Today’s topic was suppose to be about writing a thank-you letter to that furry little friend that has always been there through your health condition! Seeing as I don’t have any furry little friends or pets of any kind I have to go to plan B!
I have to thank all the friends and family that have been there through all my health issues. There isn’t a day that goes by where they don’t have to put up with all the distractions that this illness causes! I thank you all for your patience, your kind words, and all the love that you show me. Living life with someone who has a chronic illness isn’t easy and often the friends and family fall behind the scenes when they are hurting just as much as we are. Thank-you for being so understanding and to support me when really I should really be supporting you those of you that have to put up with me!
When I look back at the hard times and the trials that you’ve been there to support me through it leaves me with no words! Without the words that so many of you speak into my life I’d be left lost and full of confusion so once again thank-you. When I find that things are getting to be too much to handle in all that a life of chronic pain throws at you I draw strength from those of you who are around me.
On those days that I find it hard to put a smile on my face you make it possible and for that I am ever so greatful. To my immediate family we are in this together and taking every step of this together, so thank-you for being the rock that I need when times get tough. We will get through this!
Today I wanted to share a post with you on a time where I had to overcome a daunting challenge! There have been many of those over the years. However I wanted to keep things related to being diagnosed with CRPS seeing as this is a blog about living my chronic life! There certainly hasn’t been a shortage of those either. To pick just one is really hard because they’ve all been hard to get through. There have been financial, physical, and mental challenges of all types just trying to get through every day that you have to live with this illness called CRPS. If I had to pick just one I’d have to say that losing confidence in myself would have to rank up there as a top contender.
I mentioned this in yesterday’s post and today I’ll get into it in a bit more detail. When everything starting happening to me back in 2006 my world started to get flipped upside down. It was hard enough having to deal with the physical limitations that were happening to me but the mental side of the illness just added that extra little bit to push things over the top. It’s hard to explain but it was as if my brain was spinning out of control. I was now on a totally different playing field and I just didn’t know if I could play the full game that I had to play. With everything that I had to overcome and the other challenges down the road that I knew I was going to have to meet seemed next to impossible and I found my confidence at an all time low.
There were so many new ways that I was going to have to adapt not only physically but mentally in how I approached everything. Looking at this today the physical side of things was the easier of the two because without confidence the mental side of things was that much harder. All of a sudden I had to learn this whole new world of how to do things and that was scary for me. Not to mention the pain that I now had to deal with. In my mind all I could think about was how in the world was I going to climb this mountain that now looked impossible to climb. It was a matter of leaning on my faith at trusting that I could take baby steps to gain that confidence back. Let me assure you that there were days where I never thought that it was going to happen.
This wasn’t a process that happened overnight! It takes time, patience, and energy that you don’t always have to gain your confidence back. I’m not going to put a time frame on it because everyones situation is different. The point is that you can regain that confidence and to work at it slowly. It might seem at times like your never going to get it back but it will come, and as you work at it and gain bits and pieces back you begin to see that it might actually happen. I’ve had CRPS now for just over nine years and just now am I starting to feel good about where my confidence level is at. As you grow into and adapt to your disability, you become more confident with your abilities.
So my advice to you is this! You might feel like the daunting challenge is to much to handle or get through but push on and do the hard work to get yourself there because you can do it!
Today I start the first day of the Health Activists Writers Month Challenge. I didn’t find the challenge until yesterday so I’m a few days behind but decided to challenge myself to get back on track with my writing. Todays topic is what is an item you have kept with you that reminds you of an important time in your life. The question then asks was why does this item remind you of that period of your life? Not an easy question to answer because that requires going back over the last 30 yrs or so and trying to remember everything good, bad, and ugly! One thing however really sticks out because it means so much more now since my being diagnosed with my CRPS.
When I was in my early twenty’s my father gave me my first 35mm camera! Do you remember those? Those were the cameras that you actually had to put film into, and then after the pictures were taken you had to get the film developed. I’ll always keep that camera because its so much more than a gift. Who knew that receiving a gift as simple as a camera could mean so much down the road. At the time that my father gave me the camera he knew just how much it meant to me. If he were alive today I’d want him to know just how much that camera has been responsible for saving my life! How do you ask?
