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A Researcher Gets A Taste Of Chronic Illness

I have just a couple of thoughts today that I offer to the reader not for sympathy but, rather, for scientific observation and reflection.

I’ve been dealing with a case of bronchitis that became pneumonia. I tried to teach through it, do grant reviews, finish a book chapter, etc. but was finally ordered by my pulmonologist to recuperative bedrest at home for approximately four weeks.

When told I’d be confined to bed for a month, I thought that it would be great – that I’d get two papers and a grant renewal done and still have plenty of time for blog posts I’ve been wanting to get to, finish writing a couple of songs to take to the studio, get all the tax documents together, maybe learn a little CSS and webpage design and get around to a hosted personal website for the domain I’ve had for a year, etc.

After 10 days now, I’ve really done nothing more than read for short periods and sleep for long periods, with energy only for one blog post, a paragraph or two on a paper, and arranging for my classes to be taught. Twitter works, though, as 140 characters is about the limit. To be really sick – to the point of not being able to concentrate for more than 10 min – is a foreign concept. And I’m not actually *really* sick like other folks with chronic illnesses, cancer, etc.

To be unable to make your body do what you want it to is frustrating enough, especially when your little girl wants to go play in an infrequent snowfall of significance.

But I find it remarkable that an illness having nothing to do with the CNS can wreak such havoc on cognition, concentration, and motivation.

Some people might think, “wow, you’ve had 10 days to do *anything* you want,” but it blows me away that 10 days have passed and I’ve done jack sh*t.

So today, my heart goes out to all of those who suffer with chronic illnesses every day. You have my admiration and respect.

*This blog post was originally published at Terra Sigillata*


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One Response to “A Researcher Gets A Taste Of Chronic Illness”

  1. liz4cps says:

    Thanks for writing this! It’s hard when you have a chronic illness to know what is reasonable to expect — and some days we are able to do more than other days. The unpredictability makes it harder — I often think I’ll do something when I’m not so tired but “not so tired” time is in short supply.

    You wind up doing what you can and getting help with what you can’t — and letting some things go. Adjusting to the new normal is hard. People often think you’re just being lazy — and even doctors sometimes say it’s all in our heads. How do you go to the doctor and say you’re tired? Everyone’s “tired”!

    It would help If you came out and said it when you can’t help us. I kept thinking the doctor wasn’t understanding what I was saying — maybe if I could find the right words or described enough symptoms, he could figure it out? I had a series of embarrassingly emotional appointments where I was hoping and trying not to hope for a solution. When it finally dawned on me that the doctor just wasn’t saying that he couldn’t help, I stopped hoping and the appointments got better — I also switched doctors. “Chronically ill” means you don’t have a good answer — please just say that!

    As an aside, the other thing that happened when I described symptoms that I thought might help shed light on my tiredness, the doctor would take it as a todo list. When he would say, take this med for such and such, I would think, that must be more serious than I thought. What I was trying to do was give him the big picture for the ongoing problems — maybe this symptom (which I wasn’t worried about by itself) would shed light on the rest?

    Which translated means: That you know what’s wrong and that you should recover in a month is a huge blessing.

    For those of us with no end in sight? We learn to trust God to help us and guide us thru this time. We also argue with Him, too. Setbacks are hard. Planning is hard. We take it day by day with lots of prayer and support from others dealing with similar things. Online communities are especially helpful — especially for those who are homebound or nearly so. Mine is Peace in Chronic Illness (www.peaceici.net).

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