Pressure sores

Posted by Reeve Staff in Life After Paralysis on October 22, 2019 # Health, Lifestyle

by contributing writer Kristin Beale

I struggle a lot with wounds. After 14 years of having them, dressing them, and trying my hardest to prevent them, I feel like I know enough to hold down a wound care clinic for a couple of hours. Only a couple of hours though because, if anything outside of a pressure ulcer walked in the door, I would have no clue what to do. Honestly, I’d probably only last the doctors’ lunch break.

Unfortunately, the cost of my staying active is also the biggest reason for my skin breakdown. I struggle a lot with this. Before my accident and since as far back as I can remember, I’ve been active on sports teams, running around the neighborhood after school, and even being crowned captain of my lacrosse team as a high school freshman. Then the Jet Ski hit me, I lost mobility in my lower extremities, and what I thought was all my athleticism. My heart broke – it absolutely broke.

About six months after being discharged from the hospital, I discovered and fell in love with my first adaptive sport: skiing. Since then I’ve tried every sport available in its adaptive form (14 and counting) in a fight to hold on to this outlet I’ve had since I was a kid. Not only that, I now have a body that doesn’t get the same thoughtless exercise that able-bodied people do with walking. That just means that I have to be extra conscious to not let my belly poof out like so many stereotypes suggest.

That’s the reasoning behind my drive to get out of my house and risk it, but here we come to the consequence: pressure sores. They really get me. An able-bodied person’s mind and body work together to, for the most part, keep pressure sores at bay. They have the subconscious instinct to move around, unweight, and readjust when pressure is applied to the skin for extended periods of time, therefore evading skin breakdown and wound development. My body, with its distorted brain signals and perpetual ambiguity, is not privileged to those subconscious messages. Again, with the awareness, I always have to be one step ahead of this issue, or else I’ll get a wound. I’ve learned that the hard way: the weeping, bleeding, and slow-healing hard way.

But the wounds – they’re worth it, right? Right. They’re a price I haven’t yet figured out how to not have to pay. It would be much easier to sit at home and likely be free from them, yes, but that poof. I’m fighting the poof.

My physical therapist in the hospital used to chant at me “just because you can’t feel it doesn’t mean it’s not there, Kristin” what seemed like every time I looked her way. I didn’t like physical therapy or being an inpatient in the hospital and she was unfortunately bundled into that dislike, so I wanted to roll over her toe every time she said it. Very soon I realized that the meaning of her words, awareness, held the most important lesson I learned. Again, the hard way.

When was the last time I resituated in my seat? Sitting in the same spot for a long time is uncomfortable for a normal person, cue those subconscious movements, so I need to make sure to periodically relieve pressure on my butt so that a wound won’t form. I’m sure I don’t have to convince anyone that a wound on the butt of someone in a wheelchair is literally the most inconvenient thing.

Is there anything touching my lower body while I sleep? The constant pressure for an extended period of time, like during the night, is not inconsequential. Since I can’t feel discomfort from the constant pressure, I won’t adjust to prevent my skin from breaking down, resulting in a very annoying surprise when I wake in the morning.

Is the surface I sit on too hard? As much as I’d like to claim having a butt like Beyoncé, it just isn’t true. Spinal cord injury not only took some movement and feeling from me, it also stole a lot of the butt muscle I worked so hard to build. What I’m left with is a bony butt that’s overly sensitive to a lack of cushion underneath. I have to protect the skin that covers those bones, since my muscles don’t exist to do the job.

Nothing about pressure sores isn’t annoying, but I’m going to add one more thing in the mix: how to prevent and/or heal them. There’s a whole market of creams, ointments, and patches that you can put on sores, both open and closed, but the best solution is to get the pressure off. Pressure sores, at least for me, can usually be found on the ischial bone of my butt, making it near impossible to keep weight off and heal those suckers.

My usual response to a butt wound is to live my life as normal, get out of my wheelchair when it’s convenient, and endure a painfully slow process of healing. That neglect is how to end up in the hospital for an out of control pressure sore which, no surprise to anyone reading this, is no stranger to me.

Going to the hospital is the biggest threat I can make and, in my all-too-experienced opinion, that’s more than enough. Think of it this way: if you have to be immobilized and very bored while you heal a sore, there’s no better place to do it than your home. Lying around, waiting for wounds to heal from a hospital room is as close to a nightmare as I’ve lived. Simply put: shift your weight and stay off your butt to stay out of the hospital.

Pressure sores are a very serious and debilitating issue in the paralysis community. I’ve learned the hard lesson to not disregard pressure spots on my skin as “not a big deal,” because every red spot and every mark has the potential to become a very big deal. The overarching answer to the problem of sores is to keep shifting, keep wiggling, and keep moving around to relieve pressure. If for nothing else, to keep you out of a hospital room.

The National Paralysis Resource Center website is supported by the Administration for Community Living (ACL), U.S. Department of Health and Human Services (HHS) as part of a financial assistance award totaling $8,700,000 with 100 percent funding by ACL/HHS. The contents are those of the author(s) and do not necessarily represent the official views of, nor an endorsement, by ACL/HHS, or the U.S. Government.