Living With CFIDS
Writing as self-help for persons with CFIDS

By Betty Sue Fox

 "The Horror of that moment," the King went on, "I shall never, never forget!"
 "You will, though," the Queen said, "if you don’t make a memorandum of it."
--Lewis Carroll, Through the Looking-Glass, 1872

Things written down boost our confidence by giving us clues to where we are supposed to be, when we are supposed to be there and what we are supposed to be doing when we get there.

Writing also facilitates problem solving, fosters communication with ourselves as well as with others and helps us maintain control   of the one thing we do have control of, our emotional response to sickness, disability and limitations. Writing about our thoughts and feelings helps us explore why we are thinking and feeling that way; it exorcises the demons of anger, pain, guilt, depression and fear; and provides an easily accessible way to escape, if only for a moment. An empty page is a non-judgmental listener, the perfect support--all we have to add is words.

Writing takes many forms, which can help CFIDS sufferers bridge that gap to the inner self, center us, heal us and connect to a higher power. Here are some types of writing that you may find helpful.

ORGANIZERS
Lists.   Making lists is essential for surviving short term memory loss and concentration problems.  Jot down items needed at the grocery; questions to ask the doctor; things to tell the doctor so the doctor can worry about them and you no longer need to; things that need to be done--crossing items off gives a supreme sense of accomplishment.

Don’t forget telephone lists.  I place a sheet of paper near the phone that includes the names of people I may be talking to when my call is answered, such as the nurse at the doctor’s office, the names of friend’s children who may answer the phone, and best times to call. This list provides a concrete reminder of who I am calling and why.

Memory joggers.   What happens when you are on the phone and   are asked that one-hundred-thousand dollar question: what is your phone number or address or Social Security number, or worse yet, the last four digits of your Social Security number? You have absolutely no idea. Your head is perfectly empty, so empty that you question whether you ever did know the answer in the first place. One solution is to have these little facts all written down on a tiny piece of paper taped in clear sight on the phone.

Calendars.   A big calendar that shows a month at a time is a grand planning device. Some people find it helpful to color-code calendar items. For instance, highlight doctor appointments, friend and family activities, and things that need to be done, such as furnace filter and oil changes, in different colors. Note somewhere on the calendar for future reference what the different colors mean.

Things can get even more complicated when you are out and half your brain (your calendar) is   at home. Keep a smaller version of the larger calendar in your pocket or purse along with a list of important phone numbers and addresses. It takes time to do this, but, praise be for the difference it makes in sanity.

Notebooks. These are useful for keeping important information and memory joggers all in the   same place. Numerous lists made on pieces of scrap paper or sticky pads are easy to lose, and with CFIDS brain fog, you may not remember having made them in the first place. I suggest using a stenography pad with one side of the page designated for things that need to be done and the other side of the page for follow-up, to write down what was done and when it was done.

Files. Personally, I can file almost anything; it is the retrieval of the information that gives me fits! Cross-referencing is a boon here. It is helpful to make a list along with  a file. For example, when filing a quarterly tax return under IRS, make a note of it. Large envelopes provide good containers for files because they have a surface for listing the contents so you do not have to search later for something you need.

Remember that filing can be done slowly and over time; as you collect items that you need to keep for future reference, you can put them all together in a folder clearly marked "to be filed." This "to be filed" folder serves as the wondrous junk drawer: you are liable to find anything here that you can not find anyplace else.

LETTERS
As antiquated as it may seem in this day of rapid communication, letter writing serves a unique purpose and can be therapeutic to both the sender and receiver. Many people with CFIDS have erratic sleep patterns and limited energy during the day hours when everybody else is going full steam ahead. What better way to spend sleepless nights than to write notes to friends or advocacy letters to newspapers, congressmen and bureaucrats?

Letters can give homebound people a voice. This form of communication makes few demands: it gives us all the time we need to plan what to say and how to say it, and then to check it for accuracy and appropriateness. Consider having a trusted friend do likewise.

