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By Margaret Walker

 

Note: Before retiring, Margaret had a career in education. She has been a member of our program since 2011, moderator of our Living Your Plan groups since 2014, and Co-Execusive Director of the Self-Help Program since 2016.
 

Before CFS, I thrived on stressful situations. I was at my best when things were in chaos and needed "fixing," but my ability to cope with any stress at all became a significant problem for me when I came down with CFS. With lots of work, however, I have developed a set of strategies that help me manage stress.

 

 

My last professional position before becoming ill was as principal of a high-poverty urban elementary school, a position I requested because the school was beset with out-of-control behavior and low achievement.

 

So I was shocked at my inability to cope with even the tiniest bit of stress when I got CFS. I seemed to have no control over the adrenaline surges. And my startle response is so goofy that I jump at things that I would not have even noticed before.

 

I used to love change, but now new situations just heighten my anxiety. Something as simple as the first session of a watercolor class set my heart pounding. You would have thought I was about to rappel down a cliff.

 

The same with unexpected changes in schedule. If a friend called to ask us over for dinner at the last minute and it was not in my plan for that day, it sent me into a tizzy. And all I had to do was show up on time and eat. How hard is that?

 

 

Something else that created stress was an array of weird symptoms that included double vision, chest tightness and dizziness. Having rarely had anything more than a cold or seasonal allergies before CFS this was very stress-inducing for me. One of my early questions after being diagnosed with CFS was how to know when to call the doctor about my weird symptoms.

 

Over time, I developed some rules for handling these symptoms. The rules have helped me both address the symptoms and reduce the stress they cause. I have the really troubling and severe ones checked out by doctors when they appear.

For non-urgent symptoms, I follow a rule of thumb used by a friend: wait for a month, then see a doctor only if the symptom persists. (Some of my unexplained symptoms last a while, then disappear as suddenly as they started.) And, third, I recognize that sometimes the symptoms are a message from my body that I’ve gone outside my limits and need to ease up.

 

 

I’ve also developed a variety of other ways to reduce stress.

 

To help me relax, I have done a daily meditation for the last year and I also take 1.5 mg of Valium every morning. The Valium calms my central nervous and vestibular system enough to keep the dizziness that often plagues me mostly at bay and, I think, helps with the stress response. I have found that to have success with meditation I do best if I listen to guided meditation. With a voice to follow, I can stay on track.

 

 

One of the most important stress reducers for me is planning and routine. I carefully plan my week in such a way that I allow time in my schedule in case something unexpected arises that I must deal with. Because most days I rate myself at about 40 on the ME/CFS & Fibromyalgia Rating Scale, I plan each day to include one or two activities outside the house.

 

For example, on Tuesday mornings I go to watercolor class. The class is 1.5 hours and though I love it, I find it draining, so I usually don’t do anything else outside the house that day. On Wednesday mornings I usually meet a friend for coffee for about an hour, but can usually plan to do something else later in the day – grocery store, doctor’s appointment, etc. I limit most outings to about 1.5 hours max. I also try to have at least one or two days a week when nothing is on my calendar.

 

 

Pleasurable activities are important stress reducers for me. I try to plan a least one "fun" thing for each day – coffee with a friend or a trip to the library or bookstore gets me out of the house and doing something normal.

 

However, I’ve found that even good stress is stressful. I have to remind myself that some activities that I used to love are too noisy or simply leave my nerves overly jangled. One sad example for me is parties. I love getting together with groups of friends - but I pay for it for days after, so I had to re-think what constitutes fun for me.

 

When I am more stressed than usual I have found that quiet is important for my system to calm down again. Sitting or lying down in a quiet environment for an hour or so usually helps. Sometimes I can listen to an audio book - as long as it is not anything with any suspense.

 

 

Only recently have I come to realize that accepting that I have CFS is a huge stress reducer. I still absolutely hate having this disorder but I have realized that no one has a magic cure and it is highly unlikely that I am going to wake up tomorrow back to normal.

 

Rethinking what my life is and can be as a person with a significantly disabling disorder has allowed me to let go of some things I was making myself do in order to try to appear normal. I swallowed my pride and got a handicapped parking sticker for my car. And I am better at telling people “no, I can’t do that.”

 

 

I do believe that avoiding stress to the extent possible is a key to being able to eventually cope more successfully with the stressors of day-to-day life. Someone once told me to think of getting better as my job right now – and to give it the same time and attention I once gave to my work. It is a useful analogy for me. I consider stress avoidance and careful pacing as the tools I have to do the job.