CRPS My Journey: Chapter 20 - The greater cost of living with CRPS!

Update on Rhizotomy

So let’s start off with my Rhizotomy. At last I went for the Rhizotomy. It was so amazing to find an anaesthesiologist, that not only knows about CRPS, but have a very good knowledge of it. She even referred me to the Red Cross Children's hospital that apparently has one of the best departments in dealing with CRPS - although they specialise in children. Nonetheless, I think it is a good starting point, even if it is just to sit down with them and talk to people that 1. know, and 2. where I might have the opportunity to team up with, in creating more awareness. She immediately noticed the medical aid band and glove, and asked me just to keep the glove on but to remove the medical aid band before the procedure, because of the metal (they put a tag around my arm to say don't touch, CRPS - but she made a promise that she kept all the way, and that is to make sure that nobody touches that arm). She even sat on my right side and did not allow any blood pressure and stuff to be done on that arm. As I drifted off, I remember that she calmly and softly, as to not irritate my hand, put her hand on Buddy as if reassuring him that he is going to be alright, while reassuring me all the way that I am doing good and she will take care of him.

So the procedure went as well as can be expected. Some nausea, hell of a headache (that lasted for a couple of days, and still comes and goes, as they obviously try to cut off the pain signals from the nerves to the brain while trying to restart the nerves around the disks) and a bit off balance with my one leg wanting to go to one side and the other to the other side. There is an old Afrikaans song that says, "My voete loop na Wellington, maar ek gaan Worcester toe". Roughly translated, "My feet are going to Wellington, But I am going to Worcester" - you know going in opposite directions. But that has seized now. This is all normal because of the anaesthesia or sedation that went much deeper this time around than last time. I was booked off for a week to recover, not allowed to drive for a day or two, and need to see the physio in a week or two's time. Then it is waiting it out for a month, while doing post-op physio, to see if the Rhizotomy is starting to work. I have been warned that there may be ups and downs and that I might feel sore for a few days, where after I might start to feel better, before it hits me again. Our bodies just never stop the battles. Even when we sometimes choose to, our bodies never do, until it does not have the strength to do so any more, and even then it will give everything for that last battle.

But how did Buddy handle this. Surprisingly well actually. Slightly flared up, but not as bad as I had expected. He did put himself in the corner again, sulking away (for what reason I still do not know), while feeling far away and disassociated from the rest of my body. So imagine the setting. I come home from hospital, sore, stiff, with a transact plaster on my neck, unstable on my feet etc, and I sort of try to get comfortable on the couch, with my feet up on a pouf, and cushions behind my back and neck. Mufasa, the cat, is very excited that I am home, so he immediately jump on the armrest of the couch, to the left of me, so that he can be as close to me as possible. Teresa takes a cushion and lies with her head in my lap - on my right side. So I decide to take Buddy and put him on her leg. However...all that I feel is my arm up to my wrist on Teresa's leg. Buddy feels like he has dislodged himself from the rest of my arm, and is sitting, sulking on the edge of the couch, way....wayyyy...wayyyyyy back behind Teresa. 

Now here is the funny part. Animals, we all know can be very intelligent. Mufasa knows that if he wants to play, he does not play with Buddy - he attacks my left hand and we'll wrestle...but Buddy, he will sniff and he will gently put his head against him (Like Toothless in How to train your Dragon). I did not teach him that, he just instinctively figured out that Buddy is special and that he should not mess with him. So I decide, to hell with this, and I take Buddy to softly start stroking Mufasa's head where he is lying close to me. Mufasa immediately jumps up and meow, and then bite towards Buddy, something that he would never do, and he dodges away from him, as if he has seen a cobra. I take my left hand and put it on Mufasa, and Mufasa calms down, while carefully watching Buddy, and he starts to purr. So I put Buddy back in the corner. Even the cat, that is usually very cautious towards Buddy, knew that Buddy was having a moment, and he was not in the mood for Buddy's tantrum. But eventually Buddy got over himself and we started talking again...and even Mufasa allowed him back again, with some reservation.

In the meantime I continue with pain meds for my neck, as well as the normal meds for the CRPS. I have been off the Cymgen for a couple of weeks now, and emotions is starting to return slowly. The worst part of this is that the negative emotions, or the emotions that makes you feel like crap or like you are having a bad day or that you experience when something happens, were the first to return. And then, probably because of that, came the frustration and the irritation. Now, it is still awkward having some "dead" emotions and having other emotions that are slowly returning, and I am dealing with that every day. Still it is much better than being fully cut off emotionally from every one you love and care about. Over the weekend I was very irritated, and everything was just becoming too much...and then Teresa came in and jokingly said that she wondered when she was going to get scolded, and she hugged me...and for the first time in months I burst out in hysterical laughter, so much so that I tried to say something, but I could not - no matter how hard and how many times I tried. But yes, believe me there are bad days, and there are days that the irritation levels are so high that you want to stay out of your own way. The problem is that you can become so "comfortable" or engaged in being irritated because of what you are going through that your body naturally starts using it as a shield or armour. And this is probably one of the hardest emotions or senses to deal with and to control, as it is often driven by pain and frustration and self-preservation.

Medical Aid Funds

One of the things about CRPS that I have not really touched on yet, is the enormous strain that it puts on your finances, like many other illnesses does. Meds and treatments are expensive, especially when it is a chronic necessity that is not met as such by the medical aid. We are in April now, and my treatments has already drained our finances and our medical aid fund. Yes, there were other medical expenses for the family as well, but the biggest punch was my CRPS treatment. If the medical aid would just have made the decision to approve the medication to be paid from the Chronic Health Benefit, it would not have been a problem, but they are rather willing to cover a R300 000+ implant, that I am not comfortable with and still do not need at this point, than covering meds, that help me to cope, under chronic health benefits. And I know that a great deal of CRPS warriors goes through exactly the same thing. But it seems that no medical aid listens to those that suffer from CRPS, or even to the professional doctors that fight for us and for the treatments to be placed under chronic health benefits. The rule that medication that is needed for more than 6months, is seen as chronic medication, unfortunately does not apply to CRPS - as with some other conditions - double standards if you ask me. And even if the Medical Aids acknowledge the existence thereof, it does not make a difference. This may lead one to believe that there is more money and profit to be made in promoting a SCS implant with a 50/50 (optimistic) success rate, than allowing well needed medication to be approved under the chronic health benefits - where it can still be strictly monitored (and which costs a fraction of the cost and sustainability of an implant).

