Saturday, February 28, 2015

Good days, bad days, in-between days

Living with a chronic illness means you have good days, bad days and, what I call, in-between days. You'll never get better, not really. So, you learn to manage your disease, put on a brave face and get through each day the best way you can.

Today was… not bad but an "in-between" day. I started the day not so bad. Felt decent, but tired…even after a full night's sleep. I had pie for breakfast (what could possibly be better?) and had coffee with some neighbors.

Then it hit me. Headache, pain and MASSIVE fatigue. That kind of fatigue that just makes any small task feel monumental. My kids watched something like three movies back to back today while I drifted in an out of a pretty sound sleep on the couch. I actually even put my potty trained 2 year old in a pull up today because I just didn't want to deal with any accidents she might have. 

The fatigue was so incredibly overwhelming that I couldn't even fathom making dinner for anyone. One child had a yogurt, one had cheese, crackers and pepperoni. Neither of those things is dinner and I had been doing so well getting a healthy balanced dinner on that table every night this week. I was supposed to have gone out with the kids in the evening but the thought of packing them into the car and going out seemed like climbing a mountain. I wish that was an exaggeration.

And when my husband got home and saw how I was, he ordered us pizza for dinner. I gave up fast food and pizza for lent but I just couldn't even fathom making anything and, since I had eaten next to nothing all day, I gave in. FAIL all around today.

Fatigue days for me are almost worse than pain days in some ways. Pain I can deal with, I can work through it. I've done it my whole life. Fatigue… that's a whole different beast. You see, one of the hardest things about chronic illness is the fatigue. Fatigue isn’t being tired. It’s an exhaustion that is bone deep, a feeling that your body is giving up on you. It’s feeling that every fiber of your being is suddenly being affected by gravity more than anything else. I wake up most mornings with my head filled with ideas, plans and lists of things to do that day. In my head I am powerful and could rule the world!!! But no one told my body that. The head is willing but the body is failing.

The psychological implications of this are feelings of failure, guilt and disappointment. I worry that people think I’m lazy, that I look ok physically so why am I in bed? I worry that others will see me smiling in a photo on Facebook and then wonder why I’m saying that I’m physically exhausted and struggling. I feel guilty that the lives of my family, some days hell, most days, revolve around my illness.

Like today.

And now, it's almost 1am and I am awake. Awake with nausea, some pain and oddly enough the fatigue. Tomorrow will be a new day. Let's hope it's a good day :)

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