CRPS My Journey: Chapter 24 - Pacing & Growing!

Someone reminded me not too long ago of the 1999 movie “Idle Hands”, where the protagonist is a guy named Anton. In the movie his right hand goes on a killing spree while he is asleep. He eventually realises that his hand is possessed, and after killing his friends (who becomes Zombies), as well as a couple of police officers, he decides to cut off his hand…which turns out to be a bad idea, as his hand is still possessed and now continues its killing spree while being detached from Anton.

Thinking back on this film, it does not seem too far off from what I have often experienced with my right hand. Although not possessed (and fortunately not having killed anyone yet), this film gives somewhat of an insight to what happens when your hand gets a personality and a life of its own (although this was not the point of the movie).

The power of Intimate Connections

So the other night, we were watching tv, when out of the blue Teresa said, ”I am glad that Chucky still listens to me”. Teresa could see that I was totally perplexed, so she explained. The evening before, after the kids went to bed, we were on the couch watching tv, when I drifted off to sleep. I haven’t slept much in the last couple of weeks as I was struggling with the flu, which worsened my pain as well, so as the exhaustion became too much, I was out cold, even if it was just for a few hours. And then it happened. 

While I was asleep, my hand (and only my hand) started trembling and shaking, and a weird bulge or bump apparently appeared on top of my hand. So Teresa put her hand on Buddy to comfort him...and he settled down. As for myself, I was not aware of any of this, so when she mentioned this the next evening, you can understand why I seemed so perplexed. Usually when Buddy becomes irritated or shaking, it has to do with the pain and irritation. And when he becomes like this, he cannot bare touching anything, nor does he want or like to be touched in that state. His sensitivity goes in overdrive. However, that evening, without me knowing what was happening, he started acting up and then allowed Teresa to calm him down. Almost like a feral cat that got his foot stuck in a snare, that allows someone to help him.

So yes, I know, and have known and seen for the last two years, what and how Buddy can behave when he goes in Chucky-mode. This, however, was a first for me - to experience how, even when I am asleep, he is living his own life – separate from me – and responding to someone else - independent from me. Much like in the movie “Idle hands”. It reminded me again of the cruelty of CRPS, but also of the strength and deliverance of unique bonds in relationships. How - much in the same way that a loved one can talk the person, with whom they connect, off a ledge - that bond can create security and acceptance and bring calmness to even just part of the body of the person that they connect with.

Yes, I know it probably have to do with your subconscious mind and the power that it holds, but isn’t it amazing in any way how the body reacts in various situations. If I were awake while this happened, I would have never been able to allow her to touch my hand in that state - guaranteed. What is also interesting is that the bulge on my hand was gone by the time I woke up. I would not even have known about it, or about what had happened, was it not for Teresa telling me and asking to see my hand. Your subconscious mind is a powerful force to be reckoned with. It makes up around 95% of your brain power and handles everything your body needs to function properly, from eating and breathing to digesting and making memories. It's a very strange being when you think about it, and therefore not farfetched at all to refer to a body part as having its own personality.

Each and every day is a learning curve. Some days you discover things about yourself that you either never knew, or have forgotten over the years. At other times you discover weird and interesting things that you wouldn’t have known if somebody did not point it out to you – like with what happened above.

Keep on learning...Keep on growing

In the past two years I have learned more about a disease (that I never knew existed), and the workings of the human mind and body, than many people learn in a lifetime. And yet, I still have so much to learn and discover.

Henry Ford once said: “Anyone who stops learning is old, whether at twenty or eighty. Anyone who keeps learning stays young. The greatest thing in life is to keep your mind young.”

I was talking to a good friend the other day, and we were talking about friends that we went to school with, that we have seen sporadically over the past couple of months. What was interesting, and at times very sad, was how they changed over the years. We all had our share of hard times, but what is noticeable, is how some of them looked as if they were 10-15 years older than us, and yet we are the same age. You could see the hardship and struggles on their faces, in some cases the hopelessness and procrastination – as if they have stopped growing and learning. Then my friend reaffirmed something that I have spoken about a lot. The way that you look at your problems and the attitude that you approach it with, makes a big difference. Unfortunately, not everyone has the support system in place to help them achieve greatness and keep on learning…but we all had equal potential according to what we were given and what we were able to handle. Some even reached greater heights than what people expected of them, just because of their mind-set and how they approached life…especially through the hard times.

