CRPS My Journey: Chapter 15 - Holidays vs Pain Management

May you have a blessed 2023 full of love, life and laughter!

The Holidays and Pain Management

Holidays are meant to relax you, to allow you to blow off steam and just chill. It is there to allow you time to renew your strength, spend time with friends and family and do stuff that you otherwise do not have time to do. Unfortunately, CRPS does not take a holiday. If you are lucky, you may experience some sort of remission as your stress diminishes. On the other hand, the symptoms may increase as you suddenly come to a standstill after being busy, to try and manage it for the past year. I think the golden rule is that, even when on holiday, you should never ease up on managing CRPS. You cannot let go of the meds and/or coping skills - whatever skills you are using. The easiest thing to do, is to relax so much, that you ease up on the managing skills, as you go into the relaxing mode. The hardest thing to do is to follow through and keep doing what you do to manage the pain. Now, more than ever, you should continue doing what you do to manage it and to pace yourself, when challenging yourself. You do not want to injure the affected limb, or over exhaust it. On the other hand, you do not want to set back, either the recovering process, or the pain management process by just letting go over the holidays. It is natural for your mind and body to switch off as you go into holiday mode. It is natural to feel that you need a total break from it all, even from your exercises and coping skills. But that is the one thing that you should prevent yourself from doing.

It is like someone that is used to eating healthy throughout the year, or gymming 3 times a week throughout the year. If they were to stop for 4 weeks and only eat junk food, and neglect to exercise, not even less exercising, but fully stop, soon they will have issues with their weight, stamina, fitness etc. Should they start again after the 4 weeks they will have to work twice as hard to just get to the point where they were before they stopped.

The other side of the coin is that exercise becomes like a drug for fitness junkies. I remember a friend of ours, that were an athlete for many years, had to stop running when she became pregnant. Because she was not able to run as she used to, she literally felt like she was having withdrawal symptoms. In the same way I have found that once I stop doing certain exercises, for example the mirror therapy, my pain levels and burning sensation starts rising again. Or the less I sleep, the more my hand flares up.

Never stop managing the pain. If you need to, switch it up, try something else, change the times around, do the exercises in shorter periods over more intervals throughout the day etc. Whatever you need to do to feel that you are relaxing more, but never ever stop. You have come too far to let CRPS take over again. Do not allow it to get the upper hand again. CRPS is sneaky like that, the moment you let down your guard, it hits you twice as hard. Managing your pain need to become like breathing - a natural part of your life. You cannot skip on this.

A rocky start!

So my holiday was off to a painful start. The first weekend started with a family get together. In a strange way CRPS tends to put you in an isolation box where socialising, even with your closest friends and family, can become hard for you. Take a natural born introvert, add some CRPS and some depression medication, that makes you even more anti-social, to the mix and you have a recipe for total awkwardness. And the ironic thing is that all that awkwardness is probably only in your own head - anyway, that is how it is for me. 

I went swimming with the kids, and as they were so excited that dad was swimming with them, the rough play started. Ooooh, ouch...we all know where this is headed. But as a dad, I could not be a wimp and chicken out, after all it was actual quality time with the kids. So rule 101 of CRPS...protect the hand at all cost, protect Buddy. And that is just what I did. Unfortunately, though, that left my neck wide open. And that meant kids trying to get me from behind and pulling me under the water, trying to make me lose my balance...still okay though, until both of them jumped on me from behind, from the edge of the swimming pool, onto my neck, hitting me right on the problematic disks. Yes, it was painful, but I stayed strong. Now I knew...protect Buddy and my neck...no problem (yeah right).

Eventually we got out of the pool and sat around the fire chatting. At some point during the afternoon I told Teresa that I am not feeling well, I was nauseous, tired, and just felt that something was wrong, although I could not put my finger on it. I eventually waved it off as being tired and later that afternoon, on request of Liam, went to play dodgeball with them. In hindsight...not such a great idea - awesome time with the kids, but hell to follow. One of the biggest problems wasn't dodging the ball, but throwing the ball, which I instinctively threw with my dominant hand, Buddy.

