Ok like I said in my last post I’m determined to get caught up and get back on track with this thirty day challenge. So here is post number two for today. How I’ve been able to achieve this today I don’t know. I’m tired in pain and fighting off the start up of another flare up. Like most health activists though you find a way to push on and move forward. So onwards we go! This is day #21 of the WEGO Health Activists Writer’s Month Challenge. Todays challenge is to reflect on my journey. That’s quite the challenge seeing as I have to try and cram ten years into this short post!
Its hard to believe that coming up this fall will be ten years since being diagnosed with CRPS. To say that its been a wild ride is an understatement! The range of emotions that I’ve gone through have been too many to count and the same goes for the number of ups and downs that I’ve experienced. When I look back and reflect there are all kinds of things that I’d like to put behind me and not relive ever again. At the same time there have been some extremely proud moments as well. The low point of all of this had to be that day where I walked out of that doctors office with my diagnosis. I can still remember the day as if it was yesterday, and the anger and frustration I felt as a result.
Keeping with my optomistic or optimistic attitude however I want to say that there have been some great things that have come from all of this as well. First and foremost has been how God has been there from the start. If it weren’t for the support that God has shown me through all of this I would lack confidence but my confidence couldn’t be stronger today. My ability to overcome adversity no matter how hard things get is another. Every time I walk into a trial I know from the start that I’m going to be able to get through the storm no matter what. Through all of this I’ve been able to see a new me emerge. One who’s stronger and more confident about what I can accomplish with my life.
I’ve also been able to establish some great friendships with others who live with CRPS and other chronic illnesses. Without their support I wouldn’t be able to get through half of what I do in managing my CRPS. It means so much to be able to go through this with others who are facing some of the same trials. On those days where its all to much there is always one of you there with words of encouragement.
Living this last ten years with CRPS has opened my eyes and given me perspective into a disease that goes along very quietly to most, yet to those of us living with it the pain and suffering is very real. My hopes are that through all of this that I am able to make a difference in educating and raising awareness about a silent disease that affects so many. Imagine a child having to go through what we have to endure as an adult! Would you want your child to have to live with pain as bad as this? The reality is that its happening and I’d like to see that change. We should be opening more pain clinics and the health sysytems world wide shouldn’t be dismissing chronic pain but treating and reasearching it! In our province they just shut down one of our pain clinics because of funding. That’s a whole other topic!
My hopes and dreams are to see people in positions of authority catch on to the same visions as me. That there would be changes to the health care systems, and that CRPS would be seen for what it really is. We can’t do anything about it if it sits in the closet collecting dust!
Yes this was yesterday’s topic and I’m playing catch up but better later than never! When you have two small kids, a disability, several doctors appointments, and you run a blog its challenging to keep up with a thirty day challenge! My motto is better late than never and I have something to prove to myself that I can complete this challenge. Even if it means that in order to do it I have to write two posts on one day. Which is the case today! The last week has I’ve also been dealing with a flare up and so it makes it extra challenging but I never give up. Keep pushing along and you will eventually complete the race!
The next topic WEGO Health Activists Challenge is if you could travel anywhere in the world, where would you go and why? There are a lot of places in the world that I still want to travel that are high on my list of places to go. However one has grabbed hold of me pretty tight and that is Kauai, Hawaii. I’ve been there once already and in Sept I’ll be returning for almost the full month. When you watch shows such as Hawaii Life they really tell it like it is. They really do have a different way of looking at life! Everything is so much slower and layed back. Enjoying life and family is put first and you can clearly see how this is incorporated into people’s lives there by how they live.
There is something special about that island to me. Although we’ve only been there once it really is all that and more! Its hard to describe but there are miles and miles of white sand beaches, and if you want to find a place to just relax and get rid of all your stresses this is the place. Everything from the lush vegatation to the wildlife that is all around you leaves you in awe of what God has created! As you can tell I don’t have a bad thing to say about this island, as it feels like a second home to me. It helps lift my spirits when I have to deal with my CRPS every day.
The only part of going there however that I dislike is the travel time to get there. From where I live its anywhere from between 12hrs to 19hrs of travel time depending on how you go. So for me that length of time trying to sit on a plane in brutal, but I try and focus on the goal in the end. Not to mention the hassels of taking longer to get through security checks because of my implants, medications, and special things I take. With my CRPS I get a lot of swelling and so with the change in altitude I get more severe swelling. It seems that my affected leg gets a bit worse so I wrap it in a tensor to try and keep the swelling at bay. I already wear an edema glove on my hand so it helps with the swelling of the hand. I notice however the swelling gets worse up the arm as well.
