Today has been one of those days where your body reminds you that your still sick! So sometimes you just have to know when to give up and let your body rest. The last few weeks have been more than challenging and its times like these that make this illness so challenging. This won’t change how I face my disease just slow things down until I regain my balance! What’s really important right now is to rely upon my support system that’s in place. Family and fellow advocates are right there if I need them and I’m so lucky to have them there for me.
In recent weeks I’ve been having a lot of problems with not only flare ups but brain fog has been really bad. I have to admit that time for self-health and healing hasn’t been what it should be and I need to get things back on track. After eleven years I’ve learned really well to recognize when somethings not right, and that I need to get back to the basics of managing this illness. It’s a reminder that as much as quality of life has improved that I’m still dealing with a beast that can derail you at a moments notice if you don’t take care of yourself!
Chronic illness doesn’t take time off and so you have to make sure that your staying on top of the things that control the symptoms! Especially with an illness like CRPS where something so little can set off a major flare up. It seems as if CRPS has decided to turn things up a notch so I need to turn up my defense systems as well. That means a whole lot of self care and then turning to the biggest defense system in my life in God. I can’t say enough how much strength I draw from Him when things seem impossible! In fact I don’t often say enough how He’s helped my family and I through this journey.
Am I having a rough go of things right now? You bet! I feel at times as though I could crawl out of my skin. At times my nervous system goes crazy and the emotional swings I’ve felt in the last few weeks have at times been really hard to deal with! If I could tell the gerbil in my head to stop running on his wheel then I would. What doesn’t waiver however is my positive spirit! You see in order to fight this illness I need a small army to go to all the different areas that are at war in my body. Just like an army mobilizes various units to go fight in various regions or areas of a war, I have to do much of the same with my CRPS. I send one unit to deal with the pain and another to deal with the mental area of the fight. Then lets not forget that I have to send a unit to fight against my nervous system.
Mobilizing an army in this way takes a born leader one well versed in strategy and the ability to get the job done. God is that leader to me! His ability to strategize and bring victory is unmatched! When I’m battle weary He sends help to the areas I need provision in order to allow me to regain my strength to continue on. You have to have trust and confidence in a leader, even though sometimes the battles that you fight and where you find yourself being led don’t make sense. I have to have complete faith that God knows how to take on the enemy that’s trying to wear me down and win this battle. Your best line of defense is being under the leadership of someone who knows how to outsmart the enemy!
So with that being said I want to leave you with this one thing to think about!
2 Samuel 22:33-41
33It is God who arms me with strength and keeps my way secure. 34He makes my feet like the feet of a deer; he causes me to stand on the heights. 35He trains my hands for battle; my arms can bend a bow of bronze. 36You make your saving help my shield; your help has made me great. 37You provide a broad path for my feet, so that my ankles do not give way. 38I pursued my enemies and crushed them; I did not turn back till they were destroyed. 39I crushed them completely, and they could not rise; they fell beneath my feet. 40You armed me with strength for battle; you humbled my adversaries before me. 41You made my enemies turn their backs in flight, and I destroyed my foes.
Who do you want leading your battle as you fight through adversity? Mine gives me all of this and more!
Its been a rough go lately dealing with extra pain but somehow I manage to keep moving forward! A few weeks ago I traveled down to Huntington Beach to attend the Global Genes Rare Disease Summit. The stress of the travel was hard on my body and although I had to fight a lot of extra pain it was well worth it. There’s a trade off that comes with living a chronic life and I know there are others of you out there that understand what I’m talking about. Its all a part of me moving forward with my life and not allowing your illness to take all control!
I arrived home from the Summit changed but in a really good way. When your sitting beside a person who is one of only five people in the U.S. that has a rare form of cancer things are suddenly put into perspective. There was unique story after unique story each one impacting me in a different way. It was impossible to take away just one thing! If I felt inspired to do something about CRPS before, I left feeling as if I had to do all that much more! When I looked at the work that some people had been doing to raise awareness for their particular illnesses, I had to ask myself what am I really doing? At the end of the weekend we all went back home having gained 500 friends and a wealth of knowledge to take back to our communities.
I really feel I was able to make some strong connections and tap into some resources that will be useful here in my own community and province. Although its hard at the best of times to battle on with chronic illness I believe God gives us an abundance of strength when we need it the most, never giving us more than we can handle. With that being said as I left the conference knowing that I needed to be stronger in my advocacy efforts I came to the conclusion that no matter what I face or take on, God will provide in every way I need Him to along the way. I don’t want to be that person who says “I can’t” just because the path in front of me looks too difficult. I need to remember that God is guiding this walk and that when I’m lacking clarity or vision that I’m to look towards Him.
