CRPS Surrounds You In A World Of Pain

I thought that today I would turn the focus towards something that I feel is a vital part of coping with our CRPS. Learning to focus on things other than our pain can be hard because it almost consumes us, and at the best of times can be hard not to think about. I have to be the first to admit that when I can take my focus away from the pain, then I go for longer periods of time with reduced pain. That is if nothing happens to cause an increase in the pain. It's the combination of trying to stay relaxed, and focused on something other than the pain that is so hard.

I sometimes feel as if all of my time is spent talking about my pain and CRPS itself to others around us as well as those closest to us. No! Let me rephrase that and say that I am always talking about my pain. I think it's important to think carefully about how we talk about our pain, because if we don't then it can feed into our symptoms and make our condition worse. However on the flip side we want to make others aware of what this disease is all about and raise an awareness to others. On those rare days that I don't talk about pain or about the pain I'm in, it's almost refreshing and to some degree you feel as if things in your life are normal.

When your in constant pain it can be hard to just forget about the pain. I'm not saying this is what you have to do, however I am saying that you have to look for ways to distract yourself from it. If you suffer from CRPS then I'm sure you understand when I say that you are surrounded in a world of pain. The way I see it there are two parts to this world that now surround us. There is the physical pain that we suffer from and then there is the way in which we deal with the pain.  The physical pain from day to day can be really hard to control and to some extent be out of our control. The way in which we deal with it is within your control. So this being said you might think that the two parts aren't related but they are. The way in which you deal with it can directly reflect on the physical pain that you feel.

I'm no doctor and am not giving any medical advice, but what I've found is that by listening and applying what my therapists tell me to do can help me with the physical pain. The more you think about your pain can make it worse so I have found that if I can manage to shift my thoughts away from the pain then I can sometimes be successful in reducing the pain. So how do you do this? There isn't an easy answer. Not talking about it all the time as I've already mentioned can help. Another thing that works is taking on a project. It gets me excited about the project and getting ready for it. Right now we are doing a small reno in our kitchen. It's something that has my mind occupied at the moment, but even more important helps me forget about the pain for just a minute. Even if it's for just that minute that I have some relief then you take it!

The reality is that if you live with CRPS then you live in a world surrounded in pain. What do you do to take your mind off of it! Do you allow it to control you or do you try to take back what it has taken piece by piece?

Raising Kids with CRPS = Stress!!

One of the hardest things in dealing with my CRPS is trying to take on the day to day with my kids. Lets face it the roles in this house have changed, and now I stay at home with the kids while my wife works in the morning. While everything that we face in dealing with our CRPS is difficult there are some things that are harder than others. Trying to take on the role of stay at home Dad is a tough one for me.

This particular change is one of the hardest for me. It is also one of the reasons that I continue to deal with flare ups that can go on for a couple of days at a time. All of you parents out there know that being a parent is exhausting and it becomes even more exhausting when they are fighting with each other day in and day out. It works out quite well that my wife works part time because I can only handle so much. It then becomes her turn to spend her time being referee and handling our crazy but yet so incredibly lovable kids.

It hasn't been easy to handle the kids yet I manage to do an ok job with them. I can't do everything with them that I'd like to however I do manage to give them ME which is really what matters when you come right down to it. There are days that the stress builds up I know that it will effect me in a negative way, however life has to move forward. The one thing that I'm sure of is that I don't want the kids to suffer because of me. To some degree they do because of my inability to do certain things, however that's where my amazing wife comes in. She has an amazing gift for raising kids and makes sure that they get to experience the things that every kid should experience.

The hard part in all of this has been trying to find a balance where the stress doesn't become to much, which is easier said than done. There are days where I feel like I'm holding on by my finger nails. It takes every ounce of energy within me to keep going! My wife will be the first to say that those days where I'm just holding on are the hardest to watch me go through. On days like that I really need my relaxation techniques to get me through the day.

Anybody that has kids, knows that there's stress at the best of times raising your kids. It just seems that all the little things that get on a parents nerves become amplified when you have CRPS. Let's face it the yelling and screaming that kids do is a perfect recipe for increasing pain levels. When kids fight, dealing with those issues also gets your nervous system all wound up. I could go on and on however I think you get the picture of what happens dealing with those things on a daily basis.

So how do you avoid the added stress that those things can bring on? I don't think that there's an easy answer to that. I think a person has to do what works for them to avoid flare ups. Between my wife and I we've been able to find a way to make things work. We have a great partnership when it comes to dealing with the kids, and she's able to read when I need a break. I don't always do a great job in saying that the stress with handling the kids is getting to me, so I really appreciate her slowing me down and making me realize this.