Later that night my arm just suddenly became inflamed with the worst imaginable pain. I could not lift or move my right arm at all, and I struggled to sleep that night. My hand was swollen and inflamed, and so was my arm, but the question now was - who was at fault, my hand or my neck, or both. At this point my arm felt like a bridge between the two - or a pain-conductor if you'd like. The first thought was to run my own "test" as the fear was that the CRPS might have spread. I mean Buddy was in the seventh heaven. He was not in pain on his own, so for him this was a win. I, however, did not feel the same way.

 

Liam's juwelry box and Malan's kitchen board (painted themselves) for their mom

So as my kids were still busy with their projects for mom's Christmas presents, the easiest would be to try some of my power tools. The lightest of them would be the jigsaw. The moment I started using the jigsaw, my neck went into what felt like a spasm, which shot through my arm. Yep, no further test needed - it was definitely my disks. Imagine me going to the doctor and the doctor asks, "How do you know it was your neck?" and me answering, "I did the test". "What test" the doctor asks. "The power tool test" - well I won't advise you to try this as it is not medically or scientifically proven, but it worked for me. It is almost like at school when we had to give the answer on how to test for water. I hit a total blank on that question so I wrote, "Drink it - if you live, it is water, if not, well then it was not water". At least I got a mark for creativity.

Sigh of relief though that the possibility now existed that the CRPS has NOT spread. But this still left me with the excruciating pain that eventually lasted for 3 days, before it started to ease up. I think the worst part was that, as my neck projected pain down my arm, my hand retaliated by reflecting pain back up my arm. After doubling up on pain meds (which I probably shouldn't do) for my neck, and taking suppositories (which I hate and never take - at this point however the pain outweighed my discomfort of taking suppositories), the grinding bone pain started to subside after 3 days, although not fully, and I was able to feel the "normal" muscle pain and stiffness which was to be expected from being unfit.

My arm however had to heal as I still had a lot to do before I could go on holiday. With stuff at home that needed to be done, as well as projects that had to be finished and Christmas drawing closer, there was not much time for self-pity. Stuff had to be done, so I had to pace myself in doing so. At least I was wise enough to give my arm time to heal somewhat, before starting to challenge my hand again. But that is the thing with CRPS, or any similar chronic illnesses, after a year of battling with my hand and getting to know, and learning to love my hand again, I was able to read certain signs and getting to know my limitations. Unfortunately, that also meant that for a day of challenging my hand to do stuff that it did not like, I had to be prepared for a day of excruciating pain where I could not open my hand. That was the reality of the situation that I had to deal with every day, and still do. It did not mean that I did not enjoy doing those things, but it did mean that my hand hated the fine motor skills that came with it. So instead of finishing something simple in 30 minute's time, it would now take me anything from 2 hours to a full day, with at least a day afterwards of no usage of my hand at all.

 

Update on side-effects

What about my "issues" with the medication and loss of emotions? Well I have been placed on higher dose of Tegretol in addition to the Cymgen. Again the idea is to see how I react on it and whether it works better for me than the Cymgen does. Although I still do not know how I will be able to see if it works better, while I am still on the Cymgen as well, I do experience a new type of "emotion". So the emotionless factor is still there with the whole "it is what it is" / "whatever" attitude, BUT on a "lighter note" - if that makes sense at all. I do feel a bit more open headed, which is a strange feeling...feeling more light headed while still feeling indifferent is quite different from being indifferent and not being able to show any emotion at all. It does feel good however not to feel dead inside the whole time. So yes I feel less dead inside, although I still feel indifferent to life events. Where this is heading in the next few months, we'll have to wait and see.

 

SLEEP, REST, REJUVENATE

We had the privilege to break away again at the beginning of the new year to my parents’ place at the beach. Ten days of total bliss. I can't remember when last I have actually slept like I did at the beach house. The first few days my hand flared up a lot, probably from suddenly coming to a standstill. No work, no projects, no work to be done at home...yes the kids never stop...but for everything else, there were no way of doing things that I would have, if I were at home. Which just made me realise again how important it is to keep on going, and although you need to take a break at times, where you fully shut off from everything, it is not wise to shut down completely though - BALANCE is always key here. You have to break away from the normal and relax, but keep yourself busy with something different, out of the ordinary day-to-day routine. 

