help us to start working together towards a common goal – that was, getting a handle on what was happening to us, and learning to cope with, and manage what was happening to us. We had to realize, that we were both affected by this disease, both trapped in a vicious and never-ending nightmare, entangled in our own humanity.

Oh how I took you for granted when life was so much different. Youth has a tendency to make you act as if you are invincible. “Protective clothing are for those that are irresponsible or clumsy, and why walk all the way back to the workshop to get the right and proper tool for the job, when you can use your hand to hit that beam into place.” Have I only realized that I was the irresponsible one, teaching others to wear the proper protective gear, telling them to do like I say, and not like I do. And yes, although the primary cause of this disease started with years of neck pain, you were the unfortunate one to suffer as a result, having undergone an operation to rectify a secondary issue that was caused by trauma, a trigger finger, from not protecting you enough as I should have. Unfortunately regret and stubbornness are often twins, and arrogance their fuel. Have I only listen to myself, have I only taken greater care…but regret is always too late.

Yet through all of this, I have grown (we both have). I have learned to accept life for what it is and treasure every moment of it. I have learned to build safe environments - not risk free, but safe and calculated - rather than closed off defenses. I have learned that when life gives you lemons…sometimes you make lemonade, sometimes you just eat the lemon, or you squeeze it over your food or bake a cake. And at other times you through the lemon away…or you throw someone with the lemons. Life does not come with a step by step handbook, and every answer does not fit every question, nor does every solution fit every problem. Sometimes none fit, and sometimes, when you are lucky, some or even all fit. What makes the different is your approach and how you decide to deal with the issue at that exact moment in time. We cannot plan our whole lives down to the tee and have smooth sailings without storms and sharp rocks along the way.

You have taught me that, when life is at its hardest and you are at your weakest, your survival strength is at its strongest. Pain then becomes a beacon, a compass that guides you safely through the storm, even though it may not feel that way in the moment. Can you just imagine if we were making fire, and your pain did not flare up, but instead went dead silent…it would be catastrophic. I might try to get you back for all the pain and issues that you have caused me, as you would not react on what was happening. 

Nobody ever said that pain was a bad thing. It is a necessary part of life. Unfortunately, our interpretation of danger and pain got scrambled along the way. So that which is supposed to protect us, started to torment us, and our ability to differentiate between what is real pain and what is not, became totally messed up. But we did not let that get us down. It may not always be a matter of us being strong necessarily, but at times rather us surviving at all cost because we do not have the luxury of giving up. We get tired…we rest. But when we get fed-up, we cannot give up. We give up…we die. We have learned to persevere more than ever, and we are challenged every day to put our differences aside and find common ground. You may well be my Robin to my Batman, but that does not make you less important or less crucial to my being.

The meds may take away my feelings and emotions, but it does not keep me from sheltering and protecting you. And perhaps I have learned this too late in life…but at least I have learned it and try my utmost to shield you. Thanks for not giving up on me, even in those dark times when you felt so far away. Thanks for letting me know that you are still there, even in those times when the pain and burning became unbearable. Thanks for trying again and again and again, especially in those times when you rebelled and just wanted to throw everything around. Thank you for refocusing my attention to where it mattered most. Together we can overcome anything.

Your greatest admirer

The eye of the Storm

The last couple of weeks I have had some horrible flare-ups. Chucky has not been easy to deal with, and together with the constant lightning strikes from my neck down my arm, causing the same effect as when I hit my funny bone months ago, it has been quite agonizing – unbearable at times. Having not been on my meds for the past two months also did not help, as I could feel how the pain signals were becoming closer together again…and the irritability started brewing under the surface again. Being in more pain, caused me to become more tired. And being more tired, caused me to have more pain as I needed to put in more effort to count on my coping skills. To pour fuel on the fire, I over-exerted my hand the last couple of weeks by finishing projects hands on in very limited periods of time - something that I used to enjoy. I used to enjoy working under pressure towards deadlines. With Chucky, these bars are being raised. It is like taking part in a swimming competition, with weights on your arms and feet. Yes, you will still finish the race, with some resistance...and your body will feel it afterwards.

