Friday, August 1, 2008


It’s interesting… In Laurie Edwards’ book, “Life Disrupted” (full post about the book coming soon), she talks about “reentry” from the hospital ward to “the real world” as “transitioning”. I think the term is fitting in my case, too, even though I haven’t been in the hospital. Going from sick to healthy and healthy to sick, is literally becoming a different person.

I know that in a lot of ways, the person I am when I’m in a flare is a lot different than the person I am when I’m not. I also know that I rely on different sets of people during such times. Luckily, I have some people that are there through it all. But when I’m sick, I feel more deeply connected to others I know that are chronically ill.

Currently, and I don’t want to jinx myself here, I’m feeling the best I’ve felt in a while. And in some ways, I feel slightly disconnected from the chronically ill group, dare I say guilty. On the other hand, I am embracing this moment of renewed, at least better, health, because I don’t know how long it is going to last.

Definitely, I’m not so worried about not fitting in to the chronic illness community, because for most people, the severity of their diseases comes and goes. It is the healthy world that I worry about. Once labeled “sick,” it becomes a hard distinction to drop.

And so for me, it is those everyday changes, that even when I feeling well, remain. It’s mostly the things that happen behind closed doors, that others do not see, that remind me that I am not like everyone is. And difference isn’t necessarily a bad thing… it’s just different.

I don’t think I ever expected to be in the position to feel that being healthy, or at least healthier than a few months ago, would be difficult. But for me, it has been. I think the hardest thing for me is that suddenly “healthy” doesn’t mean suddenly “cured”. Healthy and cured are two very different things.

The past two weeks have been crazy. And it’s my own fault. My renewed health, which should be read as my diminished pain, has led me to believe, falsely, that I could do everything and more. I’ve felt like everyone has wanted a piece of me, and I gave no thought to the repercussions of giving freely of myself. It was only today, finally, that I began begging out of things. Only after being hit with that insurmountable fatigue and falling asleep at work did I bother to realize that I can’t do everything I used to and continue to be healthy.

It’s true that the fatigue actually hit a few days ago. I just hoped I could hold out for a little longer. Not… so…

It was easy to see this when I was feeling bad. Then, feeling well again gives the false sense that, along with a renewed sense of hope, everything else is renewed, too. I’m the type of person who believes that if I feel well, I should be doing all that I can.

And it’s far easier than I ever imagined to fall into my old ways of doing too much, having every moment spoken for… and kicking myself for it afterwards, when I’m too exhausted to think.

It’s still hard for me to admit that my old ways don’t work anymore. They are toxic, and albeit, possibly part of the problem.

1 comment:

  1. Still catching up on your blog posts... :)

    This post really resonates with me. I have the same assumptions (and guilt) when I'm having a good day. It's taken a long time to accept that even when I'm feeling well, I have to monitor my activities just as much (if not more) than when I'm feeling sick. Overdoing it will land me back on the couch, miserable, and I will regret whatever it was that landed me there.

    For me, it's a daily acceptance of my limits and abilities. It's hard, really hard, to accept this, and some days are better than others.

    Hang in there. We can make it through, all of us, together.