The bottom line is that there is no way to avoid the stress that is brought on by kids. It will always be there however there are lots of ways that we can minimize the stress to have a better quality of life. The way I see it I have at least seventeen more years before my kids move out!! So I need to figure things out so that it doesn't cause the flare ups.

Feeling Scrambled!!!

Well there's only one thing worse when it comes to dealing with pain on a daily basis. That happens to be the combination of pain with the fuzziness and headaches that you get when your dealing with CRPS. Today happens to be one of those days where everything seems to be a little more difficult for me. It seems as though every thought is just a little more difficult to proccess. What I find on days like today is that the day becomes very long and wearing on me.

On days where this happens I often try to do as little as possible because I know that this is my bodies response to slow down. To give you an idea of just how bad it can sometime get, I'll tell you about a time when my wife experienced my brain freeze and was ready to kill me. We were playing a game of scrabble and I was feeling like I am today. As it came around to being my turn I spent the next few minutes making a word, not really understanding how long I was taking. If it wasn't bad enough I was also making three letter words like mad, sad, and bad. I'm pretty sure that by the end of the game she was ready to kill me.

So if you are having a hard time reading this and some of the sentances don't make sense then have mercy on me because I'm having a hard day. From time to time the medication that I have to take shows, some of the nasty effects that it can cause. However it's not all the medication that causes some of these crazy things that happen in my head. The disease itself causes some of those headaches and some of the fuzzines.

These side effects in some ways can be worse than the pain because they really shut things down in your head, making it hard to function the way a person expects to function daily. All one can really do is fight through all the symptoms and hope and pray that tomorrow will be a better day. So for today I'm keeping things short and maybe the next day I post I'll be feeling better.

This is another reason that I have chosen to get the implant, so that I can reduce the amount of medication that I have to take. Hopefully this will help so I don't suffer from these things. Bye for now!

Pacing Yourself

One of the things that can be a problem for me is trying to pace things, so that I don't cause myself any more pain. There are lots of times that I push myself too hard because I just want to get better. So what happens is that we end up having to back off my physio so that my pain can subside a bit. Or it can just be me overdoing it in general. My bodies response however is the same flare up!!

We have been trying really hard as of late to try and get some more movement in my ankle. I really didn't think that I was overdoing things, however my body recently has been telling me a different story. It seems as though I have been overdoing it and now I have to start listening to my body again! It can be really hard when the signals aren't getting through to the brain properly. I might think that I'm doing things within my limitations when really I'm not. What I'm finding is that I need to really take the time to slow down and make the right decisions. Might sound easy to do however when your dealing with CRPS that isn't so easy.

With every decision that you make it can be like a ticking time bomb because you don't know if it's going to set off a flare up. So you try as hard as you can to take things slow and increase the things you do slowly so you don't wake the angry giant that is inside. Tell me that it isn't frustrating that I can't take a simple walk around the lake that I live by!! I try to stay positive and see any bits and pieces of improvement as positives. It still doesn't make it easy, because for years doing the basic things in life where so easy for us. You learn to appreciate those simple things.

All the ups and downs can be really hard on us, and we can't give in. We need to stay focused on all the things that our therapists tell us to work on. Listen to them when they tell you that you might be overdoing things a little to much. Sometimes our wants and needs can stand in the way of us making those decisions that are right. You need to listen to the advice of the people that are helping us. Remember that they want to see us get better along with everyone else.

Just remember to take things at a pace that doesn't set you back, but keeps you moving in a forward direction. We need to learn how to read the messages that our body gives us. When I do a good job listening to my body then I find that I go for longer periods of time without a flare. When I'm not taking those things into consideration then the opposite happens. It's about finding a balance, and as you do that then you start to see progress. As you pace youself then you start to create a balance. The hard part is trying to keep pacing yourself.

A Lesson In Faith!!

Once again my body is screaming with pain!! I think it's safe to say that yet another flare up has started. I'm back into my fighting mode, and keep praying for some relief from the pain. When my pain gets this way there is very little I can do to get it to subside. It takes everything inside as I've said before to keep things going and to stay positive.

It's at this time when I can't take anymore that my faith is tested, and I have to rely on God to get me through the tough times. I've mentioned before in previous posts, that without God I wouldn't be able to get through what I'm going through at the moment. It can be really hard to walk through something as big as this in faith, and not have moments of discouragement. There isn't a day that I don't ask God for my healing. Yet its been five years and I haven't seen it yet! However I continue to walk in faith.

There are times that you may ask, why do I have to go through so much pain? However there is a reason that He doesn't answer, He doesn't want us to know all those answers all the time. If He provided us with all the answers then it wouldn't be walking in faith. It can be hard to understand that sometimes, because all we want to do is get better. As difficult as this can be to understand, our faith is built up as we put our trust in Him. He wants us to learn that he's faithful to us every step of the way.

