Blog: Organizing For Special Needs
Living Well with Pulmonary Disease
COPD...You might know this as emphysema, or chronic bronchitis, some of you may think that having less breath is just part of the process of growing older. It shouldn't be, but if we have been exposed to long-term cigarette smoke, wood smoke, industrial chemicals, or had chronic lung infections as a child our risk of Chronic Obstructive Pulmonary Disease is much higher. The disease process can include scarring and thickening of the airway and enlarged air sacks. This shows up as shortness of breath, wheezing, coughing, increased mucus (sputum), and overall fatigue.
The World Health Organization estimates 80 million people worldwide suffer from moderate to severe COPD. This is a disease that can be very difficult to deal with emotionally as well as physically. People who were once active may find their activities cut short by difficulty breathing. They may have to find different ways to go about shopping, cooking, and cleaning. They may find it difficult to do yard work or decorate, or entertain others.
It is well known in the health care field that those with COPD, from many different backgrounds, are often more anxious or irritable. When we have a lack of oxygen, our brain responds by sending out the message that we must escape the situation we are in...for those with chronic COPD this can show up as anxiety or panic. We'll look at ways to make life easier for those with COPD.
If you have trouble with breathing seek medical attention. There are many interventions available.
How can I live well with this chronic disease?
Know that you will alternate between good days, and feeling angry or sad. This is normal.
Know that we all live in community. Now is the time to seek out connections, whether it is family, friends or church community. We ALL need support. Allowing others to help you can improve their life also.
Knowledge is Power! Use the Internet or as some call it, "the university of Google". You can find everything you need, be it scientific research, current studies, medical advances or local recourses. One of the most powerful things you may find is the ability to connect with others who live with this disease. There are individuals who started their own websites to share their experiences, fears and joys with others. One is www.olivija.com; another is www.my-oh-my.com, which reviews a book about living with COPD written by Leland G. Vogel (he includes humor as one of the ways to live well). A very informative and thorough website is COPDinternational.com.
Take care of yourself, you deserve it. Your energy is like money in the bank, don't spend it all at once. Know when you have the most, be it morning or early afternoon. Rest between activities, take it slowly, pace, and use breathing strategies. A simple 30-minute exercise program 3 days a week can actually increase your energy. It could be as easy as gentle stretching and walking. Talk with your doctor about options.
Use your support people. You could order lunch and have a friend help in your kitchen. Now is the time to get rid of all of those things that you don't really use. You can sit. No really...sit. Put a donation bag on the table next to you. Your friend can take out each item, and you decide-keep, donate, or toss. Limit your talking if this tires you. Make a system, a head nod, or a table right next to you. Don't do too much at a time. Advocate for yourself and set limits. Two hours may be your max, so be sure to clean up before then, unless your friend can finish without you. It also might work better for you to do 30 minutes each day for a week, you will start to get a feel for what works for you.
Now that you have eliminated all of that unnecessary baggage (extra potato peelers, lotion from 1992, the pants that you wore to your college graduation), you can easily see what you need and use. Identify where you work, and set up the space so that everything you need is within the closest distance possible. Get help, both for the physical part and the idea part. This may mean that you move your microwave to the table, so you can sit and make tea. It could also mean that all of your meds are now on a lazy Susan on top of the microwave. Now you can take your time and sit and read the paper while taking your meds. Better yet, your laptop might be right there too.... no more wrestling with the paper, when you can push a button. In the bathroom, have a shower seat and an absorbent terry cloth robe on a low hook. This will eliminate the need to towel off, and reach to a high hook. Have your most used items out. That way you don't have to open the medicine cabinet. There are many attractive options. You can order online, or make a little wish list, people are always wondering what would actually be useful.
Morning: If you care to make your bed, try to pull up and straighten the covers while you are still lying down. A down comforter is easy to straighten, and looks nice. Sit to dress. This seems simple, but may not be the way you have always done it. Try something new. You can brush your teeth sitting...maybe in the shower, or on the toilet. No one will ever know. On the days you shower (it doesn't need to be every day, but once a week is good goal), save your energy. This can be a fatiguing task. If the house is warm enough you could even wear your robe a while, before getting dressed. Decide which time of day is best for your shower routine. If you have more energy now, attend to tasks... you might unload the dishwasher, or make any needed calls.
Afternoon: Be aware if an afternoon nap is interfering with your nighttime sleep. You may want to incorporate your exercise early in the day to improve your sleep patterns. While you sit and prepare lunch, you might want to do a little prep for dinner. This way you have made less work for the evening hour. If you do laundry, you might do a smaller load to make the job easier- less lifting of wet clothes, and less folding. Sometimes a little more energy use can be overlooked when it improves your independence and quality of life. Don't sweat the small stuff.
Evening: Many people have sleep difficulties. You might want to elevate the head of your bed. A support person could find a foam wedge for a lot of height, or stacks of blankets could be placed under the head of the bed, to give a slight elevation (this helps babies with congestion too). If you aren't sleeping get up. You don't want to associate your bed with tossing and turning. It might help to keep the television in a different room. If you use an alarm clock that startles you awake, you might consider a calmer and kinder way to start the day, with less stress. There are clocks with gentle beeps, especially the battery powered kind (which have the added benefit of working in a power outage).
How do you stay in contact when it takes all the breath you have to tell a story? Be creative, your relationships will benefit from your efforts.
Contacts: Whether it is your neighbors, friends and family, or pulmonologist and hospital, you need a central area to keep your contacts. If you have a computer you can store them here, but remember to have a backup in case of power failure. You may also like something next to your chair, and also at your writing desk. Have someone print them up for you if this would be helpful.
Writing: Email is a quick and easy way to communicate. If you prefer something more formal or special, a letter or postcard is always a gift. Keep a small basket with pre-stamped postcards at your desk or table. Have your address book and pens right there too. This way you can jot a simple thank you, hello, or birthday wish to a loved one. You can let it be known that you are collecting postcards to send to folks, and ask that people bring you one if they see something you'd like. Costco sells boxes of mixed all occasion cards if you want to prepare beforehand.
Memories: Schedule time to create memories. It could be your Friday morning tea hour, or Tuesday afternoon when your granddaughter stops by after school. Write your history, or your families; take the time to put photos in albums; have a friend over to watch a movie (he or she could do the honors of preparing you both a drink). If you like to see the countryside, maybe you could schedule a once a month country drive with a friend.
I hope this information has been helpful. Remember, you can always seek out the assistance of a professional organizer to help you.
Lisa Alishio, COTA/L
Clarity Home Consulting
Live well in Your Home™
posted on: 10/17/2007 12:30:00 PM by Lisa Alishio
category: Special Populations
Organizing For Special Needs: < Previous Post - Next Post >
Blog Central: < Previous Post - Next Post >
Organizing For Special Needs
by Lisa Alishio
View This Blog
Lisa Alishio, COTA/L, is a professional organizer with a background in pediatric and adult occupational therapy. Her intention is to help people of all ages and abilities to "Live Well in their Home".