The one medication that I do however still use (Dyna Sertraline) helps me to subdue the manifestation of my irritability. In layman’s terms…it helps me not to act on my irritability and puts me in an almost limbo-like state. Things that would have infuriated me two years ago is now just “ehh”. Yes, I acknowledge that I am dissatisfied with the situation, but I do not get emotionally involved. Somewhat similar to when I was on Cymgen, but also totally different. I still feel disassociated, but instead of just not caring or giving a damn, I know and acknowledge how and what I am supposed to feel, but on a more rational level if that makes sense. For example, I would acknowledge that I am displeased and I would tell myself that I want to get angry, and should be angry…and even mentally go through all the phases of being angry…without becoming emotionally angry. Quite a weird thing to explain.

When I was on Cymgen especially I had this whole out-of-body experience where I felt that my body was present in the group, but my inner being was detached and I was looking from outside inward, totally detached without being part of the group. This however has made way for a new type of experience. One where I feel trapped inside my body, instead of outside my body. So I still experience some disassociation and feel overwhelmed in social situations, but with the difference being, that instead of feeling detached from my body and looking down or from the outside inward to what’s happening, I now feel trapped in a bubble within myself. No other way to really describe this. It is like getting my body and spirit or soul reunited, only to have my spirit/soul pinned down in a cage. But I am dealing with it. As said before…the “Lucky Packet” disease…never know what you gonna get next.

But why am I not on the medication that is supposed to help my cope by broadening the gaps between the pain signals? Because I am still waiting on the Medical Council to make a decision. My battle with the medical aid has gone as far as the Council of Medical Schemes, who are currently investigating the fund and my case. Their ETA for giving me an outcome, is end of December on the latest. So now we wait. Should we not succeed, I will explore other avenues, but I will continue fighting. This unfortunately means that with our savings on our fund only kicking in again in January, any and all medication comes out of own pocket, which is just not viable at the moment. But I haven’t lost faith yet, and this means I just need to focus more on my coping skills.

But going through this did make me realize that we have not spoken on the connection between CRPS and Depression yet – perhaps touched on it, but not in detail as such.  

CRPS & Depression

“CRPS is a debilitating chronic pain disorder that can negatively impact physical, mental, and social health. Depression, anxiety, trauma, insomnia, and substance use disorders might occur in affected patients. The etiology of CRPS appears to be multifactorial; therefore, effective treatment should be multidisciplinary.”

Although CRPS is not a mental health condition, but, neurological condition. CRPS can cause or worsen anxiety, depression and stress. It can sometimes even lead to post-traumatic stress disorder (PTSD), especially when a limb is or feel cut off from the rest of your body – whether physically or mentally. The reality is that it is these disassociated feelings and anxiety, trauma, PTSD etc., that often lead to suicide and/or thoughts of suicide, which lends the name “Suicide Disease” to CRPS. So although depression may not be the cause of CRPS, it may very well be a result of CRPS.

In an article that was published in The Journal of Pain (https://doi.org/10.1016/j.jpain.2017.02.277), a study was done on the relation between depression and CRPS and the question was asked, “Could depression be a causative factor in the development of CRPS types I?” The outcome of the study noted the following: “Studies have shown that patients with depression have an increased rate of having chronic pain, including CRPS. These patients also have poorer outcomes of recovery.” So although depression as the “norm” may not cause CRPS, it does seem possible in some cases, not necessarily causing CRPS 1, but heightening the possibility of developing CRPS 1. Although this is an isolated study, it does make sense if you take in consideration that CRPS 1 is a neurological disorder. So if you are prone to develop CRPS 1 at some point in your life, for whatever reason, suffering from depression beforehand may speed up the process of developing CRPS 1. Depression puts your body under pressure, it lowers your natural defences, which heightens your body’s vulnerability.

