Okay, so my break was a bit shorter than I anticipated, but that is the thing. As soon as I think this is going to be my last chapter, people contact me to tell me how much a certain chapter meant to them, and then asks me to continue as it gives a voice not only to myself, but also to them, as they are going through the same struggles as myself. Suddenly they do not feel alone. What they have struggled to express or get other people to understand - suddenly they found someone that knows and understands something about what they experience. I am so blessed to be able to use what is happening to me, to encourage others that are going through the same struggles, and to advocate CRPS to those who do not know and do not understand. Thank you to all my readers for supporting me in this way, and giving me the strength and the platform to be a voice for CRPS warriors.
Achilles heel
The
metaphor Achilles heel often refer to "a weakness in spite of overall
strength, which can lead to downfall". According to Greek mythology,
Achilles was a demi-god who was instrumental in the Trojan war. Because of his
enormous strength and invulnerability, he became the greatest warrior of his
time. However, he had one weak point - his heel. The story goes that his mother
held him by his heel when he was still an infant and dipped him in the river
Styx, so that he would become immortal. And as the story goes he became indestructible...except
for his heel, that would eventually become his downfall, as this was the only part of his body that was not wetted
by the water. During the Trojan war he was struck by an arrow (possibly a poisoned
arrow) from the Trojan Prince Paris in his heel, and he was killed. The only
vulnerable spot in his body, became his greatest downfall.
The story or legend of Achilles
made me think about life, and how we approach life itself. In 2 Corinthians
12:7 Paul talks about a "thorn in his flesh", his Achilles heel
if you will. Although Biblical scholars vary in their interpretation of what
exactly this "thorn" was, it is not so much the thorn that I want to focus on, as it is the
fact that he had a weakness or challenge that made him look at life from a
different point of view. Paul acknowledged his weakness or challenge, but did
not let it define him or prevent him from living life to the fullest. He used
his "thorn" to motivate and challenge him to be better, to live life
to the fullest. In the same way Achilles acknowledged his weakness, but again
did not let his weakness define or stop him from becoming the greatest warrior,
even though he knew that it may be his ultimate downfall.
In the last month I have lost a
number of people in my life, within days of each other. Two of these people
that I have lost were friends. They were those people that always saw the glass
as overflowing, even though it was only half full, or at times even empty. It
seemed that nothing could faze them or get them down. Ironically both of these
friends died due to complications of blood clots that they had. It came
suddenly, they got treatment, got better and then suddenly without warning were
taken from this life. Looking at them and the impact that they made in the
lives of the people around them, made me realise that we all have our Achilles
heel, that vulnerability that have the potential to be fatal - but how we live in
spite of that vulnerability and how we approach life and look at life in spite
of that vulnerability, is what makes the difference.
Achilles heel...we all have them. We can either acknowledge and embrace
it and let it motivate us to greatness, or we can give in to it, and let it
destroy us along with everything and everyone that we love and live for. CRPS
is my Achilles heel, for others it may be heart problems, or blood clots,
cancer or auto immune disease. The thorn or Achilles heel should not be the focus
point...how we react to it and how we use it to motivate us to live life to the
fullest is what really matter.
This one friend of mine, had a heart attack
a couple of weeks ago when a blood clot shot through his heart. The doctors told
him he was lucky. I spoke to him a week after, and he was full of life and motivation.
He spoke as if he was the healthiest person in the world. If I did not know
that he was in hospital, I would not even have guessed it. He had the biggest heart. He had this presence
around him when he entered the room. We still made plans for a chat over
coffee. He was so sure that he would be back at work the next Monday and
planned on showing me some new tools and machines that he bought and wanted to talk
about my blog, go to the golf range etc. A week later, he passed away unexpectedly
in
hospital after suffering a massive heart attack. How ironic. His big heart,
became his Achilles heel...and even then he did not let it steal life from him.
Out of his hospital bed, he was still helping and caring for others. He has
achieved greatness in spite of his Achilles heel. Roelof we salute you!
