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.

CRPS My Journey: Chapter 22 - Autoimmune or not - The Most Painful Disease known to Humans!

Economic hardships

One of the things that they tell you in the briefing before a flight, is that, should there be a drop in cabin pressure, to put on your own mask first, before you assist your children. You do this so that you will be able to assist them, as an unconscious parent, due to a lack of oxygen, will be in no state to assist small children, but will need help themselves. This may sound selfish, but do make a lot of sense. If only life could always be as clear cut as this. Life, unfortunately, is not always black and white. Often there are a lot of grey areas in between, and at times, even those grey areas have different shades of grey.

So while a parent's inherent nature is to protect your children at all cost, it does not always come without a price. A while ago, I was placed in that position due to financial strain. Our medical Aid is depleted, and as you know by now, Medical Aids refuse to see managing pain as reason enough to authorise certain medications to be included as chronic medication. So what do you do when your medical aid is depleted? You start paying out of pocket...until you are not able to do so anymore.

As with all things in life, life happens regardless of whether you are prepared or not - and most often the impact is much worse when you are not. With everything going on in the world right now, many households are struggling to survive, as the rise of inflation, interest rates, fuel prices, basic utilities, food prices, devaluation of currencies etc., is not in line with the increase in salaries. For example, R1000 today, has much less value, than R1000 a year ago, yet interest rates and the cost of living has risen multiple times in the last year. Now for a household to "survive", the assumption is that you need to be able to pay all your bills, put food on the table, fuel in your tank and at least break even - if there is money to put away as savings, then it is a bonus, but in survival mode savings is not a given. The unfortunate truth for many families are that, where they may have been able to go in survival mode a year ago, even with extra income, salary increases and so forth, they are not able to reach that level of survival mode any more, and it feels that they are slowly drowning. 

This also happens with medical aid. I am not going to go into this too much, as we already touched on this in Chapter 20, but I do want to say something about the Chronic Benefit and the effect that being denied this benefit has on patients that need the medication. The money in your savings account, that your premium was able to buy, might be the same, or perhaps even more than a year ago, but as with the rest of the economy, medical costs have increased, leaving you with much less in your pocket. And when you need to use chronic medicine, which the medical aid refuses to pay from the large amount available in your chronic benefit - in certain cases unlimited funds, it depletes your savings and day-to-day benefits even faster. So at the end of the day, we are paying for a benefit, that is in actual fact a loss of income to us, as it only acknowledges 26 chronic diseases - and even then there is no guarentee that these 26 diseases will be fully covered, if at all. Thus, part of your premium goes toward a chronic benefit that is available should you need it, but denied when you need it. So if in a family of 4 you need chronic medication to the value of R2000+ per month, that means R24 000+ per year worth of chronic medicine. That money is in your fund, under the chronic benefit, but the fund denies you the chronic benefit - that you pay for. This forces you to dive into the savings and day-to-day benefits, and eventually, much sooner than you think, out of own pocket.

So whatever portion of your monthly premium is allocated towards the Chronic Benefit is basically going into a bottomless pit when you cannot use it, due to certain terms and conditions. In fact, even when you are able to use this benefit, it does not guarantee that your medication will be covered in full by this benefit. Don't get me wrong, I do understand that they need to prevent people from crying wolf (in other words claiming for certain medications as a result of being dependant on it without needing it), but when you have a fully diagnosed disability or disease that is strictly monitored, I think it does make a difference. That certainly need to count for something. I know of numerous warriors that are fighting this same battle, even to the point where they have approached the Council of Medical Schemes and even the courts. This however, can be a long and treacherous process, without any guarantees. And the outcome is determined by the legal backing of the medical aid, more than how strong of a case you, as an individual, present. I myself have started battling my medical aid in this regard. A month, and still no feedback other than they will come back to me.

A story that I recently came across is that of Lyla McCarthy, a 10-year-old girl that has been diagnosed with CRPS. Although there is evidence that, the sooner treatments begin, the greater the outcome, her mother's medical insurance immediately denied her the treatments. Click on the following link to see Lyla's story:

Lyla's story

Going Cold Turkey

Perhaps you have heard of the term "going cold turkey". This means to "withdraw abruptly and completely by a sudden ending of taking your medication". Basically the same as a drug addict that just suddenly stops the drug abuse. Not a recommended action for any person that needs chronic medication. So what do you do when you are a dad that uses chronic medication, and you have a son that needs his chronic medication, but your funds are depleted and out of pocket is not an option? Well, I have been in that situation a few weeks ago.