Never stop learning. Never stop discovering. Never stop allowing yourself to be amazed…even in the worst of times

Spoon Theory

In the previous chapter I referred to Spoon Therapy, or rather the Spoon Theory. So let’s have a look at what it is, and how it can be helpful to those who suffer from chronic pain and/or fatigue.

Definition of Spoon Therapy:

Dr Tilahun from Cleveland Clinic defines it as follow: “The spoon theory is a self-pacing strategy that emphasizes the need for chronic pain patients to work to a certain quota. Patients have to be economical in how they spread the use of their spoons in their daily activity.” 

In short, the spoon theory sets out to help you to pace yourself responsibly when using your strength and energy. It is not a wonder cure, and although it does have its limitations, it enables you to schedule your day in a way that you are able to manage your daily tasks. It is a way for people who live with chronic pain to express how health issues impact their ability to complete everyday tasks and activities.

Origin

In 2003, writer Christine Miserandino, tried to explain to a friend how having lupus impacts her ability to perform daily tasks. As a way to demonstrate what she experiences on a daily basis, and how it differs from someone that do not have chronic pain, she created an analogy about having a limited number of daily “spoons.” These spoons, she explained, refers to the different tasks that she has to do during the day, and the amount of energy that it takes to do each of those tasks (measured by spoons). She explained it as follow. 

She gave 12 spoons to her friend, and asked her to describe an average day. As her friend listed activities, Miserandino took spoons from her. She explained that the spoons represented the amount of energy that each activity required. The more spoons her friend used, the more the friend had to ration those that she had left. By 7PM, her friend was out of spoons. The reality was that she did not manage to do everything that she set out to do for the day, had she had unlimited spoons. Miserandino went on to explain that she had to make such choices and sacrifices every single day because of her chronic illness. This analogy helped her friend to better understand how it felt to live with something like Lupus.

The idea behind the Spoon Theory:

The Spoon Theory became a way to illustrate the energy limitations that can result from living with a chronic illness. By using spoons to measure the amount of energy you have for the day, it helps you to visualize your total daily energy. It helps you to pace yourself and prioritise tasks and strategies.

One of the major issues with Chronic pain, is the chronic fatigue that comes with it. You can wake up the one morning full of energy and feeling capable of moving mountains, while the next morning you may wake up totally exhausted, or with brain fog or a pain flare-up that makes even the smallest of tasks difficult, while demanding extreme effort.

The idea is to determine how many spoons of energy every task requires so that you can visualize how many spoons of energy you may need to get through your day.

How does it work?

Let’s say your typical day looks as follow: You get up, brush your teeth, shower, get dressed, make and eat breakfast, go to work, make and eat lunch, more work, go home and make and eat supper, shower, watch some tv, go to bed.

For each of those tasks you will assign a number of spoons according to the amount of energy that you need to complete that task. Obviously there will also be other tasks that need to be slotted in throughout your day like going to the doctor or doing house work, helping kids with their homework or being intimate with your spouse, or visit friends or family etc. To all of these things you also assign an amount of spoons according to the amount of energy it takes.

You can break it down even further by assigning spoons to things like communication, reading, writing, drawing, hiking, swimming, etc. as all of these things uses energy. So for example you might assign it as follow:

Taking medications:                                         one spoon

Getting dressed:                                               one spoon

Watching TV:                                                   one spoon

Taking a shower:                                              two spoons

Reading or studying:                                        two spoons

Doing light housework:                                    three spoons

Making and eating a meal:                                three spoons

Working:                                                            four spoons

Intimacy:                                                            three spoons

Communication:                                                 two spoons

Hiking:                                                                five spoons

Visiting a friend or relative:                                four spoons

Going to a healthcare provider appointment:     four spoons

And so on…

The idea is that by determining how many spoons of energy you have for the day, you can plan and prioritize your day accordingly, so that you do not run out of energy. In theory this implies that should you have 20 spoons for the day, but only need 10 spoons for the day, that you can transfer the remaining 10 spoons to the next day – which in practise is not so simple however. What is more likely, is that you can use the remaining spoons of energy to rest and recover, or to attend to other tasks that you might not have planned for, but now have some energy to do...today.

The Spoon Theory is not a fallible theory, as we will look at in a minute, but it is a mental aid that do work for some people. It also creates a platform where it can assist your communication towards others, for instance, once people understand the theory behind spoon therapy, you can describe your current state as follow (without having to explain yourself):

“I don’t have enough spoons to do that today.”

“I pushed too hard and ran out of spoons.”

