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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!

 

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2015 New Beginnings, Adventures and Excitement

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!

 
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Posted by on February 2, 2015 in CFS, Coping, Family, Home Life, Social Life, Working Life

 

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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.20120903-213829.jpg
 
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Posted by on September 3, 2012 in CFS, Coping, Home Life, Working Life

 

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Dealing with memory loss, short attention span and other joys of the mind jumble that is the Chronic Fatigue Syndrome mind (and menopause, don’t forget menopause)

My best friend is in menopause or as we affectionately renamed it, Mental Pause. She often gets her words mixed up, absolutely sure she’s saying coffee cup, but is actually saying tea bag. She will forget what she was about to do when she walks into a room. She will lose her thought mid-sentence. What was I saying?

Sound familiar?

I, of course being the good friend that I am, tease her about these incidents and make her laugh. Because one of the most frustrating piece of Mental Pause and Chronic Fatigue Syndrome is the effect on your mind. Sometimes it feels like you’re actually losing your mind. 

Also Known As (AKA)

While I’m pretty darn healthy and am able to do almost everything I want to do – as far as energy goes a lot of the time… I still struggle with mind gaps. On a good day, I recognize it after the word(s) come out of my mouth. Instead of getting overly frustrated (a little annoyed at myself sometimes I admit), I correct myself with “also known as”. I want to say, “I’m going to get a coffee.” and my brain via my mouth says out loud, “I’m going to get a pen.” Instead, I say, “I’m going to get a coffee also known as a pen.” 

This causes confusion to people who don’t know or don’t understand the disease but I don’t care. So what if someone at works thinks I’m occasionally a ditz? I’d rather smile and giggle, going on with my day, doing the best I can with the tools that I have than worry about what other people. Nor do I want to explain CFS to people 30 times a day in my normal job. It feels like complaining when I’m just trying to state the facts; it is what it is. Like it or lump it, this is my life. 

On a bad day, I don’t even hear the incorrect word(s). I usually know when those days are by how I’m feeling with my other symptoms (Chronic Fatiguey day) so either avoid people and stay hiding in my office doing easy work that comes very natural or stay home altogether. If I don’t recognize it, my good friends tell me when I’m talking gibberish. 

Most Days

I am able to go to work most days and be pretty productive, even when I haven’t slept much. Most days I even sound like a reasonably intelligent person (hopefully!). Even on the good days, my mind jumps all over the place? How do I keep things organized and keep the bases covered in my job and in my life?

  1. Write things down.
    1. I keep an overall to do list at work, in my favorite tool – a spreadsheet.
    2. Every day I write in a daily journal what the important things I need to complete on that day only.
    3. I use different pens, highlighters, sticky notes, anything to keep the day’s notes easy for me to differentiate. I’m quite visual so I need different shapes and colors; otherwise everything becomes a giant block of nothing.
  2. When I leave my desk, I open whatever document, web site, e-mail, etc. that I need to work on next. I can guarantee that 90% of the time I won’t remember what my next item was going to be without this trick.
  3. Re-read my notes and lists. Review, review, review. I may only need to remember for another 5 minutes, but in 30 seconds, it could be gone so until I’m actually doing the task, then I’m reviewing. 
  4. Laugh at myself. Constantly.
  5. Talk to someone at the end of the day. A good friend, parent, partner, anyone you can. I’m fortunate; I’ve got people at the ready. If you don’t, find a support group, church group, even a meetup group or a pen pal. We all need to talk to someone and get our frustrations out; whether we have CFS or are perfectly healthy.
  6. Be patient. It may sound like this stuff takes a lot of time, and some days it does. On the good days, it doesn’t take long at all. I’m still amazed at all the stuff I get done in a day. 

Take care of yourself, and remember, there are good moments, if not days leading to good months, even years. 

 
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Posted by on February 13, 2012 in CFS

 

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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

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).

Michelle in the Mustange

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!

 
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Posted by on January 6, 2012 in CFS, Coping, Fibromyalgia, Friends, Home Life, Vacation

 

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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

 
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Posted by on November 3, 2011 in CFS, Coping, Exercise, Fibromyalgia

 

Snow, Snow and more Snow! Fighting the winter blues, Chronic Fatigue and keeping a healthy positive attitude!

Today the snow continued to fall here in Calgary, Alberta. The nice thing about it is that it isn’t too cold, just a little brisk. :-) It is always a long winter; chinooks are a nice break usually and the year-long sunshine is definitely a huge bonus.

However, the cold and the long winter does take it’s toll. What do you do to counter the cabin fever? How do you handle the extra aches and pains that accompany -30 – -40 degrees Celsius? Who do you turn to when even healthy (non-CFS) family and friends are desperate for a reprieve? Where do you go to escape the reminders of winter? Why do we live in a place that boasts a whopping 2 month summer if we’re lucky?

Countering Cabin Fever

  • Watch a favorite movie
  • Order in from your favorite restaurant, play a summer themed soundtrack in the background and dance around your living room

Countering Extra Aches and Pains

  • Get a massage (from someone who knows Fibra Myalgia)
  • Give yourself extra time when doing things &/or getting ready to go somewhere. Most people seem to move slower with the cold; even more so with CFS/FM!
  • Have a warm bath. Don’t make it too hot or it will drain your energy even more. Add epsom salts or a soothing bubble bath.

Who To Turn To

  • Understanding family members
  • Close friends
  • Therapist, clergy or other counselor

Remember, almost everyone has trouble at some point with the winter blues. Asking for help or a hand to hold shows strength, not weakness.

Where To Escape

  • In an ideal world (wait, we wouldn’t need to be concerned with the winter blues in an ideal world, right?), you can run away from the winter even for a few days in a beautiful, warm tropical paradise with the cooling ocean breeze and the salt water dancing across your toes…
  • Cozy up with your partner and a warm blanket in front of a fireplace.
  • Read a romantic book, re-read a treasured novel you’ve forgotten about or curl up with the latest celebrity gossip magazine.
  • Call up an old friend and spend an hour just chatting and sipping a warm mug of tea.

Escape can be had, even for just a few minutes by focusing on some wonderful memory or dream

Why DO We Live Here??
For me, my friends here are the best I’ve ever had. They are the family I chose. Then there is the sun factor. The best thing for me in Calgary is the SUN!!!! I’ve lived in a lot of places, bar none, Calgary has the most sunshine all year long than any of them. It may require long underwear, a sweater, heavy coat, scarf, hat and 1-2 pairs of gloves or mittens just to step outside but there is high possiblity I’ll need sunglasses too. The sunshine is what makes me look up at the clear blue sky and forget for half a second the seemingly endless winter. Then my cheeks start to hurt from exposure and I tuck my face back into my scarf!!!

We’re almost through the majority of the winter here. It should be getting spring-like conditions soon. Then we’ll have even more sunshine! Hang tough and look forward to warmer conditions! Soon! :-D

 
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Posted by on March 21, 2011 in CFS

 
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