Challenge Yourself & Your CRPS

Today is a good day! Any day that I can manage the pain so that I’m not letting it control me is a good day. The last couple of weeks I’ve been having some real flare ups in my pain levels. Today is the first time in a while where I have woken up and felt like things are under control. I’m still in pain however things are under control.

It feels good for a change to be able to get out of bed and not have to feel like I’ve been run over by a mac truck!! Just the fact that I have a smile on my face today and can laugh with my kids lifts my spirits. I’m looking forward to having a good day today without being eaten alive by pain. It’s all about taking advantage of today while I feel good. It might mean doing something as simple as going out for coffee with a friend, but it gives me a sense of freedom that I have lost in a lot of ways. I might even do some reading because my head feels relatively clear. It’s about challenging myself to do things that I haven’t been able to do for a while because the pain has been too bad.

These things might seem like every day things to most people however they aren’t to me. Being challenged in the simplest of ways like reading a book or going out for coffee may not seem to be a big deal to some, however to those of us that suffer from CRPS we known that it is. When you are able to do simple things like these, then it’s like you’ve taken a piece of your life back. It gives you back your independence that a lot of people lose when you become so dependant on others.

On good days one of the biggest changes that I can see is within my kids It’s almost as if I can hear them saying to me “Dad’s back” we can play with him now!!! It’s hard to have a normal relationship with my kids because of my condition. Lots of the things that kids do naturally like yelling and screaming have an effect on my CRPS, which in turn makes things worse for me. Quite often the added stress will cause my pain to increase. So when my pain isn’t bad they get to be around a happier Dad. This only motivates me more to get better so that I can spend even more time with them laughing with them rather than being in pain and uncomfortable.

When you spend so much time in pain and not being able to do the things that you were once able to do it can be really difficult to stay active and positive, but the alternative is to become depressed and withdraw from people. The more active I can be, the more positive I’m going to be. I’ll be the first to admit that it isn’t as easy as it looks! I like to think of it like “The Little Engine That Could”. He kept saying to himself “I think I can” “I think I can” until he got to the top of the mountain.

So the next time your feeling like your pain has eased and your having a good day, challenge yourself to do something that you haven’t done in a while. It might encourage you or motivate you to try harder in your efforts to overcome CRPS

Understanding The Pain

Over the last couple of days I’ve been trying to do what I can, to distract myself from all the pain from my most recent flare up. Trying to do that however isn’t always as easy as it seems. I love to read and there is no better way to distract myself from the pain than picking up a good book. However lately with the inability to concentrate and fogginess in the head this hasn’t been so easy to do. It becomes hard to find any comfort from the pain. It’s like when you get one of those splinters in your finger that you just can’t see. You feel it and know it’s there but you just can’t see it. It irritates you over and over however there’s very little you can do about it.

Where I’m going with this is that there are going to be days where you just can’t do anything to help the pain. On these days you just need to back off and listen to your body. I’ve become a lot more aware of what my body is trying to tell me. There are some days where I’m in too much pain to be able to do my relaxation because it only aggravates the condition. Sometimes with my inability to concentrate it makes trying to focus on the relaxation techniques really hard and causes extra stress which in turn causes me to flare up.

Then one day it was like someone had turned a switch on and I decided that I wasn’t going to worry about it. If I was having a good day and could concentrate then I’d keep going, and if I was having a bad day then I would just stop and tell myself that maybe another day would be better. I know it sounds like I did this quite easily however let me assure you that the changes didn’t happen overnight. It has taken quite some time to tell myself to relax and not force things.

It has taken a long time to learn all the different triggers to my pain and what causes a really bad flare up and what doesn’t. At the same time it has been just as hard to learn all the different ways in which to manage all those different triggers. Does it mean that we are successful in being able to control them all the time? No it doesn’t. There are going to be days where no matter how hard we try, we just can’t control what’s going on with our body. This is when you have to understand that trying to do to much can in turn cause the opposite results of what you want.

