Tuesday, May 26, 2009


I should be feeling better today. I had a whole three days off, and I did nothing at all. Well, I watched Frost/Nixon, which was good but not great, and Australia, which was awful, and disc 1 of the 50th Anniversary of Perry Mason -- how could it not be great?! -- but I did nothing physical at all. I left the house only to go to the grocery store. Other than that, Emily and I snuggled and slept and lazed around.

So why don't I feel better today?

The truth is that I'm not sleepy tired; I'm sick tired. I don't know how to describe it if you don't know what I'm talking about. Chronic illness tired is a fatigue that can't be slept away. The only relief I get with a day off is that it's a day when I don't have to push myself. There is no amount of sleep that makes it go away.

On work days, I push myself to get going, but once I'm going, I manage okay for the most part. Days when I have to go out are very hard for me. It's not just that I can't eat when I'm out of the house. It's also that the energy it takes to propel myself out the door is so massive, and I have to sustain that energy level until I get home. It's very hard.

I make no week-end plans. I don't go out in the evening. I don't do much that can't be done from home. And I don't feel bored or alone. I just feel exhausted.

I would like to know what it's like to have some energy, to be able to choose to go to a movie rather than watching one in bed, to be able to see friends rather than hanging with just my best friend Emily (the cat). I would like to know what it's like to look forward to anything. I dread everything because just thinking about doing things makes me tired.

I've figured out that, when I'm really depressed, it's usually that I'm really tired. I can predict that this will happen after I travel or after a particularly hard week. But there are times like now when I can't shake it even when I take time to rest. I don't know if it's still hang-over from my trip to Seattle or from the c-diff. I gave myself a B-12 shot recently, so it's not that. My gut is far from anything even I would consider normal, but the frequency is not so bad that I should feel this exhausted. But my friend Denise asked me to meet her on Saturday, and my friend Elaine is trying to schedule a time to get together, and my only thought is that I'm so frigging tired that I don't want to go anywhere, see anybody, do anything.

I'll never be diagnosed with chronic fatigue syndrome. CFS is a diagnosis of exclusion, so since I have Crohn's disease and gastroparesis, I'll never be diagnosed with CFS. And my blood work is pretty good lately. So there's no reason on paper that I should be this tired. But my knees are absolutely agonizing, and my hands aren't a whole lot better, so there's some Crohn's arthritis going on, along with my stool being abnormal (even for me). I guess I should assume that the fatigue is related to my Crohn's. But I don't like that answer because there's nothing I can do about it.

Well, there's an email in my Inbox, a patient looking for help. So I'd better go tend to it. From the neck up, I don't feel too bad. So hopefully, I can fake my way through the day on brains, without regard for the rest of me.

It's just really hard. Jennifer

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