It’s almost 2 pm, and I’m quite pleased with the way this day is shaping up.
Thus far I have written two blog articles for different websites. I have update the front page of a news site. I sorted through the overnight catch of email — deleted some 50 of them, answered 36, and filed away for later handing a further 30 or so.
I have also written a few lines for an e-book project, made some notes on an overdue book review I hope to finish this week, and updated three websites to the latest WordPress version.
Oh, and I’ve done a load of laundry, and a few minutes ago I started the bread machine.
Yes, I work from home — and after doing so for nearly two decades I wouldn’t want it any other way.
I’ve just brewed myself a cup of Organic Chai, from Clipper (best British tea, if you ask me — and a nice diversion from my usual line-up of coffee drinks), and am typing this during a break.
It’s raining outside. Inside it’s warm. I’m tuned to a Soul & Jazz station. And I listen to the parrots in the tree tops outside debate how best to build their nests.
Chronic Fatigue Syndrome
About 23 years ago I was diagnosed with Chronic Fatigue Syndrome — an odd and debilitating medical disorder that isn’t yet fully understood. (It is also known as CFIDS — Chronic Fatigue and Immune Deficiency Syndrome, which scientists say is a better name for it; and sometimes as ME — Myalgic Encephalomyelitis).
The worst thing about CFS is that you get tired — or exhausted — for no reason at all, at any time of the day or night, regardless of how much rest and sleep you have had.
The second worst thing about CFS is that it has a tendency to turn total strangers and casual acquaintances into medical experts who want to share their insights with you (if you let them, which I don’t).
While certain symptoms are common to all who have CFS, not all have the same symptoms. Nor do the symptoms — which aside from fatigue can include headaches, sore muscles, impaired cognition, poor short-term memory, and dozens of other nuisances — always occur with the same intensity.
Best way to understand what having CFS might feel like: Imagine you had a rough night of sleep, worked an entire day, had to work late, and came home exhausted. For one reason or another you then could not get to bed until 2 am, and had to get up again at 6 — more exhausted then before you went to bed. That. Think of that. That’s how it feels to have CFS.
Again, not always with the same intensity. But basically I am either tired, very tired, or exhausted. On a good day, I merely feel tired.
As a result of my level of CFS, two medical doctors years ago have declared me as ‘100% disabled,’ which meant I was eligible for social welfare payments here in the Netherlands. (Holland, as most people know it, has a fantastic social security system, as well as a very good national health service).
But I soon discovered that being ‘100% disabled’ didn’t mean I could not do anything. I was able to work an hour here, a half hour there, and 10 or 20 minutes at another time of the day.
That’s how my home office was born — a place where I work whenever I can. As a result, I was able to stop receiving welfare payments well over a decade ago.
Today I’m having a good day. I’ve been quite active and already got a lot accomplished. I only nodded off at the keyboard once, but this time at least I didn’t inadvertently delete something in the process.
And yes, Janet has Fibromyalgia — a condition that shares many symptoms with CFIDS, but with the addition of painful joints.
We stay active, though.
I do have deadlines, even though I am my own boss.
For instance, I want to have dinner ready by the time Janet comes home from work. The laundry shouldn’t pile up too much. Fresh bread must be baked only regular basis.
I’ve also got a number of websites to keep up with, and there always is a lot of email to answer.
In many respects I work harder than before I got CFS. But if there’s one thing CFS-ers learn it is this: listen to your body and adjust your activities — or the intensity of those activities accordingly.
Too, don’t beat yourself over the head if you can’t get something done today. Or this week. Or even this month.
That’s why deadlines amuse me. I take them in stride.
This post was slightly updated from an earlier version.