Telling yourself to relax is very important. What’s the worst thing that you can do for this condition? Get stressed right!! It’s a delicate balance that doesn’t always work, however we need to keep trying. I really want to encourage people to understand pain and how it works. The more we understand as someone with CRPS the better you will be able to control your pain.

There are two choices that we can make as we fight the CRPS that effects our bodies. One of those is to say ” nothing is working ” and complain all the time, or we can choose to try everything that may help us in our efforts to get better. If you take the time to understand the pain and how it works then you will understand the therapy and why its important to do it. Remember that you’re going to have lots of highs and lows and that you just need to keep pushing through everything no matter how hard it may seem.

Escaping The Pain

There was something else I was going to write about today however I felt the need to talk about something else. At the moment my pain is so intense that I can’t think straight. What I’m trying to do at the moment is try to escape the pain and tell my body and mind that everything is all right. Earlier tonight I was cleaning up the kids toys and I took one wrong step with the ankle that is affected by the CRPS. I didn’t realize that my foot was so close to a concrete block, when I turned around to take a step my foot came down on the block unexpectedly and uneavenly jarring my ankle. Needless to say the swelling and pain are up in my ankle.

I know that in a couple of days what has flared up will go back down but in the meantime I have to put up with the pain that it causes. At times like this I find it really hard to ignore the pain. What should be a really easy process for my brain is no longer an easy process. This frustrates me in so many different ways. I keep trying to tell my brain that everything will be alright, however all it’s hearing right now is that it HURTS!!!!!

It’s hard to give you an idea of what the pain can get like at times. At the moment it feels as though someone has snapped my limb in two, and the searing pain that I feel is out of this world. At times like these I find it very difficult to escape the pain and to try to convince myself that everything will be OK. You do the best you can to try to put it out of your mind, but when all you hear in your head is PAIN! PAIN! PAIN! it isn’t the easiest thing in the world to do. Think about when you run into a chair and stub your toe. You can’t stop thinking about the pain can you? Well that what my brain is thinking all the time hurt! hurt! hurt!

The frustrating thing is that you can’t seem to escape it. You can have a stressful day and your pain gets worse. You can do something like I did tonight and the pain gets worse. What I can’t stand is that I have no control over how my brain is able to process things at the moment. Am I learning how to deal with my pain and manage it? Absolutely! I can’t tell how long it will take for things to settle, however at least I know that they will. This is a change in attitude that I’ve had to make. It’s not a matter of if the pain will get better it’s when will the pain get better.

Does having this kind of attitude make it any easier in dealing with the pain? In my mind it’s never easy to deal with it, and right now there’s a war being fought inside my head. Small steps, often day by day are being made in order to be able to escape the pain. If you live with CRPS then you understand me when I say that you are learning a great lesson in patience.

I’d be lying if I didn’t say that it’s a struggle as I sit here trying to write this not to let the pain control me. However it’s at times like this one now that I’m almost at my strongest because there’s a fight that rises up inside of me and says that the pain isn’t going to win. It’s at times like this that I know that God is right there beside me helping me fight.

United We Stand!!

When I was first diagnosed with CRPS things weren’t the way they are now. My CRPS started in my left hand at first and at that time I had lots of swelling, discoloration, and of course pain. However at that point I was still able to do things in a limited capacity. Then things took a turn for the worse when I injured my left ankle, terring the tendon. It was at this point that the CRPS developed in my left ankle as well. It was at this point that things became a lot more challenging and most of the work load started to fall on my wife’s shoulders.

Nobody is ever prepared for something like this to happen in thier life, and just like that your world is turned upside down. What we found was that because I became very limited in what I could do there was more and more work being placed on my wife. All of a sudden I found myself having to sit on the sidelines not being able to help in so many different ways.

When I look at all the things that my wife has to do on any given day it truly amazes me that she is able to do all that she does. I consider myself the luckiest guy in the world to have someone like her. It’s taken a whole lot of figuring out to take on our daily challenges together, and to be able to do it in such a way that we give each other the breaks that we need. There are days where I’m not doing well at all so she will pick up the slack to allow me to rest. On days that I’m up to doing a little more I will give her breaks so that she has the chance to rest and recharge. It just seems like slowly you start to figure out ways in which you can help, and doing a whole bunch of small things start to add up to a lot.