Which also makes me realise the importance of, if at all possible, taking more short breaks during the year where you can shut off, either fully or partially, to give your body, mind and spirit time to recharge and rejuvenate. Remember that fighting CRPS is a full time battle. It is something that drains your energy. It is something that you do when you are alone, and when you are around people. It is something you do when you have a rest day and when you are working. When you are at your busiest with work, projects, family stuff etc. you are doing it, and when you are alone reading a book, watching tv, going to the beach, or whatever, you are still fighting it. So somewhere, somehow we all need to have that break where we can shove everything else aside in order to focus on rest, so that we can renew our energy, but also so that we can fight another day.

Anyway, coming back to our breakaway, yes the first couple of days were rough, and I did not sleep very well as a result of the pain, but then I think Buddy started to realise as well that this was not a new threat, but rather for his own benefit. And he started to relax a bit and became more tolerable. And so he allowed me to get more sleep, deeper sleep, REM sleep - something that I have forgotten the feeling of. Perhaps it was the smell of the ocean, or the calming sounds of the waves breaking onto the sand. It became easier to get up in the mornings as well...for the first couple of days any way. Although I still felt exhausted during the day, I adopted the mind-set of focussing on relaxing and a sense of just being. I forced myself to forget about work, which was a very strange experience, as through the years, much to Teresa's annoyance, this was the one thing that I could never achieve - to get my brain to shut down and totally forget about work. Normally I would be thinking of new projects and what need to be done, making preparations, doing designs, managing staff remotely etc. - this time it was different. I just put it all out of my mind, and it feels as if this whole side effect of the meds that causes me to be indifferent, actually helped a lot with getting me to this point. So brownie points to the meds and its side effects. (While writing this chapter, Teresa would check every time that I touched my laptop to make sure that it was not my work laptop, nor that I was secretly working on my private laptop...which probably also helped)

Looking back on 2022

The last year has been like living with a foreign student that spoke a language that I did not understand and had mannerisms and a culture that was different from what I was used to. But I survived, and so did he...and the best part being that we did not kill each other....not yet anyway! Looking back on 2022 there were a lot of cursing, tears, anger, frustration and fighting...but there were also a lot of laughing, joking, making amends, storytelling, learning and new challenges. Yes, there were a lot of bad days, but there were also good days, and one good day had greater value than 3 bad days combined. I have learned to live each day as its own, and to take the good with the bad. I could not do much to prevent the bad days, but I could treasure each good day. And I have not only learned much about my hand, but also about myself, and what I am capable of when I put my mind to it. At times I would fail, but nobody can accuse me of not trying, and as long as I am able to stand up every day and try again, I am winning. One such an example is a little project that I just finished - a wall clock. Buddy  worked painfully "well" for most of the project, until the end stages. Then for some reason Buddy and the router could not find each other, which became almost catastrophic for both my hands and the clock. This meant some alterations, but all in all I am happy with the final product.

Yes, I have lost a lot, but I have also overcome much. Nobody can say that CRPS is boring. Painful....Yes! Frustrating....Yes! Crippling...Yes! Life Changing...Yes! Cruel...Definitely YES! Boring...Never! It is always full of surprises, always challenging, always life altering! Perhaps not in a pleasant way, but I still have the choice of how I would react on it and what outlook or perspective I would have on it. Now it is easy to say that it is all bad and beyond your control, and a lot of it certainly is, but what I can control, is how I manage it and how I choose to look at it. My brain has changed the way it sees my hand and whether that will ever change again...who knows? I did not ask for it. Nobody has done it to me. It was not my decision. How I live from here on forth however is my decision. I had to learn to challenge my limits, and not limit my challenges. Which has not always been easy, but worthwhile. I also had to learn that there are two basic golden rules when dealing with something like CRPS: Rule 1 - Never give up! Rule 2 - Never forget rule 1!

CRPS & Faith

Faith wise? I found myself in a love-hate relationship, not only with my hand, but also with God. Initially I was confused, I was distraught, I was angry at God, I felt that He has abandoned me, that He has allowed something so horrifying to happen to me after all that I have sacrificed for the last 30 odd years that I have been in ministry. Although I loved God with all my heart, I was at a point where I wanted to hate Him. But every time that I wanted to be angry at Him, I wanted to be close to Him instead. And as soon as I started to move close to Him, I wanted to be angry at Him. It just again proved my own humanity. Although we at times still tend to be in this type of relationship, it give me peace knowing that God understands, and that He does not expect miracles from me. He is the Miracle Maker, and all that He expects from me is to trust Him to do what He does best. The one thing that I however never lost sight of was His love for me, and the fact that He never allowed this to happen to me to torture me or to punish me. Bad things sometimes happen to good people; just as good things happen to bad people. We live in a broken and sinful world. What we do in the face of adversity, and how we rise above the challenge however says more of our character and our relationship with Christ, than the challenge that lies before us.

