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?

 

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.