Imagine having so much pain, knowing that NO medication on this planet can 1. Heal the condition, 2. Take away the pain and 3. Fix what was broken – and having to live like this for the rest of your life, being limited to what you can and cannot do and when you can and cannot do it. Imagine having so much pain that it affects your energy levels, your sleep patterns, your concentration, your social life, your sex life…the list goes on. For most diseases there are medication that can offer some sort of relief, but what you have is not like any other disease and this disease does not play well with medication. As a matter of fact, while no medication helps for the pain, some medicine even worsens the pain. Now imagine having to face every day, with the insomnia, burning, swelling, sweating and everything else that comes along, then you can understand how easily one can fall into a state of depression.

So when someone with CRPS focus on things like meditation, coping skills, desensitizing techniques etc., it is not only to get a handle on the pain, but also to combat depression. CRPS can never be treated in a protected bubble. Treatment will and must at all times be holistic in its essence. CRPS 1 testifies to this, as this is a neurological disease with physical manifestation, but without physical origin. In other words, there is no nerve damage, unlike CRPS 2. Yet it is not a mental disorder, which makes it even more complicated or complex.

Some of the medication that CRPS warriors are put on are medications that they use to treat depression, due to certain properties that these meds have to assist the body to deal with the pain and to lift the spirits. Yes, some of these medications numb the emotions, but it becomes a necessary part of dealing with the pain. Emotional anger and pain fuel each other. So when you are in so much pain, you become angry, and when you become angry, it worsens the pain as you become more aware of the pain and the helplessness of the situation. Meds like Epileptin, Dynasertin, Cymgen etc. sort of breaks this vicious cycle by (among other things) taking the emotions out of the equation. So while phycologists and psychiatrists do not like the idea of your emotions being cut off or blunted out, for someone that struggles with constant pain, it gives them a means of dealing with the pain, without having to worry about the emotional baggage of the disease. Unfortunately, as with everything else, it does have its pros and cons, something that we have talked about before.

The following was posted in the National Library of Medicine (https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8970239/), “There is conflicting evidence for a relationship between psychological factors and psychiatric symptoms and CRPS. When symptoms are present, it is uncertain whether they predispose to, predate, or result from CRPS. A retrospective study of 64 patients with CRPS reported a higher prevalence of mental illness compared to individuals with other chronic pain; the most common conditions were adjustment disorder, depression, alcohol or tobacco abuse, and personality disorder.12 A forensic evaluation of 55 patients with CRPS noted depression in 60 percent, panic attacks in 20 percent, alcohol or other substance abuse in 18 percent, and somatoform disorder symptoms in 42 percent.13 A prospective study of 152 patients with CRPS detected a higher prevalence of post-traumatic stress disorder (PTSD), compared to individuals with other chronic pain and healthy individuals.14 Patients with lower baseline anxiety, fear of pain, and perceived disability have better prognoses, compared to patients with higher levels, because the latter group might minimally use the affected limb, paradoxically leading to increased pain and disability.15 Catastrophic thinking might predispose individuals to CRPS due to a heightened perception of pain.8 Although no studies assessed the prevalence of insomnia, this is likely present due to the strong bidirectional relationship between chronic pain and insomnia.16 Furthermore, sleep disturbance can exacerbate pain (especially the following day) or predispose individuals to develop chronic pain.16”

Thus, with CRPS pain being one of the highest pain diseases, it seem that the possibility of developing depression is much higher than with other diseases. So the verdict is still out on whether or not depression may or may not have a contributing factor on developing CRPS 1. Again shining the spotlight on the reason why this disease is called “Complex Regional Pain Syndrome”. I do think however that what we can take away from these studies is that there definitely is some kind of correlation between CRPS and Depression, although it may not affect everyone, and/or affect everyone in the same way. Living with CRPS definitely make you prone to developing depression, but it also seems that in certain cases, that living with depression may make you prone to developing something like CRPS. So can I really prevent this? It is hard to tell. Can I treat this? Yes, I do think so. Perhaps not the CRPS, but very well the depression. But it is not as simple as just popping a pill unfortunately (although medication is a vital part of treating/preventing depression). It requires a strong foundation and support system (ironically, often one of the first things to go when people are diagnosed with CRPS), a willing and open mind set (that may often be affected by the depression itself), coping skills that not only help you to manage CRPS, but also help you to manage and treat depression…and lots of prayer founded in a solid foundation of Faith. 