I’m not going to say for a minute that things are easy because we both have our days. Some days my wife finds it really tough and has to really dig down to find that extra strength to keep going. As well I have really tough days where it all seems to be too much, but by the grace of God we help each other get through things. I feel very lucky to have a spouse to go through this with even though it’s just as hard on her. I can’t imagine how a person can get through this without someone there with them.

Throwing a couple of kids into the mix while trying to deal with my CRPS hasn’t made things easy. As a matter of fact there’s a whole lot more that gets thrown at Donna. Like I was saying before however, is that you just find a way as a couple to make things work and to get through the tough days together. There’s something very rewarding at the end of the day to be able to say “we made it”, in spite of all that you have to go through in a day.

Facing your adversity together instead of in your owns ways is only going to bring you closer together as a couple. You need to be able to communicate and figure out what each of you needs to be able to move ahead and fight this condition together.

Encourage Me Coach!!

Well I just finished watching the Olympics and watched our country win GOLD!!! Talk about doing it in dramatic fashion, right down to the last skier!!! It doesn’t get any better than that and what a feeling of emotions that comes up from within when you watch something like that. It’s a proud moment to be a Canadian! As I sat watching the event I started thinking about what these athletes put into thier sports. These athletes train for a lifetime to get to this level. It wasn’t only that, but look at the strength and determination that they have, or listen to some of the stories about overcoming adversity.

Today I’m not really posting a message on any message, so to speak but am posting one of encouragement. As I watched I started to think about how we choose to battle CRPS. I started to think that in order to become healthy again, we have to have that same type of strength and determination to overcome all of our obstacles. Do you have that strength and determination that it takes to rise above all of the adversity that you face?

Each of us has a different way that we face those challenges that are put in front of us. As I’ve mentioned before I find my strength and determination from God and without Him nothing would be possible. On a daily basis I ask God to give me the faith that I need to get through each day and overcome each and every obstacle as I meet it, until the day comes that I am healed. My faith which is given from God is what gives me the determination to overcome all adversities.

Sure we are going to hit all kinds of bumps in the road as we try to reach our goal but you can’t give up. You have to listen to the coach and learn from what he says. In my case my coach is God!

When these athletes finally do win a gold medal you hear them always saying that it was the “determination”, and “overcoming adversity” that got them the end result. Its been four years that I’ve been building on my faith and I feel more determined than ever to achieve my goal!

Sleeping With CRPS

Well today is a new day and my head still hasn’t cleared. As you may remember from yesterday’s post my head was in a bit of a fog. Well today it is still as bad as yesterday however I’m going to try to post another blog. I just want to tell everyone that if you start reading sentences over again its not your eyes its just my inability to think straight!!!

It doesn’t help that last night I got next to no sleep, and now this morning I’m trying to deal with two wild and crazy kids. Actually the kids are being really good and making me very proud. If you are a person reading this that suffers from CRPS then you are no stranger to a lack of sleep. Many of us that have CRPS have real problems sleeping for various reasons. My reason is that my movements at night cause me pain and ever time I move into a different position I wake up because of the pain. When I do manage to get any sleep it’s usually very broken waking up ever half hour or so.

This pattern of broken sleep continues until my body finally says that it needs some sleep and I get a half decent nights sleep because I’m so worn down. I could use sleeping pills however it’s hard trying to get excited about taking another pill. If it really came down to it, I would if I had to. The problem with taking them is that I end up feeling really groggy more often then not and so it becomes a trade off because on one side of the coin I don’t get any sleep, on the other side I spend more time feeling groggy!! You can’t seem to win!!

There are nights however that I get a good nights rest and those are like winning the lottery. It’s pretty pathetic when all you wish for is a really good nights sleep. On the other hand my family gets a happier dad to deal with the next day. So in many ways they are the ones that have won the lottery. For a while now my kids have been calling me “Daddy Bear” hhmmmmmm maybe there’s a reason for this!!!! Could dad act like a bear sometimes??

