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A Sample Day In The World Of Chronic Fatigue Syndrome

Successfully dragging myself from the bed at 6:58, I’d gotten dressed. As I sat there resting afterward, I found myself mulling over the discussion that I’d had with five new friends that I had discovered on Twitter the day before.

A lively exchange ensued, an we typed freely as if we’d known one another for years, and in a way – we had. We all suffer through the same relative hell. I can really connect with someone who speaks my language. No one else does.

“I need to get in there to try and start writing while my brain is fresh.” I told myself.

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‘Fresh’ is a relative term these days. I knew that by 11:30 – which in normality, would’ve been my “wide awake and running on all eight cylinders” time – I would be approaching worthlessness. On a good day, I might even be able to stave off ‘The Fog’ until 12:30 with the application of copious amounts of coffee and nicotine via vaping.

Here, one might say, “Oh, I have mornings like that all the time,” or “There are studies that suggest that too much coffee is bad for you,” or “nicotine is a dangerously addictive drug, and may be carcinogenic.”

Well, let me take this opportunity to clear up a few misunderstandings. I’ll take these in the order in which I presented them.

1) No, you don’t have mornings like this. Don’t patronise me because it pisses me off more than you could ever imagine.

In all of my 51 years before contracting CFS, I never ‘had days like that’. Never.

Not even on those ‘mornings after the night before’ when I was in my twenties. After playing music while sweating profusely, expending energy as if there were no tomorrow, drinking tons of beer afterwards, smoking cigarettes, and staying up until 2:00 in the morning.

2) Coffee and Nicotine are what keep me running – no – idling until the effect wears off. You have your drugs, I have mine, and I utilise them for a completely different reason now. My headache is usually anywhere between a dull ache above and behind the eyes, to a really bothersome piece of shit on the crown of my skull. Caffeine keeps it at bay. In my world, that nullifies all of the studies anyone can throw at me. I won’t take aspirin for reasons which I’ll outline later. Nicotine actually provides a bit of sharpness to otherwise dulled cognitive skills. Gives the brain a bit of an edge, albeit a dull one. Vaping removes all of the bad things relative to smoking and leaves you with the single saving grace. Besides, although it may be addictive, so are lots of things that the FDA approves, except that nicotine doesn’t come with a laundry list of side effects.

Besides, I’ve been through the entire health kick, beginning in my thirties. Lived the life. Quit drinking, quit smoking, quit eating at McDonald’s. You get the picture. But a little wasn’t enough, so I kept going. I lost a little bit of fat, began walking. Miles. After a few months, I began weight lifting. Then I bought the Trek 1000 and began the cycling routine I’ve written about before. I was in the best shape I’d ever been in. By God, I’d earned it too.

Until I was three months into my 51st year. Within a two week period, I went from 50 – 70 mile rides to feeling as if I were fighting the gravitational pull of Jupiter.

I had a doctor say, “Well, you are getting older…” Then I outlined the above scenario. No. Not that quickly did I ‘get older’.

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Okay! So I’m dressed and up. First order of the day: Make the freaking coffee. Drink a big glass of water. Then clean out the litter boxes, and fill the water bowls. Sitting down to rest afterward, of course. The activity that I just described ‘exhausts’ me. I inhale deeply, and blow out forcefully as if I’ve just completed a half days work.

Yes, it is embarrassing to admit. What else can one do? I’ve just gotten started, and already I feel the same way I felt when I finally lay down the night before. This is no exaggeration.

Nonetheless, having only begun I get up after a couple of minutes, grab the floor duster and do the kitchen. This is something that requires a serious application of sustained energy. Then sit down to rest. Huffing and puffing.

Repetitive actions are the worst. I used to do building renovation. Carpentry, drywall, painting, laying tile. All of those tasks require repetitive action. Hammering, sanding, sawing, or the constant back and forth motion of brushing or rolling paint onto a surface. Hell, I can’t even knead dough now without giving out, so I can’t enjoy baking bread like I once did. Sometimes preparing a meal takes two entire days.

The CFS affects every part of my life, and completely ruins what was once a great living.

But hey, I’ve got to begin writing, and it is now 7:30. Time’s a’wastin’ as my grandfather liked to say. So I park my ass in front of the computer. I have the screen turned down to perhaps 33% brightness because the disease has also affected my eyesight. Bright sunlight or artificial light makes my eyes burn and hastens the headache. Nobody knows why.

I gather my thoughts and begin typing. This time is crucial, because no one is up yet. It’s Saturday and the others are sleeping in. Which is groovy, because the slightest thing is capable of distracting me. Gone are the days of multi-tasking. I’m lucky to be able to concentrate well enough to do any one thing well.

Paleface is pawing at the water bowl. It is empty. Did I not fill that damn thing up? I stop what I’m doing to inspect. The one that he has chosen to drink from is bone dry. What the hell is wrong with me?

Did I not mention the constant forgetfulness that accompanies CFS? I look back across what I have typed. I haven’t mentioned it. What the hell is wrong with me?

I begin to type again. After two cups of coffee and working for some time, I ‘come to’. I am hunched over not unlike Quasimodo. I feel as if I’ve sat this way for a week. I straighten up and it hurts. I check my phone. Did I hear it alert? Where the hell is my coffee cup? Holy shit. It’s 9:30. I haven’t thought about what to do for dinner. If I don’t get cranking soon, I won’t have dinner done by 6:00 this evening. I’ll feel as if I’ve been beaten with a hose by then, so I have to start now.

And speaking of eating – sooner or later, one must eat. I hate eating these days, because this signals the end of my morning. Food does me the way that Valium used to. It hammers me like one cannot imagine. I have to lie down and sleep for two or three hours after eating, and I’ve tried everything. Eating lighter, different foods, nothing works. I can eat a few graham crackers with peanut butter (crunchy) and have a spoonful of honey. BOOM. The ‘edge’ afforded by the caffeine and nicotine becomes as dull as a rubber knife within fifteen minutes.

After I wake up around 4:00, I never regain the edge that I’d achieved that morning. It’s like running on fumes the rest of the day, until, finally, I will take two aspirin, one Benedryl, and go horizontal at 9:00. I’ll feel marginally better in the morning, but not for long.

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But that doesn’t matter. People are stirring now, and my concentration is shattered. I have to get dinner going.

You guys have a good day. Captain out.