The Ups and Downs of Living With Unpredictable Pain
Living with Ehlers-Danlos syndrome is interesting. I have the hypermobility type, which is characterized by loose joints. I thankfully only have to deal with my left shoulder subluxation –no dislocations thus far and pain is currently limited only to my shoulder. In comparison to so many fellow patients, my pain is mild and I can and do maintain a full and normal life working full-time, serving in a leadership position, attending events and even running and walking in races. I live such a “normal” life, it’s been easy to pretend I don’t have a genetic mixed connective tissue disorder. I should be happy. Most of the time I am.
Then come the days when I wake up and my shoulder already hurts. Or the days when I discover a bruise that wasn’t present the night before. Or the days when applying tiger balm isn’t enough. I have to take out the tennis ball and massage my shoulder with it to endure sitting all day at work. It’s amazing that the tennis ball doesn’t bring me down. However, having to use tiger balm made me feel weak a few months ago. I’ve discovered while physical pain does hurt, it’s nothing compared to the fear of the unknown — like when pain will strike or where. I manage the ups and downs in the following ways:
- Be prepared. I often joke my work bag has a pharmacy inside. Tiger balm and my tennis ball accompany me everywhere.
- Learning to pace. I’m starting a new system of one fun activity and one chore per day. This way, I can have fun and feel productive by getting one task accomplished daily.
- Having acceptance. Two years after diagnosis, I’m slowly learning to accept there are days when I’m just not going to be able to go out or do something I want to do.
- Trying to adapt. I’ve been finding alternative ways of doing things. I’ve been finding new activities and hobbies to replace ones I can’t or shouldn’t engage in.
- Staying engaged. I’ve gotten involved with my local support group and participate in the online groups. More importantly, I’ve been slowly opening up to friends without this condition to explain why I’m in pain or not around as much.
How do you manage the ups and downs of pain with your chronic or rare condition?