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Category Archives: Myalgic Encephalomyelitis

The Chronic Fatigue Cycle of Life

I’ve felt horrible the last four days.

I’m lucky to have a peanut butter sandwich on days like those. Cooking a full meal is akin to climbing Mount Everest. If it weren’t for boiled eggs, oatmeal, and milk, I’d probably dry up completely.

This morning however, I woke up at 5:00 without a headache. This, in and of itself, already puts me in a more positive frame of mind. After cleaning litter boxes and filling food bowls, I sit to rest, and vape while I quaff two cups of coffee. These are the only two ‘treatments’ that I rely on to get me into ‘work’ mode. Sometimes they make a big difference. I don’t trust doctors or the FDA anymore. How can they prescribe something to treat my condition, when they claim that they don’t even know what the hell has caused it?

I look at the studio equipment that I disassembled over a year ago. I really want to put that thing back into the operational mode, but today there are more pressing matters to attend to. The house has gone to hell over the last four days and I simply have to clean up.

I start the dishwasher, and drag a load of clothes into the laundry room. As that process plays out, I run my big, yet lightweight microfibre floor duster, then draw a big pan of hot water, and add plenty of bleach.

I have a big kitchen, a big den, the laundry room, and a bathroom to mop.

I’ve been in the ‘process’ of tiling the floors for the past two years. A few years back, my son helped me take up all of the carpet, because vacuuming that nonsense was becoming close to impossible for me.

I have three portions of the kitchen in a sort of ‘grid’. I mop one grid, then rest, vape, and drink more coffee while it dries. Then move on to the next portion. I have the entire floor done within an hour. Sufficiently warmed up, I start on the den, which is also where I ‘live’. My bed and everything is in there.

The rhythmic back-and-forth motion of mopping is beginning to make my back ache and tire, but I do my best to ignore the pain.

Half-way through the den, the washer signals that the laundry is ready to go into the dryer, but it really is nice outside today, so I haul the bed linens out to hang up and dry. Sun dried bed sheets are one of the finer things in life.

Another hour later, the den and bathroom floors are finished. I rest up and look at the studio equipment again. I’ve got at least twelve sketches of new tunes recorded into my phone, and I feel pressed to get them properly recorded.

I haven’t produced a new CD in almost three years, and am beginning to think that the format is a waste of time and energy. Owing to the fact that I am a visual artist as well as a songwriter, it only follows that I feel it necessary to do all of the cover art and liner notes myself. I’d like to just quit production of CDs, however the artist in me eschews mp3 files, and feels that in order to truly release songs, they must at least be recorded to CD to count as a ‘work’. I come from an era that the purchase and ownership of a physical product was part and parcel of a ‘music collection’.

I reflect on my immortality, and hope to the heavens that I do not die, leaving a bunch of orphaned tunes on my phone.

After putting another load into the clothes washer, I sit down at my desktop to work on a generation of my on-line genealogical tree that has been giving me a problem, but this is not what I really want to do. I see enough of this on days that I can do little else. Besides, the light from the screen hurts my eyes.

I need to get back to work. After folding the dried clothes, I empty the dishwasher, and then sit down to rest and vape. Darn it. Where did the time go? It’s a quarter to eleven, I’ve drained an entire pot of coffee, and I need to cook something. Won’t everyone be surprised when they get home! Oh, boy! A hot meal.

But I’m already feeling the effects of my efforts, and I’m thinking that tacos sound extreme enough for what is left of my energy reserves, so I start cooking the meat and chopping the onions. Repetitive motion tasks seem to be the worst. Onion chopping kills my arm now. The onset of fatigue is so quick that it still leaves me incredulous, but there was a time that I was capable of butterfly curls – 50 reps of 25 pounds – without breaking a sweat. Glory days.

After eating, I’m shot. Food affects me like a Valium, and sleep becomes unavoidable. While lying in bed and checking my Twitter feed, I glance across the room at my recording equipment once more. How many times in the past few years has this scenario played out? I can only hope that tomorrow will be as productive as today was, but experience has taught me that tomorrow I’ll most likely feel as if I’ve been beaten with a rubber hose because of today’s efforts.

