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Does Procrastination Live Among CFS and FM Patients?
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- Last Updated: 06 December 2015 06 December 2015
Is there such a thing as procrastination for those with Chronic Fatigue Syndrome (CFS)/ Fibromyalgia (FM)? Do not yell all at once. For most people procrastination is a bad thing—but does it exist for us?
Having a chronic illness can force changes in the way we approach the things we want to do. No longer can we count on our body to do what we tell it to, when we tell it to do it. What is usually thought of as procrastination in healthy people can simply be in the CFS/FM population the inability to complete a task because the energy needed is simply not there.
From CFS/FM patient experience of more than 30 years: all too often when patients are having a "good day" they will subscribe to the philosophy of "I'm going to do everything I can because I don't know when I'll have another good day."
While this attitude is understandable, it is NOT helpful and can cause damage. It puts too much stress on the body—too much activity equals dead in bed for days or weeks. Using more energy than necessary ends up being counterproductive since working one's body or mind to extremes actually consumes more energy. It is much like gunning the engine on a car—one uses more gas but doesn't get there much faster. When one drives slowly and steadily and doesn't gun the engine, it uses less gas, and you still get there without wearing out the car. The analogy works with our bodies. Don't gun your body. It will help limit the number of crashes. Working towards a better balance between trying to live life and living with a chronic illness (i.e., recognizing triggers, limitations and other aspects of your health) will promote a better quality of life. It may take some practice to find this sweet spot but it is worth trying.
It is because of the crashes and the lack of predictability for accomplishing a task that many CFS/FM patients first prioritize the most essential tasks for their "good time". Next in priority are those tasks that aren't essential, but still important. But these "secondary" tasks will often get pushed down the list when new essential tasks come up. On a good day it's important to pick the one or two essential tasks, rest, and then see if one can accomplish anything more without "going down-hill." So patients are frequently forced to start, stop, prioritize and re-prioritize.
Of course, there are times when even essential tasks are too difficult to accomplish because one is simply too sick. At least the decision is made. Harder to navigate, when one is in a relapse, is the uncertainty of whether, tomorrow, one will be able to get to the doctor's appointment, or get out to buy food. This uncertainty leads to "anticipatory stress", which can make the illness itself temporarily worse.
The calculation frequently has to be made: how much do I need this to be done now; can I actually do it without really harming myself; can I get away with it with an "acceptable" pay-back.
Can all of this be called "procrastination"? No. It is the reality of living with a severe or even moderate chronic illness. Most of what healthy people call life is curtailed, and CFS/FM patients are forced to live a scaled-back existence in which time is slowed and the 2 lists of "essentials" and "necessary" are done one or two steps at a time, one day or a few at a time. And then, once and awhile, something creative or fun.
Here is where patients can help themselves—learn to practice the B word—BALANCE. It seems to be difficult for some people to manage because they are not tuned into their bodies. They can't read the signals their body sends when they have hit their energy limit, and should stop activity. (Easier to say than do.) Over the years, many patients have been told to "just learn to live with the illness" and as a result they have learned to tune-out their bodies and ignore any signals. Much like learning a language, it starts with letters, then words, then sentences, then paragraphs. Patients who are tuned into their bodies speak that language and pick up all signals, and they listen. (This does not include folks who are hypochondriacs.)
A serious chronic illness actually provides some good life lessons. (Wish they could have been learned some other way!) Patients have had to stop and assess their lives. On the positive side, they must learn to make more careful and deliberate choices as to what can be done or not, learn to conserve energy, set boundaries by learning to say no, and not take everything for granted. They also have to make a conscious choice who they want around them cutting-out or limiting exposure to toxic people. Those are excellent skills to have.
So, does procrastination live in the CFS/FM world? Procrastination is a luxury most patients don't enjoy.
Videos of CFSAC Spring 2013 Meetings
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- Last Updated: 27 June 2013 27 June 2013
CFSAC Spring 2013 Meetings
12 videos, 12 hours by U.S. Dept. of Health and Human Services
The Chronic Fatigue Syndrome Advisory Committee (CFSAC) discusses the current issues of chronic fatigue syndrome.