One thing is for certain, there will never be right conditions to fight CRPS, whether it is linked with depression or not, or perhaps even other health issues. There will always be the next fight and the next...different, bigger, more challenging. Todays victory just mean that we need to fight so much harder tomorrow. Following the Springboks win over the All Blacks in the 2023 World Cup Final, Siya Kolisi had the following to say, which we could all learn from:

"Coach Rassie [Erasmus] said great things are never achieved in ideal conditions, and this wasn't ideal conditions for us as a group. Playing the home team in their home country was one of the hardest things to do and obviously when we played the last game against England, which was tight, we had to fight and today as well, no different." (Siya Kolisi: Springbok Captain RWC 2023)

RARE Disease ambassador

I have been blessed with the wonderful opportunity to become part of Rare Disease South Africa as a Patient Voices Ambassador for CRPS 1. I have the opportunity to attend the RARE X 2024 Conference in Sandton in February 2024, but unfortunately won’t be able to attend due to the cost of attending the conference, travelling, accommodation etc. Let’s hope that in the future they will path a way for attendees to be able to take part and do presentations via other communication platforms like Zoom, Skype etc., or perhaps they will schedule a conference down in Cape Town. Who knows.

Colour the world orange

November is that time of the year again where the focus falls on creating awareness about CRPS, with the “Colour the World Orange” day falling on the 1^st Monday of November (6 November 2023). People are asked to wear orange in support of people living with CRPS.

What does Colour the world orange day mean?

On Nov. 6, 2023, members of the CRPS/RSD. community will celebrate the 10th-annual Color The World Orange day to spread awareness of this poorly understood pain disorder.

Read more on https://www.colortheworldorange.com to see how you can become involved in creating awareness.

On 25 October 2019 Adrie Barnard wrote the following article for Huizemark, a real estate company in South Africa (https://www.huizemark.com/news/color-the-world-orangetm-day):

“Colour the World OrangeTM Day

The first Monday in November is dedicated to bringing awareness to Complex Regional Pain Syndrome with Colour the World Orange Day which was founded in 2014. Reflex Sympathetic Dystrophy (RSD), describes an array of painful conditions that are characterized by a continuing (spontaneous and/or evoked) regional pain that is seemingly disproportionate in time or degree to the usual course of any known trauma or other lesions. Usually starting in a limb, it manifests as extreme pain, swelling, limited range of motion, and changes to the skin and bones. It may initially affect one limb and then spread throughout the body. The pain of CRPS is continuous but varies in severity.

The sixth-annual Color The World Orange™ Day for CRPS/RSD on 4 November 2019 aims to create awareness of this rare disease and hopefully a better understanding of what it is about. As a real estate company with a passion for the colour orange we will participate in getting the voices heard of those affected.

Visit the CTWO Facebook Page and website for ideas on ways to Colour the World Orange. The easiest way to get involved is to wear orange on this day and post orange pictures (orange food, orange drinks, orange flowers, orange clothes) to social media with the hashtag: #CRPSORANGEDAY™

At the last count, 130 buildings and bridges around the globe will be lit orange on 4 November 2019 for the sixth-annual Color The World Orange™ CRPS/RSD Awareness - from Las Vegas, Pennsylvania, Texas, New York and many more cities in the United States to Perth, Brisbane, Logan, Darwin in Australia; from England to Germany!

Let's do our share in South Africa and colour the World Orange!

Author: Adrie Barnard”

It has been four years since this article was written, and we have yet to experience South Africa coming forward in creating greater awareness for those living with CRPS - unlike other countries where towns and cities cloak themselves in orange in order to help create awareness for CRPS. Let’s hope that we will be able to do the same in our cities in the near future.