It does make you wonder how much of a medical aid fund's mission statement is to really improve human health through non-invasive and more traditional treatments, for the benefit of their members, and how much of that mission statement is actually to make greater profit at the cost of their members. Invasive surgery should be priority where needed, but when traditional non-invasive treatment can assist and prolong health, and assist with coping better with incurable diseases and syndromes (like CRPS), in a controlled environment, it should not be dismissed due to greater profit margins. Please note that I do not work for a medical aid fund, so this is only my perception, my observation - but one that I feel is shared by many other people as well.

Yet, when you start to read up about medical aids, it states that medical aids are seen as non-profit entities that ploughs the money, that members pay collectively, back into the fund to better cover medical expenses of the members. This however is not the message or experience or perception that is often conveyed to its members. When you look at what CEO's of some of the top medical aids earn for example, you will be shocked.

On 7 November 2018 an article was published in Businesstech, with the heading:

R20 million payday for Discovery CEO Adrian Gore

A portion of the article reads as follow:

Group CEO, Adrian Gore, was rewarded with a total package of R19.8 million, including a R6.6 million basic salary, a bonus of R7.8 million, long-term incentives of R4.1 million and other benefits of R1 million and R313,000.

Overall, Discovery paid R138.6 million to its executives in South Africa, R84 million to its executives in the UK (GBP4,532,404), and R14 million to its director in the US (USD983,762).

Yes executives and managers need to be paid a fair amount according the value and the other skill(s) that they bring to the company, as should be the case in any business. But how is it that these pay-outs are so astronomical, and yet members cannot afford to get the treatment that they desperately need because of red tape, which, when you often challenge it, is not backed by medical science or medical professionals in those fields, but by introductory admin and call centre staff that has no medical background, and seem to be trained to get rid of members with pre-taught phrases and answers as quickly as possible. These are the people that you get on the line when you voice your concerns. 

I have been in a situation before where a medical aid consultant with no medical degree whatsoever, tried to convince a specialist surgeon, whom has been studying and working in his field for years, and that have done extensive tests on Teresa, that a threatening stroke is not cause enough for submitting someone to hospital. So this was a couple of years ago and we were at the Specialist office the day, and Teresa is very sick and need to be submitted to hospital. The Doctor's receptionist phones the medical aid to get authorisation so that she can be submitted for further tests and treatment, as her symptoms (and LUPUS history) points towards a possible stroke. The call centre agent tells the receptionist that she cannot give authorisation without a treatment plan. The doctor gets on the line with them, explains everything, and still the call centre agent refuses to give authorisation. Eventually the doctor uses a different IOD code just to get her submitted, and also not too soon.

Of course, I am furious and I get back to work and I call the Medical Aid. Who do I get? The call centre agent. Great! I soon realise that I am getting nowhere and I ask to speak to a manager, which eventually after a long battle happens. In the meantime, I write a letter to the ombudsman and the Medical aid, while I wait for this manager to speak to me. I start by asking them their qualifications to make these life altering decisions, which at first they are reluctant to give. Eventually they confirm that they are not doctors and have no medical degrees and just do what they are told by the system. I ask them, "should my wife die, because they would not trust a specialist surgeon with years of experience, what then". They cannot answer me. Long and short of the story, I get a phone call from someone else at the medical aid later that day to say that they are very sorry, and that this should not have happened. The fact is that I agreed with her that this should not have happened, but it did. The next day I arrive home, and find a fruit basket under my braai, with a note from the medical aid saying, "Sorry for the inconvenience". Moral of the story, the message that they sent me, their member, is that a fruit basket need to fix what they are not prepared to value due to incompetence. Years go by, same medical aid, same scenario when her appendix burst, just after she had a miscarriage. Their comment was that this should not have happened, yet years later it still happens and keep on happening. Only difference - this time there was no fruit basket.

 

Medical aids are there to also take the mental and financial strain off patients in order to promote recovery and wellbeing, but how often exactly the opposite happens. Patients are being denied medicine on Chronic Health Benefits that they need to treat or cope with various diseases and/or syndromes. My own medical aid will be the first to tell you that they acknowledge CRPS and that they are willing to fully fund a SCS implant - no co-payments from my side - BUT they are not willing to put my medication on Chronic health benefit as they do not feel that there is enough cause/evidence to do so - even when I have been in treatment for two years. In what sane world does that make sense? Whether it is schedule 4 or 5 medication, it need to be reviewed every 6 months according to law They promote "prevention is better than cure", and they run programs to promote healthy living, yet they rather allow invasive procedures than traditional treatments. 

I remember when Teresa was diagnosed with SLE, the safest medication for her to use, with the least side effects, would not be approved on chronic health benefits by our medical aid, as the government felt that we did not have enough malaria cases in the country to validate this. The meds that she needed, were the same medication that helps against malaria, but regardless of doctors fighting with case studies to show that it treats Lupus, SLE, MS and various other diseases, we still had to pay the medical council a certain amount every 6 months just to get permission that we could import and buy 6 months’ worth of medication from the US. The fact that this medication was much safer for Lupus sufferers, even during pregnancy, did not carry any weight with the government or the medical aids. Even her pain medication, although this was covered by the chronic health benefit, was only about 15% paid by the benefit. Specialists fought against this to no avail. The same goes for my son's medication that he has been on for the last 4 years already - seen as chronic, but not approved under chronic health benefits. With CRPS, I have found that we are in exactly the same situation.