Day 1
Welcome & Call to Order - Day 1 (CFSAC Spring 2013)
Duration: 1:23:00
Chronic Fatigue Syndrome Advisory Committee (CFSAC) Meeting, Day 1, May 22, 2013, 9:00 - 10:30 AM. Call to Order CFSAC Chair, Gailen Marshall, Jr., M.D., Ph.D. Welcome Statement from the Principal Deputy Assistant Secretary for Health…
Public Comment on Day 1 (CFSAC Spring 2013)
Duration: 59:38
Chronic Fatigue Syndrome Advisory Committee (CFSAC) Meeting, Day 1, May 22, 2013, 11:45 AM - 1:00 PM. Public Comment.…[Note: time is given incorrectly. It should be 10:45 - 11:45 a.m.]
Approve Prioritized Recommendations List - Day 1 (CFSAC Spring 2013)
Duration: 26:05
Chronic Fatigue Syndrome Advisory Committee (CFSAC) Meeting Day 1, May 22, 2013, 1:00 - 1:30 PM. Approve Prioritized Recommendations List and Accept Proposed List of ME/CFS Orgs Websites, Committee Members. …
Determination of Medicare Coverage of Test and Treatments - Day 1 (CFSAC Spring 2013)
Duration: 1:03:30
Chronic Fatigue Syndrome Advisory Committee (CFSAC) Meeting Day 1, May 22, 2013, 1:30 - 2:30 PM. CMS Determination of Medicare Coverage of Test and Treatments, Dr. Louis B. Jacques, M.D…
Public Question & Answer on Day 1 (CFSAC Spring 2013)
Duration: 24:52
Chronic Fatigue Syndrome Advisory Committee (CFSAC) Meeting Day 1, May 22, 2013,
2:45 - 3:15 PM. Public Q&A.…
Committee Discussion and Plans for Day 2 (CFSAC Spring 2013)
Duration: 1:48:34
Chronic Fatigue Syndrome Advisory Committee (CFSAC) Meeting Day 1, May 22, 2013,
3:15 -- 5 PM. Committee Discussion and Plans for Day 2, Committee Members…
Day 2
Opening Remarks on Day 2 (CFSAC Spring 2013)
Duration: 1:12:37
Chronic Fatigue Syndrome Advisory Committee (CFSAC) Meeting Day 2, May 23, 2013,
9:00 - 10:15 AM. Opening Remarks CFSAC Chair Gailen Marshall, Jr., M.D., Ph.D. Agency Updates: AHRQ, NIH, FDA, Ex …
Health Insurance Marketplace - Day 2 (CFSAC Spring 2013)
Duration: 46:01
Chronic Fatigue Syndrome Advisory Committee (CFSAC) Meeting Day 2, May 23 2013,
10:15 - 11:00 AM. Health Insurance Marketplace, Anand Parekh, M.D., M.P.H.…
Public Comment on Day 2 (CFSAC Spring 2013)
Duration: 1:06:06
Chronic Fatigue Syndrome Advisory Committee (CFSAC) Meeting Day 2, May 23, 2013,
11:15 AM - 12:15 PM. Public Comment …
Public Question and Answer on Day 2 (CFSAC Spring 2013)
Duration: 1:09:57
Chronic Fatigue Syndrome Advisory Committee (CFSAC) Meeting Day 2, May 23, 2013,
1:30 - 3:00 PM. How To Get More Clinicians Involved in ME/CFS? Susan M. Levine, M.D., and Lisa W. Corbin, M.D., FACP. P…
Committee Discussion on Day 2 (CFSAC Spring 2013)
Duration: 32:45
Chronic Fatigue Syndrome Advisory Committee (CFSAC) Meeting Day 2, May 23, 2013,
3:00 - 3:30 PM. Committee Discussion…
Committee Discussion (Part #2) on Day 2 (CFSAC Spring 2013)
Duration: 1:23:15
Chronic Fatigue Syndrome Advisory Committee (CFSAC) Meeting Day 2, May 23, 2013,
3:30 - 5:00 PM Committee Discussion…
Gardening for Health and Fun
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- Last Updated: 06 December 2015 06 December 2015
by Rita Sanderson
"Happiness is a butterfly, which, when pursued, is always just beyond your grasp, but which, if you will sit down quietly, may alight upon you" (Nathaniel Hawthorne).
