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.