It’s a Long Way

Drawing of a woman climbing a sheer rock face. Caption reads: "It's a long, challenging journey from a flare to 'normal'."

It’s a Long Way blog post by Iris Carden

In the 20th Century (it’s still weird to write that as the past), AC/DC shared their philosophy: “It’s a long way to the top if you wanna rock’n’roll.”

I’m sure they’re probably right. I wouldn’t know. I haven’t tried being in a rock band.

But I can tell you another thing that’s a long way. It’s a long way from a lupus (or other chronic illness) flare to “normal”. “Normal” is very different from one lupus patient to another, and it’s probably not what a healthy person considers “normal” at all. It’s a unique, personalised, sometimes variable, often vague, concept.

I don’t always notice I’ve reached “normal”, but I often notice when I’m not there.

It doesn’t take a lot to cause a flare. Just one extra thing in a day that requires a bit of extra energy can push me over a very precarious edge.

Then, it’s a long, slow process to work my way back. It can take me weeks to recover from doing a little extra on one day.

I need to rest. I need to be careful to get enough exercise, but not too much. I need to watch what I eat, avoid stuff I know makes me sick, make sure I eat stuff I know helps.

For me, ginger beer helps. It’s probiotic because it’s fermented, and ginger is supposedly an anti-inflammatory spice.

It’s a careful balancing act of trying to get everything exactly right. Of course, even if I do get everything to exactly what has worked before there’s no guarantee. At any time my body might decide to behave in an entirely different, previously unknown, manner.

The picture I drew to illustrate this post was a woman climbing up a sheer cliff face. That’s what it’s like trying to climb out of a flare.

I hang on to what ever lifeline I can find, and be incredibly careful what I do (like a climber choosing the best place to put hands and feet). I know that if I make a mistake, if something goes wrong, I will slip back further than the original flare already took me.

People talk about “chronic illness warriors” and “staying strong” and “fighting the disease”. I admit I’ve fallen into the trap of saying those things at times too. Really, I’ve found that even when I take care to do everything right, there’s no fighting the disease. The medication helps to bring it under some control, but the real challenge is to accept my body even with the weird stuff it does, and learn to live with my limitations. I have to adapt, not to fight my body, but to nurture it, to understand my illness and to live in whatever kind of harmony I can find with it. When I fall into a flare, I need to slowly, carefully, and gently, climb back out of it.

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By Iris Carden

Iris Carden is an Australian indie author, mother, grandmother, and chronic illness patient. On good days, she writes. Because of the unpredictability of her health, she writes on an indie basis, not trying to meet deadlines. She lives on a disability support pension now, but her ultimate dream is to earn her own living from her writing.

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