I often use this blog as a place to showcase something that we are doing at the KBF and the impact we are having. But I’ve also used it as a way to educate people on spinal cord injuries (SCI) and some of the hidden complications or struggles someone with an SCI can have. Today I’d like to do that again. 

I had my first ever pressure sore two years ago, and it was an experience full of frustration and complex emotion. I’m all healed up now (you can read the blog I wrote about my experience here), but unfortunately, Edie (our Executive Director), just became the newest member of the club. 

For those who don’t know, a pressure sore is a common complication for some with an SCI or other sensation deficit. A pressure sore manifests when the skin or underlying tissue is damaged due to loss of blood flow or injury. Often this will happen if you sit on something other than your chair for too long, or sit in an unusual position that damages your skin, or you scrape your skin somehow, often during a transfer. This is common for people with SCI because they have no sensation and don’t realize it is happening. 

After laying on the couch or in bed for 6 weeks to allow the sore to heal, I was able to fully recover and have had no residual issues (other than some neck pain that I link back to laying on my side for 6 weeks). Even after all these years with an SCI and my work as a nurse, it still feels embarrassing to acknowledge that there are aspects of my body that are out of my control. Edie has now just started the process of healing her sore and I thought we probably had a lot we could commiserate about. So below is a written Q&A to share our experiences. I hope that our stories can help give some color to life with an SCI, and possibly more importantly, keep someone else with an SCI from feeling alone or embarrassed by the experience.

Kelly: Can you tell us what happened and how your sore started? 

Edie: About three weeks ago, I slipped when I was getting into the tub, and ended up with an abrasion on my left leg near my butt. To get into the tub, first I transfer myself from my wheelchair onto the tub’s edge. From there, I reach across to the ledge on the opposite wall with one hand and slowly lower myself down. But that day, I lost my balance. I skidded down and somehow ended up with an abrasion. It started as a blister. A few days later it opened up. Since I was sitting on it all day long it wouldn’t heal. It kept getting worse, not better.

K: It can happen with the simplest mistake! For me, I still have no idea how mine happened. It wasn’t there one day and it was the next. 

K: What are you doing now to try to heal this?

E: Ugh. I’m trying to stay off of it as much as possible. When you get around in a wheelchair, you may wonder how in the world do you stay off of it? Well… it’s the bed or the couch! Luckily I can lie on my right side and still work and do what I need to do. But now my shoulder and neck are killing me. 

K: Don’t ignore that shoulder and neck pain. I did and now almost 2 years later I’m still dealing with it. I’ve gotten a lot better, but it’s no joke when those secondary injuries happen.

K: Other than the obvious worry about your health, what has been the hardest part of having this sore? 

E: You mean besides being bed-ridden? The hardest part was skipping the Boston Marathon. I was registered and planning to do it. I knew the drive from VT to MA and back (not to mention the race!) would make it worse. I had a really great weekend lined up for myself. I was going to visit my aunt and cousin, see high school friends, and do the race. Doing the right thing was not fun.

K: That’s such a bummer, but glad you are feeling good about the decisions you made.

K: Is there any advice that you have for others with SCI that you’ve learned from this experience? 

E: Yes! Get off any sores as soon as possible so they heal fast. As hard as it was for me to pull the plug on Boston, it means I’ll probably just be in bed for three weeks or so. It could be way worse! Like your experience, Kelly. Summer is coming and the last thing I want is to spend it in bed! 

K: Agreed! Every sore and every person is different so there is no set time that sores will take to heal, but the sooner and more you can be off of it, the better.