When I was at my darkest moment after being diagnosed with CRPS, I was having a hard time finding myself while I was in those greiving stages that most people go through when facing something of this magnitude. My independence and confidence had been stripped to the bone, and I wanted desperately to get that back but I just didn’t know how I was going to do it. In so many ways I just wanted to do something that would give me that independence back, and give me the confidence that had been so badly shaken. Photography had been a passion of mine up until all of this had happened. I had all but cast it aside however because I never thought I’d be able to continue it with only the one hand. Several people suggested however to use my passion as a distraction from the pain.
Then one day I happened to be going through some of the cupboards and I came across that amazing gift that it had all started with. It was as if it stirred something in me that nobody else could! I know that sounds crazy but its the truth. The memories of getting that first camera came rushing back and it was at that point I made the decision to find a way to pursue my photography. After a few disscusions with people I managed to modify a new dslr camera so that I could get back out doing what I love. A year or two later and now I own my own photography business. I’ve kept that precious gift however because its had such a meaningful impact on my life.
There isn’t a day that goes by when I’m out shooting photographs where I don’t think about what that gift meant to me!
I lay here wide awake at 2am! Its a typical night in a life with CRPS! These nights can be really long and drawn out. You might be saying well just take some sleeping pills! It isn’t that easy however because I’ve tried that and the side effects and other things make it worse. So instead of staring at the walls I may as well make good use of the time. It’s hard to do that however when every inch of your body is feeling pain! To bring you up to speed without getting into great detail things have been getting worse not better after my surgery.
At this point in time its hard to give you much of an update on where things are at, as I continue to heal from my surgery four months ago. Doctors are still trying to figure out why I’m still in so much pain along with other issues, that just don’t seem to be going away in recent weeks. This is the life of a CRPS patient! Nothing is ever easy! Our bodies have a mind of their own and a lot of the time we are forced to go along for the ride, at the mercy of an illness that knows no boundaries. For the last nine years I’ve had to learn just how a chronic illness like CRPS affects a persons mind and body. This has enabled me to better understand the invisable illness that so many doctors misdiagnose or say is all in a persons head!
With an illness like CRPS where there is no known cure and so little is known, who gives the medical community the information they need to find a cure? The patient right! So it isn’t my intention to come down on anyone and lay blame anywhere. I am however going to say to some of you in the health care industry please stop saying ” IT’S ALL IN OUR HEADS “. Yes your absolutely right! The answers are there somewhere in my head but I need your help to find them! So please instead of turning patients aside and telling them their crazy, please listen to us be a little more sympathetic to what we are living with. We aren’t making up what’s happening to our bodies up and it is so very real! Most of all we are doing the best that we can to survive in an aweful situation. We don’t need to be told that what we are experiencing isn’t happening. When I don’t know what’s happening to my body and I’m scared the last thing I need is to be told I’m crazy. What we need is support!
It wasn’t my intention to write about this topic. However I hear the phase “It’s All In Your Head” so often and it angers me because when you ask a CRPS patient what the doctor said at their appointment, often the first answer you will hear is “he told me it was all in my head”. I didn’t want to get into a rant but I guess its to late for that. To some of you who work in the health care industry please start working with us and not against us! Now to all of those physicians, specialists, and whole host of others who are working with us a huge “THANK YOU” for all the amazing support that you give us! I realize that there are a lot of unanswered questions and that it isn’t easy to care for us.
The job that physicians and specialists have in making the diagnosis for CRPS is hard, and isn’t always cut and dry. This is going to take teamwork if we are ever going to find a cure so its in everyones best interest that we come up with the answers together. Its exhausting living with this illness and the last thing a CRPS patient needs is more stress, so believe them when they say something is wrong! I guess I say all of these things for all those CRPS patients that haven’t been heard or have a hard time saying what their really feeling inside. When your world is spinning out of control and you don’t know what’s happening to you, it can be hard to communicate amongst all the turmoil that’s going on in ones life.