Tonight I came across a song that explains perfectly what I'm trying to say. The artist is Jeremy Camp. Listen to what the song is saying. Our faith is constantly being tested as we walk through something like CRPS, or anything else for that matter. I just want people to know that it's ok to feel discouraged as you walk in faith. The important thing is to keep walking in faith!! I hope you find encouragement in what it says.

Learning From Our Challenges

Well after last week my pain seems to be doing better. I'm trying to stay as relaxed as possible even though at the best of times it can be a real challenge. I'm going to try to get back to doing something that I really like doing this week and that's painting. I have just started painting in the last year and find it a really good distraction to try to take the focus away from my pain. I was finding it really hard to focus on however and stopped for a while.

Some of you may not know that before I was diagnosed with CRPS I was really into photography and it allowed me to really show the creative side of myself. So in the past year or so I've been trying to look for something to replace that hobby and painting is a natural fit. I have the ability to see the picture I just have to paint it instead of taking a picture of it. Except one thing stands in the way, my drawing skills are made up of stick men and other stick figures. The hardest part to me is going to be trying to learn the drawing aspect.

It's all about taking on the challenge however, and learning and making lots of small improvements. In lots of ways this is much like how I deal with my CRPS. It's about facing a challenge that's been put in front of you and learning to overcome it. Your going to face all kinds of things along the way however you put your head down and you keep on going. Over time as you take on each new challenge, you'll become stronger and better prepared to take on the next challenge.

In a lot of ways I think painting will help me by both relaxing me and helping me in those areas of facing challenges put in front of me. It helps to keep me focused on something other than all the pain which is also a big help. Finding something that can really distract you from all the pain is so important. You don't give the pain a chance to build and build. Not only that though, it gives you the chance to feel good about something. Ask yourself when the last time it was that you felt good about something?

I might only be able to draw stick figures at the moment however my goal in the end is to be able to hang a piece of art on my wall. That is if my wife will let me!! I can make similar comparisons with the way that I have had to learn to deal with my CRPS. At the start it was even harder than it is right now. I knew nothing about CRPS itself and the challenges that I faced. As time has gone by I am slowly facing all those challenges and learning from them. In the end I hope to be able to overcome CRPS itself.

Update on my CRPS!

Hi Again! Things are a little better this week as the pain isn't quite as intense as it was last week. The pain seems to be under better control than it was last week. I still wish that I could get better relief, however I'll take what I can get at this point in time. Although with the way that my kids are fighting my stress level should be up in no time which should bring on the pain!! That's what I hate so much about CRPS and how stress affects it. Stress is a part of life so how do you avoid it? The answer is you don't!! However you can manage it.

Well last week I met with the neurosurgeon, and I have decided that I will go ahead and have the implant done. If you missed my earlier posts I had been talking about how my nerve blocks didn't work with the pain, and that I was going to consider getting the spinal implant done. I have really been struggling with this decision because there are so many good things and bad things to consider. It wasn't just something as simple as going ahead and saying yes. After sitting down with the doctor we decided that it was in my best interest to go ahead and have it done. So now I have the joy of sitting back and waiting for the next three months.

What made things more difficult for me to decide was that I have two limbs that are affected, so its a little bit of a more complicated procedure for the doctor to do. My procedure has to be done in two stages, the hand being the harder of the two to do. What the doctor suggested was that we start with doing the easier of the two which would mean doing my leg first. He suggested that we do the one first and see if it's going to help with the pain. He was suggesting that if it wasn't going to work then it wouldn't matter if it was my hand or ankle, so why subject my body to the tougher of the two procedures.

After meeting with the doctor I felt better with the way that he had decided to take on my procedure. He explained some of the concerns that I had, and made me feel better that I was making the right decision. I'm still not crazy about having something foreign in my body, however if it reduces the pain then it's worth it. The other thing that made me feel better about my decision was that if I really want to I can have the unit taken out if need be.

Like anything you need to do your research and see what the procedure is all about. After talking with my local implant clinic and seeing the unit, I felt a bit better about what it was all about. The people I spoke with at the clinic also helped with explaining things to me so that my understanding was better.

One of the hardest parts about making this decision was how comfortable I felt with the doctor that will be doing the procedure. It can be so hard to read some specialists however mine comes very highly recommended. If there was ever a neurosurgeon I wanted doing this it would be him. Let's just say that you can't go on bedside manner!!In the end you have to look at how highly regarded he is, and he is at an international level.

So overall I am happy to be moving forward and have faith that this is the right decision to be making. I trust that this is in God's hands and that He will take care of me.