“I have this already scheduled. So I won’t have enough spoons to do that.”

“Can you help me with this? It will save me some spoons so that I can enjoy doing that with you more.”

“I have to cancel our plans for today. I used too many spoons yesterday, so I don't have enough for today.”

Although the Spoon Theory can have a major influence on mental issues like stress, depression, anxiety and autism, the same can be said from the other way around. Stress, depression, anxiety and autism can have a major effect on the Spoon Theory. For instance:

Stress: A task performed under stressful circumstances may require more spoons than the same task completed in a calm and supportive environment.

Depression: Someone with major depression may wake feeling so weighed down that they don’t have enough spoons to shower or eat.

Anxiety: A racing heart rate or difficulty breathing may quickly exhaust someone’s body and leave them with few spoons.

Autism: Navigating the sensory overload of a grocery store or busy school setting may require the majority of a person’s spoons for that day.

Are there any shortcomings to spoon theory?

Yes, as said in the beginning, it is not without its shortcomings.

1. Spoon theory assumes that every task requires a set amount of spoons. The reality is that on a low-pain day you may need one spoon to make breakfast, but on a high-pain day you might need three spoons to do the same task. I have experienced this often with something as simple as mixing milk into porridge. The one day it is easier and takes a few seconds, the next day the pain becomes too much and that same action takes minutes to complete while I often have to stop in order to manage the pain. This may make it challenging to visualize future task prioritization.
2. Spoon theory doesn't take into account unforeseen factors that deplete energy. On a low-pain day you may wake up full of energy. You get in your car a drive off to work and load shedding hits, causing you to sit in a traffic jam, or weather suddenly change from very cold weather to very hot or windy weather, or unforeseen and unexpected things happen like a death in the family, your car breaking down, a rude client screaming at you. And suddenly that bounds of energy are wiped out. Pain and fatigue may flare up with no identifiable cause too. One of the things that I have found that depletes my energy much faster is cold weather, or just walking past a freezer even, as it elevates my pain level, which immediately draws more energy from the rest of my body in order to try and combat the pain and protect my hand. This lack of control contradicts the idea that spoon rationing is a reliable form of self-pacing.
3. Spoon theory mathematics imply that you can save spoons for future events. As mentioned before, you may have 20 spoons for the day, and only use 10 spoons. This may imply that you can transfer the remaining 10 spoons to the next day. Unfortunately, Chronic health conditions are not always predictable, which means that you might not even have 10 spoons tomorrow, let alone the 10 extra spoons from today that you in theory want to transfer. I might have 10 spoons left, but then I bump or cut my hand by accident and immediately my energy is drained. Which in reality means (from experience) that tomorrow I will already start with a loss or a shortage in spoons.

So how do you manage your daily spoons?

“Studies show that with the right interventions chronic pain patients can improve their tolerance of the pain and restore their normal function,” Dr. Tilahun.

The following is applicable to all chronic illnesses. In certain cases, like CRPS, the sooner one start with this, the better the outcome. This does not provide a cure, but enables you to manage your pain better, thus managing your spoons better:

1. Physical therapy: Seeing a physical therapist for pain management can teach you exercises and other strategies to strengthen your body and lessen your pain.
2. Medication: Your doctor may prescribe medications to treat your chronic pain, as well as to address the depression and anxiety that often accompany it.
3. Psychotherapy: Research shows that therapy can help people with chronic pain learn to better cope with the ways their condition impacts their life.
4. Mindfulness meditation. This kind of psychological intervention can help patients develop an accepting attitude toward their pain
5. Complementary medicine: Combining conventional treatment with alternative therapies like acupuncture, massage and chiropractic care may alleviate some of your pain.
6. Pain management programs: These programs can help you learn coping mechanisms by incorporating many of the strategies listed above.

“Based on the cause and nature of your pain, a comprehensive interdisciplinary approach — one that combines medication, physical therapy and counselling — can help most patients to rehabilitate and restore their function. With the right interventions and therapies, their quality of life can be restored despite the pain.” (taken from an article published by the Cleveland Clinic)

When I look at these 6 points, I can see the members of my medical team in each of these areas, focussing on their own specialised fields, helping me to deal with CRPS. 

The Spoon Theory might not be for everyone, but it might be just what some need. It is not a cure, nor is it meant to be. It is a way for people that suffer from chronic illnesses to try and understand and manage their pain and fatigue. Doing something is always better than doing nothing. However, balance, and an open mind, is key.