Because the medication is essentially medication that is used for epilepsy and/or depression, but also helps to cope with CRPS, they do not see enough reason or proof to approve it for CRPS under the chronic health benefit. I understand the issue with the fear of addiction, but putting medicine under a chronic health benefit would not increase that fear any more than having to pay for it from your MSA or even your own pocket, which in effect is what is happening as it is needed but not covered under the chronic health benefit. In both instances, the medicine, and your condition, need to be reviewed every 6 months - some cases even less than 6 months. Certain scheduled medications require a monthly prescription - which could still be done, even if it were to be under the Chronic health benefit. I understand that there are a lot of factors to be taken in consideration when the medical aids make these rules, but at some point they will have to start thinking of the people that pays loads of money to have a medical aid, but for whom the treatments that they so desperately need are still so far out of reach due to red tape like this. Why, for example, would you get let’s say R15000 Chronic Benefit cover for the year, but they refuse to cover the treatment that you need from it. So instead they rather pay it from the MSA and day-to-day benefit, draining your funds when you need it most? Meanwhile the medication are being used as chronic medication.

People should not need to suffer from a disease or incurable illness, and have to worry about their finances and how they are going to cover their treatments for a better quality of life, when they have medical aids that would not meet them where they need it most. Promoting reward health programs and gym membership and all that stuff unfortunately often promotes better quality of life only for the healthy, and often disqualifies the sick. People that need chronic medication, and that cannot afford it, cannot afford these so called healthy living programs in any case. Medical aids should first take care of the treatments that they need in a way that is affordable, under Chronic health benefits, so that members can start to benefit from these healthy living programs that they offer. But then again, as I said before, this is my perception, my experience....but I do believe that more changes need to be made.

Continuing to push my limits

I have mentioned before that one of the things that I have learned the past two years is that I cannot afford to ignore or neglect Buddy. Obviously I am aware of him and of the pain and burning and his tantrums. What I mean however is that I cannot afford not to challenge him. Yes, as it is my dominant hand, I use it every day as normally as possible, but I am trying to take on more and more projects to challenge him. And the projects, although still at a slow pace, do pick up. Some days I am able to do stuff that I could not do the previous day, and other days it is reversed. Fine motor skills are still challenging, but by continuously challenging myself, it does not necessarily become less painful, but it does build towards my endurance and improving my skills. When I think back on two years ago, for example, when writing and drawing was really a challenge for me, I remember how I were able to push it for 15 seconds only before my hand became so painful and burning that I had to stop. Today however, it has become much longer periods, although the pain and burning is nog gone, and it still limits me to a degree. The fact is, if I have not started to push my limits, I would not have grown and overcome a great number of obstacles. The only difference being that my current limits, might not have been the limits of two years ago. Those limits were much further, much higher, than it is today. But I cannot let that stop me.

I recently made a weathered looking tray for my wife - my first try on doing a weathered look. Took me two weeks. Buddy did not enjoy the fine skilled work, especially not the sanding. But I have learned that the more that I do stuff like this, the more my brain starts to rewire itself, and the more Buddy and myself become in sync - not without issues - but with mutual respect.

DBT: Interpersonal effectiveness

In the previous chapter we spend some time on Mindfulness. It is also something that I have started to do together with Malan, my oldest son the last week or so. As he is a very anxious child, his doctor proposed that we try it. The first time he did it, he said that he felt more relaxed, more calm and we noticed that certain tics like sounds and gestures that he always has, stopped after he has done it. Our goal is to do it every evening before he goes to bed, but I am also trying to teach him to just close his eyes when he has a bad day at school or becomes anxious, and do a couple of deep breathing exercises...and he says that it does help.

So in this chapter we are going to look at the next step of DBT, namely Interpersonal effectiveness. The name implies it all. It is a skill where the focus is on learning how to cope with people around you and relationships and stressful environments.

It is a skill or process where you learn that it is allowed to, and that you can say NO to a situation or request - something that we often are too scared to do. You learn how to communicate clearly in such a way that when you disagree, people will not experience you as hostile. You learn the skill to ask for what you want, without fear of rejection and while maintaining your self-respect. You learn to have a functional and healthy relationship with others. You learn the skill to balance priorities vs demands. The idea is to build positive relationships and social skills in order to overcome social awkwardness.

One of the major things about CRPS that we have spoken about in the past if this whole disassociated behaviour that often comes as part of the disease. Socially you tend to become cut off from friends and family for reasons that we have spoken before in other chapters. And because you become disassociated and socially cut-off, you become guilt-ridden because you have to say NO to so many things, so often, because of the pain you are in. Interpersonal Effectiveness helps you to deal with this in a healthy, non-threatening way. It helps you to be able to say NO through healthy communication. It also helps you to say YES on your own terms, while being open, honest and respectful towards others. The idea is to enable you to narrow or close the gap, that CRPS has created between you and the rest of society. It teaches you how to deal with conflict in a healthy and positive way.

Ways in which these skills are taught is (https://dialecticalbehaviortherapy.com):

So this has a lot to do with relationships, building or re-building trust, acknowledging boundaries and mastering communication - things that are often lost due to what CRPS does to you. A whole lot of coping with CRPS I have found, is based on putting in the work and "getting over yourself", while you do not have the strength or the motivation to do so as you are living in constant pain. But no big battles have ever been won, by sitting on the side lines waiting for stuff to happen. It is often the small battles and the small changes in life, that brings about the bigger life changes. My battle and my limits, may seem small in relation to other people's, like for example people fighting for woman's rights or gender and race equality etc...but it does not make it less important. If something "simple" like relationships, pain management etc is valuable to you, then it is worth fighting for. So how do we change the mindset or way in how Medical Aids treat CRPS? In exactly the same way. We start small but firm, where it really matters. We need to make them aware of what CRPS warriors are going through, what they need and how the decisions that the medical aids make, impact their members. If we want to see change to how CRPS warriors are treated and how our treatments are managed, we need to help them understand what we are going through. Perhaps their rules may not change in our life time, but then at least we have stood up to become trendsetters for the next generation so that they do not have to suffer the same struggles that we do. Never give up!

