Time Management for Those with Disabilities

Time Management for Those with Chronic Fatigue Syndrome, Fibromyalgia, & Other Disabling Conditions

by Pamela Rice Hahn

How do you manage your time when your body seems to be sabotaging your every effort to do so?

Anyone who copes with the turmoil caused by Chronic Fatigue Syndrome, Fibromyalgia, or another disabling conditions for which one of the primary symptoms is devastating fatigue knows how difficult it is to plan your time. It’s true: Nobody seems to have enough time at his or her disposal. But most people can predict with a degree of certainty how they’ll feel from one minute to the next. Predictability is a key to optimal time management. That’s the stuff of which time studies are made — or broken.

Every life has challenges. And everybody gets tired.

A new mother who longs for the time that seemingly will never arrive when her baby will sleep through the night.

The student studying for exams.

The dad fighting to stay awake until his teenager gets home safely.

But tired is far, far different from full-body fatigue. Chronic Fatigue Syndrome and Fibromyalgia make a mockery of “the mind’s willing but the spirit is weak.” Therefore, the secret is to find your best ways to plan your time so that you can cope, even when your illness seemingly robs you of your spirit. By making a commitment to yourself to do what you can and accept what you can — and cannot — do, you’ll find that you’ll be in a better position to accept the reality that for you, time management must be a priority. The difference is that you must use an entirely different standard to establish those priorities. Once you learn that standard, you can learn how to manage your time when everything else is seemingly out of your control.

Time Management for the Normal Person

A normal person might be able to get by with a To Do List or a Day-Timer®. You need something that’s more flexible. Chances are that you’ll have more success if you keep a Tasks Notebook. (Be patient! You’ll learn why later.)

Before you can appreciate how to set up your Tasks Notebook, it helps to understand what should go on “normal” To Do Lists:

• A Task Notes Page on which you list, as it occurs to you, anything that you need to do — whether now or in the future.
• A Daily Task List onto which you transfer information on chores you’ve put on your Task Notes Page, scheduled appointments, and urgent concerns that come up. A Daily Task List usually has 10 items, no more than two of which should be difficult tasks.
• An Agenda — usually kept with your Daily Task List. An Agenda is your record of the specific times for scheduled appointments, but it can also be used to map out the times during which you feel it will be best to complete specific tasks on your list. (You might remember the good old days when you could create an “artificial deadline” to motivate yourself to get something done. Those deadlines go on an Agenda.)
• A Long-Term Goals List of those things you’ve moved from your Task Notes Page that will require some time and discipline to complete, such as getting out of debt, redecorating your house, writing a book, and so on.
• A Short-Term Goals List of those things you’ve moved from your Task Notes Page that, although they’ll require some time and discipline to complete, can be done in a manageable chunk of time.

The complexity of these tasks will depend on the normal person’s available amount of time in each of his or her time segments.

They can range from such more complex short-term goals as:

• Planning the steps to put in motion to pay off one outstanding bill
• Charting and dividing the tasks necessary to repaint your living room
• Outlining the book you plan to write

Or, they can be as simple as scheduling when they will:

• Vacuum the living room
• Put the dishes away
• Outline a chapter of the book

Time management philosophy for the “normal” person is that with discipline, there can be enough hours in the day to do whatever he or she wants to do. All that’s needed is to break the typical day up into timed segments. He or she determines the number of hours needed for work and sleep, and then plans how he or she expects to spend the remaining hours of the day. (This only works if that person is able to maintain a somewhat predictable routine.)

Then, from that routine, it’s determined which hours would be better spent doing something else. For example, if three or four hours a night are spent watching television and the goal is to get out of debt, that person could move yourself closer to reaching that goal if some of that time was spent working at a part-time job.

As a motivator, he or she would do the math to determine how much time is squandered on non-productive activities. In the above example, that person would figure up how many hours a week he or she watches television (3 x 7 or 4 x 7) and multiple those hours by the 52 weeks in a year. Once that’s done, he or she would discover that — voila! — there are literally 1092 or 1456 hours available to spend working on the goal. For anyone with a predictable schedule, time is a commodity.

Time Management for the Person Coping with a Disabling Illness or Condition

When you must cope with Chronic Fatigue Syndrome, Fibromyalgia, or any disabling condition associated with full-body fatigue, time isn’t a commodity. It’s a luxury. You must take control of it in any way that you can. Your first step is to:

Write It Down!

Don’t leave anything to chance.

If it’s something you must do, write it down.

If it’s something you’re thinking of doing, write it down.

When you’re coping with Chronic Fatigue Syndrome, Fibromyalgia, or any disabling condition that can interfere with your cognitive skills, you can’t rely on your memory. While others are out jogging for exercise, you’re forced to remain at home to jog your memory in any way that you can.

The Nitty-Gritty of How It’s Done

Your Tasks Notebook

Now that you understand the philosophy of “normal” time management and accept that you really must “write it down,” you can start to adapt that philosophy to fit your situation.

Your Tasks Notebook will give you the one major benefit of writing things down. It gives you a place where you can cross them off!

