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You have probably heard the phrase, "Everything in moderation." That phrase applies very well to community and work activities for people who are living with spinal cord injuries. While studies show that people who take part in activities (in this case, meaning things beyond simple self-care tasks) have a higher quality of life 1 2, it's important to keep in mind that if you overdo any activity, it can harm your health. That lesson was learned the hard way by a number of participants in our study. For each of them, they did not want their injuries to keep them from participating in occupations that were important to them, whether it was paid or unpaid work (like Dave, Judy or Ken), tending to personal and family business (like Helen), going to school or hanging out with friends (like Gary or Mitch). Unfortunately, for each of them, they spent so much time sitting up during these activities, and perhaps not performing timely pressure reliefs as needed, that the extra pressure helped lead to forming pressure ulcers (which means the same thing as "pressure sores" or "bedsores").
By no means should this mean that the best way to avoid pressure ulcers is to stay in bed all day! Many medical studies in the past showed a connection between participating in a variety of activities, especially athletics, had a lowered risk of developing pressure ulcers 3. In fact, too much time spent lying down without pressure releases (such as turning or getting out of bed) is likely to lead to formation of a decubitus ulcer 4 for the same reasons as sitting down too long. Not only that, but the person who chooses to remain in their room because of worrying about pressure ulcers will miss out on activities that they might enjoy.
The key is becoming aware of balancing what you need to do to stay healthy, with what you want to do to enjoy life. You probably learned in a hospital or rehabilitation facility what "the rules" are for preventing pressure ulcers, including pressure reliefs, good nutrition, and avoiding items that could rub or irritate your skin, such as wrinkled clothes or bedding. It's up to you, with support from friends, family, care attendants or co-workers, to remember to include good habits into your activities, such as reclining in a wheelchair while you are working at an office, doing pressure reliefs while spending time with your friends, or making sure you are sitting down evenly when you are doing something fun (like an unfortunate experience Billy had).
While many people consider involvement with activities as a way of measuring their overall quality of life or life satisfaction 5, keep in mind when selecting activities that it's just as important what those activities are. Pick activities that are most meaningful to you 6, as when study participant Helen decided to learn to paint as a way of connecting with her father and son, who were both artists. She was so pleased with painting that she started learning more about art history, which led to a volunteer job as a tour guide at a museum. To express her own adventurous nature, our study participant Alma has gone hang gliding, parasailing, skydiving, river-rafting, sit-skiing and all-terrain vehicle (ATV) riding. (For more ideas about leisure or sports activities, go to the section in this publication called "Exercise".)
Alma has also had a number of interesting jobs, which have ranged from owning and operating a restaurant to using a computer for forensic investigation (the kind of evidence-gathering seen in the popular CSI television series) to painting and making greeting cards. For Alma, there is little difference between work activities and play activities, because she has always made sure to choose occupations that she really enjoys; as she describes balancing pressure ulcer prevention techniques with her daily activities, "Don't just say, 'Take care of yourself.' Take care of yourself, and do something that you like."
Another example of a person who participates in a variety of activities that they find personally meaningful is former skiing champ Jill Kinmont Boothe, whose life was portrayed in the movie The Other Side of the Mountain. Determined to become a teacher after her spinal cord injury, she went to college, got her degree, and recently retired after 32 years of teaching 7. The point is that, whatever it is that you choose to do, enjoy the way you spend your time!
For more information about paid employment for people with disabilities, try the website of the Job Accommodation Network (JAN), which is a free consulting service of the U.S. Department of Labor to help increase the "employability" of all people with disabilities. New Mobility magazine online also has an article about what they call "The Secret Vocation", meaning the paid and unpaid forms of work that people with disabilities do (often from home), but this essay also talks about the importance for many people of deciding whether they should have paying jobs. A page of links to information about Travel & Leisure with Spinal Cord Injuries can be found at SCI-Info-Pages, a website originated and maintained by a person with a spinal cord injury at C-5/C-6. A good article on getting an education, or vocational rehabilitation, called Employment after Spinal Injury, can be found on the Model Systems Knowledge Translation Center website. Web pages with ideas about working with health care professionals to help you get active include one called You Are How You Feel, on the website of Craig Hospital in Denver, Colorado, and What is Therapeutic Recreation?, which talks about the benefits of recreational therapy.