CRPS My Journey: Chapter 14 - Festive Season

Compression gloves/socks/sleeves

A question that I get asked a lot, especially here at home, is if compression gloves really work or not. Again this is a very personal preference, as some CRPS warriors do get some relief from it, while others feel more aggravated by it. In my case though, it does help...for a couple of reasons that is. But before I get into that, what is compression gloves or socks or sleeves? And why do you wear them?

The main purpose of, let’s call it compression aids, is that it helps for pain, swelling and stiffness. 

Compression aids' purpose is to support circulation and manage tingling and pain in your hands, feet, arms, legs or wherever you wear them. They work by lightly squeezing the veins in your affected area to support healthy circulation, while also preventing inflammation that can cause joint pain. It increases blood pressure, lessen muscle soreness after exercise, and prevent blood pooling. It is not only used by CRPS warriors, but also by people that suffer from Lupus, SLE, osteoarthritis, rheumatoid arthritis and more.

They are created to be worn for 8 hours, approximately the time that you sleep, so many people wear them when they go to bed. In my case however I have tried wearing them at night, only to be scolded by my hand as he did not like or appreciate it at all. So I wear my gloves, or rather glove as I only wear it on the affected hand, during the day only, and also when I am driving and working with my hand.

It is usually made out of lycra, nylon or even neoprene and I know that the gloves that I wear is copper infused. What does that mean? There is fine copper infused into the material that the gloves are made of. The copper again helps with blood circulation and reducing swelling, but also helps to gently heat up the hands. The gloves that I wear also have grip stripes on the palm side of the glove to assist with grip when picking things up, moving stuff etc. and to prevent your hand from slipping in such events.In South Africa we are unfortunately limited when it comes to compression aids and manufacturers thereof, and I am yet to find a compression glove here that lasts more than a month, maybe two. There is one brand that I do stick to which is comfortable, which lasts a bit longer and has better stitching. The unfortunate thing however is that every time that I need to replace my glove, I need to buy a pack of two, but I never use the left hand one. So yes, it would be great to be able to buy from the manufacturer and rather buy 2 or 3 at a time, but all of them right handed. The other day in the pharmacy there was an elderly lady in the que that only wore a left handed glove, and I was very tempted to ask her if we can trade her right handed ones for my left handed ones, but we were probably different sizes in any case.

So how do compression gloves help in my case?

I remember one of the issues last year that I struggled with was fear of becoming dependent on wearing the glove every day. When I mentioned this to Wendy, she made a perfectly logical observation: "It would be better to be dependent on a glove than on pain medicine (should medication work - which in my case does not). So weighing up the pro's and con's there would be much more con's on "drug" dependence, than on wearing a glove". This made perfectly sense, as I have not looked at it in this way before. So how does it help me:

1.     Pro's and Con's - It does help for the swelling, pain and inflammation (pro) - it does irritate the sensitivity (con) - I had to choose and the pro won. At this point I can definitely feel the difference between wearing them and not wearing them. 

2.     It does help for the stiffness in my hand. I guess it has to do with both the heat that is generated and the copper infusion. 

3.     It does help with gently heating my hand, especially during winter times, or when walking past the refrigeration section in the supermarket. Yes, I still feel the cold and get greatly affected by it, but it is much worse when I do not have the glove on

4.     I feel more confident in using my hand and having my hand out in the open. Especially in the beginning where I felt ashamed of my hand, it helped to build a bridge of confidence again where I could accept my hand for what it is;

5.     It makes me more attentive/aware of my hand, almost like reminding my brain that I can and should use my hand, but that I need to be mindful in doing so. It helps me to pace myself and not overdo it when using my hand - as it is easy to do so, as this is my dominant hand.

6.   It helps to bridge the gap between my hand and my brain so that my hand feels worthy or helpful, and my brain treats it as being a true member of my body.

7.   In South Africa we always greet by shaking hands, you know a very strong "boere" handshake. It helps people to know that they cannot give me such a firm handshake, or that they rather need to shake my left hand.

8.    It creates opportunities for discussions on CRPS, as people would approach me to ask what happened to my hand. Like a dad at my son's school, who's kid was playing a rugby match with Liam one Saturday. He approached me to ask what happened to my hand as he has been noticing that I have a glove on when I drop the kids off in the morning for school. So I started sharing my story, and it so happened that he immediately understood, as his best friend, who lives in another province, has very aggressive CRPS in his leg, so much so that he is hospitalised almost every week. He thought that CRPS were something strange and exclusive and very rare, and now he met someone whose son is in the same grade as his son who has CRPS as well. Well, before I was diagnosed, I did not even know about CRPS.

9.  When swimming or cleaning the pool, I obviously cannot wear my compression glove. So to combat this, I bought a pair of 3mm diving gloves. Diving gloves are not developed to keep water out, but rather to trap water between the glove and your body. As the water is trapped there, your body heats up the trapped water, and in doing so makes it more manageable. Here in the Western Cape where we are staying, we have the cold Benguela Current with surface temperatures of 8 degrees Celsius (46 degrees F) up to 15 degrees Celsius (59 degrees F). So swimming in the sea or fishing, you need to be prepared that the water is going to be cold. With my kids that loves the sea, I want to enjoy that with them. A diving glove helps me to manage the pain a bit better while doing so.

10. It looks cool, like a racing car driver or Michael Jackson - if you think Michael Jackson was cool lol. Just kidding, wearing a compression glove does have a purpose.

Catch me if you can!

