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Listening to Your Body
Some people believe that there is a kind of "body wisdom," that our bodies let us know when things are going wrong. Although people who are living with spinal cord injuries often have impaired sensations (that is, they are not as sensitive, or perhaps have no physical feelings at all) from areas below their injury, the body can still "speak up" when there is a problem.
For people whose spinal cord injury is above T-6 (the sixth thoracic vertebra), a very real danger is autonomic dysreflexia. This is a complication that arises as a strong physical reaction to an irritation, usually a back-up of urine in the bladder or waste products in the bowel 1 that a person with spinal cord damage above T-6 might not be aware of. The symptoms include sweating above the level of the injury, paleness and "goose bumps" below the injury, anxiety, a change in heart rate, a jump in blood pressure and swift onset of a strong headache. If this condition goes on for more than a few minutes, it can create a risk of retinal damage or even a stroke. These symptoms are the body's way of sounding alarm bells to take action about the bladder or bowel. (Some people with spinal cord injuries, even "complete" spinal cord injuries, do experience a sensation of bladder-filling or a full bladder 2, but autonomic dysreflexia still occurs when immediate attention is needed.) Some participants in our study have had occasion to experience autonomic dysreflexia, such as Judy, who noticed that when a latex leg bag was put on, she felt light-headed and queasy and her hand became cold. She recognized these signs as "A.D.," and loudly told the nursing staff that's what was happening; they discovered that the leg bag's opening was blocked by a stopper, so urine wasn't flowing into it. When the stopper was removed, Judy's symptoms disappeared as quickly as her urine drained into the bag.
Some people, especially those whose injuries occurred many years ago, develop a "sense" of what is going on in their bodies. For example, Odel was taught to do pressure reliefs every 15 minutes to maintain his skin integrity, but over the years he has built up his sitting tolerance and gained a "sense" from his own body of when he needs to do pressure reliefs. As a result, he may only do reliefs once an hour, but he does them at the exact moment that his body "tells him" he needs to do it; he doesn't ignore the sensation or wait to respond. This makes him more vigilant in doing pressure reliefs than people who are going according to the clock but sometimes wait if they are busy or don't notice the time. Ken reports a similar "sense," even though he doesn't have ordinary sensation in his bottom.
Another way to "listen to your body" is to watch carefully how your body reacts in different situations. For example, one of our study participants, Alma, who got a spinal cord injury at C-1 over 35 years ago, has learned over the years that the best way for her to do pressure reliefs is to lie down for a half-hour to 45 minutes every 4 to 5 hours. Alma's method probably won't work for a lot of people; as an example, Frank even wears a watch with an alarm in it to remind himself to do a pressure relief every 15 minutes, which is what keeps him free of pressure ulcers (which means the same thing as "pressure sores" or "bedsores"). The point is that both of these people worked out a personalized system through many years of listening and getting to know their own bodies and what is best for their own health.
People can also develop a "sense" that their skin is irritated. Robert, for example, reported that when he had a pressure ulcer on his buttocks that was getting worse, his body "let him know" through profuse sweating and feeling cold and clammy when he was sitting in his wheelchair. And Helen said this about her "sense" of her body:
You know, after being so many years a "quad," I'm pretty well familiar with my body. So when something is bothering me, I usually know where it's at, 'cause I can feel it. I can feel pressure. Or I tell Marsha, "Marsha, it's hurting me over here." She'll go over there, "Yeah, you're right. It's getting red," or something like that. It's like your body lets you know. Again, after so many years, you're in tune with your body, you know what's going on, because everything happens for a reason. Your feet twitch or your arms or whatever, it's for a reason. That's something. So when you feel that, don't just ignore it. Check it out!
The bottom line is, when your body sends a signal, listen to its wisdom!
If you like to use the Internet to learn more about a subject, there are some websites that can help you to think about what's going on inside your body. While "listening to your body" means a kind of internal, instinctive thinking, it might still be helpful to see good illustrations, that is, pictures, and descriptions of how the spinal cord and the nerves coming from it work. Nervous System - Basic, on the website of the American Medical Association is an excellent "map" of where nerves are located inside your body. This map is a full-color drawing, so it is not gory or "gross." More excellent color drawings that show how the spine itself is built and explain exactly which spinal nerves go to which part of the body are found on Spinal Cord Anatomy, on the Apparelyzed website. Apparelyzed, a website created by Simon, a man in England who received a spinal cord injury at C-5/C-6 in a car accident in 1992, has two goals: first, it contains information about spinal cord injury and related conditions. Second, it is also a clothing store that sells T-shirts with positive messages and other clothing designed by Simon; the profits from selling clothes help to pay for the expenses of maintaining the website.
For websites that might be help you to think about "listening to your body" for signs of autonomic dysreflexia, try Apparelyzed's page on Autonomic Dysreflexia & Hyperreflexia (with medical language, as well as illustrations of the "A.D." process inside the body), Home Alone!, on the website of Craig Hospital in Denver, Colorado (which also has tips about home safety), or Spinal Cord Injury Complications: Autonomic Dysreflexia, from the LIFE Center of the Rehabilitation Institute of Chicago. The LIFE Center also has an article, Spinal Cord Injury Complications: Temperature, about listening to your body for signs that you might be too hot or too cold; other pages about being aware of your temperature include Temperature Regulation, on Apparelyzed (where Simon talks about some of his personal suggestions for changing temperature; be aware that because Simon is British, the temperatures listed in the illustration are in degrees Centigrade, which are different than the Fahrenheit scale used in the U.S.), and Other Complications Of Spinal Cord Injury: Hyperthermia/Hypothermia, on the website of the Louis Calder Memorial Library of the University of Miami/Jackson Memorial Medical Center.
To find out more about "listening to your body" in the sense of "listening to your inner voice or instinct," good ideas can be found in our section titled Self-Reflection. This topic covers thinking about your health, discovering what are your personal priorities (that is, what is most important or meaningful to you) and ways to make your inner voice heard, such as starting a private journal or an Internet blog.
1 (2002). Silent autonomic dysreflexia during a routine bowel program in persons with traumatic spinal cord injury: A preliminary study. Archive of Physical Medicine and Rehabilitation, 83, 1774-1776.