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.

When I first got sick at 15 years old, I slept 18 – 22 hours a day. I vaguely recall having fevers, nausea, and cognitive issues but when I slept that many hours in the day, it is hard to treat or even notice those other symptoms than the sheer exhaustion.Today, I average 4 – 7 hours of sleep at night, according to my FitBit and I have various degrees of other symptoms such as fevers, headaches, muscle aches and pains, etc. My life today and the symptoms I experience regularly are different today than even a year ago or five years ago. I expect that in another year, five years, ten years, I will have different symptoms to handle depending on my life, stress factors and overall health.

Short Term Memory or Concentration

As described above this includes memory lapses, using the wrong word, etc. This is not just being absent-minded. This is not about remembering people’s names after you met them or naming all your kids and pets before you get to the right name. For me, this appears as a complete blank moment – absolutely nothing shows up in my head when I am trying to say door. I am looking at the door. I know that I know the word. But I have no words. It’s just a blank space begging for the word to fill itself in.

The best example of this manifesting in my life was The Toast Incident. I was about four years into the disease. Standing in our kitchen, my dry toast was desperately waiting for the buttery goodness to melt across its whole wheat crevices. I put my knife in the sugar bowl, stared blankly at it when I pulled it out and it had nothing on it. Again, in the sugar bowl. Knife pulled out, no butter, nothing sticking to the knife. Why was it not sticking? I did not understand. This was simply beyond my comprehension. Finally, after frustratingly trying this over and over, after about five minutes, I finally saw. It was the wrong bowl!!! The butter dish was beside the sugar bowl. It’s amazing how much easier it is to butter your toast if you actually put the knife in the butter! While that particular toast did not taste that great because it was annoying that it took me so long to understand what the process issue was, I did successfully butter my toast.

Fortunately today, while I still experience concentration and short-term memory issues, it is 1% of what I experienced back in my sick years. I still have my incomprehensible moments where the simplest thing is the most difficult task for that day but I can disguise it, get around it and deal with it most of the time quite successfully. I wouldn’t be able to work in my day job (or write this blog) if I still lived under that constant struggle.

While I am able to disguise symptoms most of the time, sometimes those hidden gems show off for everyone to see whether I like it or not. I am at a work environment that allows me freedom to handle as I need to, but this hasn’t always been the case. I appreciate the fact that not only have I learned to live within my budgeted energy, but I have flexibility to modify my environment. Most of the time, I work remote because that is what I want to do, not because I have to because of my CFS. The freedom to choose is a wonderful thing.

Conversations I have with others who do not have a chronic illness, essentially healthy people, still complain about stress, fatigue, overwork, etc. Clearly whether a person has CFS or not, we all struggle with different symptoms of various degrees.

What steps do you take to improve your health? I’d love your comments below.