I don't get many questions about my illness—it's a pretty
boring subject, after all—but one I've had one a few times is this... What does
it feel like? I really get the sense that people have asked this out of genuine
concern and curiosity, but, in the moment, I've probably offered a short and
not particularly informative answer. It's not that I don't appreciate the
concern, it's more that the answer is more lengthy than the social rules of
conversation permit. At any rate, today I will do best to answer it, and I will
venture to do that without the use of confusing metaphors or in the spirit of a
pity party. So, keeping in mind that my experience is just one of many…Chronic
Fatigue Syndrome--what does it feel like? Well...
It feels tired. I know this is a bit vague because
everyone feels tired sometimes, even a lot of the time, but, trust me, it is
different. If you have ever been pregnant and yearning to end your day at 1
pm—it's kind of like that. Or maybe if you've flown to the other side of the
world and spent a day or two feeling incapacitated by jet lag—yea, that
feeling. Or maybe you're familiar with that sickly tired you get at about 330
on a night shift—similar to that, just ALL day, even at 8 am after a 10 hour
sleep. It is the kind of tired that isn't a side show, but the main act in your
day. Add to that...
It feels heavy. To me the heaviness is most
pronounced when I am grocery shopping, so I'll use that as an example. Imagine
pushing a loaded refrigerator around instead of a shopping cart—that's what it
feels like. Or maybe wearing lead suit while you climb the stairs or chase your
toddler around. Not always, but sometimes it so heavy that I can't lift my
limbs off the bed.
It cycles like a binge-drinking alcoholic. (That's a
simile not a metaphor!) One of the most universal components of CFS is a
something called post-exertional malaise which basically means symptoms of fatigue and malaise surface 24 to 48
hours after some kind of exertion. This aspect also likely
confuses people because it is not uncommon to see a person with CFS out and
about, seemingly living an ordinary life. The best way I can think to explain
it is this...When you see someone with this illness engaging in normal to
strenuous activity, essentially what you are seeing is an episode of
binge-drinking—all fun and games...until hangover time tomorrow. So,
say, from time to time, you might find me out gardening or staying out late
with my girlfriends. Well, post-exertional malaise will ensure that I feel all
kinds of shit for doing that tomorrow. That's just how it works.
Also like an alcoholic, a sufferer of CFS can have periods
of sobriety (or remission) where symptoms fade and he/she may be able to
increase their level of activity for a while. I had a lengthy (over 6 months!)
remission recently—an awesome time of which I relished every waking second of
that feeling of wellness. Unfortunately, like alcoholism, it is a disease that
lingers and a 'fall off the wagon' can be triggered by the smallest of things,
as was the case for me when I got simple case of strep throat. Speaking of
which...
It feels like sick. The science behind CFS isn't
entirely complete, but it is known to leave sufferers immuno-compromised. I
find that when a run of the mill virus runs hits our household, I am the first
to get it, the last to shake it, and the most miserable in between. Comprendez?
It feels like I've been robbed—mostly of time and
quality. Managing this illness, for me, means consistently early bedtimes and
rest periods during the day. If I were to quantify it, I would say that it
feels like I operate with 2 less hours a day than everyone else, and the hours
that I do have are not always that great. For me, this has meant the loss of
'extras' like hobbies, evenings in with my husband, and time with friends.
It feels a bit like I have become my 90 year-old neighbor.
Whenever I enter a conversation with old Gladys next door, she inevitably tells
me about how her health has deteriorated such that she can't grocery shop or
vacuum or keep her flower beds or walk to the end of the block, etc. And then
she'll get into how she really should get a cleaner or downsize and how she
just can’t manage anymore...All the while, I'm thinking, 'Yes, Gladys, don't I
know it!'
It feels up and down. On any given day if you ask
someone with CFS how they are doing, the answer will heavily depend on if they
are having a 'good day' or a 'bad day.' I have heard those expressions SO often
from other sufferers of this illness. And whether or not you are having a 'bad
day' largely depends on if you overdid activity the previous day by, say,
attempting physical exercise (BIG no-no) or going to bed late, etc. On the flip
side, if you behaved like a proper lazy ass and had a good sleep, you
might actually feel quite well.
It feels like paranoia. One of the less-than-awesome
side stories to this illness is that I have become totally self-obsessed with
my health. I can't help but forever sizing up how I am feeling today and what
caused me to feel that way and what I might avoid in the future to prevent
episodes of fatigue. Even when I am feeling well, I am always wondering what
tomorrow will look like and carefully choosing whether or not to engage in A,
B, or C in case I inflict the wrath of the illness. Add to that the anxiety
about career prospects, my abilities as a mother, and whether or not I will
ever enjoy life like used to and so on.
Hope this answers the question for anyone who’s ever
wondered. I realize my illness is not the most exciting of topics, but, I do
appreciate the concern and the opportunity to vent a little sometimes. Thanks
for listening and Happy Tuesday.
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