This is one of those situations in life where there are grey areas in life, until you decide to make it black and white. Being a dad, the last thing that you want to see is your child suffering. Malan, my oldest, need certain medications daily to help him cope with anxiety and focussing. He is not a difficult child, nor is he one that bounces off the walls. Apart from being an introvert and a perfectionist, he struggles to handle emotions, sensory overload and to operate outside of his own world or bubble. He is a very loving, bright and creative child, but he needs that extra help to get him through life, or rather to help him cope in life.

So with both of us having to be on Chronic medication (in his case schedule 5/6), we are both in the situation where the medical aid refuses to pay our medication out of the chronic benefit, despite myself being diagnosed for two years, and him being on this medication for the last 5-6 years. With him still learning to cope with life, especially where he is entering his teen years now, and myself having learnt so many coping skills in the last two years, the grey area, suddenly became very clear, and the outcome much different than being on a plane with cabin pressure drop. In my mind it was clear. The only way to get through this, was for me to go cold turkey, so that he could continue with his medication, especially with his exams drawing closer.

Perhaps not the best thing for a CRPS warrior to do, but then again I am a father first, and then a CRPS warrior. (My perception) And I reckoned that I would be "okay...ish", seeing that I have some coping skills to fall back on. I may not be the father of the year, but when it comes to my kids and their wellbeing, something like this is not an option or debateable. My children come first. And it is not as if I would drop dead or anything, I would just have to be prepared for increased pain and burning and other possible side effects - how bad could it be...

So how does it feel to go cold turkey? Well much like before you go off the meds, just in way greater over drive. In my case increased irritability and exhaustion, lots more pain and burning, full body sensitivity increase, increased and decreased appetite, nausea, increased disassociated behaviour, heart palpitations, lack of sleep and increased anxiety. My neck flared up more, as my hand flared up, and my hand started flaring up towards my elbow. So how did it affect Buddy? You know like in Hulk, Venom or Jekyll and Mrs Hyde, where the alter ego or alien or personality wants to take over, and break out of that human shell...well more or less like that. Chucky was ready and wanting to break free and take control again, literally shaking to get free.

A year ago, this might have scared me or be problematic for me, but having learnt some coping skills, I had something to fall back on. Yes, I had to work twice as hard on my coping skills, and perhaps it has set back my progress somewhat, but the alternative would be much worse. If I were not able to do this, Chucky would come alive again...and I could not afford that. Just as with the Cymgen, I do not regret going cold turkey. It was not as if I thought it may be a good idea to be reckless, but I did see this as a learning curve that also taught me what I can and cannot handle when I am not on the medication. Remember that for almost two years I have been on medication to slow down the messages to my brain, while my brain did not recognise my hand as part of my body. So in a sense I have forgotten what it was like to be without those meds. And I have read up a lot about possible reactions or side effects for going cold turkey. And if I did not have the skills in place, that I do, I probably would not have done it, but would have had to look for different solutions to the problem. So in no way do I recommend to anyone that going cold turkey is the thing to do. In my personal case, at the time, it was the right thing to do, to rather have my son, that do not have these coping skills yet, get the medication that he need.

But, that is the heart of a father. We do what we need to for our children, so that they could have a better life. I remember a couple of years ago when I was going through a tough break in the business and had to take a job as a janitor at a school. People would come up to me and say, "You were in a Provincial Management position and thereafter owner of a business. Now you are a janitor." And my answer would always be the same, "I am a dad first, and as a dad you do what you need to provide for your family. Status does not put food on the table. Money puts food on the table. What does it help to have status, but I cannot provide for my family?" I would give my left kidney in a heartbeat, should one of my children need it. Going cold turkey, so that my son could have his meds, was not a sacrifice, it was not a heroic gesture. It was purely a dad loving his child so much that he was prepared to put his son's needs in front of his own.

But as I said, it is not always that easy. There are times when you need to make the more difficult, almost selfish, decisions like putting your mask on before you do your kids, so that you are able to take care of them. I remember back in 1985, at eight years old, I wrote the following on the 1st page of my Bible: "It is better to give than to receive, but sometimes you need to be able to receive, so that you are able to give". I think a lot of us struggle with the receiving part as it makes us feel vulnerable and needy. We were brought up and taught that it is better to give than receive, and that "self-love" is a sin - ignoring the part that says "Love your neighbour AS YOURSELF" (Matthew 22:39). How does this have anything to do with what we are talking about? If I have not opened up myself to receive the guidance and instruction from others to build and develop my coping skills, I would not have been able to give myself in this way when my child needed me the most. So although I had to go without my meds, I looked after myself by focussing on my coping skills, while still attending to the need of my child. Hope that make sense.

But yes, don't go cold turkey if you do not have to. CRPS does not like it! Remember, I have the luxury of looking back on the past two years and draw from what I have learned. There are warriors that are in early stages that do not have that luxury yet. Also, there are warriors that have been using certain medication for many years, who definitely should not go cold turkey. Speak to your doctor first, so that you can be educated and prepared for what you will experience.

