Running Your Marathon

Nobody said that running that marathon that you signed up for was going to be easy! As you hit the halfway mark your body begins to give you all the different signs that it’s being pushed to its very limits. Your legs begin to cramp and get sore, and your heart and lungs pick up speed in trying to supply your body with the oxygen that it needs. The more you train and prepare your body the less these things will affect you. Ok! So I’m sounding like some type of an expert! I’ve only ever run one so-called marathon in my life and that was a 10k when I was 16. Does that even qualify as a marathon? Lol! I hadn’t prepared at all for the run, and being the (know it all teenager I was), I drank two raw eggs figuring that would give my body the energy it needed.

So how is living with chronic illness compared to that of a marathoner? The relationship is through how you prepare mentally and physically. This might seem like a strange comparison but hopefully, I can outline things well enough that you can see the point I’m trying to make. The more I started comparing the two, the more I started to see similarities between running a marathon and living with a chronic illness. My hope is that you to see the comparison, and in some way take away pieces of it that might help in your own journey.

There are a lot of different ways that a marathon runner prepares for or even runs the race itself. There are three however that I really want to concentrate on in this piece today. Those are incorporating mindfulness strategies, finding a distraction, and building a support network. All three of these areas cross over from running into the world of chronic illness that we live in.

Incorporating Mindfulness

A runner practices what is called mindful running. This is where they connect their breath to their bodies. Don’t ask me about the mechanics involved with this! Although I think I can pretty much figure that out. Lol! When the two are combined performance is increased, injuries are prevented, and the experience of running is enjoyed more. How anyone can find running enjoyable I’ll never understand!!!

So when it comes to chronic illness this same concept of connecting breath to the body is used just for different reasons. In managing my chronic illness I apply mindfulness strategies such as breathing and biofeedback to help manage my symptoms and my pain. These breathing exercises help to regulate my nervous system which is a big part of the problem. They help me decrease flare-ups and help me balance out the other symptoms. In other words, like the runner who’s performance is bettered when they to use breathing techniques my quality of life gets better when I’m using them.

Finding Distractions

As I mentioned before I don’t have any experience as a runner and probably never will because of my CRPS. However, you don’t have to be all that smart to figure out that there can be physical pain associated with running. Most runners will tell you that they have to find ways to distract themselves from intense physical pain. After doing some research I discovered a runner who encourages his athletes to play a game called “One Shirt at a Time”. The basic idea of the game is to look out in front of you, find a line of runners, and count them. Then you start reeling them in or passing them “one shirt at a time”.

Just like a runner who suffers from physical pain, a person living with CRPS has to manage intense chronic pain. So you need to find ways to distract yourself so that you don’t focus on the pain. This is just another tool in my toolkit that helps me manage chronic illness. For me, that means getting absorbed in a hobby like photography. My love for photography helps me take focus away from the constant pain and try and direct it somewhere else. It doesn’t mean that I will be pain-free. The point is that this is all about mental attitude and the ability to take your mind off of the pain.

Building A Support Network

In both running and living with CRPS building a support network is important. When a person runs a marathon often they have friends and family to help them along the way. They might even be from within the running community that they may belong to. They place themselves at various places along the route and of course, show up at the finish line. The support along the way is a constant encouragement and can be the motivation that a person might need to get them through difficult times or just simply to the end of the marathon.

Like a runner, a person living with CRPS has to build a network of supporters as well. Again, this might be through family, friends, or through the chronic illness community. Even though the support might be shown in a very different way, the principles of encouraging and motivating stay the same. This is yet another tool that is vital if I am going to manage my illness. Whether its support from family or an online community of some type. That help becomes an important part of getting me through those hard moments when things seem next to impossible.

In Conclusion

Taking on an illness such as CRPS can very much feel like your running a marathon. There are times where you wonder if you will ever get to the end of the race. Both physically and mentally you push your body to its very limit just as a runner does. As you get further and further down the road on your run your body begins to tire, and your urge to give in can get so much stronger. Using these three simple tools help me keep placing one foot in front of the other. Am I going to reach the end of the marathon? There isn’t a doubt in my mind!

Been on Hiatus

Hi all! Chronic illness decided that it was going to unleash its fury on me for the past few months. So I ended up taking a break with my writing. Along with other things medications have made writing difficult for me. So instead of adding more stress into the mix, I decided just to take a little time away. Now its time to get back at it!