CRPS My Journey: Chapter 23 - From Achilles Heel to Vitamin Supplements: Building strength!

Okay, so my break was a bit shorter than I anticipated, but that is the thing. As soon as I think this is going to be my last chapter, people contact me to tell me how much a certain chapter meant to them, and then asks me to continue as it gives a voice not only to myself, but also to them, as they are going through the same struggles as myself. Suddenly they do not feel alone. What they have struggled to express or get other people to understand - suddenly they found someone that knows and understands something about what they experience. I am so blessed to be able to use what is happening to me, to encourage others that are going through the same struggles, and to advocate CRPS to those who do not know and do not understand. Thank you to all my readers for supporting me in this way, and giving me the strength and the platform to be a voice for CRPS warriors.

Achilles heel

The metaphor Achilles heel often refer to "a weakness in spite of overall strength, which can lead to downfall". According to Greek mythology, Achilles was a demi-god who was instrumental in the Trojan war. Because of his enormous strength and invulnerability, he became the greatest warrior of his time. However, he had one weak point - his heel. The story goes that his mother held him by his heel when he was still an infant and dipped him in the river Styx, so that he would become immortal. And as the story goes he became indestructible...except for his heel, that would eventually become his downfall, as this was the only part of his body that was not wetted by the water. During the Trojan war he was struck by an arrow (possibly a poisoned arrow) from the Trojan Prince Paris in his heel, and he was killed. The only vulnerable spot in his body, became his greatest downfall.

The story or legend of Achilles made me think about life, and how we approach life itself. In 2 Corinthians 12:7 Paul talks about a "thorn in his flesh", his Achilles heel if you will. Although Biblical scholars vary in their interpretation of what exactly this "thorn" was, it is not so much the thorn that I want to focus on, as it is the fact that he had a weakness or challenge that made him look at life from a different point of view. Paul acknowledged his weakness or challenge, but did not let it define him or prevent him from living life to the fullest. He used his "thorn" to motivate and challenge him to be better, to live life to the fullest. In the same way Achilles acknowledged his weakness, but again did not let his weakness define or stop him from becoming the greatest warrior, even though he knew that it may be his ultimate downfall.

In the last month I have lost a number of people in my life, within days of each other. Two of these people that I have lost were friends. They were those people that always saw the glass as overflowing, even though it was only half full, or at times even empty. It seemed that nothing could faze them or get them down. Ironically both of these friends died due to complications of blood clots that they had. It came suddenly, they got treatment, got better and then suddenly without warning were taken from this life. Looking at them and the impact that they made in the lives of the people around them, made me realise that we all have our Achilles heel, that vulnerability that have the potential to be fatal - but how we live in spite of that vulnerability and how we approach life and look at life in spite of that vulnerability, is what makes the difference. 

Achilles heel...we all have them. We can either acknowledge and embrace it and let it motivate us to greatness, or we can give in to it, and let it destroy us along with everything and everyone that we love and live for. CRPS is my Achilles heel, for others it may be heart problems, or blood clots, cancer or auto immune disease. The thorn or Achilles heel should not be the focus point...how we react to it and how we use it to motivate us to live life to the fullest is what really matter. 

This one friend of mine, had a heart attack a couple of weeks ago when a blood clot shot through his heart. The doctors told him he was lucky. I spoke to him a week after, and he was full of life and motivation. He spoke as if he was the healthiest person in the world. If I did not know that he was in hospital, I would not even have guessed it. He had the biggest heart. He had this presence around him when he entered the room. We still made plans for a chat over coffee. He was so sure that he would be back at work the next Monday and planned on showing me some new tools and machines that he bought and wanted to talk about my blog, go to the golf range etc. A week later, he passed away unexpectedly in hospital after suffering a massive heart attack. How ironic. His big heart, became his Achilles heel...and even then he did not let it steal life from him. Out of his hospital bed, he was still helping and caring for others. He has achieved greatness in spite of his Achilles heel. Roelof we salute you!

I often said this, CRPS does not define me. It may be my Achilles heel, but in order for me to be able to move forward, I had to embrace it. That does not mean that I am oblivious to the horrific outcomes of this disease, nor does it mean that I am ignorant of the fact that I have a disability. A while ago I was experiencing some remission. The last couple of weeks though, have been hell. We are mid in our winter season. The snow on the mountaintops causes the weather to drop to 2 and 3 degrees Celsius where we are. Buddy and cold weather do not mix. I think this winter has had a far greater effect on my hand, than last year's winter. Especially with the pain that is going beyond my wrist. It is really tiring. To top it off I am struggling a bit with a head cold. So every time I sneeze or cough, it feels like a painful electricity jolt shooting from my neck down the arm and into my hand, causing excruciating pain an numbness in my hand. So it is either one of my discs that's not a happy chap...or I am turning into the Flash with electricity shooting through my veins. Pain is exhausting. However, I will not allow it to consume me. 