CRPS and your Immune System

A lot has happened since February this year. I had a cold, landed in hospital with cellulitis, got the flu again, went for the Rhizotomy, got an abscess in my nose cartilage that made me quite sick...and now I have the flu again...And all of this happened without skipping a beat, despite all the vitamin supplements. Battling the flu this time around is different than before. Perhaps it has to do with going without my meds. Yes, I have been back on my meds for a week before I got the flu, and I have become used to Buddy giving warning signals that something is coming, but not like this. It is as if my whole body went in super hypersensitive mode. Buddy flared up with pain shooting up all the way up my arm. My neck flared up so bad, running pain down my shoulders and back, with pain mimicking a pinch sciatic nerve. And these were not even the normal flu symptoms like the fever and body aches and so forth - that was just to seal the deal. It is bad when you try to sleep, but the blocked sinuses and post nasal makes it hard to fall asleep, and then eventually when you fall asleep, you do not really sleep as your hand is in so much pain, and constantly pushing that pain up your arm, so that you cannot get into a comfortable position. And entering our cold and wet winter season does not help either, as the cold is just creating havoc with the pain signals in my hand.

This has led me to start reading up on the effect CRPS has on the immune system. Although CRPS is not an auto-immune disease per se, I do believe that it plays a major role in how your body treats or sees your immune system. If my brain can change its perception of my hand, and how he treats my hand as result thereof, then it definitely can change its perception of my immune system, and how it reacts to that. And if what I have learnt about the relationship between CRPS and a lack of sleep, or CRPS and lack of exercise or CRPS and temperature variations is true, then I can, with a fair amount of certainty, say that there is also a direct link between CRPS and a compromised immune system. So it may not be an auto-immune disease per say, but it does weigh down on one's immune system.

So one of the studies that I have read on this, states the following:

Immune system involvement—The C-fibre nerve cells also communicate with immune cells to help us heal from injury. Excess or prolonged nerve signalling can dysregulate immune cells in the affected limb, as does CRPS-associated poor circulation. You may have elevated local levels of inflammatory chemicals called cytokines that contribute to the redness, swelling, and warmth in the CRPS-affected limb. CRPS is more common in individuals with other inflammatory and autoimmune conditions such as asthma. Some individuals with CRPS may have abnormal antibodies that promote an immune attack on small fibres. 

(National Institute of Neurological Disorders and Stroke https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6125849/)

Another study suggests the following:

Recent observations indicate that CRPS may be an autoimmune condition, in which a person’s own immune system starts to attack healthy tissue. For example, in some autoimmune conditions, plasma cells (found in the blood) start to make large amounts of proteins called antibodies which attack the body. To treat this, blood can be extracted and filtered to reduce the number of antibodies present in the blood, before being returned to the patient. This is known as plasma exchange therapy, and initial data suggests that people with long-standing CRPS experience dramatic pain improvement following this treatment. The researchers will use this knowledge to study mice with a CRPS like condition. This will allow them to identify which nerve cells are responsible for the pain signals, and how CRPS antibodies work with them to cause pain. (https://www.versusarthritis.org/research)

Although this is only two of numerous studies that have been done on CRPS, it does point towards the possibility of CRPS being either classified as an autoimmune disease, or at least having a major effect on your overall immune system. However, a lot of research still need to be done to eventually confirm whether CRPS can be diagnosed as an autoimmune disease or not. The problem? Well it is in the name..."Complex". Because this disease is so complex, so much is still to be discovered and studied. It is a disease that was given a name more than a century ago, but still so little is known and understood about it. As a result, treatments are done on a trial and error system. And it is not that all medical professionals just want to put a plaster on it and send you on your merry way (although you do get some of them that do). It is a simple fact of sometimes they just do not know. And as said before, there are medical professionals that have never before heard of CRPS. A very strange, but true fact - even though the first case of CRPS was diagnosed or given a name 159 years ago. Shocking! The disease is so complex, that what works for one warrior, does not work for another. And it seems that, from these studies, it also has a lot to do with your immune system, your family's medical history, and whatever other medical conditions you struggle with.

