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Activity versus Health
Many people believe that the activities you do are what help to make life more enjoyable and more meaningful. These activities, or occupations, can include things you do to take care of yourself, like eating, bathing or showering, brushing your teeth, dressing, or emptying your bowel and bladder; things you do for fun or leisure, like watching television, listening to music, playing games, watching or participating in sports, hanging out with friends or family, or traveling; and things you do for paid or unpaid work, like going to a workplace, operating a cash register, selling items (like our study participant Charlie did), fixing cars (like Aaron did), meeting with others, making phone calls (like Alley did), filing, or using a calculator or computer (like Judy did). There are also a number of activities that can fit in different categories, depending on the person and the situation; for example, someone can cook their own dinner, and then go to work at a restaurant as a cook, or someone can paint or draw as a meaningful and relaxing hobby (like Helen and Odel did), and another person can sell their artwork or teach art to others. Getting things done can make you feel proud, like you've accomplished something. Unfortunately, "overdoing it," pushing yourself to get more done in one day than you have energy or strength for, can result in harming your health. This question of balancing "good work" and "good health" is an important issue for everyone, but it is especially challenging for people with spinal cord injuries because there is the added health risk of developing a pressure ulcer (which means the same thing as "pressure sore" or "bedsore") if you "overdo it." The issue is "work versus health."
Most researchers who study the health of people with spinal cord injuries have found that activity is "good for your health," and so they usually recommend that people to get involved with work, leisure, self-care or other activities 1. Sometimes, the amount of activities that a person does, or how much they enjoy the activities that they do, is used in studies as a way of measuring the "quality of life" of a person with a spinal cord injury 2 3. Even people with spinal cord injuries themselves often talk about their productivity, that is, how much they get done or feel that they accomplish, as a way of measuring their sense of well-being, especially for males with spinal cord injury 2. However, what we learned from talking with the people who participated in our study, and observing what was going on in their lives, is that overdoing activities, whether they are work or leisure occupations, can possibly lead to creating pressure ulcers. We have found that it really is very important to be more selective or careful about planning activities, so that you balance activities with rest in order to avoid putting too much strain on your body and creating a pressure ulcer.
With money being an issue that affects almost everyone these days, many people are working harder than ever before. Because many businesses are forced to fire employees to "downsize" and save money for the company, sometimes the remaining employees need to work more than eight hours, or come in on a day-off, just to complete their workload. For others, working extra hours might mean earning the extra money they need to make ends meet. Sometimes, it's not the boss who insists on having a worker remain on the job; some people don't feel like they're taking care of business unless they finish a job quickly, do it independently, or do it with extra flair or style, so they choose to stay longer at their workplace than their co-workers. For example, our study participant Judy calls herself a workaholic. She loves her work so much that when she developed a small pressure ulcer during a busy time at the office, she refused to take her doctor's suggestion of spending two weeks in bed. Although Judy completed her work project successfully, the pressure ulcer got worse until she needed surgery and a month in the hospital to heal it. In the balance of work versus health, in this case, work "won," and health "lost."
Unfortunately, spending so much time at the job takes away from time you spend relaxing or with your family and friends, which are occupations that are very likely to help you feel good about yourself and your life. For example, Dave went through a difficult period at his job that required him to wake up at 4:00 in the morning, then continue working till late at night; he didn't have time for anything else during this period. (And he did develop a pressure ulcer that eventually required surgery.) Once again, overdoing work led to a loss of good health.
A combination of emotional and physical stress that leads to health problems is familiar all over the world; in Japan, this situation can be so extreme that the term "karoshi" has been created to refer to "death from overwork!" 4 Even without going to that extreme, overworking or working in a stressful atmosphere can worsen a condition that a person already has, whether it is heart disease, arthritis or migraine headaches. There are also health problems that can be caused by repetitive physical tasks at a job, such as carpal-tunnel syndrome, which is a painful condition of the wrist and hands usually created by repeatedly using the fingers or hands (like working a cash register or computer keyboard or playing a musical instrument), or lower back pain from lifting or from sitting in an unsupported position. For people with a spinal cord injury, another workplace risk is developing a pressure ulcer from spending too much time up in the chair or forgetting to do pressure reliefs when they are needed.
You can overdo personal activities, too. Odel, a study participant, spent the day with his nephew enjoying a football game; at the end of the day, his skin check revealed a new pressure ulcer. Another study participant, Helen, went out partying with friends on her birthday. She stayed out very late, and in the morning, a friend noticed a "blister" on her bottom the size of an egg - this was a new, and very dangerous, pressure ulcer.
So how do you make the choice between doing good work, or maintaining good health? What is the solution for the question of "work versus health?" Surprisingly, the secret might be to do both...but to keep them in balance. For all people who are busy with activities, whether it is work or leisure, experts recommend getting plenty of sleep, staying away from cigarettes, drugs and alcohol; getting good nutrition, and exercising 1 4. People with spinal cord injuries have to add to these suggestions the need to do pressure reliefs. If a red spot does appear, spending a few days resting in bed can help stop it from getting worse; Helen and Judy, among our study participants, have been able to heal pressure ulcers in the early stages by staying in bed. Helen even discovered that such resting time doesn't have to be wasted time; she uses her days in bed to direct her care attendants in doing household chores, so she is still getting useful things done. She has changed her story from "work versus health" to "work cooperating with health" in order to be satisfied with her productivity.
To prevent pressure ulcers requires making good decisions about following healthy lifestyle habits, like those mentioned above 1, and resting your body must be one of those healthy habits. Of course it can be disappointing or frustrating not to be able to do all the activities that you want to. It might make you feel like you're not being productive enough. But keep in mind that if you get a pressure ulcer, the time and expense that you will lose while waiting for it to heal, or while recuperating from surgery, not to mention the physical pain and possible medical complications it could cause, would be far more damaging to your quality of life and sense of well-being than simply staying home in bed for a day or two when you see redness on your skin!
