Living with Chronic Fatigue Syndrome: Managing Expectations

Living with chronic fatigue syndrome (CFS) means constantly weighing what you think you “should” be able to do and what you actually can do. Three years into it, I’m still learning how.

(For those of you just joining my P-Mag ramblings on the subject, do check out my previous posts: How To Be Sick and Parenting With CFS.)

My symptoms are wide-ranging, yet vary with severity. Some days, the “brain fog” is relatively light and I can get all sorts of writing done, or balance my checkbook with ease, or whatever other mental tasks are required for the day. However, it might also be a day when my leg muscles and joints feel like that of an arthritic 70-year-old, so while I may be able to accomplish something, I’d really prefer to accomplish it in bed. Other days, my body is in low-level pain – for the pain never really goes away, it just becomes easier to ignore sometimes – but my brain and my hands won’t work for shit. I’ll try to write something down, and my handwriting is (extra) sloppy and I’ll accidentally miss or swap letters. As in, “letters” might become “leters” or “eltteres.”

Or, there have been times where I’ve been holding a drink and paying attention to something else, and without realizing it, I’ve either tipped the drink onto myself or I’ve let go of it altogether. There are days when my hands are shaky or I have trouble picking up small objects – anything that would require the use of a pincer grasp.

Days like that, I get frustrated. I think, “Come on! This shouldn’t be so fucking hard!” Yes, the swearing is worse on those days too. I’m not just frustrated, I’m angry. “A normal, functioning, and intelligent person would not have this sort of trouble,” is where my thinking heads next, even if I logically know that motor skills and intelligence are not exactly intertwined.

On the actual fatigue front, most of the time I have to make decisions. For example, do I cook dinner or do I do some laundry? Most days, I can’t do both. As silly as it sounds, standing and concentrating at the same time can be exhausting. The bending and lifting and folding involved with laundry makes me very slow at getting it done, and because of that, my husband and two kids are constantly rifling through baskets of unfolded clothes to see if they can find a clean version of whatever they need. Cooking is something I actually enjoy when I’m feeling okay because I like the end result. I like a good meal.

Today, my arm and leg muscles ache to the point where the thought of even standing up to throw some rice in a pot and once again eat beans and rice for the billionth time (It’s cheap and easy, what can I say?) makes me want to take a nap. Also, I’m staring at three baskets of unfolded clothes.

How did it come to this? How can I make peace with my new reality? And when am I going to learn to properly pace myself?

See, the problem is that over the weekend, I was busy. My sister-in-law, niece and nephew are in town, and my mom wanted all of us to get together. Saturday, we went out to lunch, took the kids to the park, and then all of us came back to the house for dinner (though I didn’t cook). This is where the “normal” part of my brain gets angry: “How is that taxing? Shouldn’t I be able to handle what is essentially sitting and talking while monitoring the kids?” But no, I was exhausted, and the annoying thing about CFS is that even when you’re exhausted, it can still be difficult to fall asleep. I slept like the dead from 2 am to 11 am that night/morning, but it felt like an hour. Sunday was rather busy as well, even though I stayed at home. Yesterday and today, I’ve felt like I ran a 5k while hungover, and I hate it. A “normal” person “should” be able to enjoy visiting with family, you know?

I need to remember that my “normal” is different from other people. What I’m going through is grief, plain and simple. I am grieving for the way my body used to be.

Now, my husband and kids do help out and work around my limitations. Being around other children makes me realize even more so what my kids do for me, even just in terms of noise level. Noise sensitivity is one of my symptoms, and they are even good enough to not play with loud toys on my bad days. My almost-5-year-old son will say things like, “Are you awake enough for me to play with the Fijit Friends?” And while part of me is sad that he has to ask, I’m still thankful that he does.

The real guilt comes with general housekeeping things. Aside from the aforementioned laundry and cooking, just reliably making myself do things like sweep the floor or wipe up a table (for the billionth time, thanks, kids…) either seem ridiculously hard or my brain fog will be bad enough on some days where it simply doesn’t occur to me that it needs to be done. All of the sudden, I’m looking at my disorganized, messy piles of junk and thinking, “Here I am telling the kids that they need to clean their rooms when I’m barely even doing it myself. No wonder they don’t listen to me.”

What I am trying to do is decide what is important to me, and then figure out how I can accomplish those goals without making my CFS worse. It is a constant series of adjustments – if I do this thing now, what do I need to limit later?

Most of all, I need to stop comparing myself to what I used to be able to do before I got sick. I need to stop comparing myself to what other people are capable of doing, but at the same time, I need to try not to get bogged down in the depression related to it all and realize how much I still have left. If I take care of myself, truly, managing this illness might not be so hard. I have hope.

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Sara Habein

Sara Habein is the author of Infinite Disposable, a collection of microfiction, and her work has appeared on The Rumpus, Pajiba and Word Riot, among others. Her book reviews and other commentary appear at Glorified Love Letters, and she is the co-manager of Electric City Creative.

9 thoughts on “Living with Chronic Fatigue Syndrome: Managing Expectations”

  1. Oh wow. Yes. All of this. I could have written all of this. (If I look back at old journal pieces I’d probably find some of these exact words)(Although for me it isn’t CFS, but it all sounds very similar to Graves disease and fibromyalgia)

    It is grief. And anger. A whole lot of anger. How could my body let me down like like this?

    I remember my lowest point, when it hit me just how fucked I was. I wanted make a turkey sandwich. All I had to do was walk into the next room and slap turkey on two slices of bread, a two-year-old could do it ffs, but  not me, I could barely even hold my head up. I couldn’t , and the realization was so awful I sobbed. I was so damn angry that my own body would dare thwart my will.

    It’s been eight or nine years since my first diagnosis, and while I can say I have finally reached some form of acceptance/truce with myself  I’m still horribly pissed that I have to accept limitations on my abilities.

    But I’m getting there. I’ve accepted the perpetual mess that is my house. I’ve accepted that if I want to bake I’m going to have to trade that off with something else.

    I’ve accepted that The Spoon Theory is now my governing force. And it does help, to think of it concrete terms. This is my number of spoons for the day, how do I want to spend them?

    Ok, I’m going to stop now :-D Best wishes heading your way.

     

    1. Yes, The Spoon Theory is a nice way of thinking of it. I’m not always good at remembering it, but…

      I also have fibromyalgia, but that hasn’t been going on as long, and thankfully, it’s on the milder end. For whatever reason CFS and fibro often seem to go hand in hand, and it’s hard when you’re exhausted and just want to sleep, but you’re body’s doing the whole fit of “Oh hey! You’ve been lying here too long! TIME TO CRAMP AND ACHE AND [evil laughter].” etc. Or at least, that’s how it’s been lately. My CFS symptoms are moderate, comparatively.

      For instance, right now I’m annoyed that I basically can’t do much of anything all week because I’m recovering from last weekend, and I have somewhere I need to be on Saturday, so I have to rest up for it. I’m just glad that school starts for my kids soon because they are so bored around here when I’m not up for doing anything.

       

      And thank you, for the well wishes.

    2. I’m so glad you mentioned the Spoon Theory; I myself do not have a chronic illness (unless you count depression, but it’s been ebbing again), but I think of it every single time I hear someone talk about it. No other metaphor has helped me relate as much as that.

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