Monday, May 26, 2008

My Mantra

I'm doing better than I was last summer.

That's my mantra. Everyone wants to hear that I'm all better, back to normal, over this mystery illness that has plagued me for nearly a year.

I wish I could tell them what they want to hear. But I can't. Not yet, at least.

My repeated response to questions about how I'm doing: "I'm doing better than I was last summer."

Of course, it wouldn't be hard to be doing much better than I was last summer when I was hospitalized for eight days and then could barely function once I got home.

There were times last summer that I was convinced it had to be easier to die than to live with whatever the hell was the matter with me. (Don't get me wrong -- I was never suicidal or even wishing I'd die. It was just so damn hard to function even at minimal levels.)

My illness has morphed so much since those early days that it's hard for me to believe it's even the same illness.

And I guess in a sense it isn't since the first thing that knocked me on my butt last June was double pneumonia, and then this autoimmune whatever kicked in after the pneumonia was technically gone but I never got better.

But the reasons they admitted me to the hospital last July were primarily my skyrocketing heart rate, which has mostly normalized albeit at a higher-than-previously normal rate, and my blood oxygen rates which plummeted when I was mobile, which doesn't happen any more.

About the only thing that's the same is the chest pain, which after getting my heart checked out repeatedly, we've determined is most likely joint pain in my rib cage. I apparently have fluid in at least one of the joints near my sternum that causes me pain. There's a name for that, but I never remember it.

Oh, and the fatigue. I guess I've had that all along since even before the pneumonia diagnosis.

But all this joint pain -- fingers, wrists, elbows. knees -- I didn't have any of that until a couple months in. And it started slowly, gradually building in intensity and quantity of joints affected.

The acupuncture, which I've dropped back to doing just once a week, seems to help some with my energy levels, which is awesome. But I still get wiped out embarrassingly easily. (At least I can stay awake for an hour-long visit, but I do end up heading to bed for a nap immediately after 60-90 minute playdates when friends bring their kids over to play with Ellie on weekends.)

Some people just assume I must be better by now, although you'd think they would wonder why Ellie is still in full-time daycare if I'm so healthy now. And sometimes I try not to correct their assumption because it gets so boring to talk about my medical issues. It's also kind of nice when new acquaintances don't know about my illness and assume I'm fine and "normal."

I miss being "normal." At least health-wise. :)

So my mantra is for my benefit as well. It helps to remind myself that no matter how small the increment is, there has been some improvement in the year of my illness.

And that gives me hope for the future.

1 comment:

Brittney said...

That is a good mantra to have, and a good outlook.

I understand liking the fact people can't tell right off that you have a chronic illness. It can cause problems in the long run, but man does it feel good to be 'normal,' at least for a little while.