Written by Samantha Barrett
What is your limit? How far can you truly push yourself and your CRPS? How do you gauge each and every day when your ability changes by the hour? Samantha has experienced this and has some stories that may help.
As someone who has been living with CRPS for over a decade, I ultimately know what my limits are. Did I learn what they were right away? Absolutely not. There was a lot of trial and error in the process. But overtime, I’ve learned to read the signals that my body has given me. I’ve met a lot of people with CRPS in my time with it, and the one thing everyone is trying to figure out is what is pushing too far and when they can push more. While I’m not an expert, and I don’t play one on TV, I figured I’d offer a little bit of insight to this subject.
First of all, we need to make one thing incredibly clear. Only you can tell what your body is feeling and experiencing. Your best friend, mother, brother, neighbor, or local sales person cannot personally feel or experience your pain, fatigue, or anything else. Therefore, only you can make the decision about if you’re in too much pain to do something. Don’t get me wrong, there are days when I ask my family or friends if I should do something, for example: “Well, we just went to a movie. Do you think I should try to go shopping now too, or should I go rest?” In reality, I’m not asking them how I feel. Overtime, it’s become my warning (which they understand). I should be saying: “Hey, we just went to a movie, I don’t know how much longer I’m going to last, but we can try to go to a couple stores.” I’ve experienced something that I expect most people have. A group of friends wanted to go ice skating (yup, ice skating) and asked if I’d be going. I said no, my ankles can’t handle that and the cold puts me in severe pain. A few of them got frustrated with me and said I wasn’t even trying. At the time, I was devastated and debated on trying to go. I didn’t end up going. I tried to explain to them, even after it all settled, but they never understood. Needless to say, this type of thing happened a few times and I’m no longer friends with them. Trust me, you don’t have the time for that kind of negativity in your life.
While many of you have heard and use the spoon theory (which I do too, especially for POTS), that doesn’t always make sense to people. With CRPS, some days I can handle much more than others, while other days I can barely handle brushing my teeth. When I try to make plans in advance, I make sure to remind people that my ability to function changes with each day. Things like the weather, stress, sleep, activity, and more can affect my abilities. So, if I make plans to go to dinner with friends one night after work, I try to keep them updated during the day. Some days, I can push myself to go to dinner. Other days, I know that if I tried to go to dinner after work, I’d be paying for it dearly within 10 minutes of sitting down at the table. While cancelling or postponing is never fun, it is something you have to come to terms with. When making plans, I’d recommend making that clear.
Special occasions are tough. Whether it is a holiday, a milestone event, or a celebration, most of the time we don’t want to miss these events. If I know I have something big coming up, I try to take it easy for at least a week in advance. I still work and do errands, but I won’t do anything extra. When the special occasion comes up, I try to make sure I take it easy during the event. If it’s something like Christmas, I’ll wake up, go out and open presents with my family and eat our cinnamon buns (tradition), but then I’ll go sit or lay down for a bit. We do all of our prep for holidays the entire week before. Then, when it gets closer to people coming over, I’ll get up, get dressed, and head back out to the living room. I’ll help out here and there, but I save all of my energy for when people are actually there. That night, I go to bed as soon as I can to start trying to regain my strength. While it hasn’t happened yet, I’m doing a similar thing for my wedding. I took a few days off before the wedding (both to finish last minute details and to rest). The rehearsal will be short, I’ll sit for almost all of the rehearsal dinner, and I’ll hopefully go to bed early. My bridesmaids are staying at my house the night of the wedding so they can help out the next day. I’m getting my hair and makeup done at home, I’ll be resting up before I put my dress on, and we made sure to factor in some time to sit down and relax in our prep room at the wedding venue. Unfortunately, to save my energy, this means I’ll be missing out on my cousin’s graduation party, but I have to conserve my energy and keep my pain and stress low, especially since they live a few hours away.
Now, life will always have stressors in it, that is inevitable, however there are times when stressors are worse than others. Every day stress can be pushed through (i.e. traffic, work, what to have for dinner, etc.). But there are some stressors that require you to take a step back, absorb what’s happening, and rest your body up. These stressors are major events or major news that rock your world a little bit. When your body is under a lot of stress, your pain levels can escalate and your immune system can be lowered (again, I’m not a medical professional). But it is during these times where you need to take care of yourself.
If there is one thing you take away from this blog, I hope that it is you must take care of yourself without feeling guilty. We are only given this one life to live. Yes, we’re living it with pain. But we just have to adapt and keep on moving forward. We know what our bodies can handle, what will trigger our pain, and how to cope with our pain in most cases. Take charge of your life, push yourself, but not beyond your breaking point. Live life to the fullest and remember to be confident in your decisions. You have to do what is best for you.
Written by Alyssa Skillman for the RSDSA blog. 
Written by Shannon Leidig for the RSDSA blog.
