Pacing Yourself!

One of the things that I find really difficult as I deal with my CRPS is learning to deal with my lack of energy and pacing myself through the course of the day. If you suffer from CRPS then you know what I’m talking about. There are days that I get out of bed and feel like every ounce of energy has been drained from my body. Do you have trouble managing your energy through the course of a day? Then what you have to do is learn to pace yourself through the course of a day.

Your energy levels are affected in many ways and unless we learn how to manage them, then it becomes more and more difficult to get through the course of a day. First of all the amount of sleep that people with CRPS get is a very big reason that our energy levels are affected. So often is the case that we suffer from broken sleep patterns. The other thing that is a big drain on our energy is our pain. Living in pain 24hrs a day is a very significant drain on our energy. The last big reason that we suffer from a lack of energy is from the medications that we take, and the side effects that they have. This being said it’s understandable that we suffer from a reduced amount of energy through the course of an given day. Do you know how to pace your energy?

Learning to do this can be difficult because more often than not we have a tendency to tell ourselves that we can do more than we really can. As I push myself beyond my where I should, what I find is that I make my condition worse. Sometimes this can cause me to flare up.

When you learn how to pace yourself and manage your energy you find that your days are a little easier to get through, because you aren’t feeling as burnt out all the time. But this wasn’t something that came overnight. I have needed to recognize the fact that I can’t do everything that I necessarily want to do. An easy way to teach yourself how to pace yourself, is to assign yourself an imaginary dollar value to your energy level for the day. You would then assign things that you do in the course of the day with a dollar value. When you have reached to dollar value that you set for that day your finished, it’s time to let your body rest.

So take for example that you have $100.00 to use in the course of a day. You may choose to do 4 small things around your house that have a $25 price tag attached to them on a day that you feel like you have less energy or one big thing that has a $100 total value attached to it when you feel like you have more energy. The point is that when your learning how to work or do things within your limits and not to exceed your limitations.

Do I always do a great job at pacing myself? I would say that it’s an ongoing project and that I could do a better job. It’s not always easy because sometimes the desire to do things, just because your tired of doing nothing overtakes what’s right for you. Slowly I have been learning however that you have to give in and listen to what your body is saying to you. I’m finding that as I listen to my body and pace myself through the course of a day that I don’t get as many flare ups!!

The Waiting Game With CRPS!!

Today my stress level is a little higher than yesterday which may be one of the reasons that I woke up in a fog. My pain level is on the rise however I have had a couple of decent days. If you have been reading earlier posts then you know that I have recently had some surgery and am waiting to have some more surgery done. Well yesterday I went in to meet with the surgeon to find out that I have to wait for another two months until I have something done. Without getting into detail I understand the surgeons reasoning however it’s just hard to sit back and wait while you are in pain.

It’s the waiting that’s the hardest thing to deal with. Waiting for 2 months isn’t bad compared to some of the specialists appointments that I have to wait for. Sometimes I have to wait up to 6 months just to get into see them, and that’s just for the consult to be done. Then you usually have to wait and have tests done so another 3 months goes by before you see him again. My wife is waiting to have some tests done at the moment. She’s dealing with a problem right now, however the date of her test isn’t until October. This is crazy! Waiting for 8 months isn’t right. She then has to wait another month until she sees the specialist. Why do we have to wait so long???

I understand that specialists are busy and that there aren’t enough to handle the demand. I understand that the wait for tests is long. When you allow time to roll by though without treatment then your chances at making a full recovery aren’t as good. This is the case with any illness or disease. So my question is what has to be done in order to diagnose people quicker to get them into treatment faster?

What I find is that people with chronic pain often take a back seat to other illnesses which lead to death. So what happens is that when we go to see the specialists, because we aren’t at risk of dying we get shuffled to the bottom. Now I’m not saying that those cases aren’t important and don’t deserve high priority, however we do get lost in the shuffle and seen as less important. Look at the number of people that live with chronic pain as opposed to cancer or heart problems, the numbers speak for themselves. All I can say is try living with chronic pain for a while and see what it’s like. I can assure you that it’s not a party!!!!

As you can see I am frustrated with all the waiting that I’ve had to do as well as the waiting I’ll have to do in the foreseeable future. I’m not mad at anyone in particular however I’m mad at the fact that I was bounced around like a basketball because nobody knew who to send me to. As a result it delayed my treatment which has made it a tougher hill to climb. I’m not the first person to say this, and it doesn’t only apply to people dealing with CRPS. Its time to shorten our wait times and start doctors to really start listening to there patients when they say they’re in pain!

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!!