As someone who lives with CRPS I am part of the larger group of people living with chronic pain. You may be unaware but as of 2014 the Canadian Pain Coalition reports that 1 in 5 adults in Canada are affected by some form of chronic pain that usually lasts 6yrs or longer. The annual cost of chronic pain to the taxpayer is $62 billion. Finally more than 27% of all chronic pain suffers haven’t even been diagnosed yet. Of the people that have been diagnosed with chronic pain 71% go for more than 12hrs a day in pain. All of these facts and numbers come from the Canadian Pain Coalition and if you want to have a read go the link http://www.canadianpaincoalition.ca/index.php/en/about-us/media-room/2014/10/17/242 . What amazes me is that chronic pain costs Canada more than Cancer, AIDS, and heart disease combined! If this isn’t enough of a reason to bring awareness to CRPS and other chronic illnesses then what is!
Please! Please! To those of you out there who read this and are in a position to help, those of us in the chronic pain community we need you! Not eventually but “NOW”!
I know! Its been a while! This blog has taken the backseat for the last little while. Its had to because things have been rather tough for me lately. Every day is a task to get through at the moment, and so I need to be careful and make sure I’m not taking on to much. My pain levels have been all over the place, and we’re trying to figure out why the surgery site in my back isn’t improving. The surgery site in my back has been getting more painful along with a constant headache that nothing seems to take away. My week was spent having a few tests done to try and determine what might be wrong. With any luck I will be able to avoid surgery!!! I’ve been spending a lot of time flat on my back and forget trying to lift anything remotely heavy because that just isn’t happening. Even bending over to tie my shoes is painful.
Going into this implant replacement I knew that I had to go all in if I wanted to see an improvement in my pain control. So no matter how long the healing time or what I have to face I’m in it for the long haul. That means enduring whatever twists and turns come along the road, and so far there have been a few of those! There might be a few more before all is said and done so I remain as positive and focused on the big picture which is pain relief. A few years ago I committed to this process of the implants no matter what the outcome was or what I had to endure. I’m hopeful that over time things will get better, there are times however where my will is challenged. At times its scary or even frustrating but I don’t regret making the choice I did even though its been pain stakingly hard at times.
To say that the battle through this illness has been tough is an understatement. I don’t know why but today I started thinking about the amount of time that I’ve been living with chronic pain. Or maybe because the pain has been really bad as of late and I just need it to leave. So I thought just out of interest I’d see just how long its been! When I sat down and did the math nine years at 365 days, 24hrs a day translated into 78,840 hrs that I’ve lived with constant pain. No wonder some days seem so long and make you feel so tired and want to give up! If you live with chronic pain or CRPS then you can totally relate to what I’m saying.
There are days when your living with an illness like CRPS when you have to muster all your strength just to get out of bed. This morning was one of those mornings but for some reason I knew I had to do it. Its a good thing I did because in church this morning our pastor used this quote in his message and I can’t tell you how much I could relate to itLook.
” If your going through hell keep going”
Funny how God works but there was a very direct message in this quote and there’s no need to explain it! Such simple words but such a powerful message. The message at today’s service was one I needed to hear because at times when I feel discouraged or frustrated about how much I’ve had to endure with this illness I need to remember just what God says about facing the trials I do in my life.
James 1 2-4 says this:
“ Consider it all joy, my brethren, when you encounter various trials, knowing that the testing of your faith produces endurance. And let endurance have its perfect result, so that you may be perfect and complete, lacking in nothing”
When you break down this peace of scripture what he means by this is that when your faith is tested and you endure and persevere it causes you to grow or flourish in the midst of that adverse circumstance. If I make the right decisions through the trials that I face, then things can actually work for me instead of against me and eventually I’ll be able to come out on top.
I guess this peace of scripture really speaks to me because I’m seeing this play out in my own life. I’ve faced many trials as I’ve been walking along on this journey. Each trial I face tests my faith more and more. As it gets tested my endurance gets that much stronger and I’m seeing myself grow in ways that I never thought I’d see. As hard as some days may be I know that God is there every step of the way and its so encouraging when He’s there to pick me up like He did today when I need it the most.
Six years later and 350 posts and this thing is still going! It seems like just yesterday that I wrote my first post for this blog but you blink and time just passes in an instant. I was looking through some of my older posts, and so much has changed over that time in this very personal battle with my CRPS. I’ve met so many people as I’ve been on this journey, and I wanted to take a minute to say thanks for all the support and encouragement. Especially knowing that some of you are in that same fight right along with me! Its that support and knowing that we aren’t alone in all of this that gets us through those really hard days.
