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?

 

Symptom Streaks Sinister Significance

Hidden in plain sight, symptoms are often present whether we are in the mood for it or not. Symptoms do not care if you’ve had enough of them. Symptoms do not mind if there’s just a few present or if it’s a full onslaught with either a massive crowd of a bunch of different symptoms or the really stubborn ones screaming for attention.

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; and
2. four or more of the following key symptoms are concurrently present for 6 months or longer:

• substantial impairment in short-term memory or concentration (attention deficit, memory lapses, frequently using the wrong word, spatial disorientation);
• sore throat;
• extreme joint and muscle pain without swelling or redness;
• headaches of a new type, pattern or severity;
• unrefreshing sleep (hypersomnia or insomnia, nightmares);
• painful lymph nodes;
• post-exertional malaise lasting more than 24 hours.”

I am writing today about the impact of one of these symptoms and how I have learned to live a productive life with it. The cool thing about CFS is that the symptoms vary by day, week, month, year. This translates to having better days than others and needing to handle the rough days appropriately. Not only is everyone’s experience with CFS unique to themselves, it is also unique to that person’s life. In this post, I focus on the short-term memory/concentration symptom.

 

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!

 

Endometriosis and Chronic Fatigue Syndrome

Right now, I’m napping on a daily basis and struggling with newly diagnosed, Endometriosis. I finally have a real reason for the pelvic pain I’ve experienced for years. I thought it was just part of getting older; I’m very glad to have a gynecologist to finally explore this and discover the source of my pain.

I will be having surgery in early December; exact date will be determined later. I admit that with so much happening this year, I’m struggling with my Chronic Fatigue Syndrome symptoms. It’s mostly my energy that’s lacking right now. I still work every day; but need a nap every day when I get home/finish if I work from home and the weekends spent at home include 2 – 3 short naps each day (usually 15 – 30 minutes).

I’m working on improving these symptoms the way I know works for me:

• Cut out refined sugar. No desert!
• Rest when I need to. Sometimes that means sitting more than I prefer but in the long run I’ll get back to my earlier energy levels.
• Exercise lightly (jog/walk for 30 – 45 minutes 2 – 3 times a week).
• Take care of my brain; audio books to stimulate me, detailed coloring books to keep my brain focused, great conversations.

I believe that with proper medical and self-care, diligence and the support of my friends and family, I will get back to my “normal”. Endometriosis, Chronic Fatigue Syndrome, life’s challenges; not one of these are obstacles that will stop me from being who I need to be everyday.

What do you do to overcome obstacles that seem to hold you back? What motivates you to keep working on improving your own life?

 

Life carries on. Handling life, with all the ups and downs, still living fully with CFS!

Due to circumstances I will keep private, the start of 2015 as a newlywed has changed to a separated woman with her first condo! My ex and I split in March, after only a year of marriage. To say this is unfortunate is an understatement for 2015. I am now focusing on healing my heart, health and mind, rebuilding my life. 

Our marriage was rocky from inception; this lead to stress, bad habit triggers and more stress. This stressful situation brought on symptoms of various degrees. I “enjoyed” (insert sarcasm!) frequent nausea, including the joyous vomiting I do not usually get with my nausea (and no, I did not feel better after throwing up), almost daily low grade fevers, general fatigue, mild depression and different aches/pains. 

Since our split, my nausea is down to a rarity, no more vomiting and aches and pains are the typical ones I’ve experienced for years plus new ones due to a more active exercise lifestyle. Fevers are still frequent, an annoyance but dissipating as time moves forward in my life. Through it all, I continued my health and well-being quest – releasing 110 pounds from January 2013 to April 2015. 😀

I do not have pictures specifically from when I started my weight transformation but here are a sampling of photos over the past decade. 

    Now in April 2015:   

 As with everyone, life is a journey. I am determined to keep focus on respecting myself which includes caring for my entire being: body, mind and soul. I am a single woman again; this does not equate to a lesser life but lessons learned. As long as I honor myself truly, I will continue to have a happy life, no matter what is thrown at me. I will continue to grow as a strong, energized (even in mind only sometimes!). 

I am ready to explore what is around the next corner! 

 

Reflections Then and Now: A Typical Day (what is that?!)

Today I got up at 4:15 am (on purpose) because I have a busy at work and need to catch up on things, or at least have 2-3 hours before the meetings begin. As I drove the 45 minute commute, I thought how much my world has changed since 1988 when my symptoms first began. Back then, I was in high school, working part-time in the family janitorial business and doing hours of volunteer work. When I got sick, I began sleeping in – as you saw by my first sentence – not a common thing in my world. I could not stay awake. I came home, if I made it to school, exhausted. I fell asleep, Mom woke me up for supper, and then after eating, I was back asleep until the next morning. This went on with numerous doctor appointments, school discussions, etc. trying to figure out what was going on with my exhaustion.