I often said this, CRPS does not define me. It may be my Achilles heel,
but in order for me to be able to move forward, I had to embrace it. That does
not mean that I am oblivious to the horrific outcomes of this disease, nor does
it mean that I am ignorant of the fact that I have a disability. A while ago I
was experiencing some remission. The last couple of weeks though, have been
hell. We are mid in our winter season. The snow on the mountaintops causes the
weather to drop to 2 and 3 degrees Celsius where we are. Buddy and cold weather
do not mix. I think this winter has had a far greater effect on my hand, than
last year's winter. Especially with the pain that is going beyond my wrist. It
is really tiring. To top it off I am struggling a bit with a head cold. So every time I sneeze or cough, it feels like a painful electricity jolt shooting from my neck down the arm and into my hand, causing excruciating pain an numbness in my hand. So it is either one of my discs that's not a happy chap...or I am turning into the Flash with electricity shooting through my veins. Pain is exhausting. However, I will not allow it to consume
me.
Even though I faced many challenges after being diagnosed, I still did not trust my hand enough for other specific challenges. More than that, I used to use my hand (and CRPS) as an excuse not to take certain risks in certain areas of my life. I was reminded a while ago of Peter that had to take the leap of faith and get out of the boat so that he could walk on water (Matthew 14:22-33). While the wind was blowing around him and the waves were crashing against the boat, he was able to walk on the water as long as he kept his eyes on Jesus - that was all he had to do. The moment that he took his eyes off Jesus and faced them towards his surroundings and problems that threatened his faith, he started to sink.
In much the same way, my hand has been like these waves crashing against the boat. I wouldn't take this risk, because my eyes were on my hand. Buddy became an excuse not to take certain risks for fear that Chucky may resurface and prevent me from taking on these new challenges (even though I have taken much more and much bigger risks in the last two years). [For those that knows the DC comics, it is much like killer Frost in the Flash Series - you can tell what we as a family is watching at the moment] So an opportunity came along where I had the chance to take said risk...and I did it. Yes I was hesitant. Yes my faith was shaken as I looked at the waves. But I went ahead and did it any way. Took my eyes off my surroundings and focused it on the goal before me. And although the outcome did not go in my favour, I am glad that I took the risk. I am certainly at a much greater space in my life, where I will certainly take more of these types of risks in the future. And who know what my future might hold. Perhaps it may be the beginning of a new chapter in my life.
After many years of painful TB, where he eventually lost his leg to the disease, the Poet William Ernest Henley (1849-1903) wrote the well known saying: 'I am the master of my fate: I am the captain of my soul.' He came to understand that the way that he saw life and prepared himself to face its realities, determined his future - not his disability, regardless of how painful and debilitating it was. He understood that you do not shy away from the waves crashing against the boat, but that you face them head on, and use them as a motivator in your life to reach the goals that you have set for yourself.
Although some are lucky enough, not everyone has the opportunity to say their good byes before they die. Live so that others may remember you, not only when you are gone, but now - in the here and now - as a living legend! Any person who can stand up to fight another day, despite the pain and exhaustion, and show the world that their lives still have great value, that they still matter, and that they make the world a better place because they are in it, is a true legend.
Reinventing myself!
I have
tried over the last year to change a lot of things to make it easier on my
hand, without taking away the challenges or the abilities. For example, I have
started to invest in lighter tools. I have found that with certain tools, for
example a hammer or a drill, it has become more and more painful to use these
tools, especially over an extended time, as they have become too heavy for my hand to manage. Often it is not only the weight or
size of the tool, but also (in the case of power tools), the power and
vibration of the tools. For example, the Jigsaw. Apart from the speed
setting on the orbital jigsaw, the unit powers the blade to move, not only up
and down, but in an elliptical cycle. This means it moves the blade slightly
forward on the upstroke and slightly backward on the down stroke. All of this
causes greater strain on your hand as you need to have a stronger grip and
concentration, than a handsaw for instance. You also have to account for
possible kickback, which can cause stress or trauma on your hand. Combine that
with a hand that has its own personality and you have a recipe for disaster.
The same with the drills. I
have found a lighter and smaller cordless drill than the one I always had, that
is much easier on my hand, and which in actual fact has got more power than the
older drill. Naturally there are certain tools like a grinder for example, that
you unfortunately cannot really get an alternative to, due to the grinding
force that it creates, but fortunately these tools aren't used that often. In
certain cases, I am able to use my Dremel tool for certain tasks that I
otherwise might have needed to use these tools.
