We're starting to get some of the preliminary data from our chronic illness survey (and if you haven't taken it, PLEASE do -- there's a version for patients and a version for caregivers). It's no surprise to me that people are saying that their major obstacle is fatigue.
I know my most major obstacle is fatigue. I traveled to Atlanta this week-end and spoke to a wonderful group of families who have a child with inflammatory bowel disease. I talked about school law, family and medical leave, and health insurance. For the first time in my life, I got wheel-chaired around the airport (I have Crohn's-related arthritis in my knees, a problem with my lower back that's made my right leg both numb and painful at the same time, like pins and needles). The Atlanta airport is huge, so although I don't like to admit that I need help, I did this time.
Due to my gastroparesis, I pretty much don't eat when I'm going to be traveling. This time, I ate my usual breakfast on Friday morning at home at about 7 am, and then I ate breakfast on Saturday morning at my hotel at about 6 am, and that's what I ate for the two days (good for my diet!). So that contributes to my fatigue.
And I gave 2 talks, 40 minutes each. And then took questions, and hung around to talk to parents who wanted to talk about their individual circumstances. By the time I was finished, my knees, ankles and feet were throbbing, and I was really fried.
I got home at about 10 pm on Saturday night. By the time I unpacked and got organized, it was about midnight when I went to bed. I stayed in bed until Monday morning. That should have been a good rest, eh?
I'm so tired I could cry. My Crohn's is acting up a bit, but not terribly. I am disadvantaged this week because I have a wound on my hip (not sure how I got it), so the doctor said I can't swim because I can't take a chance of it getting infected. I know swimming helps my energy level. But no matter what, when I have a week-end like that when I have an extra long day on Friday (I didn't get to my hotel until 10 pm) and Saturday (6 am to 10 pm), I don't bounce back so easily.
Basically, I can work because I do absolutely nothing else. I go to bed early and I spend my week-ends in bed. Even though I don't sleep a lot of hours, I do rest. And when I don't, I pay. So today, I've already gone to the bathroom too many times. My knees are killing me. My leg is numb. And I have a migraine "aura" (like you're seeing through a pool of water). I'm trying to work, but I really feel like I belong in bed. And it's only Wednesday.
People don't get how exhausting chronic illness is. You can't really see fatigue (unless you count the rings under my eyes). It doesn't show up on blood tests or anything. I can't prove it. But I know that, when I talk to patients, they always stress how tired they are. It's not sleepy tired -- it's bone tired. I wrote a book called Friday Tired -- so tired that every day feels like Friday. And I sure do wish Friday would come.
On days like today, I don't know how to be the person upon whom everybody else relies. Somehow, I manage to get through the day, but the effort is tremendous. By Friday night, I'll be a basket case. And while other people are out all week-end looking at Fall foliage, shopping, seeing friends, Emily (the cat) and I will lie in bed watching crappy TV or crappy movies, sleeping as much as possible, and trying to figure out how to avoid Monday.
I don't know anybody with a chronic illness who doesn't get this. And I don't know too many people who don't have chronic illnesses who do. Jennifer