Our family always set up traditional gardens in the yards of the many places where we've lived over the years. The warmer climate in Maryland led to a hearty harvest of gigantic cucumbers, tomatoes, squash, melons, and much more. Back then, our home garden was used to teach our children how to grow some of their food and help to raise their awareness of and respect for nature. With giggles and delight, they marveled at the delicacies that emerged from the seedlings they had planted just a few months earlier.
Experiencing nature first-hand tends to leave most people, whether they are children or adults, well or ill, in awe of its majesty and power. Several magical moments I've enjoyed include a surprise visit by a Praying Mantis, which at first appeared to be so large and intimidating. Curiosity made me want to find out more about this grand critter, and I was surprised to discover it was considered to be one of the most beneficial insects in one's garden because of its hearty appetite for many nuisance bugs. Another insect that I never associated as a "top predator" in the insect world, was the enchanting dragonfly that was balancing itself on our clothesline, with its translucent wings glittering in the sun. I had not realized that the black-eyed Susan's and Joe-Pye weed and the rocks in my garden actually helped to attract dragonflies nor that their favorite fare was mosquitoes—I'd consider this a "win-win" situation.
Over time, the bees, butterflies, and birds unknowingly became the subjects of numerous photos and a line of greeting cards I had designed. A picture of that dragonfly ended up being selected for publication in the Parade Magazine several years ago—who would have thought that dabbling in the dirt would give rise to another enjoyable hobby. Now I select certain plants for what they might potentially lure into the garden and provide many good "photo ops." Until my health problems left me more confined to my home, I seriously doubt that I would have noticed any of these wonders. A quote by a remarkable American naturalist and essayist sums up what I've gained time spent in the garden, "I go to nature to be soothed and healed, and to have my senses put in tune once more" (John Burroughs).
What motivates folks to consider gardening can be varied and as unique as they are. Some common reasons and benefits include:
- Growing fruits or vegetables that are free of chemicals or additives
- Having fresh and fragrant herbs, just a snip away
- Canning, freezing or drying produce/herbs for use throughout the year
- Going primarily with flowers can create a colorful, fragrant and relaxing setting
- Flowering plants can be magnets for butterflies or hummingbirds
- Getting fresh air, sunshine, and a little exercise
- Sharing a common interest (and plants) with neighbors and friends
- Using gardening as a creative outlet
- Adding "curb appeal" /increasing property value
- Getting ideas or tips at garden shows or nurseries
- Giving yourself something new to learn about /get lost in
- Sharing your knowledge and skills with others
- Taking pictures of plants and wildlife
- Making memories with grandchildren
- Feeling a sense of accomplishment
- Feeling one with nature/ spiritual awakening
Some general things to take into account before heading out to your local garden center:
- Consider your overall health and options/space available to determine what type of garden to plan for
- Limit size of the garden/flower beds (especially in ground) due to upkeep
- Pick the right plants for the sun exposure available (sunny, partial shade, shade)
- Choose plants that fit within your available space, do not overcrowd
- Find out what kind of soil you have, get the right fertilizer/soil enhancer or potting mix specifically formulated for containers
- Look for a nursery /garden center with knowledgeable staff for guidance
- Consider buying nursery containers (black recycled plastic pots) from a greenhouse or garden center, a much more economical option when setting up a container garden
- Water each plant as recommended and group "like" plants together
- Choose the right tools for the job: lightweight tools with padded handles (or handles covered/taped with pieces of pipe insulation foam) can help to reduce hand strain, a small cart or tote (with coasters) to transport tools, a kneeler and sturdy bench/chair
- Keep a close eye on how your plants are doing (is there good growth, changes in the leaves, any bugs, other pests) and take care of problems promptly
- Be extra careful with pets or small children—check which plants or parts of plants are poisonous
It's really not as complicated as it may appear. Once the basics are in order, all one needs to do is provide tender loving care and let nature do the rest. Nature is not predictable nor can it be controlled. While plants are grown for competition and prizes, most of us turn to gardening as a healthy and enjoyable diversion from our health problems. It should not cause angst or stress. "Adopt the pace of nature: her secret is patience" (Ralph Waldo Emerson).