In choosing occupations to do, it's important to pick ones that are most important to you, so you can use your energy wisely as you balance productivity with protecting your health. If there are things to do that you don't enjoy or that are very difficult for you, then it might be a good idea to ask others to help you with them, like care attendants, your partner or your friends and family. If you don't have helpers available and you need to do all your activities yourself, then you might be able to control the way you schedule activities. To avoid stressing yourself out, getting tired, or spending too much time up in your wheelchair - all of which can harm your health and lead to a pressure ulcer - think about not doing too many different sorts of things in one day, or arranging to do things in the same or nearby locations in one day (like going to a store that's near your doctor's office on the way home from an appointment, instead of making two trips on different days). Or simply limit the number of hours you spend to make sure you are not taking on too much.
Remember to add in time for your personal activities (like getting ready to leave the house, eating, getting ready for bed, etc.) and social time with friends or family when figuring out how long you should spend doing activities on any given day. Include some extra time for "padding" just in case you are delayed at one of your activities; for example, Robert, who participated in our study, got stuck at an airport because of a late flight, wound up in his wheelchair for 19 hours that day, and ended up with a pressure ulcer. While most delays are not so extreme, maybe leaving extra time between your activities will give you time to spare, time that you can use for pressure reliefs or relaxing if you don't run into any delays.
There are many creative ways to balance productive work activities with taking time out for a healthy rest. For example, our study participant Alma has a very active lifestyle. She takes part in exciting sports like hang gliding, parasailing, skydiving, river-rafting, sit-skiing and all-terrain vehicle (ATV) riding. Alma has also had a number of interesting jobs, which have ranged from 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 said about 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."
Despite being so busy, Alma follows a strict pressure relief schedule she has worked out for herself: every 4 to 5 hours, she gets out of her chair and lies down for a half-hour to 45 minutes. Alma believes this fits her lifestyle better than doing more frequent, but shorter, pressure reliefs; what is important is that this method of taking long breaks from work and other activities, along with her other healthy lifestyle choices (she eats healthy foods, keeps her weight low, exercises, does not smoke or do drugs, has supportive relationships with friends and family and with her care attendants, and keeps a positive attitude) has kept her pressure ulcer-free. This exact schedule might not work for everyone, but the point is that even very busy people can still choose to take time away from productive activities to guarantee that they are taking care of their health.
A very common complaint for all people who are busy is that they "can't afford to miss any time," whether their commitment is to working at a paid or volunteer job, taking classes, being a parent, or any other regular activity. Sometimes people are worried that if they don't do their usual activities, they will let others down, or that tasks they are responsible for won't get done; they might even be afraid they will lose their job. However, the negative result is that when people who are sick go to work, their illness, no matter what it is, is likely to get worse 5. For people with a disability, there is the added worry that if they "call in sick" to a job, class or family commitment, other people will think that they are "weak" or unable to get things done 6. This can be a tricky situation to deal with. A good idea might be to self-advocate, that is, speak up for yourself. Ask your boss, co-workers, teachers, family and friends, or whomever else you think should know more about your health needs, to set aside some time to talk with you. You can then tell them facts about pressure ulcers and other health issues, and why you might sometimes have to take a day or two off from activities to prevent a red spot on your skin from becoming a more advanced-stage pressure ulcer. Although many people with disabilities report that they sometimes feel it is emotionally or physically exhausting to ask for accommodations at work 3, the overall result of self-advocacy can be very positive. In fact, research has shown that even a single hour-long meeting or talk about disabilities to an individual or a group can be enough to increase their knowledge and improve their attitudes toward all people with disabilities 6.
We learned from the people who participated in our study that occupations definitely bring pleasure to people, but that overdoing it can hurt your health. We also learned that with a little bit of planning, you can include pressure ulcer prevention activities with all the other things you do in a day, and you can stay pressure ulcer-free. Take inspiration from the advice given by one of our study participants, Odel, who said this about balancing activities:
Don't just sit around; stay active, do things, but do positive things. So that's why I do my daily activity and look forward to going to school. I look for positive to do. You know, if there is something out there you can do of if you can be creative about doing something, just think positive and go do it. Whatever you want to do, there is something out there or someplace to go for you to achieve what you want to do. You might not know which door to go through, so you knock on all of them and one of them will open up for you. So that's what I do.
Remember that you don't have to make the choice of "productivity" OR "health," or to think of your situation as being "good work OR good health;" you can choose both!
If you are interested in finding more information about balancing work with watching out for your health, the Internet has some articles that could be helpful (tip: try words like "balancing act" if you use a search engine). For example, Craig Hospital in Denver, Colorado has a page on its website about fatigue, or tiredness, which can be a sign that the balance between work and rest may be off. Derek Mortland, a person who received a spinal cord injury at T-9 in a motorcycle accident, wrote an article for New Mobility magazine online, Wataboshi Down Under, where he talks about balancing his career as a musician with taking time off to tend to a pressure ulcer that he got just weeks before an arts festival celebrating the accomplishments of people with disabilities. Derek even mentions that he did pressure reliefs while on a plane in order to help his pressure ulcer to continue healing. By combining the pressure reliefs with sitting on a cushion, frequent visits to his wound care center, and staying in bed as long as possible before traveling to the festival, Derek was able to attend the event as he had originally planned. It's a great real-life example of balancing participation in activities with taking care of your health!
1 (2004). Patterns of recurrent pressure ulcers after spinal cord injury: Identification of risk and protective factors 5 or more years after onset. Archives of Physical Medicine and Rehabilitation, 85, 1257-1264.