If I’m lucky, I’ll feel better in a few days and will be able to begin the cycle all over again, but my chance of ever getting the studio back together looks slim from this side of life.

By the way – in the event that something unexpectedly happens to me, the code to open my phone is PEnnsylvania 6 – 5000. If there are any tunes on there, I would like to think that one of my musically inclined colleagues will take it upon themselves to finish those tunes for me.

CFS Worst Case Scenario (Typical Day)

I’m going to write a bit today, not about music, but about this damned affliction that I have mysteriously been strapped with, generally referred to as Chronic Fatigue Syndrome.

I’ve only attempted to relate this disease in one or two other blog entries, but it seems to garner a decent bit of attention when I do, so I’m going to take a stab at it today, primarily because today is one of those days that I almost think that I’d be better off dead, although that may sound a tad harsh.

No, I’m not contemplating suicide. I don’t have the guts to do that to everyone else involved in my life that such an action would inevitably and adversely effect. The stigma surrounding CFS alone is bad enough. The inability, or unwillingness, of the scientific community to get to the root cause of the disease is enough to drive an individual into deep depression, and to withdraw from society.

No fun can be had. No breaks can be taken. Nothing is available that will alleviate the constant dull headache – the constant pressure at the top of my eyeballs and consequential sensitivity to sunlight. Nothing can take away the God-awful feeling of constant sluggishness that I feel from the moment I rise to the time that I fall asleep.

I have most recently described the feeling as one of having a constant hangover, coupled with that of coming down with influenza. I am aware that this may be impossible for those who do not suffer from the affliction to identify with this notion, or even believe that it is possible to feel this way 100 percent of the time, but I can assure the reader that this is the way that it is.

And then, I have to awake and begin the day. The difficulty of having to get through a day, accompanied with these symptoms, cannot be over emphasised. There are things that need to be done around the house, and I have to do them. The smallest tasks are sometimes nearly impossible to surmount, because the symptoms that I have just outlined are only baseline symptoms. Sometimes they are considerably worse, and other days they are marginally better. On the better days, it almost reminds me of how good I used to feel. If one is not careful, this will bring on a bout of depression, and I learned that lesson the hard way, so I must put that out of my mind, and be glad that I’m having a “good” day. It is almost laughable to refer to it as good.

One has to rest several times while washing the dishes. One has to rest after cleaning the cats litter boxes. One has to rest while sweeping and mopping the floor. One has to take breaks while cooking a meal.

Some have asked, why not use a dishwasher? Because washing dishes gives me something to do.

Others have asked why I don’t order out. Because it’s too expensive, and again, cooking gives me something to do.

One inquired, “Why don’t you lose the cats, dude?” Because the cats give purpose to my life. I talk to them, I fuss at them, I cry to them, and I tell them my troubles, and they respond by nuzzling and marking me. Sometimes that in and of itself is annoying, but I tolerate it, because if I were completely alone, I would begin to question the value of my life, and that is best not to ponder.

What it seems that many do not understand, is that as humans, we want things to do. If we begin to strip away ‘doing’ in order to ‘not do’, then our lives reach a point to where we feel useless and unnecessary.

Lacking the ability to do an honest day’s work anymore, one’s life becomes amazingly empty. I used to imagine having nothing but all the time that I required to do nothing but write and record my music. Having reached this point however, has been a mixed blessing, as recording music has become a major task. Singing is a task. I have to pause the process and rest between verses, because singing requires an incredible amount of energy. Either it always did and I didn’t notice because I had a seemingly endless store of it, or it did but it didn’t matter because I had said endless store.

These dishes – the litter boxes – the mopping and the sweeping. These tasks have taken on new meaning in my life in the past nine years, and if you can’t imagine how that must feel… you should consider yourself very fortunate indeed.

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.