Along the Way @

Gentle Reader,

For years now I have complained of not feeling particularly well. I catch every cold and flu under the sun, and I rarely, if ever, feel anything other than tired. In fact, it’s been years since I’ve known what it is to be rested. It is entirely normal for me to operate at a certain level of exhaustion. Sometimes it’s an accomplishment just to get out of bed and take a shower.

Today I went to the doctor.

Today I was diagnosed with chronic fatigue syndrome.

Today I was informed that there’s little to be done.

Oh, I could try going on an anti-depressant, because some people respond well to a serotonin boost. I could try thyroxin, a thyroid supplement, but that’s not really recommended. I’m supposed to do hard cardio exercise every day. I shake my head at all that. I’m not exhausted because I’m depressed, although I’m on my way to being depressed because I’m exhausted. I know I need to exercise more, but when? How? Sometimes it’s all I can do not to fall asleep at my desk. Or in the car while driving.

And, you know, it doesn’t help that the doctor I saw today was sorely lacking in the compassion department. Okay, fine. You don’t know a lot about this illness or how to treat it. I’m okay with honesty. It just would have been nice if he’d said, “Sorry you feel like crap and you’re going to cycle in and out of this for the rest of your life.” That would have made me feel a little better. Instead I came out of there feeling like he sees me as just a lazy, crazy person.

I’m not lazy. I’m not crazy. I’m tired. Down in the bones, make you feel sick kind of tired. I feel like I haven’t slept for days. I’m having trouble concentrating at work and the short-term memory I once possessed is long gone. I live and die by my calendar; if it doesn’t get written down, it doesn’t exist.

I’ve been reading about CFS on the CDC website. It’s a lifelong thing. Lifelong. I’ve just been diagnosed with an illness that I will have for the rest of my life, barring some miracle or the development of a drug. I can work on managing the symptoms and learn coping strategies, but that’s it. This is forever.

It’s not cancer. I’m not facing immanent death. For the most part, I’m not in any pain. You know what, though? I’m done with trying to minimize how I do feel. I’m sick. I just am. It’s not the type of sickness that is readily seen on the surface. I don’t have a fever and I’m not throwing up. But I’m not healthy.

Do you know what it’s like, to be diagnosed with a chronic illness? My brain can’t even wrap around it. Maybe this is not the kind of news that some people would define as bad, but it’s a blow to me. Can you imagine what it would be like to battle the sort of fatigue that you have after running for a long time, or after extended periods of stress, every day for the rest of your life? To know that, even if you go into remission (and that is the word they use), it’s all just going to come back, without any warning?

You may not think that exhaustion has any kind of impact on your life, but it does. Not only does my natural introversion cause me to need “alone time,” but having no energy means that I miss out on a lot of things. I don’t have people over during the week because I know I have to get up the next day and go to work. If I have a large weekend event to attend, I have to take the following Monday off to recoup. I know that I’ve hurt the feelings of my friends and family because I’ve been unavailable and they have assumed it was a personal thing.

Do you know what is highly recommended for this illness? “Cognitive behavioral therapy.” Counseling. I’m not against counseling in any way, but the implication here is that it’s all in your head. It’s not. IT’S NOT. I only wish it was. That would be easier to deal with.

Can I call into work tired? Is that an acceptable thing to do? Is it wrong to hope that someone might organize meals for me for a week even though I’m not sick in an obvious way? Is it stupid that tears are streaming down my cheeks because I am beyond frustrated? How can you be diagnosed with lifelong tiredness?? It doesn’t even make any sense!

The funniest thing of all is that I’m reading all over the place that I should avoid stress. Really? Isn’t life itself stress? Isn’t it stress-inducing to be told, “Hey, you’re sick, and you’re stuck with it?” Don’t worries arise in knowing that you’re liable to be misunderstood?

Maybe none of this makes sense to you. Maybe you don’t think it’s a big deal. But it’s a big deal to me. It’s a big, fat honking deal.





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