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July - August 1999

One to One
A sharing of tips, strategies, ideas and helpful thoughts from one person with CFIDS to another

Tiredness grips me most quickly when I’m standing or walking. Therefore, it has been extremely helpful to have a chair with 5-inch wheels that enables me to sit while doing kitchen work. This chair is very easy to push around with my feet and is not clumsy like a standard wheelchair. One could use it in any room without rugs.
 
This one was purchased some 30 years ago through a nursing home. Nowadays, similar items are available through home health-care services. Catalogs show walkers with seats and 7-8 wheels that would serve the same purpose.
Marion Goodale
Williamstown, Mass.


An asthma drug has made a big difference since I began it last fall. Theorizing that the all-over aches and pains I suffered with daily were related to the immune system up-regulation, my doctor decided to give a new asthma drug a try to see how it would affect me, even though I do not have asthma. Within days of starting me on Singulair, I noticed that my skin felt "thinner," as though I had lost a layer between me and what I touched. Could it be reduced swelling or reduced fluid? All I know is that it took away the daily pain. It does come back if I overdo or as I get tired at the end of a too-long day, or if I relapse or get sick with something else. But I don’t have to face it every morning, afternoon and evening. My Advil, Tylenol and Exedrin bottles are emptying at a much slower rate. The only caution I would share is that when I took it in combination with Claritin over several months, I developed stomach ulcers that didn’t respond to antibiotic treatment but did clear up within a month of going off the Claritin.
Coral Bohne, Alaska


I have chronic, paralyzing vertigo.
 
It’s so bad, I would not wish to be alive if I had no help. I thought I was the only person with vertigo, not just dizziness, until a saw a few references in the Chronicle. Any kind of benzodiazepine clears it up and also allows me to think clearly. Valium is a good one, since it stays in the system longer than some others do. The difficulty is overcoming negative medical establishment attitudes and convincing your doctor to give you a controlled substance. I have not become addicted and have been taking the same amount (5 mg, three times a day) for five years.
Susan Best, Pahrump, Nev.


I have found focus in this petition:
 
"Teach me to know that the promise of the rainbow is not found in cloud-free days but in the midst of the storm." I was forced to resign from a teaching career of 25 years. Nothing can compare to this experience, and for the first few weeks, the mere thought brought me to tears of complete discouragement. But I had been a survivor of many circumstances throughout my life, and I knew somehow I was going to have to keep my eyes on the "promise of the rainbow." So I decided to donate my teaching materials. Children’s books, volumes of teacher lesson plans and educational materials that I had collected over the years are now a part of several classrooms. If I could not teach, then my teaching tools were going to continue without me. We have to continue to be survivors. No matter how small or great the problem is, give yourself an opportunity to find the promise of the rainbow in the midst of your storm.
Susan Hazlett, La Verne, Calif.


The success of this section depends on you. If you have a coping tip, a favorite quotation or a self-care treatment that has helped you, share it with others. Mark notes "One to One" and please include an E-mail address or a phone number.


Gluten intolerance?
For those who have intolerance to gluten, wheat or lactose, Sara Bass of Connecticut recommends checking out the Gluten-Free Pantry. This company, based in Glastonbury, Conn., sells a variety of baking and cooking mixes, rice pasta, gluten-free vitamins, ingredients, cookbooks and more. The company was founded by professional chef and food writer Beth Hillson, who is gluten free and the mother of a gluten-free child. "Their chocolate truffle brownie mix is to die for," Sara reports. Visit their web store at www.glutenfree.com, write to P.O. Box 840, Glastonbury, CT 06033, or call 800/291-8386.