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.

---

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?

 

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.

 

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.

 

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!

 

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!

 

Surviving the Holidays

Vacation is a wonderful thing. I am so glad that I have nearly another week!! At this point in my holidays, I’m not sleeping properly, eating way too much sugar and not walking nearly enough (or at all!). Moving forward, I will be starting a sugar-free sort of detox again. Normally I can have a little bit of sugar and be okay, but this is just over the top and I am seriously feeling it. I wish cookies didn’t taste so yummy! I put the chocolates away already. Next step is to put the cookies into the freezer (no, they do not get thrown away or given away – stop thinking that crazy talk!). After that it will be a massive intake of water daily and a reintroduction to light exercise. Wii Fit here I come!

I will starting Thursday, December 30, 2010. Why then? Why not January 1st when everyone else starts their New Years resolution?

1. Because I’m still around family and friends today and tomorrow.
2. I don’t buy into the New Year’s resolutions. Every single day is the time to start a new goal, new way of living, new start so it doesn’t matter when I start, as long as I start!
3. Waiting until January 1st puts me too close to back to work; having to deal with the sugar withdrawal and go back to work is no fun. It will be much better to get the sugar withdrawal over with. After awhile I’ll be able to have a little sugar – in moderation! 🙂

Here’s the plan laid out:

• Zero cookies, chocolates or sugar
• At least 8 cups of water/day
• No Diet Pepsi during the day
• Go to bed at a reasonable time (no later than 10:30 except maybe New Year’s Eve of course if I’m out)
• 30 minutes of Wii Fit/day while on holidays
• Rest as much as possible
• Rely on my friends and family for support

I realize the first couple days especially will be tough but as long as I’m disciplined I know it will be worth it. I anticipate massive movie watching, knitting and random calls to friends! Thank you in advance!