As I prepare to have the first ever CRPS Awareness day here for the Province of Saskatchewan I can feel my legs begin to tremble just at the thought of having to put this one day event on. Some of the people coming to this event hold important positions within our community and even our province. So sometimes I question my qualifications or I tell myself I’m way out of my league when it comes to taking this on. However nothing could be further from the truth. My qualifications speak for themselves having lived this illness for the past ten years! I need push forward because I have a testimony within my story that might just help one person find the care they need, or cause one Dr. to stop and think about how they diagnose and treat a patient. It might even be that one person from our government who comes to the event and is impacted. Leading them to say that we need to work on policy and legislation. Let me be very clear! All I’m saying is that by standing still I won’t create change!
Fast forward two weeks because this post was suppose to be up already but there’s just been too much going on and not enough time to do everything! CRPS Awareness Day went ahead this week and was a huge success! I’m not going to lie when I say I was a little worried that I wasn’t going to fill seats for my key note speaker but we were at full capacity and I think a few people other than patients walked away better informed of what CRPS is. The next day I was asked to speak at another conference and share my story with a group from within our health district. As much as I was nervous about getting up and doing it I knew I had to because we need to spread the word and make people listen.
Its not about being qualified! Stories bring with them power to change, whether it be my story or your story or someone else’s! It’s only when we move that we make a difference but you have to ask yourself are you willing to do it? Through sharing my story and all that has been thrown at me over the last ten years it is my hope that I will make a difference. All I can do is hope and leave the rest up to God!
Today I wanted to write something to encourage all of you out there who are struggling right now with your diagnosis. It might seem as if your world is spinning out of control and you might be asking yourself what do I do now! I want you to ask yourself a question. Are you happy? When I saw this video I said to myself its a perfect fit for what I want to talk about because it really says it all! Through all the pain, anger, and fear you need to get back up and fight. In some cases it isn’t going to be easy but with Gods guidance anything is possible! As the video says allow your heart to start beating again! Take baby steps one foot in front of the other and you can get there!
A word of advice! I really wanted to figure out where this journey was taking me but understand now I just needed to take the ride. I’ve turned that over to God and it’s brought peace in my life. I’m learning that bit by bit Gods greater plan is unfolding for my life. Sometimes the battle to get your mind and body back in the game, is tougher than facing the illness itself. When we get sick we just want everything to go back to the way it was. We tend to focus on the way things were and it can be really easy to become bitter and angry because we can’t have our old life back! Have you stopped to think for a minute that maybe this journey your on is for a reason. Maybe God has a plan for your life with bigger and better things but first you have to walk through some really tough things!
To often we listen to all those tiny voices that we hear in our head and it stops us from shifting the car from park into drive! I’m often reminded of all those episodes of the Flintstones I used to watch as a kid. If you don’t remember it then it was a cartoon set in the Stone Ages. The cars they drove in the cartoon were foot powered, and Barney and Fred would constantly forget to move their feet to get the car going. The running joke was why isn’t the car going anywhere. So the parallel I’m trying to make is that you have to keep your feet moving, if you want to stop yourself from getting stuck in the mud.
It might take some time to figure things out but don’t believe for a minute that your stuck where your at! You can’t be scared of running up against obstacles, or the times of frustration that you will run up against while on this journey. Look for the lesson from within each of those challenges, and if there is one learn and grow from them if you can. Some of those hard times that you face as you walk this journey might just change how you think about things from the past. Or it might open your eyes to new things that you never thought possible. Never in a million years did I see myself organizing a CRPS Awareness Day in our province and taking a roll in advocacy the way that I am. That being said I couldn’t feel better about what I am doing and the small roll I’m playing in trying to raise awareness. Advocacy has fueled a fire in me that wasn’t there before. Its fire to help people in whatever ways I can.
I’m not trying to tell you what to do in your situation. Absolutely not! I’m just trying to point out that there are things in my own life over the last ten years, that I’ve had to work on that I didn’t see coming. Ones that are taking me down a different road and as this happens I’m seeing happiness return. Do I know your situation? No! Can I relate to your situation? Yes! I do know that if I had stayed the way I was ten years ago then I wouldn’t be happy. I wouldn’t for a minute think of trying to tell another person what to do with there life and I never will. What I will do however is share my story with others and encourage. I really believe that when we support each other in these ways that we gain perspective. What you choose to do with that is your choice!
This is a simple message that I’ve given on more than one occasion but I think its important to keep giving. Its important because if I don’t remind myself personally every once in a while of these things, then I become stuck or my vision can become clouded. So I would hope that you see things in the same way. If your reading this today I hope it helps shed some light on questions you might have in your own journey!
Its been one of those weeks where the needle on my gas tank has been running on empty! My pain level has been hard to manage and its taking everything within me to get through every day. Some days it feels as though I wake up and I just don’t have anything in me to give. I ask myself how I’m going to find the energy I need to get through that day. This is a fight I live day by day and some days are easier than others. Sometimes my tank is running on empty and others its full and getting great mileage. So like when you get into your car to go to work, I often find myself checking my gas tank to see if it needs filling.
