Well nearly a week has gone by and there has been a turn in my symptoms that I suffer from and it isn’t all good!! As I mentioned in my last post Christmas can be one of the toughest times of the year for those of us who suffer from CRPS to get through. As we get busy and the stress level comes up the symptoms rear there ugly head again more frequently, making it difficult to get through the day.
Last night was my daughters Christmas performance at her school, and I was having a bad time with my pain. So I was dreading going to this performance because I knew things could only get worse. However I knew that for my daughter this was an important night, so under no circumstances was I going to miss this! So away I went armed with earplugs to combat the noise, and saying a prayer for God to get me through the night. Once again prayer was answered and I had a great time at her concert!!! My pain didn’t stop me from laughing and having a good time. I wasn’t pain free, but the pain wasn’t to the point where I knew I wasn’t going to make it through the night. I consider this a small victory over a disease that can be so unpredictable and unrelenting!!
Ok! If it wasn’t enough to be going to my one daughter’s concert last night, I had to go to my youngest daughters school concert tonight! All things considered things went well for the most part, until a large group of the kids were given bongo drums to beat on for our enjoyment!!! If that didn’t send me off to the corner rocking in the fetal position, then nothing tonight was going to. Let’s just say that for this year I’m done! I had a great time at both of my girls concerts however my nerves are done! I don’t know if I’d be able to do another night. Like I said before these are moments that I wouldn’t miss because they are about making memories with my family. I’m not about to let this disease take memories like these away from me! So for me it’s worth putting up with the pain.
When I was try to think of two words that describe what it’s like to live with CRPS, the two words I came up with were unpredictable and unrelenting. It is a very upredictable disease because you never really know when it’s going to flare up and cause your pain to escalate. Sure! I have been able to learn about my different triggers that cause a flare up, but it’s still hard for me to tell when I’m going to be affected or even how long it will last at it’s worst. If you ask one person how CRPS/RSD affects them and then you ask another person, very often you will get two different answers. The symptoms of CRPS/RSD tend to be the same however the way in which people are affected sometimes tend to be different.
The second word I use to describe CRPS/RSD is unrelenting. I think the word really explains things itself. When your living with CRPS, your always fighting one of the symptoms. The disease itself is always throwing something at you. One day it might be the pain, and then the next it might be the headaches. Just when you get those things symptoms under control, another symptom like the inability to finish a simple thought might be the next that your dealing with. It seems to be this vicous cycle that happens over and over but never seems to go away.
There are lots of different words to describe CRPS/RSD however I would go on and on if I did that. What my goal was to do however was to give you a little insight into the world that I now live within. If you live with CRPS then you know what I’m talking about. It’s like I said earlier though, you can let it take away all those great moments in your life. Or you can choose to take control over it and manage it. Last night before the first concert, I didn’t know how I was going to get through two nights of concerts feeling the way I did. So how do you take control over the pain when it gets like that? You ask God for help with the pain. When things seem impossible and there doesn’t seem to be any hope, then that is when God is in His element.
If you live with CRPS then you need to know that it is possible to beat something as unpredictable and unrelenting as this. You don’t have to give in a say that there isn’t any hope. Or you don’t have to settle for a life filled with uncertainty. I’ve said this before and I’ll say it again, what choice have you decided to make? I’m not saying that I don’t struggle in dealing with my CRPS because I do. Do I understand why I became sick? No! Do I fight an inner battle with the pain and others symptoms? Of course I do! As you read in this blog, that is something that I deal with on a daily basis! What I am saying though is that I put my trust in God. Whatever the battle it is I’m fighting, He fights it for me. I’ve made my choice!
It’s like a boxer who’s in the ring being hit by punch after punch. Sooner or later you start to getting worn down and the only hope that you have to win the fight, is to rely on the trainer in the corner. He guides you and tell you what to do in order to win the fight. Well taking on this fight is the same, you need that person in the corner who can help you win the fight. Ask yourself this question. Who is in the corner helping you win your fight?