Even though I faced many challenges after being diagnosed, I still did not trust my hand enough for other specific challenges. More than that, I used to use my hand (and CRPS) as an excuse not to take certain risks in certain areas of my life. I was reminded a while ago of Peter that had to take the leap of faith and get out of the boat so that he could walk on water (Matthew 14:22-33). While the wind was blowing around him and the waves were crashing against the boat, he was able to walk on the water as long as he kept his eyes on Jesus - that was all he had to do. The moment that he took his eyes off Jesus and faced them towards his surroundings and problems that threatened his faith, he started to sink. 

In much the same way, my hand has been like these waves crashing against the boat. I wouldn't take this risk, because my eyes were on my hand. Buddy became an excuse not to take certain risks for fear that Chucky may resurface and prevent me from taking on these new challenges (even though I have taken much more and much bigger risks in the last two years). [For those that knows the DC comics, it is much like killer Frost in the Flash Series - you can tell what we as a family is watching at the moment] So an opportunity came along where I had the chance to take said risk...and I did it. Yes I was hesitant. Yes my faith was shaken as I looked at the waves. But I went ahead and did it any way. Took my eyes off  my surroundings and focused it on the goal before me. And although the outcome did not go in my favour, I am glad that I took the risk. I am certainly at a much greater space in my life, where I will certainly take more of these types of risks in the future. And who know what my future might hold. Perhaps it may be the beginning of a new chapter in my life.

After many years of painful TB, where he eventually lost his leg to the disease, the Poet William Ernest Henley (1849-1903) wrote the well known saying: 'I am the master of my fate: I am the captain of my soul.' He came to understand that the way that he saw life and prepared himself to face its realities, determined his future - not his disability, regardless of how painful and debilitating it was. He understood that you do not shy away from the waves crashing against the boat, but that you face them head on, and use them as a motivator in your life to reach the goals that you have set for yourself.

Although some are lucky enough, not everyone has the opportunity to say their good byes before they die. Live so that others may remember you, not only when you are gone, but now - in the here and now - as a living legend! Any person who can stand up to fight another day, despite the pain and exhaustion, and show the world that their lives still have great value, that they still matter, and that they make the world a better place because they are in it, is a true legend.

Reinventing myself!

I have tried over the last year to change a lot of things to make it easier on my hand, without taking away the challenges or the abilities. For example, I have started to invest in lighter tools. I have found that with certain tools, for example a hammer or a drill, it has become more and more painful to use these tools, especially over an extended time, as they have become too heavy for my hand to manage. Often it is not only the weight or size of the tool, but also (in the case of power tools), the power and vibration of the tools. For example, the Jigsaw. Apart from the speed setting on the orbital jigsaw, the unit powers the blade to move, not only up and down, but in an elliptical cycle. This means it moves the blade slightly forward on the upstroke and slightly backward on the down stroke. All of this causes greater strain on your hand as you need to have a stronger grip and concentration, than a handsaw for instance. You also have to account for possible kickback, which can cause stress or trauma on your hand. Combine that with a hand that has its own personality and you have a recipe for disaster.

The same with the drills. I have found a lighter and smaller cordless drill than the one I always had, that is much easier on my hand, and which in actual fact has got more power than the older drill. Naturally there are certain tools like a grinder for example, that you unfortunately cannot really get an alternative to, due to the grinding force that it creates, but fortunately these tools aren't used that often. In certain cases, I am able to use my Dremel tool for certain tasks that I otherwise might have needed to use these tools. 

I also had to rethink the use of hand tools. So instead of using the hammer that I always used, I have found different hammers for different applications, with much less weight, that can do the same work (if not better) than the older tools. Smaller, more lightweight tools, enable me to do more. It still put strain on my hand, and it still challenges my hand, causing my hand to become tired, sore, burning with painful days afterwards, but it enables me to do things that I otherwise would not have been able to. 

All these tools allow me to do what I used to do before my operation, and more, while creating less stress on my hand (not NO stress, but LESS stress). Yes, perhaps it takes me longer to finish a project, but I am doing it.

