I promised myself yesterday that I wouldn’t let weeks go bye before I put up another post! Look at me! I’m trying to get back into my writing but with two busy kids and living a chronic life it’s not the easiest thing to do in this season of my life. It’s hard to believe but I’ve been writing this blog now for seven years! It seems like just yesterday that I was writing from a place of uncertainty when I was first diagnosed. Without a doubt the last ten years has been filled with some pretty emotional stories! This last few weeks has brought all those emotions flooding back! On Nov. 2 when I hosted CRPS Awareness Day I saw faces in the auditorium that almost felt as if they were a reflection of mine back when I was diagnosed. I could see the anger and the fear in some of the patients eyes, and I could hear uncertainty in their voices as they spoke. As I stood in front of those patients I reminded them that “your going to get through this” as hard as it might be right now! I told them not to give up hope!
As I spoke with various people diagnosed with CRPS throughout the day, one of the things that came up over and over was how hard their diagnosis has been on the family as a whole. An illness like CRPS has a huge impact on how the family functions and it adds even more stress to your relationships. Sometimes we don’t stop for a minute to think about how chronic illness affects them. I have a wife who has sits back and watches every day play out in front of her with there being very little she can do to help me. What support groups are there for her? None! My children being kids would like nothing more than to be able to run up to dad in the morning and jump on me or do the usual things they do with their parents. They can’t! Who explains to the child why all of this has to be this way? The parents! Fortunately God has given a lot of wisdom and understanding to manage all of this.
Family life is a bit different when your living a chronic life, and has taught me to how to have grace for others in the family who have to deal with me being ill. God helps us navigate our way through it as a family. Most of the time we talk out loud about challenges we face and work on how we can make things better. It’s not to say that things are easy all the time because they aren’t. Often there are times of misunderstanding and it takes a whole lot of listening and explaining of things to each other in order to work through the challenges we face. Now I don’t want to paint a negative picture of what family life is like because if anything in a lot of ways this illness has made our family stronger. I’m just saying that an illness like CRPS changes how you go about every day life. On the days that my wife is having a tough day I try to be there just as she tries to be there for me on my bad days! Am I perfect and there for her on every one of those days? Not at all! This is what I’m talking about in that it isn’t easy, that there’s a lot of give and take in order to support one another in the ways that we need to! There are a lot of days where I have to humble myself to tell my kids “sorry that daddy was a grouch today, the pain got the best of me” in order to help them understand why dad is acting the way that he does!
Its not easy to explain every aspect of how family life changes with a chronic illness because it can vary so much from family to family. What you really need to know though is that it affects the interactions and relationships between family members! There are lots of days that I want to blame my illness for everything and how its affected our family but what good would that do. What I really need to do is focus on making those relationships and interactions the best I can within the peramiters of my illness. Fostering strong relationships and interacting can be tougher however and takes a bit more effort when your dealing with an illness like this. So as a family we’ve had to put our heads together to figure out the best way to do that! We have relied heavily on asking God for wisdom on how to handle this.
So unless there is a cure for CRPS then trying to figure out how to manage my illness with having a great family life will always be a balancing act! So it means being aware of how it can affect our family and not allowing it to have a negative affect on us. We need to keep working hard and to see only the positives of how it has actually brought us closer together as a family.