With my sleep being the way that it is I’ve been starting to take rests in the afternoon when I’m not in therapy, so I can get that extra little bit of rest that my body needs. Naps are important and I strongly recommend that you try them if you can. I know how hard that it can be to get comfortable enough to sleep for any length of time. So what I try to do is take little bits and pieces when I can. This makes up for the long nights that I don’t get any sleep at all.

Nights can be really difficult when I’m not having a good night. It would be OK if I was able to read a book because at least I would be able to pass the time. However that is hard to do isn’t it when your head isn’t clear. Sometimes the nights can really seem to drag out. What makes things harder is that during the course of the night you get teased with these little mini naps only to be woken up in pain. Then of course just when your getting tired enough that you feel like you could sleep, it’s time to get up and start the day all over again.

My purpose for writing about sleep is that I wanted people to understand that CRPS is something that we live with 24/7. This is what makes it so hard living with this condition, you never seem to be able escape the pain.

My Brain Is Taking A Holiday!!

Tonight I’ve decided to give you a message that comes out of frustration. I’m working on another post which I was looking to put up today however as you’ve already noticed that didn’t happen. At times I have a really hard time trying to put a simple thought together and today was one of those days I decided to give it a break and maybe return to it tomorrow. When I went back to edit it, I realized that I was having a really bad time writing what I wanted to say. So as I was writing, it became more and more evident that I needed to take a break. After about the fourth time writing the post I finally took that break!!

So why was this happening do you ask? Well there are a couple of reasons this was happening. It’s a combination of the medications that I take on a daily basis combined with the CRPS. When I have bad flare ups they to can cause a lot of fogginess in my head making it hard to concentrate. Yesterday was a bad day as well however things seem to have gotten worse today. It can be really frustrating for not only myself, but for my wife as well because she has to put up with me on those days.

I remember one day last summer when I was playing a game of scrabble with my wife during one of my episodes and I could swear by the end of the game that she was ready to kill me. At first I couldn’t understand why she was so mad, only to find out later that I was taking 20 min to make three letter words like dog or cat!! OK! OK! Maybe she had good reason to be upset!!

It’s just a part of what I have to go through day in and day out in order to have some form of relief from the pain. So there really isn’t much of a choice if I want to be in some comfort. It takes a couple of days for things to settle and then I’ll be OK. It’s just that at times it can feel so debilitating, and I get so frustrated when I can’t control my own brain. Even simple things like reading a book become difficult because I lose my concentration in a moment.

The hardest part about when these episodes occur is trying to learn to tell myself when to slow down, and not to get frustrated with myself. That’s a very hard thing to do seeing as these are simple day to day functions. However on some occasions it’s harder to do than on others. Particularly if I’m having a really bad day with pain it all becomes too much to take. I can concentrate on my relaxation techniques but there are times where that makes things even worse.

The other reason that I get this way is because of the CRPS itself. There are real off days!! Today just happens to be one of those really bad off days! My pain isn’t what’s over the top, it’s my head and my nerves that are causing some real problems today. I’ve had that feeling of being on edge all day, which becomes really exhausting and takes every last ounce of energy from me.

I really hate days like today because they are unlike other days where I wake up knowing that I’m going to be having a rough day. On days like today symptoms come on really fast, making them hard to control. As a result I don’t do as good a job in controlling them.

So for tonight I will say goodnight and I pray that tomorrow brings a better day so that I can post the message that I’m working on.

What’s Your Quality Of Life?

It’s been a really long day and I’ve been doing my best to get through the day. My pain level today is off the charts!!! All day I’ve been fighting with my pain to the point where I can’t get comfortable at all. I did manage to have a couple of great laughs watching the show “Modern Family” with my wife in the evening though. Once again laughter is a great medicine!!! Tomorrow will be a new day and I will hope and pray that the pain eases. Today however I wanted to write about quality of life.

