Monday, April 6, 2009


Chronic illness has an unfortunate path- there are often relapses caused by being on incorrect dosages of medication, the wrong medications, or even at the edge of healing. You may feel as though you are taking the cliched two steps forward and three steps back. For a sweet moment there was a glimpse of what it would be like to feel "normal" and then- everything that you were fighting and sometimes even more comes back with a vengeance.

With genetic disorders and syndromes it's hard to gauge when a flare up will return. First you are battling your body's own make up. It only knows the genetics and chemicals, hormones and functions that it has- and nothing more. When a new chemical or hormone is introduced, sometimes the body will approve of the change- and get well. But, there are many times that the body decides your options aren't the correct ones. And that's when you are stuck dealing with that reaction.

Over the last few months, my body has determined that it will fight my attempts at finding "healthy" by thwarted the purpose of the medications I've taken. First it started with the sleeping medications - and I spent nights upon nights wide eyed, watching sunrises, and hoping that a nap would suffice. Next came the uprising against my pain medications, and I have been battling a variety of new options in attempt to at least get down to a "7" on that smiley faced scale. Finally, the hormones that have devoured my thyroid gland, and brought me from a size 3/4 to a size 12, are working to defeat the synthetic replacments that are startign to show signs of working.

The last ten days have been a greater struggle than the last ten years. The wheelchair is starting to get closer to the door, and I'm struggling with the idea that I'm losing my ability to maintain much physicality. The left hand swells up, then the bruises appear, and next thing that I know- I'm back on the couch hoping the clock will just shush for five minutes as I attempt to not migraine. I find that standing is painful, and when I drive, my back ends up with welts and large bruises because the bones shift and bang into each other. Sitting upright is just impossible.

Of course, I can't imagine telling my husband this over and over. He's the emperor of patience and begs me to tell him what's wrong, as a good man should. But I hate hearing it as much as I hate saying it. I hate admitting that I'm failing at getting better. I hate admitting that no matter how many new medications, new treatments, new options, or new doctors I try- the genetics have a one-track mind.

There are days when I get why people commit suicide over illness. I've lost friends and family members to that disease- and can't see it as an option for myself. But there are days when I wonder why I wake up if I know there isn't anything but pain. Tonight, there was an episode of House, MD, where a key character commits suicide- without explanation. Suicide doesn't offer any explanations, and it never will- the choice of death over pain is an option for some people. I'm not one of them.

Is there ever an escape from chronic pain, chronic illness, and chronic doctor visits? We can create inner escapes which help for at least moments. For me, spending time with my pets seems to erase moments of pain. A friend of mine has a daughter with whom she can finger paint and read stories- and then her illness is gone for those moments. It's those moments- the ones that make us feel human- that help the relapses, help the lingering illnesses. We aren't cured, but we're in a moment that isn't marred by pain and being sick.

Today's questions- What can we do to get through relapses? What have you found to help when you're in between doctors' visits and can't quite get through your illness? Have you bounced back from an illness long term, only to be surprised by its return?

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