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?

 

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?

 

What do you do with 15 minutes?

I recently read a blog post from Lorne Rubis, The Last 15 Minutes of Anything, discussing how important it is not giving up and giving it your all. One of the key points, is “Learning how to finish is something we can learn and practice“. Mr. Rubis is consistently a motivator, a leading example of work ethic, attempting work/life balance and how to truly practice your values at work and in life. This particular blog entry caught my attention for a couple of reasons:

1. I have incorporated a 15 minute minimum rule into my daily life for working on my writing. I use a technique I learned from Around The Writer’s Block (http://www.amazon.ca/dp/B011MCYQ4A). Basically, you follow a simple promise to yourself: have 15 minutes a day at least of product time. Product time can include research, editing, organizing, etc. including of course, writing itself. Product time (paraphrased in my own words) is anything that moves your writing forward. This is why it includes other things besides strictly writing. Since I’ve adopted this mentality, it’s helped me stop the time wasters of beating myself up for not creating something new and freed my creative juices to create more writing than I’ve produced in years!
2. Chronic Fatigue Syndrome/ME/FM all can have a drastic effect on what you can do in 15 minutes.

I  still remember the first time I had about 15 minutes of feeling symptom-free. I was approximately 19 years old and had literally been in bed for years. Attempting yet another thing to ease my symptoms, I was following a new regimen of high fiber cookies and an herbal tonic from a company called Lifestyles. At that time, it was the first time something made a difference.* Like a drug, that first high I experienced when I felt like I did before I got sick, was inspiring. Of course, it did not last, but I still actively seek that next high where I can feel like a “regular” person again, no fever, no aches, no nausea, just alive!

*In the long run, the products helped for a year or two and then I resumed a tolerable level of symptoms that remained the same for several years no matter what I tried. I use my own way of eating high protein, vegetables and low carbohydrates plus rest and moderate exercise to keep my symptoms in check.

That 15 minutes meant the world to me. What did I do? I actually just enjoyed the moment. I felt my body. I listened to my breath. I relished the moment.

Today, my world is vastly different. I work at a day job that needs at least 7.25 hours of my attention (usually more!) where I need to be engaged, intelligent and aware of my team, my goals, corporate objectives, etc., etc. I often find myself utilizing 15 minute increments to break the work down. I use this to help accomplish what I need to in the day/week/month but also to put things into smaller chunks. If i am experiencing a brain fog moment, I use a few techniques to overcome this:

• Stand up – take a breath.
• Walk for a few minutes.
• Clean up old e-mails (that do not need mental thought to process)
• Speak to a colleague.

15 minutes can mean finalizing a last section of a project, writing a blog entry when I am at home, or helping build a better relationship with a fellow team member. A lot can be accomplished in 15 minutes! Mr. Rubis’ blog refers to the last 15 minutes, but with CFS, that last 15 minutes can be at 10 am or 10 pm, depending on the day.

Take 15 minutes at a time – what can you do in 15 minutes to make your life better?

Please share your comments below!

 

The Girl With The Dragon Tattoo, or in my case, a ladybug tattoo starts 2012 with a sunburst in The Grand Bahamas!

The Grand Bahamas January 1, 2012

2012 began for me in the Grand Bahamas. New Year’s Eve was a quiet, sumptuous dinner at the resort restaurant with my buddy Joanne, followed by reruns of The Big Bang Theory. Then on the first day of the year, I laid in the sun, the cool breeze kissing my skin and a good book in hand. I managed to get only a little sunburned, but it’s all good.

I’m home now, still enjoying the sun, albeit without palm trees or the ocean.

The trip was a lot of fun. Joanne and I left on Christmas Eve and returned to Calgary, January 3, 2012. We were in Orlando, FL first where we picked up our rented Mustang at the airport. After a few days around Orlando, we headed to Daytona, FL for a couple, chilly days. Neither one of us is into car racing, so we walked on the beach and checked out the neighborhood. We ended up seeing a couple great movies (the new Sherlock Holmes and the American release of The Girl With The Dragon Tattoo).

Pit stop break for pictures in St. Petersburg, FL

Next stop was Port of Palm Beach to drop off the car and head on an overnight cruise with the Bahamas Celebration cruise line. I didn’t do so well with the smaller ship; that isn’t stopping me from trying a bigger ship with hopefully less movement! Also, didn’t impede my new-found ability to whip Joanne’s butt at darts (who knew?!). We stayed two days in The Grand Bahamas in Freeport at a beautiful resort.

Next up, back on the cruise ship overnight again. This time was better, though I slept most of the afternoon (possibly a wee bit too much sun the day before…). We docked and headed to Hollywood, FL for one last hotel stay. We found an awesome diner, Moonlite Diner where I had the most delicious milkshake ever – Chocolate Peanut Butter Banana. Need I say more?

My friend Nicole was kind enough to pick us up at the airport when we arrived at 10:30 p.m. on Tuesday night. The rest of the week was a planned stay-cation at home, catching up on rest, Coronation Street. I usually take a day or two off after a vacation, because no matter how much I rest, the travel home is always physically exhausting and draining.

So, here I am, last workday of stay-cation almost over and have to prep to go back to work on Monday. This is a very good way to start a new year!

 

chronic fatigue syndrome (CFS), symptoms… | Chatelaine.com

This is an article in the latest Chatelaine magazine, November 2011. Check it out. It’s a succint article explaining the basics of the disease.

chronic fatigue syndrome (CFS), symptoms… | Chatelaine.com

 

Chronic Fatigue Symptoms at Bay

After a week and half of sporadic sleep, plenty of nausea, headaches, body aches and general feeling crappy (oh so much fun!), today I woke up feeling pretty darn good! It’s not perfect; I’m never symptom-free. I am feeling rested though!! I am looking forward to a productive work day sipping a yummy Starbucks coffee and having a restful, but accomplished weekend!

