It has been too long since my last entry. Hard to believe that the winter of 2018 is gone and we’re about to enter Spring 2019! In that time, Lee had another surgery on her injured foot. As those of you who understand CRPS may know, any additional trauma (injury, surgery, needle stick, etc) can spike a CRPS patient’s pain level, regardless of where in the body it occurs. Sure enough, Lee’s surgery made her pain and her dystonia spasms worse for the past six months. We knew the risk going in, but the need to get her injured foot aligned more normally with her leg was too important to pass up. Those six months have reinforced for me one of the most important needs for anyone dealing with CRPS- RESILIENCE. I have seen Lee go through the aftermath of the surgery and experience more pain and spasms than she had before. She goes through the ups and downs every day of dealing with the bittersweet reality that her foot is in a better position for her to walk, but her other symptoms are worse. Every day, she picks herself up and keeps pushing to find solutions, and that is what you as a caregiver have to do as well. Keep helping to identify solutions, keep working together to mitigate the pain and focus on positive momentum, however small it might be on any given day. Find reasons to laugh, connect with friends who understand the conditions and adjust their participation in your lives accordingly. Be a source of energy and positivity for the person you support, no matter what. I realize this can be especially difficult when the patient is a loved one. It is easy to fall into the same funk of frustration and helplessness he/she does, but you have to resist this temptation as much as possible. They are battling pain every minute of every day, so you have to be the buffer wherever possible. Keep reminding them that you are there and that this won’t change.
In order for you to do this for the person suffering with CRPS, it means that you have to also pay close attention to taking care of yourself. It is so easy, as a caregiver, to run out of energy yourself and to get depressed about the challenges. Be aware of this and do things for yourself. I struggle with this all the time and need to get better at exercising more consistently, eating well and continue to pursue outlets that I enjoy. You cannot be a good backstop for the person for whom you provide support if you don’t take care of yourself as well.