One of the things that I’m learning through all this is that my quality of life can still be good even though everything seems so bad. Sure my quality of life at the moment isn’t what I’d like it to be, however I’m still learning and adjusting to the way things are now. With what has happened to me there are so many levels to which things have changed. On one side of the coin I have to adjust to the physical changes that have happened to me and try to deal with all the different ways in which I have to do things now. Something as simple as trying to butter a piece of toast is no longer simple to me anymore. It’s not that I can’t do it anymore I just have a different way of doing it now.

So changes have been made to a lot of ways that I do things, some easier than others to say the least. Have I made all the changes that need to be made? Are things working out perfectly with some of the changes I had to make? No to both!! The point is that changes can be made and a better quality of life is possible. It just takes time and it isn’t going to happen over night.

This year there are a couple of things that I have started working on to improve my quality of life. One of my biggest passions before all this happened was playing golf. I was practically born with a club in my hand and when I was diagnosed, something that was a very big part of my life was taken away from me. Another big part of my life that was taken from me was my love of photography. Now these were two very big aspects to my life and to lose them both was huge. For a while I was stuck thinking that they were both gone and that they couldn’t be replaced.

As hard as it was for me I am glad to say that this year I was able to play golf this year for the first time in 5 yrs. Like I said before changes have to be made and I was taught be rehab how to play with one hand. I had to use a cart and could only play a bit however the point is that I was able to do it. Do I play every day? No! I haven’t played since the summer because of some setbacks, and this is what I mean by taking time. It’s going to take some time to make this a regular in my life again. What’s great is that it adds a whole new dimension to the quality of life I live.

The other change that’s occurred in my life to improve my quality of living is that I’ve started to paint. I tried to start my photography again, however I was having too much trouble trying to use the camera again. So it was at this point that I decided to teach myself to paint. I found a way to express the same things that I did in my photography just in a different medium. Again what I was able to find was a different way of putting the puzzle together. I was also thinking about starting to post some of my photo’s here on my site and maybe selling them. What does everyone think about that?

The second way to which I have had to adjust is to the emotional side of things. There have been so many ups and downs, that trying not to let the negative creep in to my mind has been difficult. Even trying to deal with how the rest of your family deals with this is difficult. On a day to day basis I see how something like this affects my family and that is really hard on all of us. There is only one answer for how I have been able to deal with the emotion side and that’s my faith in God.

Let’s face it what I am going through is emotional stuff, and whenever I need to get through an emotional time I turn to my faith. It helps me through each day and there are days that I wouldn’t be able to get through things without His help. People ask me how I get through this? How do you live with such pain? How do you deal with your emotions? The answer is simple in that God is with me every step of the way.

If you suffer from chronic pain then there is something that you need to remember in all of this. You can better the quality of your life it just takes a little time and effort!!

Laughing With Our Kids!!

At this moment I’m listening to my kids laugh and giggle as they play with each other. It’s a rare moment as other parents out there know!!!! When you here it though it warms your heart and reminds you about how much you love them. I know as parents we spend a lot of time complaining about all the bad things that our kids do, and we to often let the good pass us by. I know! I know! there are days that they really do drive us crazy however the good certainly does out way the bad. The memories that we build with them are important and we need to think about them more often.

I have the best kids in the world! Sure they get into trouble for things they aren’t suppose to do but what kid doesn’t!!! We sometimes forget THEY’RE KIDS! Yes you probably get frustrated chasing your 3yr old around the house when they don’t listen to you. Let me tell you it’s even more fun with one hand and one foot! Or better yet my girls love to mock me by walking around like dad, pretending to have canes and not being able to use there hand!! It’s the times like that when it makes it all worthwhile and you forget all the things they do to drive us crazy.

