This article is excerpted with kind permission from ME/CFS patient Martha Kilcoyne's 2007 book, Defeat Chronic Fatigue Syndrome: You Don’t Have to Live With It – An Eight Step Protocol. Martha knows there are no magic cures for the disabling CFS she suffered beginning in 1993, but her own gradual improvement convinced her that certain strategies can help.
First, keeping a journal of her daily activity and symptom patterns avoided the pitfall of “one step forward, two steps back.” Then, using other strategies explained in the book, she built on that foundation and finally achieved normal health - with a photo of herself in 2000 atop Mt. Kilimanjaro as proof.
Step One: Understand Your Version of CFS
If you sat with a group of CFS patients you would quickly discover the similarities between your symptoms and experiences with CFS and theirs. The most obvious being: the unrelenting, total exhaustion and pain.
But despite the similarities of symptoms that exist with CFS patients, the actual patterns of Chronic Fatigue Syndrome can be markedly different from person to person. Because your immune system/bio-pathways are struggling with a different set of prior medical exposures and predispositions, your version of symptoms will somewhat vary in addition to the shared “core” group.
So the first step in the protocol is to understand the unique patterns that describe your own version of Chronic Fatigue Syndrome.
Why? This information will give you the perspective necessary to recognize your unique patterns and to track the effectiveness of different strategies.
How? The way to understand your version of CFS is easy. Start keeping a daily record of your symptoms, medications, and activities.
The only way I finally saw the negative patterns and was able to break them was via my daily record. Your mind is not sharp with CFS and it can play memory games. The days and weeks melt into an indistinguishable mass and you can’t accurately recall the details of the last few days, let alone the past month or two. One of the keys that enabled me to defeat CFS was to break the cyclical patterns, unique to me, that supported the disease. You can find your patterns by keeping a daily record.
So OK, I’ll admit it. The first person who suggested that I keep a daily record was rewarded for their caring with a frown and an audible groan from me. I hated the idea. I was already struggling with daily chores. Another one was not going to help. I was wrong.
Your daily record doesn’t have to be long and detailed. It should only take a few minutes to record one day’s activity and overall symptoms – a total of 24 hours per entry. As you might have guessed, my record was the briefest possible and yet, it turned out to be one of the important keys for me.
I used a simple 8½ by 11 pad of lined paper and just kept flipping over pages as necessary. I started a new pad when the pages ran out. Use whatever recording method works best for you. For those who like to digitize, a simple word document with running date entries or a spreadsheet would also work well.
The most important information to record:
Today’s date and the time of each entry
Number of hours you slept the night before
Medications you took – dosages and times
Naps and resting periods
Overall rating of how you felt
The severity of any specific symptoms that you are tracking.
Here is a sample from my frequently minimalist record:
Oct 14 - Slept 10-7 a.m. 10 mg Elavil 75 mg Votarin – twice
Ate and helped get kids out door
3-4 did some straightening
6-7 kids and supper
Rested – everyone to bed
To the right of each day’s entry, I noted how I felt overall. This particular entry was:
Very stiff muscles and joints, achy and painful, very tired, eyes bothering me, trouble reading.
For me, that entry was a full length novel. Sometimes my notes were shorter for the day’s activities. I often wrote “good” or “bad” day for overall symptoms. No symptom entry meant an average day.
The above entry was one of the first I made when I started keeping a daily record. It was shortly after I had a complete relapse in my attempt to return to a normal pace – I had already been sick for a year and a half. That is when I finally realized that if I didn’t get serious about managing my recovery, CFS might actually win.
So if you’re hoping to defeat CFS, please learn from my mistakes. Keep a daily record and if you miss a day, make an entry for two days the next day. You will be doing this for at least six months, most likely longer. So get used to it. It will pay off.
After you’ve been keeping your record for a while, you’ll begin to see patterns emerge between the quality of your sleep, activity level, good and bad days, type of symptoms and severity, and most important how much activity you can handle without having to pay for it with a severe set-back.
Getting well from CFS is measured in months and years, not days. You need to develop a pattern of steady progress forward and avoid the one step forward, two steps back slippage. Think of your recovery as a personal version of the tortoise and the hare race. If you act like the hare, you won’t get well. You bounce back and forth between feeling better and relapsing. And as I learned, if you let this pattern persist, you risk allowing CFS to get an even stronger grip on you. Steady progress like the tortoise may win back your health permanently.
Other patterns will also emerge from your daily record as you progress toward recovery. At the end of each month:
• Look back over the prior month and find the longest stretches of time that you felt stronger. Study the patterns that preceded this, and repeat them.
• Look at specific symptoms and how you tried to address them. What was successful? What was not?
• Don’t be quick to pass on something just because you didn’t get the result you wanted right away. Keep it up for a longer period of time before you decide if it was or wasn’t helpful.
• Look over your activities and rank them according to difficulty or how much energy is required. What can you do easily without a set-back? What is clearly too much for you to handle at this time?
• Are there any combinations of activities that place undue stress on you? Can they be broken up? Spread out?
Sift through your Daily Record for the patterns that will accurately describe your version of CFS and educate yourself. Use this information to adjust your daily schedule and activities.
Long Term Benefit
The ultimate benefit of keeping a daily record is seeing your progress over the long term. This helped me immensely to keep my spirits up when I was frustrated by the snail’s pace recovery. Whenever I felt that I wasn’t making any progress, I would look back at my entries, four to six months prior, and quickly realize that I was developing a clear understanding of my version of CFS.
I could see that I was actually getting healthier and it helped me to recognize that I was definitely moving steadily toward defeating Chronic Fatigue Syndrome.
Note: To read Martha's personal answers to questions about her struggle with ME/CFS, see "Cort Johnson Interviews ME/CFS Victor Martha Kilcoyne," published in 2008. (As a footnote, Martha reported suffering a partial relapse in 2009, when she became overconfident and relaxed her regimens, but has since apparently regained lost ground.)
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Other steps in Martha Kilcoyne's easy-to-read little book cover, for example, how to feed your immune system with nutritional “fuel for health”; making sure you maintain optimal blood pressure to support “nutrition at the cellular level”; tips for finding a doctor who is willing to work with you; and breaking the cycle of fatigue with a focus on overcoming sleep deprivation.
Disclaimer: This content is intended for informational and educational purposes only. It has not been evaluated by the FDA and is not a substitute for professional medical advice, diagnosis, or treatment. Always consult with your professional healthcare team regarding your medical treatment and health regimen, or with any questions you may have regarding a medical condition.