Sure the travel is more of a hassel but if you do the work to figure out how you can make it easier for you then it isn’t as bad. You can apply through the airlines for special medical seating that will give you prefered seating to make you more comfortable. I also do my homework and get letters from my doctors to help get me through security if there are any questions about all the wires and metal I have in my body. I know that for some of you the travel isn’t easy but I say this in all honesty that the travel is worth it in the long run. I come back feeling alive and rejuvinated ready to keep battling!
So just because you have a disability don’t let that stop you from getting out there and traveling to some of the most special places on earth. I might have my own little place I call paradise now go find yours!!
Did you know that April is stress awareness month! We all deal with stresses in our lives but for lots of us who live with chronic illness or specifically chronic pain stress can be a trigger. For those of us who deal with CRPS we try as hard as we can to avoid extra stress because it sets off flare ups. The more stress we have, the worse the flare ups seem to be in most cases! When I was first diagnosed nine years ago I really didn’t understand just how big an impact stress had on my illness. As I became more educated I started to understand that the more stress I had in my life, the worse off I was going to be when it came to dealing with my symptoms.
For those of us dealing with CRPS the greater the stress the more our nervous system wants to get wound up really tight. That tightness that our nervous system experiences translates into increased pain as I mentioned before. Stress however isn’t always as a result of a stressful situation, it can be anything that tenses up your nervous system. So for me it can be large gatherings or noise that fire up my nerves and make my stress level worse. Pain then feeds off of this and it just sets off a chain of events that just keep snowballing.
In order to escape that stress I had to find ways in which to take my mind off the various triggers that cause the stress in the first place. So for me dealing with it was to isolate myself in ways where it didn’t allow stress to creep in and set off that chain of events. When it came to family gatherings it meant limiting things to a certain amount of time or picking and choosing the things I do to avoid extra stress. When it all gets to be to much then I have to isolate myself away from everyone, where I can allow peace and quite to replace the stress that my nervous system was experiencing. Often I will use music or deep breathing excersises to do this. It isn’t always easy to get things to calm down but it can but if your persistent and do this on a routine basis then your nervous system can responds to it.
So how do I escape stress? My love of photography! Its the perfect distraction from my pain. When I get out there with my camera I get lost in what I’m doing, and there isn’t a stress in the world. For half a minute I’m able to cast aside the stresses, and try and forget about the daily pressures I feel in dealing with chronic pain. Or the doctor’s appointments that happen every week. Its a chance to spend some time alone and just forget about everything best I can. Its stressful in itself dealing with all the day to day that you have to when you live with CRPS!
Is there and easy escape? I really don’t think there is because of the type of illness CRPS is. With your nervous system always running at a mile a minute its hard to calm things down and calm things. After the same time I do think its possible to distract yourself and bring the stress down. Things that bring you lots of happiness and joy from within are great distractions. Sometimes its just a matter of getting out there and trying different things to see what works. The one thing I do know is that you will never figure out what works for you if you don’t try.
For those of us who live with chronic pain or chronic illness there are lots of ways to reduce stress. Once you’ve found what works for you then its a matter of building it into your lifestyle. It may not bring results overnight so you have to stick with it and see the long term results that can happen. Believe me when I say that finding things that work for me have helped me a lot in how I’ve been able to successfully control my stress level better than I did!
Well we’ve reached just over the half way point in the Wego Health Activist Writer’s Month Challenge! It seems I’ve written more posts over the last fifteen days than I would in the course of a normal month. First I wanted however to give you all an update on how things are going as far as healing are concerned. The adjustments that we’ve made to my drug treatment plan seem to be giving me some relief at times however things aren’t perfect. Its still a very up and down time for me and for every step I make forward I take one backward as well. The flare ups with my CRPS have been coming on more often but I think that is as a result of the surgery pain that I’ve been dealing with in recent months.
I was warned that the recovery process was going to be the hard part, and most certainly I have been finding that out. I continue to move on however and look at things in the most positive way that I can. Today’s topic for the #HAWMC is “What’s one thing that your 10-year-old self thought you would do? Can you still do it? How would you approach it to make it happen?” There are lots of things that my 10 year old self thought I would do. Like every ten year old boy I was big into sports and to this day I still very much enjoy watching them, and following all the different athletes.
I was big into golf when I was 10. As a matter of fact I picked up my first club when I was 9 and would play on the beach at our cottage for hours on end. All the time I would hit the beach and this went on for years, like every little boy I had dreams of being a professional. The odd time here and there my dad would take me to the local course to play a round of golf. Then at age sixteen I got my first membership to that same local course where I was able to put all that practice to good use. Over time I got better and played in a few tournaments however never really pursued my childhood dream of being an amateur/pro golfer. I did however keep playing as often as I could into my years as a young adult.
When I was diagnosed with CRPS however all that changed and I wasn’t able to play. It was a huge blow to my spirit because I loved the game so much and had developed such a passion for the game. It was another one of those things that CRPS just stole away from me like that! A few years ago however I decided when I was able to walk a bit better that I wasn’t going to let yet another thing I love be stolen away from me. I started looking into how I could adapt to play the game again even with a disability. Like with my approach to everything else I wanted to see if it was going to be a possability for me to play again.