I don’t have any awe-inspiring messages for you. Although I wish there was! Lol! If I can manage to put something together that has any form of a message at all then I’m doing really well. My writing isn’t on the NY Times Best Selling list and it probably never will be. I write for the simple reason that it helps me express everything that I’ve had to walk through on this journey. Most of all, however, it allows me to share with so many of you who might be on a similar journey.

Okay! So the sharing side of things has been lacking a little lately. Taking care of “me” has to be the priority right now though. That might mean that I have to step back every so often when things get difficult. Things haven’t been easy over the last couple of months. The word “complex” would be an excellent choice of words to describe my health right now. So much so that there are days that I just want to wave the white towel in surrender. Although I refuse to ever do that!

Some days I just wish I was off on my dream vacation to Bora Bora! Relaxing in my glass-bottom hut watching all the fish swim underneath. Unfortunately, the closest that I’ll get to tropical fish swimming right now is one of those large fish tanks they often have in the waiting rooms of Dr’s offices. Lol! It is ok for a person to dream, isn’t it? With everything that’s going on right now, sometimes my mind just needs to escape and go to its happy place.

As I mentioned, things have become more complex with my health since May. Honestly, it has caused me to struggle a bit at times. Is it all related to my CRPS? At this point, I really can’t say because I’m still trying to figure out the new issues that I’m dealing without. So that will be an update for another time. Right now I’m feeling frustrated and run down by all the waiting and the lack of answers. In the meantime, I try to stay hopeful that those answers will come soon.

At times like these when emotions can get out of check. It’s a good time to stop for a second and take a look at the things that are going on inside. Kind of like when you take your car in for its regular yearly checkup! You have them check the oil, top-up fluids, and do any regular maintenance. With all of that, however, the mechanic goes a little bit further with the things he’s checking on. On the outside, everything might appear to be working fine. Until he digs a little bit deeper into the engine where they sometimes find those hard to diagnose problems.

Checking on how I’m doing emotionally is something that I know I can do a better job with. I have to be honest. Sometimes it’s just easier to push my emotions aside and say I’ll deal with everything later. Except for the fact that I often forget about the later part. Then I find things can build up over time and those small issues become a little bit bigger. In an effort to head that off today, I’m trying to deal with my emotions and tell you that I’ve been really frustrated lately. It would just be so easy if there was a switch to turn off all the negative thoughts that start invading a person’s mind when we go through things like these.

It’s like there’s this intense chess match going on in my head between positive and negative. All I can do is hand everything over to God. On more than one occasion He’s helped me get through some pretty tough times. Once again this is another area that I could do a better job with. I know that I can put my trust in God’s hands to help me with anything! However, sometimes the things going on around me cause me to get distracted and I forget to have that simple conversation with Him. It isn’t difficult! Yet we get so caught up in the day to day that we forget or make excuses for why we don’t.

Slowing myself down for a minute and grounding myself in what I know is true and can help me the most is what I need right now. If there’s any message at all its that I need to have that conversation with God and to ask Him to help me with any of the frustration that I might be having a hard time with. I know this post doesn’t have a lot to it but I’m just taking the opportunity to share with all of you how I’m feeling inside. A simple message is sometimes the best!