I also had to rethink the use
of hand tools. So instead of using the hammer that I always used, I have found
different hammers for different applications, with much less weight, that can
do the same work (if not better) than the older tools. Smaller, more
lightweight tools, enable me to do more. It still put strain on my hand, and it
still challenges my hand, causing my hand to become tired, sore, burning with
painful days afterwards, but it enables me to do things that I otherwise would
not have been able to.
All these tools allow me to do
what I used to do before my operation, and more, while creating less stress on
my hand (not NO stress, but LESS stress). Yes, perhaps it takes me longer to finish a project, but I am doing it.
But I also had to rethink and
reinvent the way I used to do things. So for example I started to build myself
a proper but simple workbench, with a bench vice, which allowed me to be able
to start doing projects again. The next evolutionary event in reinventing the
way I do things, was to build myself a proper table saw - as I never had one, and always had to work with the jig saw or the circular saw and a made shift
table. But I did not want to just have a table saw, I wanted it to be
multifunctional. So I looked for a design where you can fit different tools to
it. So for example, the same table saw can be converted into a band saw, or a
router table, or to convert a planer into a jointer and so forth. This is still a work in progress and I am using mostly recycled wood, so it may not look perfect, but I need it to do the job well, in a way that I can utilise it, rather than winning a pageant contest. I had to find ways to do
projects in a way that I can protect my hand, while challenging him. This also
meant learning to work with gloves, the right gloves - gloves that are strong
enough to handle slipping blades - not only to protect Buddy, but also to
protect my left hand against Buddy. This was quite an adjustment, but I have
found a pair of gloves that does not leave a mark when you take a sharp
utility knife to it. It does take away a bit of the feeling and sensitivity
that you would have when working bare hands, but that is a price I am willing
to pay if it means that I am protecting my hands.
This has become a focus point for
me over the last couple of months, as I have started experiencing that the CRPS
might be spreading. Small things that I have noticed over the last couple of
months, that have become full blown signs in the last couple of weeks since we
are in winter. For instance, my wrist up to the middle of my forearm is
extremely sensitive to touch. Even my medical aid band or my sleeve of my
jacket, makes it feel like all skin is torn off and hot coals are thrown on the
bare flesh. as I am typing here, my hand, wrist and forearm is in excruciating
pain.
At last I have tried the hand warmer (Little Hotties hand warmers), and
although the heat helped, I could not stand the sensory irritation that it
created. These hand warmers keep warm for 10 hours, after which they are thrown
away, but the bag that it is in, and especially the corners irritated the
sensation part of my hand so much, that I had to take them out after a while. I have
tried them inside my compression glove on top of my hand, but the heat did not
go through to the inside of my hand. Then I tried them on my hand palm inside
the compression glove, and it felt like sharp razor blades or thin fishing line
cutting through flesh and bone. Perhaps a USB heated glove may help, but I am
still contemplating whether spending that amount of money on a glove - that may
or may not help - just to test it, is worth it. If it works, great. But if it
does not work, then I have spent money that could have gone towards medication
for example. So it is a catch 22, but let’s see what lies ahead. For now, I
still need to find a supplier in South Africa that do supply those gloves, as
most of the ones that I have seen is overseas. And then again, it need to be a comfortable material that will not irritate the CRPS.
What about the Rhisotomy? Does not seem
to have worked...again. Neck pain is still as bad as ever, arms are getting
numb, and whether it had any effect on rewiring my brain...well only time will
tell. For now, it does not seem that way. But I still have the coping skills
that I have built up over the past two years to get me through every day.
We recently took our kids ice skating. Buddy really did not like the
cold. I tried to teach both Liam and Malan to skate. Malan eventually came
right, but I think Liam enjoyed the falling on the ice much more than trying to
skate. Somehow he mastered going backwards and going in circles, but he just
could not learn to skate forward - too wild and hasty. But we had great fun.