The past couple of weeks has been hectic at work as we were preparing for an open day for our "new" baby campus. Apart from doing the designs, I had little time to help my staff with the actual building projects - a wall here and there, but otherwise I was kept busy with other work. The last week however I jumped in to help with the last couple of things that had to be done. Obviously I knew beforehand what to expect afterwards and I had to deal with it. So the last Thursday was one of those days where my fine motor skills were properly put to the test. By 3 o'clock that Thursday afternoon it felt like my hand was trying to run away, while my body was clinging and pulling for dear life to keep him from doing so...and my brain was just throwing its imaginary hands in the air, just giving up - letting chaos reign. So on Thursday night my hand was like the tantrum throwing child in the corner again, and my brain just didn't give a damn, and just growled "Stop being such a child and grow up!"...and the rest of my body was trying hard to keep the peace, but slowly started to lose its patience. 

By Friday evening my body gave up as well. For the first time in months I slept without waking up at night, without having nightmares, without giving a rat’s ass about my hand, the burning and painful throbbing and my brain trying to figure this mess out. I still woke up tired, but I slept, a luxury that does not come too often. I think if it was not for waking up because my body was tired of lying down, I would have slept much longer. It is as if every part of my body, my brain and hand included, just shut down completely, with just my lungs operating on low battery power to keep my alive. If I knew when I was young what I know now, I would have tried to sleep more for the last 40 odd years of my life. Sleep really has become a luxury, and even more so, sleep without burning and pain and without an overstimulated brain that does not know how and when to shut off. And Buddy...he was stiff and swollen. At one point I feared that my trigger finger was back. But that was to be expected.

Unfortunately, when you have a family with two small boys at home, kids don't always understand the pain. And why should they? This is not their burden to bare. The problem is with boys, apart from wanting to play, they tend to break things, or come up with these interesting and thought provoking ideas of things that they want to do, build or make...and dad is the one that need to do it. So there is not really much time for sitting back and taking it easy. Which may not necessarily be a bad thing either. I found that it is important for me to try and keep my hand and my brain busy, even when I do not always feel that way or when my hand is sore.

One of the ways that I do this is to get myself some small projects that keeps both my hand and my brain occupied and exercised. But with the understanding that I pace myself and that I stop when it becomes too much. Yes, sometimes I do stretch it a bit, but then I pay the price. The idea however is not to push myself so hard that I cannot use my hand for the next couple of days, but to rather do stuff that challenges my brain and my hand in such a way that they can start working together. Two such projects that I just finished is a Hat & Coat rack and a Floor Lamp. It is not big projects like Liam's bed was, but it does involve a lot of fine motor skills, patience and time. As I explained this to a friend the other day: "In a way I am keeping my hand and brain out of each other's hair, in order for them to work together as a team", and for most of these projects it worked. Both knows that for certain things there is little margin for error, and by looking out for each other and working as part of the same body, they accomplish more.

The boys

Having 2 boys means that there is never a dull moment. Someone asked the other day if I would share some of their stories in my blogs. Two stories that comes to mind is surrounding the treehouse. By now you know from my previous chapters that I built a treehouse for my kids during lockdown, probably where my hand underwent said trauma that led to the operation that lead to CRPS. Anyhow, there I was standing 4 meters above the ground on the deck that I had just finished - starting to build the house itself, with the kids playing in the backyard. At some point I had to get off the platform, and not having built a ladder on the tree yet, I had to get down the folding ladder again. As I placed my foot on the first bar, with the full 113kg body weight following, the whole ladder collapsed under me and I fell so hard that I got the wind knocked out of me. I was so busy with the house, that I did not realise that Liam had climbed on the ladder and unlocked all the clips, so when I stepped on the ladder, the ladder collapsed as if I was stepping on a grass structure. And there was Liam, rolling in the grass with laughter. Boys will be boys.

Another story was a couple of months ago. The boys were playing in the tree house when they decided to have a competition over who could climb to the top of the tree the fastest. Now Malan, the 11-year-old, is very sensory. He loves being outdoors, but his hands may not be dirty. Liam (7 years old) on the other hand is a true outdoors, rough, play in the mud, roll around with the dog kid. Food falls in the sand; Malan won't touch it. Liam will dust it off and eat it and asks for his brother's as well. So this specific day Liam had won the competition. I was busy in the kitchen when I heard Malan throwing a full blown tantrum and their mom scolding Liam. The next moment she came into the house, with Malan busy undressing, telling me to talk to Liam. However, as I listened to what had happened I really had to bite down on my lip in order to control my laughter. 

So Liam somehow got to the top of the tree first, and then, as Malan was still climbing, Liam got this bright idea. As he was waiting for Malan to catch up, he decided to pull down his pants and peed on Malan, who was still climbing. Malan was totally disgusted, while Liam was breaking himself laughing. And Liam really let go, with Malan being soaked, having nowhere to go to avoid it, except down. But gravity was also in favour of the urine, so as Malan was getting down, so was the urine. I guess when you gotta go you gotta go. Can you imagine the sheer skill to be able to hit a moving target from the top of the tree with such impeccable aim like that? I mean Liam have got to be up there with the world's best sharp shooters, and he did not even use a scope or nothing. So yes, I had to talk to Liam, while my heart was bursting with pride - just a little bit. Somewhere in the talk, I might have given him a secret high five, but who can remember. It was so innocent, so boy like, so brother like.

But that is how it goes in the Ritter household with two very busy, "innocent" boys that just loves life. Nowadays children are not allowed to be pure children like this anymore. If this was to happen in our schools, parents would be called in, Liam would be expelled and there would be court cases. I am so blessed that my kids have the space at home with a big yard where they can be kids, like we were kids, where they can still be mischievous without being rude, where they can have pure innocent fun, without being accused of being malicious and disrespectful.  

Christmas time and the holidays

Being newly diagnosed and at a bad headspace last year this time, I was not in the mood for the holidays. I was angry, frustrated, in immense pain, trying to get to grips with the diagnoses and a whole new way of life. At the time it felt that there was nothing to look forward to. Yes, we went away to my parent’s place at the coast, but it was more for the sake of the children. This year however, I am looking forward to breaking away and to just lay low. It has been a long year and I can feel that I am completely drained. Having something like CRPS, you quickly learn that where you used to battle your normal daily tasks at home and work, you now have to battle much greater demons together with all the usual stuff. And that is tiresome.