Facing Adversity with Faith

 
As most of you know from my post a month or so ago, that I have been fighting through some increased pain. To say it’s been testing me in every way that it possibly could is an understatement. Would you believe that I’ve written this piece three times, and every time I am stopped by a mental block of some type. So once again CRPS has decided that it was going to rear its ugly head like only it knows how to do, forcing me to wage a war against it as always.
Back in October I battled through one of the worst flare ups I’ve had in probably ten years. The pain quickly intensified and soon I would find myself headed to the ER, unable to control things any longer without help. Certainly a harsh reminder of how this rare disease can unleash an attack at any moment. Always waiting for an opportunity to defeat you!
Living with a rare disease you go through some days and nights that are going to be the fight of your life. This particular evening was no exception. The battles are never easy to navigate through and difficult for the entire family. However we know that with each situation that we face that God arms us with a strength and power from within. It isn’t a question of if we will win but when we will win this war.
On nights like these naturally your mind becomes filled with thoughts of fear, doubt, anger, sadness, and a host of other emotions. If you know me at all through this blog though, then you know that this is where I begin to speak out through prayer. We pray for peace of mind, wisdom for the physicians, strength and above all healing. Why! I guess because I’ve been through a lot of uncertain situations in the last thirteen years with CRPS, and over that time I’ve seen a lot of answer prayer during that time. This particular night was no exception.
First of all you have to understand where things were at up until that point of the night. When the pain got to be too much I asked my wife to take me to the hospital. Before leaving I said goodbye to my two girls whose strength through all of this reduced me to tears. Instead of being sad or upset by seeing their father in such pain they stayed strong and prayed over me. An answer to what I believe would be the first of three prayers this night.
 When we walked in the doors of the hospital it seemed as if it was going to be one of those nights that too often those of us with rare disease face. With lack of education and understanding of CRPS you often come against obstacles within the medical community. Sure enough this is what we were met with upon arrival at the hospital. We spent the next few hours wondering if this was going to be how the entire night unfolded.
As we waited to see a doctor my wife and I tried to find humor in being laid across a bench at the entrance to emergency because I couldn’t stand or sit. She tried to find ways to make me laugh or ease my mind as we faced this difficult situation together. At a time where I should have been filled with fear and so much more inside there was a peace.
After finally being taken to a bed what happened next was what I believe to be another answer to prayer. Of all the ER physicians on shift I was seen by the one who was familiar with and knew the treatments related to CRPS. What you need to understand is that a lot of physicians don’t know much about the disease. She made some adjustments to my meds and ran a few other tests but above everything else my pain level was back at a manageable level.
Why out of all the physicians that were on staff that night did I get the one who had the knowledge on CRPS?  Why didn’t fear consume my every thought that night? How is it that my family stays so strong through such trials?  When we declare God’s word out loud then something very powerful happens. So I absolutely think that by doing this we had an answer to prayer. Looking back at things now it is very clear just how much God was doing through the course of the night.
Look! I’m not going to hold back in any of what I am trying to say. I only hope you understand what it is that I’m trying to say. We need to be bold and go after those things in our life or situations that we face. We do that by proclaiming the word of God over them. If we do that then we will see amazing things happen in our lives.

 

Hi everyone! I know its been a while since my last post and so I figured I better get something up. That’s if any of you are still reading this blog! Today is really just an update on what has been going on. In Sept things were busy with a couple of speaking engagements and a week-long trip to Ottawa involving advocacy work. While in Ottawa for that work an opportunity arose to speak with representatives from both the Liberal and Conservative Governments in regards to Bill C-81 the Accessible Canada Act. This was a real privilege to take part in and I had to ask a lot extra of myself in order to do it.
In October I started experiencing a really bad spike in pain which ended up with me making a visit to the hospital. I have managed to get the pain under control however am still dealing with some unanswered questions. Pushing forward and not wanting this setback to derail me, in mid Oct I was asked to speak at a conference in Montreal. I was given the opportunity to share my story with researchers from the Society for Medical Decision Making. Another opportunity that you don’t get every day, and one in which I got to share on behalf of the patient/advocate with researchers from across North America.
After sharing my story a researcher attending the conference pulled me aside. She told me that the highlight to her week was listening to my story, and that it opened her eyes to just how much rare disease affects an individual and their family. Then she thanked me for helping her to see things from a different perspective, and that this would change the way that she would do her research moving forward. At moments like these it doesn’t matter how many individuals are at the conference! Being able to impact just one person in the way that I did make it all worthwhile.
Arriving home from Montreal and with commitments out of the way I could now spend more time on self-care. A good thing because dealing with my health right now has to be my focus. At the moment I am undergoing different tests to figure out why my pain is spiking so much as of late. It all gets to be so much at times but you do your best to pull out anything positive you can. You will see in one of my next posts, that a great deal of positive can result from a these trials we face.
I’ve moved past the point of allowing anger, fear, or any of the negative that tries to creep in. In the thirteen years since diagnosis when it comes to research, treatments, or even cures there’s been very little changed with CRPS. Yet this tends to be where people fighting this disease get stuck and spin their wheels. People diagnosed get paralyzed in fear and start to feel helpless because of the uncertainty of so many different things.This is an area in my life where God has really broken down walls and not only fills me with hope but also helped me to keep moving forward with my life.
I’m not willing to let life pass me by! CRPS can throw everything it has at me but every time I’ll get up and fight stronger and harder never giving up. I guess in a lot of ways you can compare crps to the likes of learning how to ride a bike for the very first time. At times you are going to fall off, and so you dust yourself off and get right back on the bike.The hard part is in telling yourself to get back on. For me personally God is the one who lifts me back up every time I fall off, encouraging me to keep going and move forward with my life.
Like I said before there really is no message in today’s post. Although if you read between the lines maybe there is one I don’t know. What I will say is this. We know that as each of us walks through our own personal journey’s, that we might come up against some really tough situations. Right! It’s in my own personal opinion that we need to see them as opportunities to learn and grow from them. Even if that means not understanding the why’s of a given situation! God has really helped me to strengthen this area of my life. Empowering me to use those obstacles or tough times that I go through in a number of positive ways.
Not everything about this diagnosis has to be a bad thing. The person I have become as a result of being sick would require me to write an entire chapter of a book in order to explain. Yes chronic illness has radically changed my life along with the rest of my family. What I am choosing to see however are all the ways in which it has had a positive impact on my life!