That night I did not have much sleep, as both Buddy and my neck flared up really
bad - but it was "worth" it. There was a point however that both my
hands were on fire. I do not necessarily think that my CRPS has spread to my
left hand. Perhaps my left hand had a form of "Couvade syndrome" -
just instead of mimicking labour pains, he was mimicking the burning in my
right hand. But for now I am not too concerned about that. (we took them ice skating a second time, and this time Liam actually learned to skate)
Meanwhile, I have started to take on my
medical aid. I have gathered reports from most of my medical team (therapists included), as well
as all my test results, which I forwarded to them, stating my case, in the
hopes that they might cover my medicine, or at least part of it, under the
chronic benefit. Most of my medical team is on board with this and willing to
help. Might be a long shot, but I am prepared to take it as far as I need to.
If I succeed, this may be a win for all CRPS warriors that find themselves in
the same situation as myself. I will keep you updated.
CRPS and vitamin Supplements
The question was asked recently on one of the groups whether vitamin
supplements have any influence or effect on either preventing and/or
rehabilitating CRPS.
On 2 July 2021 an article was published online in The National Library
of Medicine with the following outcome:
"A total of 2026 patients of whom 632 males and 1394 female were
collected in our systematic review. During the entire follow-up period, the
occurrence of CRPS-I was evaluated in 1939 patients. Five of the six analysed
studies were favouring prophylactic use of the 500-1000 mg daily dose of VC for
45-50 days after orthopaedic or trauma care for prevention of CRPS-I. Only one
study found no benefit in VC supplementation compared with placebo to prevent
CRPS-I. Analysis of the literature suggests that a daily 500-1000 mg VC
supplementation may reduce the onset of CRPS-I in trauma of upper/lower
extremities and in orthopaedic surgery."
This was only one study, and the result
was that Vit C in high dosages might help to prevent CRPS-I after surgery...in
some cases.
There is a website called
https://complextruths.org/ which is aimed at CRPS warriors and helping them to
live a better quality of life. I do not think that the aim of this website is
to promote any "cure" for CRPS, but what they are doing is to look at
alternative and natural ways to bring relief to CRPS warriors, without taking away from medicine and coping skills. One of the
things that they look at is "Dietary Supplements for CRPS"
It is an interesting read, so I will rather post the whole article here
as is, than try and summarize it.
Dietary Supplements for CRPS
Treating Complex Regional Pain Syndrome with Dietary Supplements
Dietary Supplements should be added to every CRPS warriors armory against this disease. From fish oil, which is known to help against allodynia and hyperalgesia, to ginkgo biloba to help fight brain fog, and Vitamin D, which is depleted faster than normal thanks to the CRPS, your body needs vitamins more than ever now. Here is a list straight from our Board of Director's mouths to your eyes, and hopefully, to your belly's, to feed your systems. Whenever possible, try to buy Gluten Free, organic, and naturally sourced.
Many of the procedures we have listed here are FDA approved or are in pre-approval stated, but many are not, and are in circulation around the United States and around the world. We will note whether they are FDA approved (to the best of our knowledge) on the page, but if you know different please, share the truth with us in the comments and we will do our best to follow up. All treatments listed are treatments that are in an active state and are currently in production and being purchased by people with the disease. Our intent of sharing this information with you is to educate, inform and publicize what treatments are available to you so that you can make the best decision for you. If we have personal knowledge, or if our doctors have an opinion, we will notate that in the post, but otherwise, we try to stay unbiased and let the community speak for themselves.
Alpha Lipoic Acid
Several studies have found that Alpha Lipoic Acid (ALA) can help with neuropathy -- nerve damage --related to CRPS, reducing symptoms like pain, tingling, and prickling in the feet and legs. It plays an important role in improved nerve function, reduced inflammation, lower blood sugar levels, weight-loss, diabetes, slowed skin aging and other health conditions.
Are you looking for a safe, natural and effective way to relieve your chronic pain but don't want the "high" associated with Marijuana known as THC? CBD is rearing its head as the new non-drug (and legal) of choice in a town that has a lot to offer without the risk.
Cinnamon
Many people who suffer from the chronic, intractable pain of CRPS which causes joint and tissue inflammation, are turning to natural supplements to help control their pain. Cinnamon is just what the doctor ordered and Cinnamon is a natural spice which can easily be added to many of your favorite recipes or taken in gel capsules to get your daily serving.