With Christmas time drawing near and family gatherings drawing closer though, I still do not feel in the mood for being with people though. It has almost become harder to be with people that you know and love, than with strangers. Don't take this the wrong way, I love them and I always enjoyed their company, it is just that CRPS has a way of making you anti-social. They don't make me feel unwelcome or left out, I think I am doing that to myself as it really has become hard to communicate with people and to mingle as before. Whether it is because of brain fog or the fact that CRPS tends to isolate you because of what it and the medication does to you....the fact is, it happens, and it is very hard to get out of that "slump". You tend to feel that you want to be more on your own, with your own company and soon you get to a point where you stand up one morning and your wife tells you that you are not only withdrawing yourself from friends and family, but also from her and the kids by keeping yourself busy in the garage. It is not intentional; I didn't even notice it that way...it just happens. So wish me luck as we have a family gathering this coming weekend. I know that I have to get over this "fear" or procrastination or whatever you want to call it...but is not so simple.

One of the things that I do look forward to in going to my parent’s place is that we can go places where nobody knows your name and where there are not many people around. I have always been in the "people business' and had to teach myself to act more like an extrovert, even though I am an introvert. Nowadays with the side effect of the meds it just brought the introvert in me much more to the surface, but in a way that, where it used to bother me when I was young, I am embracing it more and more. I have always been in my happy place if I could be somewhere in the mountains in a hut, away from civilisation and technology. I love and need my space. Now, I am longing for it more and more each and every day. If I could, I would take my wife and children and move there in a heartbeat. Perhaps the meds have just the ability to break down walls and fences in a way that it leaves your true soul bare...who you are and who you have been for all these years is suddenly not supressed anymore. Or perhaps it is just me trying to figure this out. 

As this will be my last chapter for this year, my prayers for you is that you find your true self again. Or perhaps you have already, in that case embrace it. There is too much "fakeness" in this world. we all put on masks every day in different situations and in different company, instead of just being who we were made and meant to be. CRPS makes you put on even more masks. When you are in pain, you smile. When you are tired, you smile. When you feel depressed, you smile. When you struggle, you smile...It is tiring. I am not saying that we should walk with our heart on our sleeves, but we need to have the courage to, even if it is just for the holidays, be able to take off the masks, break down the walls and barriers and just be...Everyone need a safe space where they do not have to pretend or where there are no expectations. May these holidays be that time for you.

Thank you for all you support through the year. May you all have a wonderful and blessed Christmas! From my family to yours.

 

CRPS My Journey: Chapter 13 - Burning Nights!

In Chapter 12 we started sharing stories of fellow CRPS warriors. Unfortunately the fellow warrior that I have asked to share their story for this chapter fell through at the last minute. However, I thought it is important to share the following with you as this is something real that every warrior have to deal with every day of their lives.

The Fire within!

I've been on a managers retreat this past weekend, and as we sat around the fire, something occurred to me. Looking at the fire, you won't put your hand in the fire, because you know you will get burned really bad. When the wood is burned out, you are left with red-hot coals which eventually turns into ash. Again you won't put your hand in the red coals because you know that, although there is no flames, you are still going to get burned really bad. With the ash however, it is easy to think that the heat is gone. So sometimes you may forget that moments ago it was a burning flame, and so by accident you touch the ash with your hand and get burned. You forget that the bricks underneath are still retaining that heat, and ash can retain the fire's heat even for days, and then eventually reignite a fire.

I think this explains something about CRPS. When people see that your hand (or affected body part) is swollen and red, they know/assume you are probably experiencing a flare-up, or have pain or burning. And yet sometimes your hand is swollen, but not really red or discoloured, or it is red but not really swollen. And then you have those days when you have this excruciating pain and burning, but there are no outward signs. Like the ash, your hand looks "normal", as if the danger is gone. And it is often at these times when it feels at its worst, because like the ash, the fire is lingering, waiting for the right circumstances to reignite.

One of the crucial things about CRPS is that the disease is often not visible on the outside...but this does not mean that it is not there. High Blood Pressure is often referred to as "The Silent Killer" because you cannot always see the signs and symptoms, but it is there, and it is deadly. In the same way CRPS often has a way of camouflaging itself, waiting for the right time to hit where it hurts the most. Although it is often shared with other diseases, it does not like to share the spotlight with anyone. Sure it may stir other diseases behind the scenes to protest with it, but once action is needed to contain the uproar, it steps forward as the "Anti-Hero" of the story. And it wants you to believe that it is the victim, not the villain, although it is actually the instigator.

So the question that I have been asking a lot lately is this: "Why is the burning always worse at night?"

A lot of CRPS warriors, myself included, experience burning during the day, but at night it intensifies. We talk of burning nights, one of the main causes for a lack of sleep or a disturbed sleep cycle.The same reason that I am writing here at 1 o'clock in the morning, while the rest of the staff is sleeping. Ironically, good proper sleep is needed for the body to heal itself and for us to be able to deal better with the pain and burning, but because of the burning and pain we can't get the sleep that we so desperately need. It becomes this vicious circle which really leaves you in a catch 22. And it is not that you don't want to sleep... You just can't.

The Funny Bone ain't that Funny!

The other day at work I was talking to two of my workers, when I hit my funny bone on the fence. Believe me, there was nothing funny about it, as immediately it felt like a volcano has erupted inside my hand while fire and brimstone is ascending down from the heavens onto my hand. It was not just a normal numb feeling, this was the most excruciating pain and burning you can think of, and more. I literally fell to my knees and just clung to my hand and tried to calm it down while struggling through the burning. I did not hit my hand. I did not hurt my hand. I hit my funny bone, in my elbow, but immediately my hand counter reacted. CRPS causes the affected body part to be on 24/7 alert. You cannot sneak anything past it, as it will set off the body's alarm with a deafening display of pain and burning sirens. I don't even think that the world's best trained soldiers are able to do what CRPS can.