Its hard to believe the amount of time that’s gone by, and some days it seems like double that amount of time. As each day goes by I gain more hope and confidence that doctors will find a cure for the illness that tries to tear apart peoples lives bit by bit. I’m reminded in a heartbeat just how cruel this disease can be whenever my pain gets really bad. The difference now though is that I’ll never let it defeat me! God has my back through all of this and fear has no hold over what I can or can’t do within my life. Don’t think for a minute that fear hasn’t been a factor as I’ve had to deal with my CRPS because it most definately has. The difference is that I’ve decided to not let it take root in my life.
Once again the plan was to finish this post yesterday but as has happened before my brain goes into shutdown! Its frustrating because I have so much to write. With this illness however there are days where it hurts to think, and I mean that in the literal sense!! Its one of those times where my pain is bad causing lots of mental blocks, and I’ve had to learn not to fight it. You’ve heard all this before so there’s no need to really get into it!!
Before I get too far off topic I’d better get things back on course. In this post I really wanted to speak towards fear because it can have such a grip on a persons life. I’ve posted about this topic before but only because I speak to so many people who deal with it as they try to manage their way through a chronic illness. Its one of those topics that is so important if your going to be able to move forward in your own personal journey against your illness. Fear is one of those things that tries to find a way in through any crack it can, and it doesn’t take much for it to take a stronghold in your life. Do you allow fear to take you down a road you don’t want to go?
Life in general throws all kinds of curveballs at you and some of those involve fear. When you add chronic illness to the mix everything is more complex. Fear makes itself more present because it has more of an oportunity to do so. As long as this illness affects my life then there will always be fear that tries to creep into my life and take me down a path I don’t want or need to go down. I’ve made the hard decision however that fear doesn’t have any place in my life and that with Gods help I can keep it away. Even after my my most recent surgery I had to spend time blocking out some of those questions that fear can attach itself to.
I’ve always been straight forward and honest about my feelings on my site and I’m not going to stop now. When fear tries to show up in my life I pull out the biggest weapon that I have! GOD! Whenever there is any type of fear that tries to show itself in my life I give it to God and He always sets me free of it. So ask yourself one question tonight. Does fear have a stronghold on your life as you deal with your chronic illness?
After arriving home from a great family trip late last Wed night, I had nothing left in me to write a post! I decided that I needed to give my body a few days after arriving home to get itself not only calmed down but turned around. We had a great time as a family in Cancun, and the last thing we wanted to do was come home to the freezing cold. The holiday met all our expectations and more! Not only did we get a lot of time as a family but my wife and I got a lot of much needed alone time as well. Every morning we’d wake up in our room and hear the crashing waves only to open the curtains to this amazing view!
My only regret on the trip was that I made the decision to not take my camera gear along with me on this trip. It was a hard decision to make because I knew there would be all kinds of photo ops presenting themselves to me but family and rest was the purpose of this trip and not pictures. We weren’t planning on leaving the resort and so that was another factor in making my decision not take it. As law would have it however the first day there, I looked next door to our resort to find an old abandonded hotel that was destroyed by Hurricane Wilma in 2005! Naturally the photographer in me came alive and I started seeing possible pictures before my eyes!
I’d been looking forward to taking this trip since we booked it in Sept, and so when surgery happened in Oct it made recovery all the more important so that I wouldn’t have to miss out! The travel is a great way to distract myself from the pain. However the reality is that its expensive and I can’t do it as much as I’d like to.
The relaxation was great though and I was able to calm my nervous system down while laying beside the pool most days! While I did some reading or even had the occasional sleep these two little monsters had a great time swimming or even meeting different kids from different places throughout the world. After the type of year I had last year it was good to just laugh and smile a bit more. I’m so thankful for the family that I have and the amazing support that they give me all the time. Even though I had to put up with my pain and the daily flareups I still feel as though it didn’t stand in the way of us having a good time. My girls had the time of their lives and that’s what mattered the most! As I’ve said numerous times before I don’t want to see CRPS limit me in the things that I want to do and the places that I want to go! I have a lot of this world left to see and I’m not about to stop. So check off Cancun and on to the next destination! The only thing I need to do after this trip was find a way to excercise because I ate way to much while we were there. I’m sure if I stepped on a scale that I will have gained about twenty pounds after all that amazing food!