Chronic illness can suck your tank dry and so you need to be checking the gas tank on a regular basis. I check mine every morning and for me that means having a conversation with God asking him to fill my tank. The last thing I want to do is run out of gas! For anyone battling CRPS or any other chronic illness you know that this can happen very quickly. Over the holidays I’ve had to fill my tank numerous times but by having that five minute conversation with God every morning I ensures that I never run out.
Its more than just checking to see if I have enough gas in the tank. There are other things that I need to check out with my car. Every so often you get the oil changed and you check the belts and all the other fluid levels. So I have to do the same thing with my chronic illness and check to make sure I’m putting all my different tools I use in order to manage my pain into place. I make sure that I add anything else that I might need to into that conversation I have with God. So maybe every once in a while that conversation with God is a little longer than five minutes.
As well as an oil change you have to have things like tune-ups and tires rotated in order to keep the car operating at its best. Doing all these things are all a part of a regular maintenance plan for your car. With your illness you have to make sure your doing the same things. You always hear mechanics saying that if you do the preventative maintenance then your car will run longer and last longer. Well the same holds true with your chronic illness. If you follow the plan your physician has set out for you it will make things more manageable in most cases. That’s not to say that you might have periods where things are difficult. It gives you the best chance at managing your illness more effectively and with as few symptoms as possible.
It can be so easy just to drive our cars into the ground not doing the things we need to do to maintain them! There are so many different ways that we can stay on top of the maintenance, yet that’s easier said than done. When your hurting all the time and all you do is spend time fighting your illness, it can be easy to forget those things you need to be doing on a regular basis. That’s why checking in with my mechanic (God) every day helps to keep everything running the way it should. Especially around this time of the year when it can be so easy for my body to break down!
I’m looking forward to the New Year and a much better year with my health. Looking back this last year was extremely tough both physically and mentally! If it wasn’t for those constant conversations with God to get through it all, my bolts would have rattled loose and my car would have started to break down. I wasn’t anticipating that it would take this long! Like when you have to rebuild a car engine I have to rebuild my body and that doesn’t happen overnight! I’ve had a great mechanic that’s been able to make sure all the parts are in place, and all the fluids are full. I’d highly recommend this mechanic because He does great work!
For several months now my health has been touch and go and I didn’t know if I’d have to get a refund on our trip to Cancun or not. I can’t tell you how many times it went through my head that this trip just wasn’t going to happen, even though I just wouldn’t admit it to myself. Looking forward to something fun for a change that doesn’t have anything to do with my health was a welcome change. Well I’m happy to say that in less than twenty four hours we get on that plane for a fun filled holiday full of relaxing on a beach doing absolutely nothing. Normally when we travel we like exploring the region and taking in all that destination has to offer. That won’t be happening on this trip. This time I’m perfectly happy to go and park myself on a beach and not move! Let’s just say my body won’t let me right now!
Now that we are going its time to get last minute details taken care of, and lets just say that there are a lot to take care of. Then there’s this here blog that would normally write a post from wherever I was going so that you can enjoy the same scenery as I am except for one small detail! That YOUR really not there! Not that I want to rub it in because I don’t. The only people I want to do that to are the friends and family that are back home in -30C weather spending day after day shoveling!! I regret to inform you that I won’t be able to do that this time because I won’t be on the internet. With what your paying for in an all-inclusive trip you’d expect that WiFi would be included, where they can make money however they will! So I won’t be bringing you any pictures until I get back. I’m hoping to get around to writing a couple more posts that will publish while I’m away but I’m not sure if I’m that organised this time!
From a pain standpoint things are up and down as always, with some just needing to find that alone time to calm down the nervous system. Those days are very few and far between when you have a nervous system that’s always on edge and doesn’t seem to ever calm down! Its the life that I have to live with and have had to learn to accept along with everything it brings with it. Nobody said this was going to be an easy road, and believe me what I’ve had to endure over the last few years has been anything but a walk in the park. In some ways I feel like over the past year its been one big character building exercise that I’ve been put through. As a result I feel like God has been building me into someone stronger more resiliant, ready to take on anything and everything.
Through this lengthy trial that I’ve had to walk through, I feel as though I’ve been discovering who I really am inside and the person that God created me to be. I’ve said this before and I’ll say it again but for the longest time I struggled with what was going on inside myself after being diagnosed with my CRPS. For starters I felt lost and like my self-esteem had sufford a major blow. I had just brought my daughter home from China and I questioned how I was going to be as a father dealing with a disability. Then there was the guilt of my wife having to not only watch me go through this, but to have to take on so much extra and not be a stay at home mom! As if that wasn’t enough I couldn’t stop thinking about what life was going to be like for myself in the future. All of these feelings took several years to deal with.
Somehow in the middle of all these storms and all the trials something changed and a strength and the ability to be extremely happy with my life has come about. How does that happen? In part two of this post I’ll be looking at that! So until next week goodbye and its off for some fun in the sun.