Pressure sores can appear overnight simply from parts of your body laying on a bed. You don’t feel the pain in that area to repostion, so blood flow stops simply because that blanket wrinkle laid under your ankle too long, or your knees were touching while on your side, or your hip or tail bone laid on the mattress too long.
Positioning is vital, and knowing where your body is and what it is touching is vital. This is challenging because of the lack of sensation you cannot tell what position your body is in, so it is visual. I don’t know if my legs are bent or straight or crossed or frogged out. I have to look and position them how I want them.
Many of us struggle greatly to turn and reposition ourselves because we also have weakness and deficiencies in our arms. Paralyzed bodies are dead weight and VERY heavy and repositioning them with weak arms can be challenging.
Because of this, pillows and propping can become a wonderful friend! I am always looking for new ways to get my body comfortable to get a healthy night of sleep…with as minimal pain as possible and no pressure sores in the morning.
Pain is a huge factor for most people with spinal cord injuries. My pain is always at a high alert by bedtime because of the day. So I am already fighting the pain battle. I have muscular pain from wheeling and transferring myself all day. I have nerve pain from the need to get out of a sitting posture and needing my body to be straight. And because I am tired, my endurance level that I normally try to power through, is just gone.
For me, the pain I have is all night long. I am exhausted enough I fall to sleep pretty quickly but I would say a conservative guess is that I wake up at least 25 times a night to try to reposition my body because pain wakes me up. Repositioning it will give me some immediate relief and I will fall back asleep. Then, I just repeat that cycle all night long. I really am the Princess and the Pea. Propping my body with different pillows can also help with the intensity levels so I am always looking for any new ideas to help!
Spinal cord injuries cause extreme fatigue in and of themselves because of the damage to the neurological system. This is one of my greatest frustrations is how little I do to absolutely wear me out where I can barely hold my eyes open. I only know to describe fatigue as feeling like you have been drugged. It isn’t a “oh I am sleepy and I would enjoy a nap” or “wow, I want to go sit down and rest for a bit after cleaning my whole house.” No, it is like someone suddenly injected you with mega doses of Benadryl and you literally cannot think clearly because your brain is so fuzzy, you struggle to keep your eyes open because you literally cannot stay awake. It is horrible. Now add that to not having a great quality of sleep because of pain and waking up to reposition often and you have a very bad quality of life and feel miserable non-stop.
I have learned that a 20 minute cat nap can reset my neurological system. I don’t know why, but it just helps. It takes the edge of that fatigue and allows me to be “all in” with life again. If I take a longer nap, I cannot go to sleep at night and then I lay there feeling all my pain and it gets much worse! So, I LOVE to go to bed exhausted because I need to be in that “drugged” fatigue stage so I fall asleep quickly.
Some days, I have to take several of those naps. Other days, one is enough. It can happen in my car as one of my kids drive. It can happen in my living room chair as I am trying to get some computer work done. If I am out in my power chair for a day, I can lay it back and take one then (this has been an awesome way for me to continue a fun day with the kids).
Sometimes visiting a friend, I just need to go lay down for a few minutes and it really, really helps take my pain levels down so I can function. This is so unique to each person, but I have learned that I do require much more sleep than ever before. I need more hours at night (to make up for the broken sleep) and depending on the night I have had, some mornings I am just not able to get up quickly.
Sleeping is the time our bodies work to heal itself internally. It is important to keep fighting and learning and experimenting to figure out what is best for our long-term health in every area…not just spinal cord injuries. Because of our injures, finding these answers are much more complicated, but it is vital we do everything we can to keep ourselves healthy and safe while we sleep.
I hope this helps educate and advocate!
One thought on “September Spinal Cord Injury Awareness- Sleeping”
I find this post so relatable. The pains are of different kinds with SCI. The way you described fatigue is point on. This makes it so hard to sit in front of the computer and work or do anything. Some days I can’t seem to find the right position to sit or lay down!