The Boys

So earlier in 2022 I had to rush my youngest, Liam, to hospital. As you probably remember from my previous posts, I managed to build him a loft bed in 2021. He is a major Batman fan, so everything is Batman and Justice League themed. For his birthday he also received a Batman suit from his godparents. So Liam and Malan decided to play Batman in Liam's room. Whose bright idea this was, we do not know for sure, but we have a good guess. So the idea was that Liam would dress up in his Batman suite, get on top of his Loft bed and then jump over the rail onto the floor. Fairly easy and simple...you'd think. If you know Liam there is no such thing as easy and simple. His brain is always 5 steps ahead. 

So they (Liam) thought it would be better to stack 4 swimming pool tubes on top of each other, onto which he would then jump from the bed, make a summersault and land like Batman. But wait...that was not all...just using his bat suit and cape would not be enough. No it had to be spectacular. He had to get into his justice league sleeping bag as well, and with his suite on, in his sleeping bag, jump over the rail, onto the tubes, summersault and land like Batman would. You could straight out see that it was not going to go that way. We just heard Malan screaming to come help, while Liam was crying and holding his eye, with blood gushing, but still trying to be strong. Yep little Batman did not account for gravitational force and the harsh reality of when your body and gravity collides. The moment he hit the tubes, it was like jumping on a pogo stick. The difference being that there were no handles to hold onto and no safety mat or net to catch you. So little Batman bounced off the tubes which sent him flying through the air landing full face on the floor.

So we tried to stop the blood, got him out of his bat suite and I drove him to ER, which was quite full at the time. Being a head injury and a young child, they moved him up the list though. And there were a couple of head injuries, all orbital fractures. So here Liam and myself was sitting - Liam with his rugby shirt on - when a grade 9 girl came in. She was playing a hockey match and got knocked above the eye - 7 stitches. Then came a twenty something guy who was playing a soccer match. He got a boot to the eye - 5 stitches. Next was a teacher from a nearby town who was playing a rugby match and got hit hard above the eye - 3 stitches. And here sat LIAM in his rugby clothes, and the nurse asking, "Rugby injury?" - Nope, playing batman from his bed - 3 stitches above the eye. All I could do was shake my head...it was so funny.

So you'd thought that he had learnt his lesson, but NO! The next day I catch him just in time, with stitches and eye swollen shut, busy moving the trampoline from the grass to the tree. His mission...to jump from the treehouse, onto the trampoline. Yep with boys there is never a dull moment.

Which reminds me of Malan when he was quite younger, probably about 3-4 years old. He was, and still is, a major fan of How to train your dragon - probably have about 30 odd dragons plus the riders, movies, all the series etc. Anyhow, our cat Mufasa has this thing where he does exactly what Toothless do, where, when you hold out your hand, he bows his head and place it against the palm of your hand. So little Malan, somehow got it in is mind that, as Mufasa does what Toothless does, he should also look like Toothless. I was busy in the kitchen, when the next moment Mufasa charged by me, hissing and screeching, and all I could see was pink. Malan thought that Mufasa will look like toothless if he put a pink peg onto his tail. It probably took me ten minutes or more to get Mufasa to calm down enough so that I could remove the peg, not after my arms, hands and legs were bleeding so much that it looked like I was caught in an alley with about 30 stray cats. Needless to say, it took Mufasa the last 7 years to trust Malan again, and allow him to get close to him.

It is things like these that either make us old before our time, or keeps us young. Treasure these moments. May 2023 be filled with lots of laughter and innocent fun events like these, maybe not quite like these, but you know what I mean. Enjoy these moments, take time to relax, spend quality time with those that matters in your life and make 2023 a spectacular year. Never stop fighting, never stop living. No-one can tell you what you are feeling is wrong or how you should feel...You can choose however how you are going to react to those feelings and how you are going to live despite those feelings. You do not always have to follow through on feelings, take charge of you decisions.

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.