One thing that is definitely clear from these studies, is the fact that CRPS, whether autoimmune or not, definitely affects your immune system. Which makes sense to me, when I look at symptoms of SLE for example: always tired, always in pain, struggle to heal from even the normal cold - usually gets it much worse than people that do not have autoimmune disorders - flare-ups in the areas where SLE attacks the body caused by various conditions etc. With CRPS my experience is that it mimics or follows the same patterns as with auto immune disorders. And as I realised the last couple of months, battling CRPS cause you to focus all of your energy on just that, so that the rest of your immune system are exposed for attacks. And unfortunately your body just do not have the strength or energy to spare, causing your body to lower its defences so much so, that when you fall ill, it becomes this vicious cycle where you just cannot build up enough immunity against viruses and bacteria. On another level, if you take in consideration the fact that your brain and your affected body part is not communicating with each other as it should, it can be seen much in the same way as an autoimmune disease, where the body's immune system is attacking its own healthy cells/tissue. With CRPS, much like lupus, SLE, ME and numerous other autoimmune diseases, the body is at war with itself. YET, it is not classified or accepted by medical aids as a chronic auto immune disease. If it looks like a duck, quacks like a duck and swim like a duck, it surely must be a duck. Unfortunately, in the case of CRPS, it is not seen that way.

There is currently a documentary on Netflix, that is an absolute must see called "Taking care of Maya". The true story of Maya Kowalski who fell ill at age 9, was diagnosed with a bad case of CRPS and how she and her family was let down and mistreated by the medical and court systems - much like Lyla's story. It shows the devastating effect it had on her family. It is horrific that there is so many untold stories of warriors that has been neglected and mistreated by the system, much like Maya and Lyla. This is why it is so important to get the message out there and to educate people on CRPS. Almost 160 years, and we are still very much in the dark about CRPS and the effect it has on the human body and on our families. Let's hope it will not take another 160 years for medical professionals, medical aids and the courts to acknowledge and treat CRPS warriors with the necessary urgency, respect and care that we deserve. I am one of the lucky ones to have a medical team that have an understanding of CRPS and that goes far and beyond to help me. Others are not so lucky.

DBT: Distress Tolerance

In the previous chapters we touched on Mindfulness, Emotion Regulation and Interpersonal Effectiveness. I am closing off this part of DBT with Distress Tolerance. What is Distress Tolerance?

Distress tolerance: This involves understanding and managing your emotions in difficult or stressful situations without responding with harmful behaviours.

Thus, let's say I have self-harm or suicidal thoughts due to the pain. Distress tolerance would be to understand where these emotions come from and how to manage them. The goal is to not respond to those emotions by giving in to them, but rather to deflect that emotion by doing something else that is more productive or and in essence the total opposite. It does not mean that you are in denial. You have to acknowledge that emotion in the moment, without giving in to the emotion

Distress tolerance skills help you accept yourself and your current situation. It teaches you various techniques that helps you to cope with intense emotions, with a positive long-term outlook, such as:

• Distraction - Make a list of distracting activities to use when you start to approach emotional crisis.
• Improving the moment - Reconnect with the present moment when thoughts about the past or future are becoming unproductive. Learn how to become accepting of realities without unproductive emotions. (Radical Acceptance)
• Self-soothing - Use your five senses to help reduce out of control emotions.
• Thinking of the pros and cons of not tolerating distress - See what problematic behaviours are costing you and whether it is worth making a change.
• TIPP - Calm emotions with Temperature, Intense exercise, Paced breathing and Progressive muscle relaxation.

The idea is to put your body in charge of your emotions, rather than your body acting on or following your emotions. For example: "Run up and down the stairs. If you're inside, go outside. If you're sitting, get up and walk around. The idea is to distract yourself by allowing your emotions to follow your body."

The reality is that the pain and burning that CRPS brings, tends to take you on an emotional rollercoaster. That is why CRPS is duped the Suicide Disease, as many warriors cannot deal with the intense and constant pain and burning to a point where they see amputation and/or suicide as a last and final resort in dealing with CRPS. The aim of Distress tolerance, and DTP techniques as a whole, is to stop warriors before they get to that point, and to show them that some quality of life can be possible, despite what they are going through.

 

To read more about DTB, you can follow the following links:

https://www.verywellmind.com/dialectical-behavior-therapy-1067402

https://my.clevelandclinic.org/health/treatments/22838-dialectical-behavior-therapy-dbt

https://dialecticalbehaviortherapy.com/

Thank you for taking the journey with me over the last two years. I may be taking a break for a while...unless I have more to share😉. This is definitely not the end of my journey and I will keep you updated on what's happening with the medical aid, as well as my health. The most amazing part of this blog thus far has been to be able to help other warriors by putting into words what so many of them did not know how. Thank you for the opportunity to allowing me to share my journey and my own personal struggles with you. 

I close off this chapter with another video clip that explains what we all experience every day of our lives. Take care!

CRPS: The Most Painful Disease Known to Humans [complex regional pain syndrome]

CRPS My Journey: Chapter 21 - Taming my demons!

