I am often asked how I can do so many things with full body CRPS? How do I go to Orlando attractions with my husband Jim or travel to DC to see my grandson? I was 38 when I was injured. My girls were 11 and 13 years old. I made a decision way back then that I could sit at home and not participate in family activities or I could swallow my pride and use a wheelchair. I walk within the house but when we go out anywhere, it is done in a wheelchair.
To prevent atrophy due to non-use, I ride an exercise bike daily. This is non-weight baring but it helps keep my muscles strong and increases blood flow to my foot. I've tried weight baring exercise which is better for you but my foot can not tolerate that. The crush fractures of my foot and subsequent fusion surgery are what caused my CRPS. The orthopedic injury was bad enough to have disabled me even if I never got CRPS.
This is not always easy. Sometimes, like everyone else, I over do it and pay big time for it. Other times there is something that I really want to do but it isn't feasible even in a wheelchair.
I choose what activities are important to me. I can't do everything and if I try I will end up not being able to do anything. When my children were young; I asked them; what event that you have this week or this month is most important to have me attend? I made sure that I had rest days before and after those important activities that they wanted me to watch.
My husband likes to plan surprises. He gives me dates to reserve. Again I plan days before and after to rest. He knows my limitations. We use the wheelchair. If I can't do everything that he has planned; we just skip it. When we are away, we go out in the morning to do things and spend the afternoons in the hotel/timeshare so that I can rest before we go out to dinner.
I know that some have injuries that a wheel chair won't help. When I had my back injury; I could not sit in a wheel chair. I was only comfortable when I was flat on my back. That year between the injury and surgery; we did very little. I get it that not everyone has something like a wheelchair that will allow them to get out and do things that they enjoy.
With ketamine infusions, I am also able to do more things. The LDN reduces the frequency, severity and duration of my flares. I still get them. Earlier this month I had the worst flare that I had had in 10 years. Why? Because my adrenals decided to stop functioning and my May ketamine did not help. It is a huge emotional set back when something new crops up. We have figured ways to deal with our main health issues. When a new one pops up, we feel defeated. Instead we need to try to stay positive, to look for answers as to what is going on with this new symptom and not automatically assume that it is CRPS related. Not everything that happens to us is CRPS related even though it feels like it is.
I try my best to keep a positive attitude. That is not always possible but I have always been a glass half full person and have tried not to let CRPS change that.