But I also had to rethink and reinvent the way I used to do things. So for example I started to build myself a proper but simple workbench, with a bench vice, which allowed me to be able to start doing projects again. The next evolutionary event in reinventing the way I do things, was to build myself a proper table saw - as I never had one, and always had to work with the jig saw or the circular saw and a made shift table. But I did not want to just have a table saw, I wanted it to be multifunctional. So I looked for a design where you can fit different tools to it. So for example, the same table saw can be converted into a band saw, or a router table, or to convert a planer into a jointer and so forth. This is still a work in progress and I am using mostly recycled wood, so it may not look perfect, but I need it to do the job well, in a way that I can utilise it, rather than winning a pageant contest. I had to find ways to do projects in a way that I can protect my hand, while challenging him. This also meant learning to work with gloves, the right gloves - gloves that are strong enough to handle slipping blades - not only to protect Buddy, but also to protect my left hand against Buddy. This was quite an adjustment, but I have found a pair of gloves that does not leave a mark when you take a sharp utility knife to it. It does take away a bit of the feeling and sensitivity that you would have when working bare hands, but that is a price I am willing to pay if it means that I am protecting my hands.

I think the most frustrating about all of this, is the amount of time that it takes to make these changes and built these aids, as 1. it took strain on my hand while doing so, and 2. it took time away that I would have wanted to spend on doing other projects. However, looking at the way forward and my abilities to be able to do those other projects, it is not a waste of time. It is investing in my hand's readjustment. I use the word readjustment, as we know that there is no cure for CRPS, which means that using the word recovery is not really truthful to CRPS and can be somewhat misleading. I don't think there is quite a word that can really describe this, but I feel Readjustment do get somewhat closer, as (in order to experience remission) I need to adjust the way I use my hand, how I use my hand and how and where I challenge it. 

This has become a focus point for me over the last couple of months, as I have started experiencing that the CRPS might be spreading. Small things that I have noticed over the last couple of months, that have become full blown signs in the last couple of weeks since we are in winter. For instance, my wrist up to the middle of my forearm is extremely sensitive to touch. Even my medical aid band or my sleeve of my jacket, makes it feel like all skin is torn off and hot coals are thrown on the bare flesh. as I am typing here, my hand, wrist and forearm is in excruciating pain.

At last I have tried the hand warmer (Little Hotties hand warmers), and although the heat helped, I could not stand the sensory irritation that it created. These hand warmers keep warm for 10 hours, after which they are thrown away, but the bag that it is in, and especially the corners irritated the sensation part of my hand so much, that I had to take them out after a while. I have tried them inside my compression glove on top of my hand, but the heat did not go through to the inside of my hand. Then I tried them on my hand palm inside the compression glove, and it felt like sharp razor blades or thin fishing line cutting through flesh and bone. Perhaps a USB heated glove may help, but I am still contemplating whether spending that amount of money on a glove - that may or may not help - just to test it, is worth it. If it works, great. But if it does not work, then I have spent money that could have gone towards medication for example. So it is a catch 22, but let’s see what lies ahead. For now, I still need to find a supplier in South Africa that do supply those gloves, as most of the ones that I have seen is overseas. And then again, it need to be a comfortable material that will not irritate the CRPS.

What about the Rhisotomy? Does not seem to have worked...again. Neck pain is still as bad as ever, arms are getting numb, and whether it had any effect on rewiring my brain...well only time will tell. For now, it does not seem that way. But I still have the coping skills that I have built up over the past two years to get me through every day. 

 

We recently took our kids ice skating. Buddy really did not like the cold. I tried to teach both Liam and Malan to skate. Malan eventually came right, but I think Liam enjoyed the falling on the ice much more than trying to skate. Somehow he mastered going backwards and going in circles, but he just could not learn to skate forward - too wild and hasty. But we had great fun. That night I did not have much sleep, as both Buddy and my neck flared up really bad - but it was "worth" it. There was a point however that both my hands were on fire. I do not necessarily think that my CRPS has spread to my left hand. Perhaps my left hand had a form of "Couvade syndrome" - just instead of mimicking labour pains, he was mimicking the burning in my right hand. But for now I am not too concerned about that. (we took them ice skating a second time, and this time Liam actually learned to skate)  

Meanwhile, I have started to take on my medical aid. I have gathered reports from most of my medical team (therapists included), as well as all my test results, which I forwarded to them, stating my case, in the hopes that they might cover my medicine, or at least part of it, under the chronic benefit. Most of my medical team is on board with this and willing to help. Might be a long shot, but I am prepared to take it as far as I need to. If I succeed, this may be a win for all CRPS warriors that find themselves in the same situation as myself. I will keep you updated.