Taming my Demons

In the previous chapter I spoke about going off Cymgen. As strange and ironic as it may seem, I think I am at a point now, being off Cymgen, where I am actually starting to miss some of the "lack of emotions and disassociation" - in certain aspects of my life in any way. Do not get me wrong. It feels great to be able to laugh again, although there are still times when it takes a bit of effort to do so. Being able to start connecting with my family again is also amazing. What I do miss though, is being able to feel indifferent whenever I experience a crappy day, whether it is physical or emotional. It feels crap to feel irritated and frustrated, to feel emotional hurt and to just feel emotional about stuff - especially if you have not felt that and dealt with it for the last year and a half. I know it is part of being human and part of life, but I don't know what scares me most...feeling this way about and coping with these emotions, or not trusting myself to become too excited when I feel joy and laughter (not fake or forced laughter, but real, out-of-your-belly laughter). Starting to feel emotions of joy and laughter feels like new unfamiliar territory to me.

There are definitely times when I just want to go back to that disassociated feeling of "it is what it is...facts are facts and emotions...well bleh". I realise that I have gained a feeling of being content and sheltered in my state of not being able to show or feel emotions. It has become a sort of a safe haven, where I could say what I want, and do what I want, and think what I want, and deal with whatever comes my way without having to worry about consequences or feelings, as it did not affect me emotionally. Things like re-evaluating my life, or my life choices, thinking about my career, where I am headed and if I am still where I need to be, has in a sense been both easier, but also more difficult when I was on Cymgen. It was easier in the sense that I could make decisions and evaluate things more clearly without acting from an emotional state, or become emotional about it. On the other hand, it became more difficult in the sense that I did not have the emotional connection to push me to the point of making life altering changes in certain areas of my life.

Intellectual Intelligence vs Emotional Intelligence

So there is definitely something to be said for having both intellect and emotions - as with everything else in life, they balance each other out. Often I experienced that I did not have the courage to make certain life altering decisions, for example putting myself out there for new job opportunities, or furthering my studies, maybe even starting my own business, as I always felt that my hand was holding me back. I was able to intellectually calculate the risk and work out the pros and cons, but was not able to bring myself to get past Buddy, in order to pursue other opportunities. When I thought about Buddy, it was mostly intellectual and calculated (in comparison to when I was diagnosed and in emotional turmoil), which created only more of a lack of trust in my own abilities, despite having achieved what I have over the last 2 years in both my work, as well as the projects that I took on at home. Getting my emotions back is suddenly like pouring fuel on a flame and seeing how it wants to run wild and out of control. So the battle now is to get that balance back, having made the intellectual assessment, I now need the emotional drive force.

Both Intellectual Intelligence and Emotional Intelligence are needed to determine success in life. Psychologists like Daniel Coleman, Robert J. Sternberg and others explains this as follow: "Emotional skills are a better predictor of success in life than intelligence. Though emotions might not be as helpful when doing math problems, they are the compass we use to navigate life. Our emotions set the direction, our intelligence figures out how to get there. When it comes to understanding who we are, what we stand for, and what we want from life, our emotions are what drives us."

In certain instances, my lack of emotions actually helped me to be better at certain stuff, especially in the workplace, while in other instances it created a rift or wall between myself and those that I care about. And although I struggled with not feeling emotions, especially towards the end of my Cymgen treatment, it did help me to become a stronger person. I think that I needed to have that experience in order to build certain character traits and coping mechanisms, in a very fast and short time, which I otherwise might not have been able to do at all. So, you might say that I needed to be able to concentrate on my Intellectual Intelligence, as the sensitivity of my Emotional Intelligence was heightened beyond control.

CRPS is not something easy to deal with, and as I have said before, I was at a point where I had to choose the lesser of two evils. And for a year and a half, it was being on Cymgen rather than dealing with excruciating pain every moment of every single day. This time around, it is finding my way back to my loved ones, even though the pain has doubled or become a bit more consistent again. BUT if I did not go through what I had gone through on the Cymgen, I would not have been able to deal with the extra pain and exhaustion and burning that I am currently experiencing. So in no way do I have any regrets for being on Cymgen. In actual fact, due to what I said in the beginning of this chapter, I need to prevent myself from going back on it again (as I do still have a full month's stock). Yes, I know I had my demons while being on Cymgen, mostly caused by Cymgen, but sometimes I just miss some of those demons...just a little bit. But I think the possibility of having to deal with the initial nausea again, do discourage me somewhat of using what is left of my Cymgen.