Fortunately, around a year after my symptoms began, I was diagnosed with Chronic Fatigue Syndrome. in this post, I will not go through the roller coaster of exhaustion, insomnia and years of herbal remedies, diets and various methods we used to give me some energy and relief of symptoms.Eventually, I was able to stay awake and live off between 4 – 7 hours a sleep most nights. Currently, this is still the average amount of sleep I get nightly. On this schedule, I’ve been working full-time since 2001, and most of the time have some sort of extra-curricular volunteer, part-time job and/or social life.

Today, I work 5 days a week, 7 – 8 hours per day, more hours when needed, write in my spare time, include time for many other hobbies and interests. I have a busy career, active life and work out a few times a week at my own pace. There are many more things I plan to do in my life: I intend to write full-time and leave this working for someone else (as satisfying as it is; truly it is!) so I can travel and pursue my other interests.

It’s been about 27 years since I began sleeping 18-22 hours a day. I am extremely grateful I can manage my symptoms enough to lead a full life and I will continue to listen to my body; feed it what it needs spiritually, emotionally and physically. I take one day at a time and treat my symptoms as it comes. Rest when I need to rest or as soon as I can get home. I appreciate the energy I have, the family and friends and support and I look forward to my future adventures!

 

2015 New Beginnings, Adventures and Excitement

Since my last post, many things changed. In no particular order: I am no longer in school, have a relatively new job at a new company, got married, live in the suburbs, released over 90 pounds and have two trouble-maker, spoiled cats.

What happened with school?

To be honest, I did not anticipate the amount of work doing a degree online entails. I thought a couple hours a night, supplemented with a few hours, even maybe eight hours weekends, that I would be able to handle the day job and homework. However, it took its toll! By the time I reached the last semester in my first year, I had to go on sick leave for a few months to recover enough to just get to the office. It seems silly now how I underestimated the work involved with school knowing my perfectionism and my passion for school; it is what it is. Despite the setback with my health for a few months, I have no regrets and given the same circumstances I would have made the same choice to go back to school. I’m halfway to my Bachelor’s Degree and hope sometime in the future, I will be able to finish the program. I am not there right now.

I went back to work gradually, part-time and built up to my full-time hours. It took a lot of aggressive rest therapy and also I started my journey to a healthier body weight. I was fortunate that I could  take the sick time I needed and still go back to my same job (Service Desk Analyst). It was a tough road and today I am in a much better physical and mental state.

New Beginnings

In May 2013, I met Gil through the matchmaking agency, It’s Just Lunch. The short story behind our romance is we were engaged in July 2013, I moved into his house in August 2013 and we were married February 14, 2014. Yes, our first wedding anniversary is around the corner!

In June 2014, I moved out of the oil and gas industry and into a financial institution world. I continue working with Information Technology, now as a Manager of ITSD (Information Technology Service Delivery) which equals managing the IT Administrative Support team. This career advancement allows me to explore a variety of new challenges including communication enhancement, process improvement and overall people management. It is exciting and I love working with this team at this company.

I am looking forward to an interesting year!

 

Finding the balance: Working full-time, going to school full-time and living with Chronic Fatigue Syndrome

Finding balance is always tricky for me. Balance between working, resting and having some semblance of a life is challenging for most but I also crave extra challenge and personal growth. I always loved school and have wanted to go back for years. It was never possible physically or financially before. Since I started working in oil and gas industry, I’ve worked long hours and worked strong and diligently as much as could, taking on extra projects, even long-term extra responsibilities. This left me drained physically and mentally. When I changed companies in 2010, it was an effort to find more balance. I enjoyed the new job, the stable work hours and the less stressful environment.

So, what changed?
I work 8 – 5, live close to work so it is only a 10 minute walk and was able to oversee a large project transferring our wireless device management to an outside company. But It wasn’t enough. The job was something I’ve done for years, IT administration. Is that all I was ever going to do? What about writing? What about starting my own business? Where would I be in another 5 years?

Here it comes… Schooling!

I started investigating DeVry and discovered that I could do a Bachelor’s degree without stepping into a classroom. Yes, it would be expensive. And a lot of work. I’m not a huge fan of commitment so this was a big one. It requires discipline, a huge amount of energy and a major lifestyle change. It means studying, homework, getting to work every day and studying most evenings and a chunk of every weekend. The pro and con lists were extensive.

RISKS

• Relapse of CFS
• Ability to do my job effectively suffers
• Financial commitment
• Embarrassment if I didn’t do well or succeed

BENEFITS

• Finally get the education I’ve dreamed of
• Find out if I can do more than just working
• Learn the discipline to work extra at home to use for future writing projects
• Enhance my career as it is, with or without writing
• Personal growth
• and the list goes on, and on…

Where am I at now?
I am at the same company, but moved to a new role as a Service Desk Analyst. This allows me to grow in my day job along with my studying. I started my degree February 27, 2012 and am estimated to graduate by mid-late 2014. Thanks to earlier course credits and my entrance exam results, I do not have to take a lot of the required entrance courses like social sciences and humanities. Instead, most of my 2.5 years will be spent learning relevant material like data analysis, management and planning. I’m halfway through semester 2 and enjoying it very much.

• I also now have a 2.5 month old kitten, Oscar who loves to help me with my studies. He loves to play with pens, paper and laptops so he provides lots of entertainment.