After arriving home the temperature swing from 31C to -31C really shocked my nervous system and I’m sure its why my body is a bit more cranky than normal. I’m hopeful however that the extreme temperatures will start to ease in the next month or so! It just needs to smarten up or I need to move to the heat! Did I mention that I still have a mental picture of this beach in my mind, with the turqoise blue waters!
Okay! Time to get this post finished as the first week back was kind of crazy and I just wasn’t able to get to finishing this thing up. So its time to put the my nose to the grindstone and get this thing done. In lots of ways I feel like I have too many things that need attention right now. I don’t however have the energy to get it all done. There are two things that I’m really struggling with since having my surgery and that’s energy and the ability to lift any weight at all. I find that even lifting a shopping bag that’s moderately heavy is too much and almost kills me. So trying to push, pull, and lift are all things that I have real trouble with still. The pain doesn’t take a break because with CRPS it never will but over the last week I was able to take a break from focusing on the pain. Every day I watched my two girls take on new adventures and that brought a smile to my face. Both of my girls tackled the rock climbing wall that was there, a little nervous at first but eventually getting the hang of things! In this picture you see my little girl Katelyn scaling it to the top. Then they took a zip line down from the top.
So after a hard morning of climbing and zipping the girls would cool off by either doing some water sliding or laying by the pool eating a plate of fries! Yes vegatables seemed to be a rarity on this vacation for them. We would try but over and over they wanted fries and chicken nuggets. It was vacation so we weren’t going to force the issue to much, but it was funny! It was just fun seeing them have so much fun and be kids for a change. What so many people miss is that these kids are growing up with a parent who is battling chronic illness. So life for them is just a bit different because there are lots of times when they have to hold back on that because it affects dad in so many ways. It was the perfect enviroment for them to let loose and just be kids.
When your a family that deals with chronic pain your everyday routine is often a bit different and it can be more taxing on all of you. The moments of stress or tension within the family dynamic are often greater and you have to try hard to laugh at things even when you don’t exactly feel like laughing. This trip helped ease all that stress and for once we could just laugh at each other and smile as we had a good time!
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.
I’m back! I’d hoped to get around to this a few days ago but time and pain just didn’t allow me to get around to it. My pain doesn’t really know which way to go at the moment, one minute its up and the next its down at a more controlled level. This recovery has been a lesson in patience and let me tell you at times it where’s very thin. I will manage to get through this however and in the meantime focus on getting away with my family on a vacation to sunny and hot Cancun, Mexico in two weeks time. We booked the trip back in Sept before I knew I was having surgery. My surgeon has now given me the ok to travel, and I can’t think of a better place to heal!
The countdown is on and every day my girls get more and more excited about going! There isn’t a day where they aren’t asking about the resort or the fun things we are going to do. Fun for mom and dad will be lazing by the pool while the kids enjoy the kids club. A hot holiday in the dead of winter always helps to break up the cold and the extra pain that it causes as a result. Up until a week or two ago we still weren’t sure if we might have to cancel however now we are a definate go! There are so many things I’m looking forward to on this trip but family time, hot weather, and relaxation top the list. Our family needs some time to laugh and enjoy just being with each other after last year being such a tough year. I’m looking forward to it being yet just another part of putting the last six months behind me and just being able to move forward.
My brain is doing its thing tonight and its a fight to put the thoughts down on paper. Its the one side of this illness that never gets easier to cope with. It can hit you out of the blue and you never know how long its going to last. People in the CRPS community call it brain fog and there are several reasons that people with chronic pain have to deal with it. I’ll make the best of it though and try and put together a post that makes some sense. So have patience with my post tonight because I’m operating on half a brain!!
Lately what’s been on my mind is the importance of having friendships within the chronic pain world. Fighting your way through a chronic illness of any type can be hard if you have nobody else that understands your pain. I’m not talking about family or friends but rather those who suffer besides you who truly understand your pain! Your family and friends can be the best of support but there’s something different about those that can relate to what your living through when their living it themselves. It takes away having to explain yourself so much. I can’t tell you how many times in a day I have to explain myself to others about what I go through on a daily basis. Or even the number of times that one has to justify themselves to others because the person on the other end can’t understand what the person sick is having to go through every day.
