Tuesday, 21 June 2016

To Anyone's who's ever asked what Chronic Fatigue Feels Like


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.