Another garden enthusiast, Susan Murray shares her joy of gardening in an article, "Soil is Good for the Soul," featured in the Spring 2013 edition of Disability Issues. Ms. Murray, a Certified Master Gardner, confesses how excited she still becomes, after a long winter in the Northeast, when she can go outside, get her hands in the dirt and feel her heart communing with nature. While she praises the physical and emotional benefits of gardening, over the years, she admits it has started to cause more pain and discomfort. Though she still regards herself as "able-bodied", she has concerns about age-related impairments and disabilities that impact people's ability to continue or take up gardening.
Ms. Murray decided to explore if there was anything available that could help folks with accessibility and functionality. She met a relatively young man who had sustained spinal cord injury and relied on a wheelchair to get around. He had always been an avid gardener and was able to continue doing so after a friend had built him a box on stilts. The box served as a raised garden bed that he could reach more easily, while seated, and plant whatever he wanted to. After research of his own, necessity and ingenuity led to his creation of a company, Accessible Gardens, that specializes in the construction of modular bed units and trellis options. The garden beds can be elevated to table height and adjusted for use with wheelchairs and walkers. This system can be assembled in multiple configurations to meet the needs of user(s) and the site.
So, one never knows what else they might discover or invent as a result of gardening. Again, this article focuses on it as healthy pastime, but it may lead to business opportunities for some. People often look for new and clever ways in showcasing their plants. They may design garden ornaments or wind spinners or paint scenes from their gardens. Gardening has become a very popular hobby, but understandably it is not for everyone. Sometimes it is used therapeutically (known as horticultural therapy) at rehabilitation facilities and assisted living residences, as part of the patients' treatment program.
The most important thing is to get started. Many local experts recommend buying container seedlings which have a better chance in reaching maturity and being productive since our growing season is rather short in New England. Starting plants from seeds indoors, can be very gratifying, but that requires planning and preparation. It's not too late to start a garden, even in early June. For that matter, you might find seedlings that have grown into pretty good-sized plants which home improvement stores and garden centers often discount towards the end of spring. If it would be easier for you to garden while seated, ask someone to place your potted plants on sturdy tables. A local handyman could construct several box planters or a raised garden bed. But if you are a novice, it might be wise to start out with couple of pots on the balcony, deck or patio and just see how things go. Think about the task at hand, gather your tools and whatever else you may need in a tote or cart, keep work area/path clear of tripping hazards, and most of all, contain your plants, but not your enthusiasm.
For more information
Read the entire article, "Soil is Good for the Soul" (Disability Issues, Vol. 33, No.2 published by Spaulding Hospital in Cambridge, MA ) written by Susan Murray who is on the Editorial Board of Disability Issues, a retired health care consultant and a Certified Master Gardener.
The article is on the website for Accessible Gardens.
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Notice about names
The Massachusetts ME/CFS & FM Association would like to clarify the use of the various acronyms for Chronic Fatigue Syndrome (CFS), Chronic Fatigue & Immune Dysfunction Syndrome (CFIDS) and Myalgic Encephalomyelitis (ME) on this site. When we generate our own articles on the illness, we will refer to it as ME/CFS, the term now generally used in the United States. When we are reporting on someone else’s report, we will use the term they use. The National Institutes of Health (NIH) and other federal agencies, including the CDC, are currently using ME/CFS.
Massachusetts ME/CFS & FM Association changed its name in July, 2018, to reflect this consensus.