Correlation between CRPS, Meds and Weight Gain

So when I started on Cymgen, I weighed in at 114kg (about 251 pounds) and at the time I was actually slowly starting to lose weight, as I wanted to bring my weight down. That was one of my goals, I wanted to come down to at least 100kg (220pounds) so that I could live healthier, feel better about my weight and just be able to manage the hand and neck and everything else much better. The main reason that I was at the doctor that day was so that I could be placed on Cymgen for the pain management. So after almost an hour, as I was leaving the doctor's office, she turned back and said, "Oh by the way, you might gain some weight on this medicine". Ah great...just what I needed to hear. Flip, so as if having a hand that thinks he is his own person and being cut off from the rest of my body was not bad enough, I now had the possibility of gaining more weight, while I am actually trying to lose weight. Why could my weight not feel cut off from my body? Then I would weigh less. Or even Buddy - Chucky at the time? Look I am just saying. He did not want to be part of my body and he made sure that I knew that, so why should I carry his weight with me? Couldn't the fact that he felt disconnected from me, show in me weighing less?

For the first month I actually started losing weight. I remember weighing myself one morning and thought, "Hah, nailed it, take that CRPS and Cymgen...I lost 4kg (almost 9 pounds) and the doctor said I'm going to gain weight". And I started to feel good about myself. Yes, I am losing weight, this is awesome! I am not in the statistics of gaining weight on these meds, Booyay! Take that! (But then again, I was nauseous for the first 4 weeks - 24/7 - which may explain the weight loss)

Yep, I should not have said that. It was as if the meds and the CRPS ganged up on me. "You thought you going to lose weight? Not on our watch bro. We gonna show you. We gonna give it to you!" And they did. They got in there boots and all. No compassion, no remorse...full-on, no-compromised weight gain. I did not eat more than usual; in fact, I ate less at times. I actually started to eat less takeaways and chocolates and stuff, but still my weight climbed...and I became less active due to the pain.

A year and a half later, and I get weighed in for my Rhizotomy (sounds like I was weighing in for a boxing match ha-ha). I look at the nurse and I say, "Nope, that scale is wrong. Let’s weigh again.", So he weighs me again. "Nope, that scale cannot be right, but let’s go with it for now". So I get home later that day and I get on my own scale. What the hell! Freaking 127kg (280 pounds). Are you freaking kidding me? I can't say, "No let’s do it again". This is my own scale, and it confirms what the scale at the hospital told me...TWICE! I lost 4kg (9 pounds), so that I could gain 17kg (37 pounds). Never in my life have I weighed this much.

By now, we know that weight gain can be a side effect of CRPS, as well as Cymgen (Cymbalta/Duloxetine). Thus a double whammy. There are CRPS warriors that actually lose weight from CRPS. I am not one of them.... NOPE. Not even close. Studies have been done on the relation between CRPS and weight gain and one of the outcomes of such a study is what they call "Weight gain - unintentional". This refers to weight that is gained, without you actually trying to gain weight, not necessarily by the disease or syndrome itself, but due to the treatments and medication that you're on, although it can also be due to how the neurotransmitters in the brain is affected. One such study states that Unintentional weight gain was found to be associated with 3,911 drugs and 3,915 conditions. But before we all get excited and start saying, "See I told you it is not my fault, I have a condition", let's not forget that our lifestyle and what we consume and our lack of exercise also plays a major role. Unfortunately for some conditions, like CRPS, the pain is so bad that exercise is nearly impossible. That is a fact. When you suffer from chronic pain you are already tired, and you are not in the mood for physical exercise. And with our rushed life styles nowadays, if you do not get exercise, your body struggle to get rid of excess fat that you take in, or that your body produces by the sugars and stuff that you take in. So unintentional weight gain can also happen due to an increase of food and/or drink intake, without exercising.

I must admit that due to the pain, I fall in that category that find it hard to start exercising. Don't get me wrong, I miss hiking, kloofing, caving, climbing etc. - I just struggle to motivate myself through the pain, knowing that I am even gonna have more pain afterwards. On the other hand, apart from losing or managing my weight, I need to exercise in order to activate my internal drug cabinet, so that my body can manage the pain better. It leaves you in one hell of a catch 22. When I got on that scale for the 3rd time, I just felt "Damn, I miss not having any emotions right now. Why must I start getting some emotions back at the same time that a piece of technology is telling me I am fat and overweight. It’s not fair. It is a conspiracy - don't know between whom, but it must be."

127kg (280pounds). If you type into google: "How heavy is 127kg?", these are what comes up:

It's about nine-tenths as heavy as a Panda Bear. The weight of a Panda Bear is about 150 kilograms

I am freaking Kung Fu Panda...without the kung fu!!! And it gets worse:

It's about one-and-a-half times as heavy as a Kangaroo. The weight of a Kangaroo is about 85 kilograms.

It's about half as heavy as a Pig. The weight of a Pig is about 250 kilograms.

It's about two-and-a-half times as heavy as an Octopus. The weight of an Octopus is about 50 kilograms.