But coming back to the fire, this made me think, usually at night, after I get home from work and the kids are sleeping, I would sit on the couch with my hand elevated on a cushion. And that would be when I feel the burning much more intensely than through the day. But why? Hopefully if I can find out why, I can try do do something about it, to prevent or minimize it.

So I started to read up about it, and some of the things that I read actually made a lot of practical sense.

According to the United Physician's Group, the following plays a role:

Body position:     

The weight of your body when you lie down can create greater pressure on the affected limb/nerves;

Temperature:        

Colder room temperature make you sleep better, but colder room temperature also triggers joint pain and neuropathy can make you more sensitive to cold;

Attention & distraction: 

Your mind is less distracted at night, which makes you more aware of your pain;

Hormone Levels: 

"As your body prepares itself for sleep, your hormone levels, metabolism, and many other biochemical processes adjust. Some of these changes may heighten your pain. Cortisol, for example, has anti-inflammatory effects. However, your cortisol levels drop through the first half of your sleep cycle to let you rest, potentially making pain from rheumatoid arthritis worse."

Medication & Timing: 

"The medications that control your pain well during the day may be wearing off too soon at night. Or your nighttime biochemistry and symptoms may require a different dosage or medicine." - https://unitedphysiciangroup.com/tag/sleep

Brian Barr also talk about a Lack of distraction: "During the day, people are more likely to be preoccupied with everyday tasks and events, such as taking care of priorities and partaking in hobbies, which leaves less time to dwell on painful symptoms." - https://brianbarr.co.uk

Which somehow does make sense to a certain extend. But then, following the same rationale, if this is the case why would I get this intense pain and burning when I hit my funny bone (which is not close to my hand), during broad daylight when I am not sleeping, while my mind was occupied by what I was telling my staff. It was hot outside, I was not lying on my hand (or hitting my hand), I was not hormonal and I took my medicine before work as I always do. Shouldn't I then be exempted from the burning? Maybe it is just me playing devil's advocate, because the statements that both Brian Barr and the United physician group make does make sense. I just think that it is not quite as simple as that. They do however start by saying that not all causes are fully understood and that these may be possible causes only. It is not set in stone.

But it does make you think. I mean, I have CRPS Type 1, but I am affected in the same way as someone with Type 2 CRPS, or someone with LUPUS etc. For one person it is the physical nerve damage, for another it is the physical changes in the brain...and yet the effects are the same and we both get flare-ups.

What Causes CRPS Flare Ups?

The website www.burningnightscrps.org puts it as follows: 

CRPS flare ups can be caused by any number of different reasons. Flare ups can cause a person to become frustrated, upset, isolated and a feeling of not being in control.

The reasons for acute CRPS flare ups include the following:

CRPS Flare ups can be triggered via any different number of reasons. 

Stress
Fatigue
Being Unwell

Overdoing an activity

Weather changes (barometric pressure, temperature etc.)

Insufficient recuperation time

Prolonged exposure to hyperalgesia or allodynia

Extreme emotions

Staying in the same position for too long

Medication changes

Diet changes

And sometimes for no reason at all

Understanding the causes of your CRPS flare up can help you develop your plan to deal with them. This is why keeping a pain diary such as the Burning Nights CRPS Support CRPS and chronic pain diary can help you learn or understand the causes of some or all of your flare ups. (Burning Nights)

So it seems that most health care providers and websites agree more or less on what may be the causes of flare-ups and why it seem to be worse at night: sleep, temperature changes, fatigue, lack of exercise, medicine...and possibly NO reason at all. Interesting though that everything that they mention are exactly the things that we need, but that that we feel TOO sore or exhausted to do, or struggle to do:

We need sleep...CRPS cause your body to struggle to sleep.

We need to exercise...CRPS cause too much pain and exhaustion/fatigue to exercise.

Colder temperatures....CRPS thrives in cold temperatures.

Diet changes and medication...medication causes weight gain and have other side effects.

Attention and distraction...we need to "shut off" our brains to get enough rest, but CRPS uses that to make us more aware of its existence.

For NO reason at all...CRPS LOVES this one as it can blame anything and everything for it's rampage, sit back and then claim innocence.

So, is there a solution? Each person need to work that out for themselves it seems, as everybody is affected differently. Is there a reason why it burns more at night? Again it depends from person to person it seems. Is there then any clear answer to this? Unfortunately not. One thing that we can agree on is that whether there is nerve damage or not, all CRPS warriors have to deal with root fire (fire that burns underground in the roots of trees and that can burn for months at a time until it hit a pocket where it shoots up to the surface. A very dangerous type of fire). Whether the burning increases at night, or you injure the affected limb, or your body simply arms its defences because you hit your funny bone, none of us are exempt from the burning that CRPS brings. And whether there are physical signs and symptoms that others can or cannot see...well it seems that CRPS does not always care about that too much. It likes to show some mysteriousness to the world. And yet to CRPS warriors there is nothing mysterious about it, just plain annoyance, suffering and irritation. To the world it may seem like a highly trained secret undercover agent that moves in the shadows, undetected...to CRPS warriors it introduces itself from the start as James Bond does - I'm Syndrome, Complex Regional Pain Syndrome. 

How do I cope with the Burning Nights?

Every person has their own coping skills that work for them specifically, or at least help them in a way. It is important to build up a arsenal of coping skills that you can draw from. What I have experienced is that sometimes a specific coping skill won't work on a certain given time...and other times it would be the go-to coping mechanism.

