Warning: This post would fit in over at Tulpen’s Bad Words. Actually, it might be a bit much for her.

I fucking hate the insidiousness of invisible disorders. How much is the disease, and how much is “normal”?

For years I thought that everyone was as exhausted from their job as I was. Everyone talks about working full-time and being tired when they get home and just wanting to sit down. But most people can interact, and stand up, and get food, and do other basic things. I figured I was just weak or being lazy. But no, my level of exhaustion was far beyond what is normal. I finally learned that. (But I still doubt it.)

And now, I work less. I sleep more. But still, it feels like there’s no time or energy to do shit. Like, oh, I don’t know, clean the fucking house.

Take yesterday. I woke up at 10:30 (I know, I’m pathetically lazy. I am recovering from my weekend of travelling and I stay up late to see my hubby since that’s the only time we have together). I showered and got out the door to start working at noon. I worked solid (except for a 1-hour massage which turned into a 40-minute one when my appointment ran late because everything was so back-to-back, fucker) until 9:30 PM, when my last student left class. I ate in my car while driving to appointments. Then I got home, took care of all the business e-mails and tasks I’d neglected all weekend, spent 30 minutes doing fun stuff on my computer, and collapsed into bed. Obviously, almost no time to do any housework or such. Except that I only worked 9.5 hours! With the starting and ending drive, say 10+ hours. With the computer time (answering e-mails, updating classes, doing paperwork) say 11. It’s just ME that led to those being basically the only hours I was awake. Should I have gotten up earlier? Stayed up later? What the hell?

What can I legitimately expect from myself???

What is reasonable with the chronic fatigue syndrome? Obviously normal levels of activity are not, since normal people can work full time jobs without their immune systems shutting down and turning into complete walking zombies. Remember, after I quit it was significant that I smiled at my husband. Smiled. How fucking pathetic is that? I was so exhausted I didn’t even smile at him for over a year, unless maybe occaisionally on a weekend.

On the other hand, it’s not reasonable or legitimate that I just sit on my fat ass at home, doing nothing, resting, because I am fatigued. I should be able to do housework. Pick up. That kind of shit.

I don’t want to. I don’t care. Does it bother me that the house is cluttered? Yes. In 20 years will I look back and regret that? No. Is it worth picking up on my own? Not in the slightest. But it’s not fair to only do it when the hubby is home, since he has a fucking job. And it bothers him.

So how much of me not doing any fucking cleaning is due to me legitimately being fatigued, and how much is due to me plain ol’ not wanting to?

I have no fucking clue.

But it puts me in a fucking impossible place.

Do I just start gung-ho-ing the cleaning and hope I can keep the rest of my health up? Bad if I slide down again. I’m still recovering from working full-time for two years 6 fucking months later.

Do I do nothing and contribute not a goddamn thing to this marriage? Clearly not OK. Mutual partnership != one person making all the money & doing all the cleaning & keeping track of everything & & & & How the fuck can I show my husband he’s important to me when I don’t do the most basic things in a married partnership?

Where in the middle can I fall? I am exhausted and feel shitty. But how much of that is legitimate I-need-to-listen-to-my-body-to-stay-healthy, and how much of that is I just don’t wanna?

I have no fucking clue what standards are reasonable for myself. Is it reasonable to expect myself to do x,y,z, or is that unreasonable due to all the shit that’s fucked up in my brain (and wherever else it’s fucked up since it’s invisible and for CFS no one fucking knows).

I fucking want a missing limb. I want something tangible. I want to be able to say, look, I clearly can’t do that, so I’ll do this. I don’t know how to listen to my fucking invisible disorders. There is no “clearly” about what I can and can’t do.

You always find people saying, “Look, I can do this despite my disability!” Like, “Look, I can run a marathon despite missing a leg!” But you know why that is? They fucking know the limits put on them by their disability. And they can then see how to overcome those limits using available options.

I don’t know what the fucking limits are. I don’t even know if the fucking limits exist. I don’t know if I’m overcoming them, or if I haven’t gotten close to them, or if I’m flat out trying to push myself to do something impossible.

And so far, I have utterly failed at finding any balance. I am exhausted and still feel shitty most of the time. And yet, I am doing jack shit at home to help and bringing in virtually no money. My hubby just got a raise. I am thrilled for him. But the amount his raise increased his annual salary is more than the total amount I make at all my jobs. About double it.

I contribute nothing. I feel like shit. Clearly this is not balance. What the fuck is?


Filed under Invisible Illnesses, Life

2 responses to “Insidious

  1. Read this from my phone yesterday, and couldn’t comment.

    Just wanted to say this whole situation was bullshit and I hate it that you had to go through it.

  2. sigh. ok that last comment was meant for your airport post.

    Now for THIS post I just wanted to offer what support I can. I understand totally what you mean about what is illness and what is just not wanting to in general.
    Doubting yourself, your capablities and your motivations – or lack there of. I’ve absolutely been there.

    : (

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