Coping Consciously with Confidence

Chronic Fatigue Syndrome symptoms ebb and flow like the tide except with far less predictability or consistency. How do you cope with a constant changing symptom list that varies in severity by the hour, day, week, month or year? Today, I am concentrating on my reliable coping mechanisms. These coping techniques to handle the invisible disease that CFS is, also help me handle the stresses I face in my life, working and living a life in 2015, never mind with CFS.

Hobbies, Interests and More

My techniques vary in only way, whether it’s a physical activity or if it is about observing or listening. Everyone’s list will be different, plus the way the individual technique is utilized could alter. Music is one of my coping mechanisms; this is all about listening to music with a little side brain activity of learning about the artist or the songwriting. Another person may play guitar, write music or sing (none of which has not happened in my world so far!). These are the most common ways I’ve found to cope with CFS and life in general:

• Music (listening to music, learning about the artists, how songs were written, etc.).
• Movies (re-watching favorite movies ranging from romantic comedies, classic movies (Hitchcock especially), to a random horror – ultimate favorites are an inspirational true story like Moneyball [official trailer], Rudy [official trailer] or a great mystery story like Along Came a Spider [official trailer]).
• Reading (when I cannot read either due to my eyes bothering me, falling asleep too fast or too busy doing other things, I listen to audio books).
• Crafts: knitting, crocheting, counted cross-stitch with a little of adult coloring books, drawing, card-making.
• Visiting with friends/family: regular FaceTime chats with my Mom plus on-going conversations with those closest to me,

Stampin’ Up cards

Crocheted Blanket

Coping with Confidence

These techniques are simple, easy and inexpensive. When I was very sick, I listened to music and learned inspiring stories of singers who overcame the odds to follow their dreams and reach success. This helped me immensely to know others struggles, while different, they persisted until they met their goals. Today, I still use music to de-stress. I almost always have music on in the car, cranking the volume for those fun, dance-able songs, singing along (out of tune and not caring!) to get my groove on and forget for three minutes about anything else but this moment.

Simple techniques that can be used whether you’re in bed 18 hours a day, working part-time or even cooking supper for your family and running out of time and energy can make all the difference in the world. This can alter whether you cry yourself to sleep, yell at your spouse or give your kids a hug good night and laugh at their silly jokes.

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What makes coping with Chronic Fatigue Syndrome the most difficult for you?

How do you handle the various symptoms and the different degrees the symptoms appear/fade? 

If you are a friend or family member of a person living with CFS, how do you cope?

 

Tired Of Being Tired?

Today the elephant in the room is fatigue. It seems that everyone is tired. Between work, family and personal stresses, we all complain about being tired. Life is chaotic and I think most would agree they don’t get enough sleep. But what does being tired mean when you have Chronic Fatigue Syndrome? What does it look like? Is it like the average healthy person’s tired feeling when they’ve worked too long or been under too much pressure?

In my previous post Symptom Streaks Sinister Significance, I referred to the symptoms outlined below and focused on short-term memory or concentration issues.

Chronic Fatigue Syndrome has a variety of debilitating symptoms outlined on the FM-CFS Canada website (italics added by me), describing it as a

“pathological exhaustion not reversed by rest, no matter how much one has. This situation results in a substantial reduction of previous levels of activity. In order to be clinically diagnosed with CFS, an individual must meet both of the following criteria:

1. clinically evaluated, unexplained persistent or relapsing chronic fatigue that is of new or definite onset, is not the result of ongoing exertion, is not substantially alleviated by rest and results in substantial reduction of previous levels of occupational, educational, social or personal activities” (continued in previous post)

Fatigue

According to dictionary.com, tired is an adjective that means a person is “exhausted, as by exertion; fatigued or sleepy” with an example of “a tired runner”. (n.d.). Dictionary.com Unabridged. Retrieved October 04, 2015, from Dictionary.com website: http://dictionary.reference.com/browse/tired

The main difference from this definition from a CFS patient, is the key phrase “as by exertion”. WebMD, refers to CFS as “a condition that makes you feel so tired that you can’t do all of your normal, daily activities”. At the onset and during relapses, I argue that most days you can’t do any, never mind, all your normal activities. I remember, a few years into the disease when I was sleeping less (approximately 14 – 16 hours a day), the process to get ready to leave the house. Back then, this was how I prepared for an evening out.