People often ask me how I get through my day with my pain being what it is. I tell them that my kids make me laugh!! Is every day a good day? Not by any means! It’s that one time when I’m feeling sad or down and they make me laugh that’s worth a million bucks. Lasting memories is what it’s all about!! When you have kids, you have to be able to re-live your childhood and learn to embrace it. You really haven’t lived life until your kid has barfed on you a couple times. Good times! Or the times that your kids have peed on you. Then there are the times that your child wakes several times during the course of the night, when your nice and warm under the covers sleeping like a baby yourself. Yes! we still love them don’t we!! Isn’t this the reason we became parents in the first place, to embrace everything that comes with parenting?

My daughter Emily is the more cautious of my two kids, and I’ll never forget bringing her home for the first time. When in China she wouldn’t walk for us, and she was very scared to be away from our side. When we walked in the door of our house for the first time we put her down in the kitchen and she started running laps around the centre island in our kitchen. She was also scared to walk from the lino across the hardwood to the carpet. She would get down on her knees and crawl across then stand again.

At the same time however here is this cautious little kid who loves to go on the scary rides, and in her brain the scarier the better. Riding the roller coaster is in her future and I can see her being one of those kids that travels the world to ride each and every coaster there is. She also loves tobogganing! Did I mention the steeper the hill the better.

Then there are the times that Emily likes to mother us and tell us how we should be doing things according to the rules that we have set out for HER in the first place. It cracks me up when my kid uses my own rules on me. Am I or am I not suppose to be the one making the rules?? Katelyn our 3yr old has had her fare share of moments as well. Like the time when Emily came in from when they were playing outside to tell me that Katelyn was running around in the nude. So out I went to discover her on the swing set riding the swing in the nude. In her mind riding in the nude is better!!! Never mind the fact that now that she has no diaper on she has pee running down her legs!!

Katelyn also has a favorite saying “I’m frustrated!” What I love is that she looks at us with this real serious look on her face and crosses her arm’s and says it. Five seconds later she breaks out laughing at herself. These are the types of things that I’m talking about, memories that will be forever etched in my brain able to bring a smile to my face.

Time goes by faster than we realize and you don’t get a second chance to watch them grow up! So the next time that your daughter or son flushes something down the toilet and you spend the next several hours unclogging it. As you quietly curse under your breathe. Remember all the things that they have done to make you laugh!

CRPS & Your Emotions!!

It’s been a tough couple of days for me and my minds been on other things besides my blog. As I mentioned in a previous post I had surgery a couple weeks ago to fix a problem. Well a couple days ago I found out I’m going to need surgery again because the original issue isn’t fixed. I’m very frustrated right now and of course this has . The hardest part about having CRPS is not only the pain, but trying to control the emotional roller coaster that you ride. My latest turn of events has caused my stress level to rise. Again I feel like I’m riding that roller coascaused an increase in my stress.

Anyways enough about that, today I was feeling inspired to talk about one of the ways in which I deal with my pain. The pain is worse today and along with that I’m finding it hard to keep my emotions under control. It’s perfectly logical that my pain would be worse because my stress level is up, as well as the fact that my emotions are on high alertter twisting and turning out of control. The easiest way to explain how I feel is that it’s like I’m on edge all the time, never knowing when you going up or coming down.

When my pain gets bad and my emotions start to run high then I need to focus on trying to get them under control. What I need to do at this point in time is try to get my nervous system to calm down so that I can relax enough to ease the pain and at the same time manage the emotions. This is where I rely on my relaxation therapy, which consists of breathing exercises that help to calm me. This then helps my nervous system unwind because it gets wound up so tight. When my nervous system isn’t as tightly wound up then the pain eases and I’m more in control of my emotional state. I’m not saying that this type of therapy works for everybody however it seems to work for me.

Can I say that the pain is totally gone? No I can’t! What I can say though is that it’s controlling the pain so that it doesn’t keep building and building. Without a doubt it helps me manage the constant flare ups that I suffer from with this condition. This would be all the ups and downs that I’ve gone through where the pain gets worse over a period of time and then takes several days to get better and calm down.

As you start to manage your pain level your going to find that you feel better emotionally. What I am finding is that I’m taking lessons in patience!!! Managing your pain doesn’t happen over night and you are bound to have lots of ups and downs.