CRPS and vitamin Supplements

The question was asked recently on one of the groups whether vitamin supplements have any influence or effect on either preventing and/or rehabilitating CRPS. 

On 2 July 2021 an article was published online in The National Library of Medicine with the following outcome:

"A total of 2026 patients of whom 632 males and 1394 female were collected in our systematic review. During the entire follow-up period, the occurrence of CRPS-I was evaluated in 1939 patients. Five of the six analysed studies were favouring prophylactic use of the 500-1000 mg daily dose of VC for 45-50 days after orthopaedic or trauma care for prevention of CRPS-I. Only one study found no benefit in VC supplementation compared with placebo to prevent CRPS-I. Analysis of the literature suggests that a daily 500-1000 mg VC supplementation may reduce the onset of CRPS-I in trauma of upper/lower extremities and in orthopaedic surgery."

This was only one study, and the result was that Vit C in high dosages might help to prevent CRPS-I after surgery...in some cases.

There is a website called https://complextruths.org/ which is aimed at CRPS warriors and helping them to live a better quality of life. I do not think that the aim of this website is to promote any "cure" for CRPS, but what they are doing is to look at alternative and natural ways to bring relief to CRPS warriors, without taking away from medicine and coping skills. One of the things that they look at is "Dietary Supplements for CRPS"

It is an interesting read, so I will rather post the whole article here as is, than try and summarize it.

Dietary Supplements for CRPS

Treating Complex Regional Pain Syndrome with Dietary Supplements

Dietary Supplements should be added to every CRPS warriors armory against this disease. From fish oil, which is known to help against allodynia and hyperalgesia, to ginkgo biloba to help fight brain fog, and Vitamin D, which is depleted faster than normal thanks to the CRPS, your body needs vitamins more than ever now. Here is a list straight from our Board of Director's mouths to your eyes, and hopefully, to your belly's, to feed your systems. Whenever possible, try to buy Gluten Free, organic, and naturally sourced.

Many of the procedures we have listed here are FDA approved or are in pre-approval stated, but many are not, and are in circulation around the United States and around the world. We will note whether they are FDA approved (to the best of our knowledge) on the page, but if you know different please, share the truth with us in the comments and we will do our best to follow up. All treatments listed are treatments that are in an active state and are currently in production and being purchased by people with the disease. Our intent of sharing this information with you is to educate, inform and publicize what treatments are available to you so that you can make the best decision for you. If we have personal knowledge, or if our doctors have an opinion, we will notate that in the post, but otherwise, we try to stay unbiased and let the community speak for themselves.

Alpha Lipoic Acid

Several studies have found that Alpha Lipoic Acid (ALA) can help with neuropathy -- nerve damage --related to CRPS, reducing symptoms like pain, tingling, and prickling in the feet and legs. It plays an important role in improved nerve function, reduced inflammation, lower blood sugar levels, weight-loss, diabetes, slowed skin aging and other health conditions.

CBD (Cannabidiol) Oil

Are you looking for a safe, natural and effective way to relieve your chronic pain but don't want the "high" associated with Marijuana known as THC? CBD is rearing its head as the new non-drug (and legal) of choice in a town that has a lot to offer without the risk.

Cinnamon

Many people who suffer from the chronic, intractable pain of CRPS which causes joint and tissue inflammation, are turning to natural supplements to help control their pain. Cinnamon is just what the doctor ordered and Cinnamon is a natural spice which can easily be added to many of your favorite recipes or taken in gel capsules to get your daily serving.

Fish Oil Omega-3 Fatty Acids

Studies have shown that fish oil can slow the progression of neuropathy and help certain symptoms of CRPS such as allodynia and hyperalgesia. These studies show that anti-inflammatory properties are useful in reducing pain and discomfort. Its neuro-protective effects can help to stimulate neuron out growth.

Ginko Biloba Herb

Gingko Biloba is a top-selling supplement due to its long-list of cognitive benefits and well-known abilities to help fight mental fatigue & brain fog, increase cognitive function, improve memory, and increase mental agility to easily perform everyday tasks.

Green Tea Supplements

Green Tea is one of the most powerful antioxidant on the planet and is capable of stopping the unstable molecules called free radicals from damaging your cells. The positive effects on that it has on the brain and heart is just what the doctor ordered for your nervous system and circulation - the main systems impacted by CRPS.