Letters also can have a healing effect. During my hearing for Social Security disability, the expert medical witness emphatically told the court: "I do not believe in CFIDS, neither do my peers" (like CFIDS is a religion to be believed   in or not). For three years, I cringed as this brilliant statement would randomly pop into my head. Finally I wrote to the Social Security Administration voicing my agony that a medical expert could be so "unexpert." I felt better as soon as the letter was in the mail and, as an added bonus, was pleasantly surprised when a personal response came.

Letters are sometimes meant to be written and not mailed, such as letters to yourself or to God. And then there are letters to people who are long dead; a spouse or partner or friend or relative who just made you fit to be tied; a physician who treated you like a flake or lost loves. The writing of the letter itself, the putting down of feelings on paper, is cathartic.

JOURNALS
A journal provides a safe place for working out solutions to problems and identifying and sorting out feelings, which is essential to our mental health, yet potentially annoying to others. It is a non-judgmental listener that never tires of hearing the same old thing, raises eyebrows or interrupts.

Writing in a journal does not take the place of friends, family or counselors but does foster communications with ourselves and with other people. Putting down a free flow of ideas about relationships can help you gain a new perspective and work out what you want to say before you say it.

Journals can take many forms and cover any topic; there are no limits to what you can write in your journal. Write as much as or as little as you want when you feel like writing. Some people have a set time each day, for instance just before bed, when they write--it can  be an excellent way to get things off your mind so you can rest.

POETRY
Poetry is also a powerful healer, connecting us with our wounds and hidden thoughts. We can give our emotions words through poetry: words sing, dance, cry, celebrate. A poem is a tool for digging a feeling out and looking it in the face.

The last poem you read may have been in high school English class and you remember it because all the lines began with a capital letter and every now and then the words at the end of the lines rhymed. Well, a poem can be anything you make it be: long or short, capital letters or no capital letters, rhymed or not. Poems can even be a form of list-making: things that make you smile; things that taste good; people you love.

Take for example this poem I coached out of myself some time ago. I titled it "Frustration" and felt totally purged when the words hit the paper.

 There is a multitude
 Of Demons--
 Tiny though they be--
 Tying knots
 In Jubilation
 Inside of me.

There are many excellent books on the therapy of poetry writing. One of my favorites is   John Fox’s (no relation, although I certainly would claim him) Finding What You Didn’t Lose: Expressing  Your Truth and Creativity Through Poem-Making. This delightful book,  a gift from my son, has bolstered me through two cold winters and many shut-in days.

GETTING STARTED
There are no rules or timelines in writing for self-therapy and there is no wrong way to do it. You are not after the great American novel, but healing. Grammar, spelling and readability are not important; all that matters is that you have purged your excess baggage.

One way you can start the process is by list-making in your head. After tucking yourself into bed at night or waking in the morning,   try this: think up five things or people for whom you are thankful. Then try to write about them, even if you are just jotting down notes.

Also, take yourself to a comfortable spot with your pencil and paper. Relax. Find that quiet place within you. As your thoughts come to the surface, write them down. This exercise can help those of us with CFIDS to focus on what we can do something about how we feel inside. There are no boundaries on the baggage you can decide to let go through writing: anger at a love for leaving; resentment of the medical system that does not meet your needs; grief over wasted life; fear of being alone.

If you are writing for an audience such as a congressman and need to be more concerned about style and format, remember--such letters can be put together little bits at a time over weeks or months, as your limited resources allow.  Have a healthy friend or family member review what you have written to provide you with confidence that you have said what you meant to say.

Above all, remember that writing is an easily accessible means for contact with the outside world and escape from the narrow boundaries also known as being "homebound." Writing gives us back the big stick (albeit in the form of a tiny pencil) that CFIDS, with its severe limitations, has taken away.

So give writing a try. Good luck.

NEED MORE HELP GETTING STARTED?

WRITE NOW, a free guide to maintaining a creative spirit through writing while ill and homebound is available to patient groups, service providers and others. The 92-page guide suggests numerous exercises and ideas to tap a creative spirit regardless of severity of disability or previous writing experience. For a free copy of WRITE NOW, send a 6"x 9" SASE (stamped with $1.24 postage) to: S. Dion/WRITE NOW, 432 Ives Ave., Carneys Point, NJ 08069.