Slowly I started working with physio trying to swing a club with one arm. It was a matter of changing the mechanics and suiting them to fit my needs. I was hopeful at one point that I would be able to go out and start playing rounds of golf with the use a cart because of my difficulty walking. A couple of attempts proved that it was going to be one of those things that just wasn’t going to happen however. The flare ups became too severe and just the pain invovled in attempting the physical side of the game itself proved to be too much. Attempting to do it was great though because I wanted to be able to say to myself that there was just no way of playing even after adapting. I’m ok with the fact that I can’t play I’m not left wondering “what if”.
I believe that we can’t just give up when we are diagnosed with a illness or disease. I really we need to go out there and live life as if there were no limitations. Your body will tell you what it can and can’t do but don’t have what I like to call “give up” attitude. Press on and go out and try the things you used to do. You can’t say can’t until you’ve tried!!
If you had asked me when I started this challenge about a week ago how difficult it was going to be I would have said no problem piece of cake! Well I missed yesterday’s post and I find the topics WEGO has thrown at me, are challenging me and causing me to look deep within myself. I’m almost half way through the challenge and no matter what happens I’m going to see this through until the end of the month. So today I’ve been asked to write about a moment or moments that I feel as though I could take on the world.
So I thought about this question, and I thought about it some more. Did I mention that I thought about the question some more! As I started drafting up this post in my head all I could think about were the challenges I’ve faced and the reasons they’ve given me to want to give up, and not take on the world as I live through life with CRPS. Then I started thinking about all the small things that have happened over the years with CRPS and the numerous reasons that they have given me to take on the world. Every day that I have a small victory in this fight with CRPS gives me reason to take on the world and tell others that they can do the same.
So often in this fight with CRPS its one step forward two steps back and so when you do manage to take two steps forward and none back you feel real good. Its at that point that you feel as though you could take on the world and do anything. A little positive has a huge uplifting affect on a person. So when you take back the bits and pieces that CRPS has stolen away, you feel as though anything is possible. So I don’t think that there has been one moment in particular where I feel like I could take on the world but it’s a whole series of moments and the small victories. When your surrounded by so much negative fighting an illness like CRPS those positive moments are that much bigger. When I received my first implant I was walking with a cane, fast forward to today and I’m walking on my own with no aid at all. That is the type of small victory I’m talking about and it leaves you feeling on top of the world, and that anything is possible if you set you mind to it.
When I try to think of that one big moment it hasn’t come yet because that will come the day that I beat this illness that’s had a hold on my life for the last nine years!
Today is day twelve of the Health Activist Writers Month Challenge! Trying to find the time to post every day has been a challenge but I’m managing to use my time in the midnight hours wisely when I can’t sleep. Today’s question in the month long challenge asks when you’re having a bad day, or a long week – how do you relax, recharge, and reset yourself?
With CRPS the easiest way to try and recharge or relax is to do something that calms the nerves. There are various ways that I find ways to reset myself depending on how bad the flare up is! With CRPS being a disease that affects your nervous system I put specific tools to work to try and calm things down. The first is doing relaxation therapy. This is breathing excercises that are specifically designed to calm the nervous system. If I’m having a really bad week then I do these every night so that I get an upper hand on the flare up that’s causing my nervous system to get so wound up! It often helps to unwind things so that my body isn’t as tense.
If you ask a CRPS patient how they try to deal with getting their body to relax often the answer is a simple spending time alone! With so many different triggers that set off this illness sometimes the best way to deal with things and reboot your brain so to speak is just to isolate yourself away from everyone around you. Just spending some time away from everyone around you on your own does the most good. That’s why my photography is such a great distraction from the pain. It allows me to go out and just get lost in my passion and it resets not only my body but my mind as well.
Things that have any type of calming affect like music are also methods that I deploy in order to get my brain to reset itself and calm the rest of my nervous system down. If I’m having a really bad week with pain along with all my other symptoms then I’ll listen to music once again to bring about that calming affect that my body needs. There isn’t really a complex recipe I use in order to get things to reset. Truth be told its a very simple recipe, and all I need to do is make sure that I’m putting all the pieces into use to get the results I need.
I guess the other thing I do is try to listen to my body! Now the word “try” is key here because its never easy to do! Often I’ll hear what my body has to say but sometimes I decide to ignore what its saying and my body goes through a real struggle trying to reset itself. With CRPS there is no easy answer and doing just one thing to get your body to recharge or relax often doesn’t work. Its usually doing a combination of things that is more successful. For me its been about learning a new lifestyle so that I can help my body do the things that my brain doesn’t allow it to do anymore!
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”!