Establishing friendships within the chronic pain world is important for a lot of reasons. First and foremost it helps build that strong support network that you need and is vital in walking through this journey. For a person living through a chronic illness, that frienship with another sufferer might help them during those times when they lack that person they need in their life. Someone who listens and gives them feedback. Secondly those friendships can be important in helping you think objectively about your illness. It helps to have that person there who’s living what your living who can help you in making some of the decisions that you face within your disability. Not because loved ones or friends aren’t able to help in those decisions but because those affected by chronic illness are facing some of the same circumstances and its easier to relate on a more even playing field.
The other reason that we need to make friendships within the chronic pain world is because we are powerful in numbers. We are never going to beat down the disease called CRPS unless we come together as a comunity and make our voices be known. Unless we are willing to put ourselves out there and kick and scream for research to be done then we won’t see a cure being found. It takes more than two or three people to come together! If we aren’t seeing the funding, research, and the awareness being raised then we need to stand up as a community and fight for it. Its all in for me and so for the last little while I’ve been working on establishing relationships and trying to be a part of making a difference. Are you going to join the cause?
Well I’m back in writing mode again today. It was a busy week that started out last weekend, celebrating Ethiopian Christmas with a group of other adoptive parents. There isn’t a day this week where we haven’t had something on the books with our kids. Throw in my daughters 11th birthday and it made for a really crazy week! Somewhere in there came trying to find a way to manage my pain. With flare ups being frequent at the moment I need to stay on top of things. As I mentioned in my last post its a new year bringing with it new strength, hope, and vision.
This week I kicked off my plan to be more aggresive in bringing awareness CRPS. I did some snooping around to see where we stand not only in my province of Saskatchewan but in Canada in regards to chronic pain. What I found I had already come to expect to a certain degree! What I found made me mad and in a lot of ways I’m even more fired up about making a difference and creating change. I want to find some answers when it comes to CRPS and chronic pain in general. Sure we know a lot more than we did five years ago but we are barely scratching the surface when it comes to answering a lot of the harder questions.
To tell you the honest truth I had half of this post written and decided that I had to go back and change everything because I wasn’t in the right frame of mind to write this. I had started listing specific faults and mentioned specific names of organizations when it really wasn’t about that. After my blood stopped boiling and a level head returned, I deleted everything and started fresh! My intentions were not to lay blame but to find the areas of opportunity that need to be fixed or improved upon. Trust me when I say there is room for oportunity in so many different areas when it comes to the fight against Chronic Pain and CRPS! One of the things I will point out is that several websites of organizations were not up to date or lacked information on events, or information on chronic pain. In my opinion these are key areas that you can’t ignore or forget about. What we can’t forget though is that in order for these organizations to function they rely heavily on volunteers to help them.
So when I look at it with this perspective then it takes on a different light. Without volunteers that information sometimes can’t be filled in on websites. It then leads me to what am I trying to do to make a difference? Am I giving time of myself to try and bring about change or am I just sitting back waiting for other people to make it happen? Nobody is saying that you have to take on a major role! Maybe a strength of yours is organizing, and you could put together an event in your community. Even doing the simplest of things like writing a letter can make a difference. After going through a few sites that’s exactly what I decided to do. I wrote a letter to the Minister of Health here in Saskatchewan asking a few questions about what’s being done here in my province to fight the battle against chronic pain. I took it one step further however and wrote a second letter to the Minister of Health for Canada asking a few of the same questions just on a larger scale.
Unless we take a good hard look at what’s being done at all levels, then we really don’t have our finger on the pulse to help raise awareness or changed to help facilitate a cure. Change can take place but it takes a team effort to make that happen on all levels, meaning right from government to those of us that suffer and all the others in between. After digging a little deeper however it couldn’t be more evident that as a community of sufferers of chronic illness that we need to raise our game! I will personally state that I don’t do enough and need to find a way to raise my game. I think its easy to sit around and wait for change to happen, but difficult to push yourself to become involved and be a part of the change!
So my challenge to you is this. Do whatever it might be no matter how big or how small to get involved to do your part and bring about change!