• 9 am or 10 am wake up with a plan to go out in the evening for a couple hours.
• 10 am – 10:30 am Breakfast.
• 10:30 am – 12:30 pm Rest for a couple hours (light dozing or simply sitting).
• 12:30 pm – 1 pm lunch.
• 1 pm – 3 pm Repeat resting as above for a couple hours.
• 3 pm – 3:15 pm Shower.
• 3:15 pm – 3:45 pm Sit on bed for about 30 minutes to recover from the shower.
• 3:45 – 3: 50/3:55 Blow dry hair for 5 – 10 minutes (sitting).
• 3:55 – 5 pm Sit on bed recovering. Likely have a sleep.
• 5 pm – 6 pm Dinner with family.
• 6 pm – 6:30 pm Sitting, resting.
• 6:30 – 6:45 pm Makeup and put on clothes to go out.
• 6:45 – 7:15 pm Rest quietly.
• 7:15 pm – 9:15 pm Venture out of the house.
• 9:30 pm Bedtime, exhausted.

The only way I could conceive of getting out of the house, was to phase out my getting ready. Today I get up sometime between 5 and 6 am, shower, dress, etc., complete the entire process in less than an hour. I’ve come a long way from those early days. I know many people are still struggling and living as best they can.

This fatigue can be so overwhelming to our bodies, our psyche, our families. How do you budget your energy? How do you manage the bad days/weeks/months when you still want to have contact with the outside world?

 

To Exercise Or Not To Exercise

Exercise is a tricky and sensitive subject for anyone affected by Chronic Fatigue Syndrome. Should you exercise? What type? How much? How strenuous?

The picture on this post is my Oscar, one of my 3-year-old playful cats. He still plays like he’s an 8 week old kitten, but I think this is a good representation of what true exhaustion looks like in cat form. With or without CFS, haven’t we all felt like this sometimes?

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Exercise definition: (noun) bodily or mental exertion, especially for the sake of training or improvement of health

American Psychological Association (APA):

exercise. (n.d.). Dictionary.com Unabridged. Retrieved September 26, 2015, from Dictionary.com website: http://dictionary.reference.com/browse/exercise

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The Centers for Disease Control and Prevention organization talks about how to manage activities, specifically “While vigorous aerobic exercise is beneficial for many chronic illnesses, CFS patients can’t tolerate traditional exercise routines. Exercise programs aimed at increasing aerobic capacity are not recommended early in therapy.”

The simple truth I’ve found over the years of living with CFS, like everything else with this particular chronic illness, what works one day, may not work the next. What do I mean by this, especially about exercise? When I was first sick, I could not walk across the room without being exhausted. Adding any form of exercise was not possible. But that is thinking of exercise in the traditional sense only: the gym, running, swimming, yoga.

Exercise, especially with CFS, can be walking up the stairs in your house or going grocery shopping. In the early years of my CFS, I went grocery shopping with my Mom, for the simple act of walking. I was so physically spent from the process of leaving the house, I had to hang onto the cart for support the entire trip. Often, I would not be able to stand in line at the cashier, I would have to find a chair, or start the slow trek back to the car to rest. A long nap after I got home was usually on the agenda. The CDC article mentions looking for alternative ways to exercise, doing little things to help increase activity level without having the negative impact of too much, too soon.

Literally, years snuck by with this disease where my entire being was focused on getting through the day. Today I run (run/walk) an average of 30 – 45 minutes a time about 2 – 3 times per week. Before I lost my weight (100 lbs over 2.5 years – see an earlier blog post), I tried exercising in different ways, including running. I went to the gym for a while, I ran for a month and then I always fell off the exercise wagon. I admit it’s much easier for me to exercise now that I’m healthier and fitter, plus it is less intimidating now that I am not so heavy. But those efforts were not wasted energy. I believe the reason it is working for me now is because I’m physically and mentally ready to exercise. Nowadays, I notice a difference in my energy level after I exercise (most of the time). Previously, the workouts I performed did not have the euphoric effect I often heard about. Now, I get the mental and physical boost. Yes, I am physically tired after a run, as I should be but my brain is clearer and I feel better overall. I found a way for me to exercise that works for me and I can stick with; running works for me. What works for you?

Please share your own experiences. How much do you exercise? What types of exercise? What do you notice when you exercise or after you exercise? What do you notice with various exercise types?