Choose the notebook style that will work best for you. Your Tasks Notebook can be a three-ring binder, a spiral notebook, or a notepad small enough to slip into a pocket. Whichever style you choose, it should be one that is easy for you to keep close to you at all times.

Unless you can move pages forward (like you can with a binder) or use a notebook with section tabs, start what will serve as your Task Notes Page at the back of the notebook.

That way you always know where to find it. The philosophy of the Task Notes Page is the same: Write down anything that comes to you. If you know in advance that something you write down will be a priority item that you’ll need to be sure to remember to move ahead in your notebook at a specific time, use a different style of handwriting to write down that task. For example, you might write general thoughts and to-do ideas in cursive, and print priority tasks and appointments in large capital letters. Or you could write such tasks in a different color.

At the front of your notebook, have a Today Page. Record the times and locations of scheduled appointments in such a way that they’ll stand out. Write the other things that you hope to get done below those things you know you must get done. As you complete each item, draw a line through it. That includes those things that you weren’t able to accomplish yourself and had to delegate to someone else. As far as you’re concerned, you got it done!

Any item that remains on the list at the end of your day, gets moved to your next Today Page, and so on.

Time Management Success Strategies

Here are some suggestions on ways you can help ensure your time-management success:

• Celebrate Your Capabilities: Make a list of those things you can do that give you pleasure or pride. This helps you establish the proper mindset for determining in what ways you can establish your time management tasks and goals. In other words, make a concerted effort to celebrate what you can do rather than mourning what you can’t.
• Accept Your Limitations: Regardless of how much you might want to do something (like participate on a church committee or work overtime), you’re setting yourself up for failure — and a possible hard crash! — if you try to do something that you’re no longer capable of doing. You’ll let yourself down, and, as a consequence, also let others down in the process. (Good intentions you can’t turn into acts lead to additional stress.)
• Determine Your Prime Times: Everyone has high- and low-energy times of the day. Unfortunately, for anybody with Chronic Fatigue Syndrome, Fibromyalgia, or any disabling condition that involves full-body fatigue, the amount of high or peak energy will probably be what you used to accept as your low-energy time of the day. Accept that on most days you won’t have enough energy to get work done in either short high-activity bursts (like throwing another load of clothes in the washing machine before you unload the dishwasher while you wait for the dinner that you just put in the oven to bake) or long stretches (like taking advantage of a canceled appointment by spending an hour cleaning the bathroom or waxing your car). Even so, you can still schedule some events in your day according to those times that will work best — for you and your energy levels.

For example, if you normally sleep until 10:00 a.m., don’t make a doctor’s appointment for 9:00 a.m.

Likewise, if you usually nap at 2:00 p.m., don’t accept a late lunch invitation for 1:00 p.m.

On the other hand, if you know that you’re most alert at 3:00 p.m., schedule your doctor’s appointment for that time and write down any errands you might want to run after the appointment. (Just don’t feel that you must run the errands if you’re too exhausted after the appointment. It’s still multitasking if you follow that appointment by going home to take a nap.)

• Be Flexible: The realities of coping with Chronic Fatigue Syndrome, Fibromyalgia, or any disabling condition is to accept that there will be days when you simply cannot accomplish what you’d hoped to do that day. It’s not procrastination when you’re physically not capable of performing a task. Accept that, and move the scheduled task (that you’re not capable of doing) to another page in your Tasks Notebook.
• Learn to Say “No”: It isn’t easy, but let go of any guilt you feel about not being able to do something. Don’t think you need to give an excuse. Don’t get defensive either. Accept that others simply will never fully appreciate the limitations caused by the full-body fatigue of Chronic Fatigue Syndrome, Fibromyalgia, or many other disabling conditions.
• Learn to Delegate: Conserve your prime time for your primary tasks — those things you choose when you establish your priorities. Here’s one place where you can allay any guilt you may feel by offering a barter whenever possible. If you can’t carry out the trash but you do bake cookies once a week, offer to give the neighbor kid a dozen cookies every week if he or she will carry out the bags from your house, put them in the cans, and haul those cans to the curb. If you know that once you fix dinner, it’ll push you beyond your endurance if you also set the table and then clean up the mess, then assign those chores to others in the family. If you live alone, cook dinner and use a paper plate and wait to wash the pan, utensils, and silverware until you feel up to it.
• Establish Your Priorities: Your priorities will depend on what you were able to put on your Celebrate Your Capabilities list. Accept that nobody can “do it all,” and that you more than likely can only do a fraction of what that “nobody” can do. Therefore, strive to use as much of your limited energy to complete those things that give you joy.

The reality is that if you must cope with Chronic Fatigue Syndrome, Fibromyalgia, or any disabling condition that’s accompanied by debilitating fatigue, your health now dictates how you can manage your time. Others may be able to forego one activity in favor of another, yet still have “time” to squeeze a third activity in the mix. You don’t always have that luxury. For you, time itself is the luxury. Treat it like the treasure that it is. Your time will be more rewarding if you do.

Revision Copyright © 2010 Blue Rose Bouquet Group, LLC
All Rights Reserved

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4. Sleep Medications for Chronic Fatigue Syndrome and Fibromyalgia
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