There are a number of skills noted that can be useful, but as I said it differs from person to person. There may even be warriors for whom none of them may work. Burning Nights Organisation suggest the following:

1. Support Group or Community - online or near your home;

2. Pace yourself on every activity;

3. Learn to relax;

4. Accept your diagnosis;

5. Speak to your GP, Psychologist, Psychiatrist or Therapist for advice;

6. Take up a hobby, or continue doing it if you have one;

7. Exercise as far as you are able to;

8. Hypnosis

9. Biofeedback;

10. Distraction

11. Visualisation / Guided Imagery

12. Deep Breathing Exercises

Then there are the obvious treatments like:

1. Prayer 

2. Medication

3. SCS

4. Deep Pulse Massager

5. Physiotherapy

6. Mirror Therapy

7. Desensitizing

8. Graded Motor Imagery (Brain Training)

9. Mindfulness "Meditation"

10. Heat therapy

11. Rest / Sleep therapy

12. And many more...

In my own arsenal I use a number of these treatments and/or coping skills (and you can probably add more than what is listed here) - some of them for specific things like for example:

• Prayer/Faith - the cornerstone of my life and my journey - without God as my foundation, I won't be able to get through any of this. 
• Heat therapy - strangely enough, even when my hand feels as if it is boiling inside, a heat pack works for me - ice is death to my hand, even just walking past the cold freezers in the stores, like oil on fire - a hot shower, not so much as it makes me feel short of breath at times.
• Desensitizing - still struggle with this one at times - there are times when my hand feel like the skin is being scraped off, and then there are times when it feels "more normal" - whatever "normal" may be
• Graded Motor Imagery (Brain Training) & Mirror Therapy - especially those times when my hand feel far away, or as if it is someone else's hand, these are my go to (although I try to do them every day). It is actually "fun" to see my hand and brain squirming around as they try to make sense of how my hand is not moving, but in the mirror it is - not so much fun though when my hand starts retaliating with jolts of pain and burning as my brain gets frustrated
  
• Distraction - Work helps to distract me - I think it is all about keeping your mind busy so that you do not fall into a rut where all you can think about 24/7 is the pain and burning and how you are not able to do certain stuff any more. Music also plays a big role here for me, especially when I am at that certain shop, or when the noise around me becomes too much and I become anxious - it helps to drown out the noise and take me away to a different calmer place
• Mind-fullness "Meditation" - Start of my day before I go to the office - helps to prepare me for the day, just to be aware and to get on the same page with my hand. It is almost like that handshake that boxers do before a fight where the ref will tell them "let's have a clean fight. No hits below the belt"
• Sleep/Rest - supposed to help for fatigue - not when you have CRPS. With CRPS you get to a point where you are too tired to get into bed and go to sleep, and you wake up too tired to open your eyes and take that first morning breath. Instead of following normal imprinted day to day functions, that you do not have to think about, like opening your eyes, getting up, go shower etc....you know think of every little action for a about 5 min before you actually do it. BUT sleep/rest is not only there that you can have more energy, it is also there to help your body to heal it self. So even if I feel tired, my hand feels much worse if I had a bad night of not sleeping.
• Medication - well as I said before, none that helps for pain, BUT at least it helps to prolong the gaps at which the messages are being sent to my brain
• Exercise - I know what it is supposed to do...I have yet to get myself to that point where I can actually start with it.

I can go on, but what I want to show is that every treatment, every coping skill has its place - you just need to find out which belongs where for you. It is not a one-treats-all kind of deal. BUT if you ain't gonna start somewhere, then nothing is going to work (help) for you, as there will be nothing to work. I cannot drink water from the tap, if there is not water in the tap. I cannot say that Mirror Therapy does nothing for me, if I have never tried it before, or that physiotherapy is too much to handle, if I have never had any.

Of course there are things like SCS that I have not yet tried, simply because I am not ready for that yet, and don't think I will be for a long while. A number of the other stuff helps, and if it becomes too much I go for physiotherapy or deep pulse massaging or speak to a doctor or therapist. Sometimes a combination is what I need, at other times one single thing is enough. I need to learn to read my body. Don't get me wrong...NONE of these things takes away the pain or burning or will ever take away CRPS. What it does help is to make me less sensitive and more able to manage the pain and burning. And that alone is a major win in my books.

Life is for the Living!

Often in life we have these annoying little "CRPS-like" things in our lives that we know we need to overcome or get rid of. Unlike CRPS it is often possible to overcome or get rid of, but we need to work at it. According to science it takes between 18 and 254 days to break a habit, and usually it is easier to do so when you work on forming a new more positive habit in its place - like rewarding yourself. Again, unlike CRPS, we do not have to live with the same sin or bad habit day in and day out. We can choose to change. We can choose to break the cycle. If you think it is tough, then you don't know what tough is. A lot of CRPS warriors wish that they can break away from CRPS, that they can be healed. Unfortunately CRPS does not work that way, but they still fight the battle everyday to ensure better life expectancy for themselves. So looking at the greater scheme of things, that little sin, or that little habit or that little "secret" that you cling on to, that you feel that you cannot let go because it is too hard...is really not so hard if you really want to let go of it. 

My wife has been suffering with SLE for 21 years, and had to make a lot of life altering adjustments and sacrifices in order to try and minimise the pain and to live healthier. She will never be free from SLE. I have been living with CRPS for more than a year, people like Matt and others for 9 years and longer. We will never be free from CRPS. Yet we can still choose how to live our lives despite these diseases. And the things that we do have control over....we can choose to hold onto those root fires, or let go of them. Life is too short to hold onto crap that prevents us from living. I have held onto anger and resentment towards my brother for so long that we have not spoken in 7 years, and you know what I realised in this past year battling CRPS? 

1. I had the power to free myself so that I can focus on my health and deal with CRPS, by forgiving him; 

2. He probably does not care about what he has done to me and don't even think about it - probably think he was right all along - which caused me to imprison myself unfairly for so long; 

3. It is his loss, as he would have enjoyed my kids so much, especially as he could never have sons of his own, and especially Liam (who he has never even met), that loves sport so much.

Don't let LIFE pass you by because you failed to let go of things that were holding you back. I can not get rid of CRPS. I can not undo CRPS. But I can look forward and I can do things that enables me to deal with CRPS much better than a year ago. Yes, some root fires in our life we may not be able to predict or put out, but some ash in our lives we certainly can, if we are willing to try.