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Organize Chronic Fatigue Syndrome, Fibromyalgia and Your Life

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(Editor’s note: This article is published with permission by the author.)

I used to work seven days a week, at least eight hours a day – outside the home – and still had time to get everything done around the house. And then I got sick – actually by trying to get well. I took a physician prescribed six-month course of Synarel for my recurrent endometriosis, and my life was changed forever.

What followed were three long, frustrating years, with a plethora of weird, seemingly unrelated symptoms:

* Severe allergies where there were none before

* A thyroid that just died

* Biannual changes in my menstrual periods which preceded the onset of two cycle long migraines in the Spring and deep throat spasms in the Fall

* Full feeling ears that rang

* A dry mouth with salty tasting saliva

The list could go on and on. After much testing and many doctors neurologists, allergists, rheumatologists, endocrinologists, gynecologists, otolaryngologists, physiatrists, gastroenterologists, orthopedists – I’ve been poked and prodded by them all – I was ultimately diagnosed with CFIDS and severe fibromyalgia- by an infectious disease physician!

I approached my search for a diagnosis with the same organizational skills that allowed me to get so much accomplished when I was healthy. I went from doctor to doctor, until I got a diagnosis that was not dismissive and that made sense to me in light of my knowledge and my symptoms. I had read voraciously – and continue to read – a lot. I don’t read all CFIDS and fibromyalgia related books, but I keep up. My search for a diagnosis taught me the less than omnipotent nature of physicians and the power of being a well informed proactive patient. I vowed never again to see doctors as God-like, but rather as my partners in health care who just happened to go to medical school. I personally went to law school after having an adverse reaction to time consuming science labs in college, but I know enough about biology, chemistry, and physics to understand the basics.

Similarly, I approach my recovery with the same anal retentiveness that has stood me in good stead for over 40 years. I set a stretching schedule (every 2 to 3 hours) and plan my activities around it. It’s limiting, but it ensures that I never overdo and minimizes the relapses. I take the same vitamins, herbs and supplements (no prescription medications, thank you, it was, after all, a drug that got me into this mess!) at approximately the same times each day. I get up early and go to bed early and take a warm, soaking bath each night. I wrap my neck in moist heat for 20 minutes 3 times a day, particularly important and helpful in the morning. I eat my meals at approximately the same times each day. I have learned to like fruits, vegetables, and yogurt. I avoid dairy and yeast.

As for my “health regimen”, it’s every other Monday for gamma globulin and allergy shots (and a B-12 shot once a month), one Tuesday a month for acupuncture and every Wednesday for physical therapy and a massage. This leaves me ample time for my own personal activities on my “days off” and in between stretching periods. I try to do the most physically demanding activities mid day when I am least stiff. It’s so automatic I don’t have to think about it and it gives me some control over the illness. Sameness is good.

By doing this, I feel I have a “life”. It’s not the “Energizer Bunny” existence that I used to have, but it is far from the worst it was or could have been. I get up every morning – and roll right out of bed. Sometimes I beat the alarm clock. I do low-impact aerobics for half an hour daily. I go grocery shopping. I cook. I do laundry. I dust. I leave the vacuming to my husband, although I can do it when pressed. I load and empty the dishwasher. I work at the computer, where I am right now composing this article, but for no more than an hour at a time, or until my neck and shoulders start talking to me! Not long ago, a short story of mine based on my CFIDS and fibromyalgia’s impact on my husband was published nationally in an anthology. I am trying to turn my lawyer’s skill with words into another career that will accommodate my illness. A negative into a positive, so being sick won’t be a loss but a- change. I focus on what I CAN do and continually try to expand it.

Lest you think that every day is the same, let me assure you that the above does not preclude doing ” fun” things – like going to the mall. I most recently walked around the new Washington National Airport when they held an open house. Next stop, the National Postal Museum! (I collect stamps).

The point is I organized my CFIDS and fibromyalgia to the best of my ability instead of letting it organize me. It keeps it manageable and helps me to feel more in control, which is important both physically and psychologically with a chronic illness. True, it takes some of the spontaneity out of life to be regimented. But to be able to get out of bed and be somewhat free from pain is much better than to be stuck in bed too tired and too sore to do more. You can only watch so many talk shows, game shows and soap operas! And even if you have one hundred plus cable channels from which to choose, your main interaction should not be with the remote. It is demoralizing to lie in bed all day. It fosters woe is me-ism and inaction with respect to the illness.

While all of these strategies may not work for everyone, I have found that they work for me. I just wanted to share. In my efforts to manage my CFIDS and fibromyalgia, I have found that anything is worth at least one try – and sometimes a later revisit.

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