 

 

Hi everyone!I know it been a while since my last post but I’ve needed a bit of a break. With family and multiple advocacy commitments it hasn’t left a lot of time for writing. Yet its such a vital piece in helping me to express myself with all that rare disease has thrown my way! Some days it just feels like such a never-ending battle and I’m not going to lie its hard. I wish I could explain what its like to wake up in the morning ready to take on a new day, yet feel as if you’ve had the “crap” kicked out of you already and it’s not even 9am!
CRPS is so much more than just chronic pain! Yet we focus on the pain because that is what we know and hear about most of the time when it comes to this disease. Pain, swelling, and a fire burning that I wouldn’t wish upon anybody are most definitely the primary symptoms affecting me. However there are numerous other symptoms that people affected by CRPS and other chronic illnesses suffer from, and we don’t hear or do enough about them. Things like stress, social withdrawal, irritability, loss of interest, poor concentration, easy tears, lack of energy, sadness, and depression just to name a few. So let’s just say that the pain side(or the ones we hear about most of the time) are “Part A” and the invisible ones(not heard about of enough) are the ones that make up “Part B”.
We talk about one side when really both sides come as a package deal. The articles that I read in relation to my own diagnosis CRPS, always seem to address issues surrounding the pain but don’t seem to go much further than that. I can’t help but think that if we spent more time on educating about both sides, that we would be so much more effective in how we treat these illnesses. The best example I can think of to back this statement up, is the high suicide rate that comes along with CRPS. What are we doing to address it? I get that patients are desperate and being pushed to their limits because I’m one of them! In order to effectively treat and manage however we need to bring both sides of the puzzle together. This is often where the problem lies.
There is no one reason for how or why things breakdown. We as the patient have a voice and need to do our part in speaking up! If we want things to change then it starts with us. That means talking to our physicians, members of government, and others who have an active role in our healthcare system. We can’t just remain silent and hope that everything magically changes itself. To create change then we have to take an active part in trying to make that change happen!
On the other side of things lets look at the healthcare professional or physician who has been highly trained to perform that roll to the best of his abilities. I decided to look up the definition of physician and this is what I found!
A physician, medical practitioner, medical doctor, or simple doctor is a professional who practices medicine, which is concerned with promoting, maintaining, or restoring health through the study, diagnosis, and treatment of disease, injury, and other physical and mental impairments.
The use of this definition isn’t to slight physicians in any way but rather to illustrate the point I’m trying to make. Most of what I have dubbed “Part B” is contained within the last two words “mental impairments” however it isn’t confined to just those two words. Just like with the patient there are opportunities within a physicians profession that could help in bringing together the necessary pieces.

 

Look! I could find all kinds of reasons for why these problems exist but that’s not the point of me writing this. There’s a problem and we need to start working towards fixing it. I’m not the expert when it comes to policy or the healthcare system but I am an expert in my own body and what I have had to deal with over twelve years since diagnosis. I can bring value to any conversation that happens, and can be effective in trying to bring about change!
If I do my part then I don’t think I’m asking for too much when I ask others to do theirs. I get that chronic pain, rare disease, chronic illness, or however you want to label it are tough to diagnose and treat. The fact remains that there needs to be a basic level of care and treatment that one has to receive! When you speak to others within different health communities they will tell you that those basic needs aren’t being met for whatever reason. That’s what needs to change.
So I’ll end with this! There are some of you out there who have crazy powerful stories that need to be heard. Those stories can be a huge part of how we can influence the change that needs to happen around us. Look at your personal journey as a way that you can inspire, motivate, and empower those around you. A simple story can be so powerful! Don’t be that mouse that hides in the corner but the lion that is loud and can be heard for miles around.