It's about three-tenths as heavy as a Horse. The weight of a Horse is about 420 kilograms.

It's about one-and-three-fourths times as heavy as a Beer Keg. The weight of a Beer Keg is about 72.80 kilograms.

See the last one? I don't really drink beer, so I cannot even say that this is the cause. And why do they explain it at the hand of animals and beer? I know food and alcohol attribute to weight gain, but really?

But all jokes aside, it is concerning that there is a correlation between CRPS and weight gain (or weight loss in some cases), and that it is aided by the actual drugs that are used to treat it. It does mean that if I don't want to be Kung Fu Panda, I need to fight (no pun intended) twice as hard to motivate myself to push my pain barriers, so that I can start exercising - especially when I am feeling weak and sore and exhausted. And as with a number of warriors that I have spoken to over the past year, many of them do not only have CRPS. Many of them have other conditions as well, like myself with my neck. So that automatically makes you over cautious of doing something that may potentially hurt you or worsen your condition(s). I think there is a fine balance between being cautious and pushing your limits, and being totally reckless.

As I have shared my own experiences the past year, I have always tried to establish that one should be responsible in whatever you do to manage CRPS.

1. I need to understand my limitations, and also know that my limits or "barriers" will never be the same as it was before I developed CRPS or the neck issues. If I do not understand that, and understand what my new limitations are, I am not going to be able to push my limits in a responsible manner. That is where it becomes reckless.

2. I need to understand that everything that I am going to do is going to have some consequence. It can be positive in the sense that there is a reduction in the pain or even remission, or it can have no effect at all, or it can be negative and push my sensitivity and pain levels in overdrive. So as I learn more about myself and the condition, I become more aware of what to expect and when to expect it. For example, if I am going to use my hand to do paving work, I know that I am going to have a few days of hell afterwards with major flare-ups.

3. I need to make a mind shift. I need to decide what I am going to do, or what I am prepared to do, and how far and at what pace I am going to do it, and commit to my decision. Set my goals. Realistically, I am not going to try and run a marathon, nor can I expect to do so in two weeks’ time. Realistically I can start by walking 2 km per day at a pace that I can handle, pushing it as I progress. Not only picking up the pace, but perhaps even pushing the distance as that initial 2km become "easier". (I am still going to have some days that I might not be able to accomplish the 2km, but that is my goal for the start. and if I can do that five out of seven days, with two days perhaps only 500m or even rest days - then that is okay, as I need to be responsible, without simply throwing in the towel.

4. I need to work on (a.) motivating myself by setting some goals; and (b.) ask others to motivate me. Best motivation is to get a walking or exercise buddy that do this with you and cheer you on. You do not want a Major Pain character, but you want someone that will motivate you by using your pain, abilities and experience as a guideline, rather than trying to create a boot camp.

5. I need to JUST DO IT! Planning and goal setting and everything we have spoken about is crucial...but it has NO meaning if I do not get out of my comfort zone and take action. I can have all the knowledge and motivation and faith, but if I do not get out of the boat, I will never know if I will actually be able to walk on the water.

Losing weight, as a general rule for most people, is not easy. Even more so for somebody that is suffering from chronic pain or someone who is on medication that causes you to gain weight - or both. Take my wife for example. She has been living with SLE (lupus) for the past 22 years, and because of the type of pain and weakness that SLE creates, it has been a struggle for her to exercise or lose weight. So the struggle is real. But it might not be impossible. Interestingly enough I have found that my reason for trying to lose weight, let’s say 3 years ago, is vastly different than what my reason(s) is now. Three years ago it might have been to get a beach body or look better, perhaps feel better about myself. Now, it is to live healthier, to be able to handle my CRPS and neck issues better and just to take unnecessary strain off my healing process - and let's not forget, to do stuff with my kids. Re-evaluating my reason(s) for losing weight, suddenly makes it more accessible, bringing it closer into range, as it starts to fit into my goals that I have set for myself in coping with CRPS.

I know that there are many studies that have been done on the relation between weight gain and your blood group for example. I do not want to get into that, as that is not what this chapter is about. I know that studies were also done on the relation between weight gain and the Covid lockdown. Interestingly enough, the results are not that surprising as the factors that they found to be causing weight gain during lockdown was:

Lack of sleep, decreased physical activity, snacking after dinner, eating in response to stress, and eating because of the appearance and smell of food are behaviours linked to weight gain during self-quarantine.

