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?

 

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.

 

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!

 

Almost there!

It’s Tuesday of a short work week. My company closes down over Christmas so I’ll be off starting Friday until January 4th. I enjoy my job and am enjoying a decent energy week but ALWAYS am happy about time off! I especially like it when everyone is off, so I don’t have a huge pile of surprises when I get back. 😉

Life is good. Christmas presents  to wrap? Done. Christmas cards mailed? Done.  My time off work is deliberately quiet. I will have a couple of days out-of-town, but I keep that short and sweet so I can spend most of my time at home – chilling out with my relaxation favorites of computer time, crafts and movies.

My current status with my CFS is moderate. I’m still struggling with eating properly and drinking enough water. Why is it even though I know it makes me feel better, it’s so hard to do? Why does sugar taste so yummy and so hard to resist when I know in the long run it will only make me tired in a few hours? I was able to take a scheduled Monday morning off where I got to sleep in, watch the Survivor season finale from Sunday night and drink Chai Latte in the comfort of my home. Because it’s the last week of working for the year, I’m opting to sleep in a little more and take the bus to work every day. It’s way more fun to vacation where I can do fun stuff instead of forced into my bed and/or chair at home.

 

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.