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!

Growing the CRPS Community

Today’s been one of those days where you try with everything you have to get things done but it just doesn’t work out! I got three quarters of the way through writing today’s post when my computer decided it was going to crash. There’s a reason that we are suppose to “save draft” and its most frustrating when you abide by that golden rule and your computer doesn’t do what its suppose to do! It really sums up the type of day I’m having but what can I do but laugh. There would have been a day where I would have let all of that really bother me. Ok! So it still really bothers me!

The last few weeks have been pretty hectic as I get closer to hosting CRPS Awareness Day! Last minute details are falling into place and I’m trying to maintain my health and everything that’s going on there as well. Nothing new on that front except for the fact that the revolving door of doctors appointments continues. I’m very lucky however to have a team of health care professionals working with me that care and are working to figure things out. I can’t begin to explain how it feels knowing that they are there for me when I need them the most. They have never given up on me! I always consider myself very blessed to have a team like this because I know this isn’t always the case.

This week I wanted to bring you a message that’s a bit different! I want you to read this today thinking about how important it is to support others around you who might be sick. This week I got the opportunity to spend some time with someone else dealing with CRPS who I’ve been visiting with from time to time. He’s fairly new to his diagnosis (within the last two years) and so he’s having to process everything that’s going on within this life changing event! Clearly he’s having a tough time in dealing with everything, and so I’ve been trying to go and just be that support to let him know that someone is there for him. Its a hard time for not only him but the rest of his family. For me its a flashback to the beginning and it brings back a lot of emotions that I had to experience at that particular point in time.

Then there was the person I spent some time on the phone with this week who’s been living with CRPS for the past nine years. She lives in a very small town and there’s nobody around her for support. She’s been unable to find a doctor in her area that understands CRPS, and therefore its left her feeling frustrated and desperate for help. If that isn’t hard enough her family isn’t  supportive making things all the more difficult. After a short conversation I told her I would ask my care team if they would contact her to see if there is anything they can do for her. I couldn’t offer a lot but the fact that someone was willing to listen and try and help gave her hope that she didn’t have before.

So why am I bringing up both of these individuals? Because just like the people I have in my life they need people that aren’t going to give up on them. Nobody should have to take on an illness such as CRPS or any other illness for that matter and be all alone. All this week I’ve had a word stuck in my head and that word is community! When you look up the definition of community it reads “a unified body of individuals” that come together. Isn’t that what we should be doing? Coming together and helping each other when we need it. Let me clarify what I mean. I’m not saying that we can be there in every circumstance or for every single person that we come across that’s in the same circumstance, nor am I saying that we don’t already support one another. What I am saying however is that we need to make the extra effort when opportunity presents itself, even if it means putting them in touch with someone else.

There is just something so powerful about community! When we’re there for one another a strong support system develops! I can’t say how important it is to have that! I live in a part of Canada where resources are minimal and support for one another is hard to find. So those friendships that develop take on a whole other level. That’s what I’m trying to get at! Its that one person who you reach out to that has nobody around them for support. Or the person who’s newly diagnosed and scared but doesn’t know what to do or who to turn to! Having walked through all of that it gives me a voice to speak into their lives. I can share my experiences and story to help them navigate their way.

So I’m going to ask you this one simple question. Have you reached out to someone around you that might be dealing with CRPS? If your part of a chronic illness community then I want you to think about what it is that makes being a part of that community so special. Take it one step further and think about those in the community your in. Were they welcoming, helpful, or supportive? Probably all of the above! Wouldn’t you want that for someone else? Some of you reading this understand exactly what I’m trying to say. Its a simple message but one that is so important and vital in us growing as a CRPS community. When we come together things start to happen!