For CRPS warriors, these are normal everyday life. Lack of sleep, decreased physical activity, eating disorders...and as studies have also shown over the years something like lack of sleep have a number of negative consequences on the body and your health in general. One of the things that studies on sleep deprivation show is weight gain, increased pain levels, increased stress levels, mood swings and increased irritability, depression to name but a few. All symptoms or issues that CRPS warriors struggle with, or rather have the possibility of struggling with. Sleep was one of the first things that was addressed right at the start of my treatments, as you will see in the earlier chapters. I couldn't sleep because of the pain, but I needed to sleep to be able to manage the pain. A "simple" thing. If you are tired due to a lack of sleep, you have less ability to fight or manage the pain, because you just are too tired and not in the mood to fight. What I have found is that when this happens, I am irritated as hell and do not want to deal with people. And yes, when I am that tired, I do get the munchies. I want to snack, either to keep myself awake, or because I feel hungry and it feels like nothing fills that hunger. Which again increases my risk of gaining weight. The point that I am trying to make, is that it becomes a vicious cycle. And NO-ONE can break that cycle other than you or me that is caught within that cycle.

DBT: Emotion Regulation

The next step I want talk about in DBT is Emotion Regulation. Last time I jumped from 1 to 4, and now I am working my way up, but bear with me. I do have a reason why I am doing it this way.

Definition - learning to make your emotions work for you. Learn how to recognize when an emotion is unproductive and change it into a more productive emotion.

Ahhh...now you understand why I am touching on this in this chapter and not on Distress tolerance, as this is the one thing that I am dealing with at the moment. As you have seen in the first part of this chapter, I am at a point where I have to start dealing with my emotions, like a baby that is learning to eat, going from milk, to soft food, to more solid food. I am at the point where, as said before, I am dealing with trying to cope with a number of emotions that I have not experienced for 2 years, which is mostly crap at the moment, but necessary. I do not want to feel some of those emotions...but I need to be able to feel them and work through them. (And people around me obviously feels much stronger about this than I do - I would rather deal with that demon that takes away that crappy feeling, but it is what it is - it need to be done).

Emotional Regulation therefor plays a big role in the current phase of where I find myself. Yes, it has played an enormous role in the beginning, trying to get a hold on dealing with CRPS, but now I am right back at that place, just in a different phase or scenario. Two years ago I had to start dealing with the anger and false sense of guilt, and all those bad emotions that was caused by this disease that has sprung on me, trying to cope with this immense pain. Cymgen helped to cut that part off so that I could focus on gaining and growing my coping skills. Now, although still having to deal with the pain, I have to deal with other more subtle and more painful emotions that I have not been used to for two years. Feelings of being pushed aside, fear, stress, heartache - all those things that I suppose makes you human.

I have learned to recognise the expected emotions and whether they are productive or unproductive, although I could not experience them at the time. So, it was easier to deal with the expected emotion, as I have not been able to feel it and act upon it emotionally. Now that I am starting to experience them again, I am learning to make them work for me, by changing the unproductive emotions - like feeling crap after a bad experience - into more productive emotions that can motivate me and become my drive force to change my situation or do something about it, rather than just sulking about it. Emotions like Anger, frustration, depression and anxiety are strong emotions that can mean the difference between fighting CRPS and just throwing in the towel. As Hesti said the other day, whereas other people that struggles with CRPS, like I do, may have arrived at a point where they filed for disability, I have been able to push my barriers and learn to live in a symbiotic relationship with my hand. The idea thus of Emotion Regulation is to learn how to manage your feelings, so that it decreases your vulnerability to any form of painful emotions caused by situations that are entirely out of your control. CRPS is out of my control. I did not ask for it, I did nothing to deserve it, yet I developed it. This caused me to become angry, anxious and frustrated. I had to learn to manage these emotions, but because my body's sensitivity was so heightened, I struggled with this. Cymgen, without anyone knowing that it would have this effect on me, and without it being the intended purpose, helped me to deal with this by taking away my emotions for the time that I needed to be able to get skills in place that would eventually help me to better understand my condition, and enable me to turn my unproductive emotions into productive emotions, once my emotions started returning. My body's sensitivity is still very high, and crappy emotions are still......well crap. But I am able to deal with this much better than what I were able to do two years ago.

In Chapter 9 we spoke about radical acceptance and throughout the chapters we touched on mindfulness, which all forms part of Emotion Regulation. So I am not going to go into more detail on this, but I will place a link in the next chapter where you can go to, to learn more about DBT and the various phases.

Closing off this chapter, my kids started watching a program on Netflix called "Magic for humans". I am adding a clip here from the 3rd season, the 1st episode. It is a very interesting experiment that this guy does, which gives one a bit of insight into CRPS and what happens in the brain when you have CRPS. This is the basis for treating CRPS, as you will see in Chapter 3 where I talk about Mirror Therapy. Hopefully this will give you somewhat of an insight in what happens when you have CRPS. Enjoy.