For those with CFS, FM, Lyme, and other diseases with similar symptoms
©2001 Melissa Kaplan
I like to think that, in the 12 years I've been sick, I've learned something about living with the vast array of physiological and neurocognitive challenges these diseases present on a daily basis. Here are strategies and realizations that have helped me and others survive the day-to-day, month-to-month challenges of being sick in a world of people who aren't.
Whenever possible, stop doing what you're doing when you get fatigued - the more fatigued you get, the less accurate you will be and the longer it will take to finish the task or project.
Nap or rest 3-4 hours even on a good day. We are always running at less than 100%. The more fatigued we are, the more pain and cognitive dysfunction we experience, and the longer it takes to recharge ourselves.
Work a little, rest a little. Don't try to complete large or complicated projects all at once if you aren't up to it.
When you become tired, give in to it and rest.
Have a comfortable place to rest outside where you can enjoy nature. If you are sensitive to sunlight and heat, park a chaise in a semi- or fully shaded area.
Rest when you are not well even if people give you a hard time. You have to live in your body, they don't.
Avoid stress. Yes, this is easier said than done, but do you really have to put up with or accept all the stress others put on you or you put on yourself?
If you aren't getting through to someone, stop arguing. All it does is drain and frustrate you. If they don't get it, it's their fault, not yours.
Start birthday and holiday shopping long before the actual dates roll around. You won't be as fatigued and can take your time finding that extra special something or bargains.
Give other family members more responsibility. They're healthy, you're not: if they lived on their own they'd have to do it, so why not now?
Lots of filing to do or piles of papers to go through? Set a limit of handling X number of pieces a day and make a rule of not adding any more to those piles until they are gone. Having a set limit a day forces you to break large (and largely boring or confusing tasks) into smaller increments, making it easier physically and you will be less likely to make mistakes.
Throw out or otherwise get rid of the things you no longer need: old clothes that don't fit; books and magazines you aren't going to read (again); papers; toxic, dysfunctional or unrewarding relationships; and anything else that is dragging you down everytime you look at them.
Feed your soul: read fun and interesting books, watch a movie or relive the old days and retro fashions by indulging in some TVLand-watching marathons.
Touch base with others who are ill, a friendly short call or email, if that's all you two can stand, just to let them know you are thinking of them and care about how they are doing.
Conserve your energy and cognitive function so you can do the things you want to do (or have to do) to minimize as much as possible your body's pay-back time. Plan ahead by doing as little as possible in the days leading up to events you want to attend, and clear your calendar for the days or week following planned events.
Find something to laugh at every day. There is a smile almost everywhere you look if you know how to look.
If friends and family don't like your canceling out of engagements at the last minute, remember that you have to live in your body, they don't. If they still don't get it, tell them that if they would do your household chores, shopping, and take you to your appointments and errands for the week or two before and after the engagement, you'd be thrilled to go.
Remember that basically good relationships deserve a priority on your energy when you are running low. Toxic, dysfunctional, and draining relationships don't.
Don't waste energy explaining your condition to skeptics.
If people who are themselves less than perfect tell you that "you could get better if you really wanted to", ask them, "So, in other words, you're telling me that you want to be bald [or overweight, old, rude, a loser, ignorant, co-dependent, abusive, etc.]?" Another effective one: if the person themselves has a chronic health condition such as diabetes, ask them "So, that means if you really didn't want diabetes, you wouldn't have it?"
When strangers are being rude, stupid, abusive ("Hey, you're not handicapped - you can't park there!") or otherwise similarly unpleasant to you, take the sympathetic approach: "Were you born stupid [rude] or is this something you've been practicing?"
Is the above a little harsh for you? Then try the gently chiding approach: "Does your mother know you behave this way when she's not around?"
The bottom line isn't what others think of you, it is what you think of yourself.
Find new ways to define yourself when the old definitions no longer apply. Find new hobbies, new interests. Your inner self makes you what you are, not your old occupational or society-assigned labels.
Enjoy your good days when they come. When the bad days come, remember that good ones will come again as long as you let them, although not always when you want or need them.
Shoulda-woulda-couldas are a waste of precious time and energy. Find new meaning and set realistic goals for the new you.
New lives - and new needs - means new priorities.
Surprise and spoil yourself occasionally. You deserved doing so in your old life - the need for such small delights is one of the things that hasn't changed as you live in this one.
You can't control everything that happens to - or in - you, so stop wasting precious time and energy dwelling on those things you can't control. You'll have more energy to do those things you can.
Helping others helps you. Sharing and doing even small things helps the giver and the receiver.
Constantly dumping your emotional overload on friends, family and support group member hurts them as well as you as they cannot heal you. Seek professional help when crises arise, keeping your friends, family and support groups for sharing and friendship.
Take advantages of upswings in energy and cognitive function to learn new things. Even if it takes you longer to learn something or you make a lot of errors initially, you can still learn and derive pleasure from doing so.
Take charge of your health: learn what you can about new advances and ideas; discuss concerns and problems with the doctor. Whether your doctor is brilliant or so-so, you will improve your access and results by actively participating in your ongoing care research and decision-making.
Explore financial and other assistance programs offered by the state, county, city and community organizations to help lessen the financial and physical burden of living on a limited income.
Revamp your kitchen supplies and utensils to make food storage, preparation, and cooking as easy as possible for you.
We will probably never see perfect health ever again. We need to start living now, not putting everything on hold "until I am all better." We're sick, not dead: make a new life with the new you instead of constantly pining for the old one and waiting for something better to come along.
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© 1994-2014 Melissa Kaplan or as otherwise noted by other authors of articles on this site