Fish Oil Omega-3 Fatty Acids
Studies have shown that fish oil can slow the progression of neuropathy and help certain symptoms of CRPS such as allodynia and hyperalgesia. These studies show that anti-inflammatory properties are useful in reducing pain and discomfort. Its neuro-protective effects can help to stimulate neuron out growth.
Gingko Biloba is a top-selling supplement due to its long-list of cognitive benefits and well-known abilities to help fight mental fatigue & brain fog, increase cognitive function, improve memory, and increase mental agility to easily perform everyday tasks.
Green Tea Supplements
Green Tea is one of the most powerful antioxidant on the planet and is capable of stopping the unstable molecules called free radicals from damaging your cells. The positive effects on that it has on the brain and heart is just what the doctor ordered for your nervous system and circulation - the main systems impacted by CRPS.
L'Arginine Supplements for Circulation
L-Arginine is primarily used to increase circulation and blood flow for enhanced vascular function; including areas of the body like the heart, head, and eyes. Some believers that suffer from CRPS say that the longer they take it, and with CONSISTENT use, it can even take the edge off the burning nerve pain and it can actually help warm up ice cold skin temperature because of the increased blood flow.
Magnesium
Do you suffer from brain fog, muscle cramps, migraines, and nerve pain from chronic pain brought on by Complex Regional Pain Syndrome? That could be because CRPS causes nutritional depletion of many nutrients, minerals and vitamins due to the myriad of drugs to help us fight the symptoms of CRPS.
Vitamin C
High Doses of Vitamin-C after an injury have been shown to decrease onset on CRPS in some studies, which have shown that Vitamin-C can be used as a preventative, if used in high doses of 500mg, for no longer than 50 days, following an injury such as a wrist fracture.
Please note, that none of these types of food is a magic cure for CRPS,
but I do think that, seeing that the body is more than just flesh and blood -
as CRPS so clearly proves over and over again - it is something that every
warrior, not only CRPS warriors, can look into as a way to prolong life and
hopefully decrease pain to some extent. Again it is not a magic cure, and there
may not be one of these food groups or vitamins that bring any relief to you,
or perhaps it inflames other medical issues...or perhaps it may just be the
thing that you have needed all along to enable you to live a better, easier
life with CRPS. I know in my case, Cannabis (CBD) is not an option as it increases my pain, but for others it may be helpful.
When I think of my dad, I remember how he always taught us as children
that a lot of medicine has its origin, or its roots (pardon the pun), in plants
or in nature. Things like Aloe Vera has long been used in its original form, before
being "branded" in the form of pills, creams, drinks and so forth.
Things like Cannabis, sour fig, African Wormwood, Buchu, Rooibos and many more
were used through the ages in various forms for their natural anti septic, anti-inflammatory
and medicinal properties. I remember how our house used to smell of buchu vinegar
(used for sprains), or African wormwood or buchu (boiled as a tea), fresh
rooibos tea (made from freshly dried stems).
Perhaps it was a much simpler time, without the fast foods,
preservatives and packed schedules of today. Having a telephone on the wire and
not cell phones and laptops made that we were less stressed. If you missed a
call, that was it - you missed it, and probably did not even know it. People
talked to each other, instead of sending emoji’s. Your actual face was the
emoji. Families had dinner together, without the tv. In a sense, the world made
more sense back then. Yes, a great deal of the diseases that we have today was
misdiagnosed because of a lack of knowledge, but I do think that we lived
healthier lives, that helped us to manage a lot of these things much better.
Many of us probably lived with these diseases without knowing it. And because
some of these diseases was not known, treatments were not readily available, as
modern technology to diagnose these diseases and develop these treatments were
still experimental and in development stages. But then there were also those
diseases that doctors already knew about, like CRPS, that are so complex, that
proper treatments are still being developed and re-evaluated and tested. This
is not always a quick and easy progression.
Yes, I do use medication, but for a different purpose. But the
medication alone is not enough. All of these coping skills, mirror therapy,
re-inventing myself, taking in vitamins etc. is needed to treat something so
complex, that it becomes somewhat more bearable for me and enables me to push
my limits. Lets face it, we all need a little bit more sun and natural vitamins. In the next chapter we will be looking at spoon therapy. Take care.
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