Happy Friday!

 

The Start of 2011

It’s been a rough start to the year. My vacation was not restful like I’d hoped between too much travel (little as it was), fighting a cold and plus my increased CFS symptoms. So my first two weeks back to work were beyond tough; even had to bite the bullet the second week and take two sick days.

What’s been happening? My CFS symptoms: exhaustion, nausea, headaches, muscle aches and pains, etc. have been in full force. I’ve spent as much time as I can resting, drinking water and relaxing. Yesterday I got a massage, went to see The Green Hornet and just chilled out. Today I spent the entire day in my chair knitting and watching TV or movies; only moving to get food or water. By the evening, I had enough steam to do some chores in slow motion. I am feeling better though – my nausea and headaches are much better. My energy is actually better; I made myself stay still for the active rest therapy that works well for me.

I am hoping that I sleep well tonight and can start the week with a realistic amount of energy. Last week was up, down and around; one day I would feel okay then the next it would feel like a truck snuck into my apartment and ran over me! I’ve got plans to bus to work again this week so I can sleep in an extra 20 minutes/day. I might walk once or twice, but I’m leaving that open. I have my clothes ready and my vegetables chopped for my snacks.

The week is off to a good start. Fingers crossed that my insomnia remains in moderation or even better – nil!

 

Powering Through

When do you rest and when do you power through? Sometimes it is hard to know if a rest day/partial day is necessary or if I can get through the day anyway. I went to bed at a proper time, I slept pretty well but woke up exhausted and with virtually no brain power. I ignored it; got up anyway. I walked my usual pace to work (approximately 3.5 km) and listened to my music. When I arrived, I set myself up with leftover Starbucks latte from the fridge (I love my leftover lattes!) and a bit of sugar from yesterday’s bake sale. Intellectually I know that caffeine and sugar only provide temporary relief; however I like them anyway! I also made sure I drank plenty of water this morning. I got a pep talk from Joanne about little steps. My brain was a complete and utter fog. I felt like I was in a bubble above my head, watching this body go through the motions. I could not focus; could not decide what to do on the “to do” list for the day. I picked the easiest thing; took this one task, and one task only on. I completed it a short time later. Then I picked something else and focused only on that one thing. For someone like me, who routinely jumps from one thought and task to another and back and forth – it is so frustrating when I can only do one thing. I focused only on  the given task, in that given moment. Before I knew it, I’d finished a few things and my brain started to clear up. 🙂

Soon it became lunch time and my energy picked up even more. I drank more water, I stopped and focused, and I powered through. My evening will be quieter than my original plan since I have to get more rest tonight and take care of myself, but that is okay. I made it through a morning that I didn’t think I’d get through. I am ready for my afternoon; bottle of water at hand and brain power significantly improved. All is good again.

 

Little Things

Little things make a huge difference. I know it’s a cliché. However, with CFS and FM, it proves true. Last night I was limping around my apartment getting my things ready for work: lunch, clothes, bag prepped. The habit of getting my clothes ready the night before (another little thing) saves me the decision-making process in the morning and at least 10 additional sleep minutes (a little thing again!). Even with my limping around, still sore from the shoveling, I forgot to account for my extra pain in my clothes choice. Why would my clothes choice make any difference in my pain? Well, I planned to wear a dress and heels today. This is not a good plan when my entire body hurts; if there is ever a time for comfortable slacks and flat shoes, this would be it.

One of the advantages of CFS is my short-term memory or lack thereof. Absolutely at times, it poses serious disadvantages – forgetting how to get somewhere (coupled with my non-CFS related total lack of direction), having to write every little thing down, losing my train of thought in mid-sentence, etc.). Here is where the advantage for me is: sometimes I forget the disease and/or the current symptoms. Because my pain is usually under control, when I sit still or limit my movement, I forget that I have the pain. Until I stand up again. Last night, after I’d been sitting for about an hour with everything prepped for work, I stood up and my body reminded me of the pain I’m experiencing. I promptly changed my outfit from a dress to pants. No heels today thank you very much!

It’s the little things that differentiate the coping with this disease:

• Drinking enough water
• Resting
• Sleep – solid, restful sleep
• Practical expectations about physical strength
• Reality checks with what I can accomplish

My life is great; I have great family and friends. I have the support of wonderful people. I don’t put that in the little of little things. Why? Because that support is the BIGGEST thing. Without support, those little things wouldn’t add up to squat. Without support, without that major thing in my life, I wouldn’t count it as a life. I appreciate the people in my life. Thank you to all of you who love, listen and are there for me, no matter what I need!

“Only when you are safely sheltered… can you tell which way the wind is blowing. Only from the calm… can you see how to protect yourself from trouble.” The Book of Negroes, Lawrence Hill

 

A new week begins

This weekend was mostly restful AND productive – I do like it when I rest but still accomplish stuff. I did forget one important thing. For the past few months my exercise was limited to walking; no weight training or even yoga 😦 So, when it was warm enough to clear ice and snow from the road in front of my house (with borrowed tools from Joanne of course), an hour of heavy lifting (big chunks of ice from the road) wore me out!! I am extremely sore today and am promptly reminded that not only do I have Fibromyalgia too, but also am out of shape! 🙂

Here’s a brief explaination I found on Wikipedia: http://en.wikipedia.org/wiki/Fibromyalgia

There are a variety of thoughts/arguments about exercise with CFS and/or FM. I’ll write more about that as I find information (of course with my own point-of-view added!). What kind of blog would this be without my own experience and opinions?!