L'Arginine Supplements for Circulation

L-Arginine is primarily used to increase circulation and blood flow for enhanced vascular function; including areas of the body like the heart, head, and eyes. Some believers that suffer from CRPS say that the longer they take it, and with CONSISTENT use, it can even take the edge off the burning nerve pain and it can actually help warm up ice cold skin temperature because of the increased blood flow.

Magnesium

Do you suffer from brain fog, muscle cramps, migraines, and nerve pain from chronic pain brought on by Complex Regional Pain Syndrome? That could be because CRPS causes nutritional depletion of many nutrients, minerals and vitamins due to the myriad of drugs to help us fight the symptoms of CRPS.

Vitamin C

High Doses of Vitamin-C after an injury have been shown to decrease onset on CRPS in some studies, which have shown that Vitamin-C can be used as a preventative, if used in high doses of 500mg, for no longer than 50 days, following an injury such as a wrist fracture.

Please note, that none of these types of food is a magic cure for CRPS, but I do think that, seeing that the body is more than just flesh and blood - as CRPS so clearly proves over and over again - it is something that every warrior, not only CRPS warriors, can look into as a way to prolong life and hopefully decrease pain to some extent. Again it is not a magic cure, and there may not be one of these food groups or vitamins that bring any relief to you, or perhaps it inflames other medical issues...or perhaps it may just be the thing that you have needed all along to enable you to live a better, easier life with CRPS. I know in my case, Cannabis (CBD) is not an option as it increases my pain, but for others it may be helpful.

When I think of my dad, I remember how he always taught us as children that a lot of medicine has its origin, or its roots (pardon the pun), in plants or in nature. Things like Aloe Vera has long been used in its original form, before being "branded" in the form of pills, creams, drinks and so forth. Things like Cannabis, sour fig, African Wormwood, Buchu, Rooibos and many more were used through the ages in various forms for their natural anti septic, anti-inflammatory and medicinal properties. I remember how our house used to smell of buchu vinegar (used for sprains), or African wormwood or buchu (boiled as a tea), fresh rooibos tea (made from freshly dried stems). 

The same with vitamins. We did not have all these vitamin supplements of today. Perhaps they were on the shelves in the eighties, but it was very limited, and not really affordable for the average Joe. Between us and the neighbours, we had guava trees, pear trees, vineyards, loquats, strawberries, gooseberries, mulberries, quinces, figs and more. That is where our vitamins came from, directly from the earth. We grew our own corn, green beans, carrots, potatoes, tomatoes, broccoli, cauliflower and more. Again, that is where our vitamins and dietary supplements came from. Fizzy drinks were a luxury. We drank freshly squeezed juice or we got fresh juice delivered by the milk man (or Milky as we used to call them). That was where our vitamins came from.

Perhaps it was a much simpler time, without the fast foods, preservatives and packed schedules of today. Having a telephone on the wire and not cell phones and laptops made that we were less stressed. If you missed a call, that was it - you missed it, and probably did not even know it. People talked to each other, instead of sending emoji’s. Your actual face was the emoji. Families had dinner together, without the tv. In a sense, the world made more sense back then. Yes, a great deal of the diseases that we have today was misdiagnosed because of a lack of knowledge, but I do think that we lived healthier lives, that helped us to manage a lot of these things much better. Many of us probably lived with these diseases without knowing it. And because some of these diseases was not known, treatments were not readily available, as modern technology to diagnose these diseases and develop these treatments were still experimental and in development stages. But then there were also those diseases that doctors already knew about, like CRPS, that are so complex, that proper treatments are still being developed and re-evaluated and tested. This is not always a quick and easy progression.

At the end of the day, treating CRPS is not as simple as popping a pill. Treatment involves a holistic approach. I had extreme pain earlier the week, and somebody asked me why don't I take something for the pain. I answered her, "Pain medication don't work. It is like a foreign substance that enters my body, and my brain shouting to my body - that's probably for you - and my body answers - I don't touch that stuff, it must be yours".  

Yes, I do use medication, but for a different purpose. But the medication alone is not enough. All of these coping skills, mirror therapy, re-inventing myself, taking in vitamins etc. is needed to treat something so complex, that it becomes somewhat more bearable for me and enables me to push my limits. Lets face it, we all need a little bit more sun and natural vitamins. In the next chapter we will be looking at spoon therapy. Take care.

  

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.