Thursday, June 24, 2010


When you live your life with a chronic illness you often find yourself fighting battles of different intensities from one day to the next. A lot of “healthy” people often assume that it is the big battles that are the hardest – the long hospitalizations, the flare-ups, surgeries – yet those fights can be relatively easy. In big battles you end up putting all your energy into trying to survive and you know the cost of defeat from the beginning. I find that it is the little battles I struggle most with – day to day living with pain, fatigue, taking new medications (with new side effects), limitations, sun exposure...the list can be quite endless if you spend too much time thinking about it.

My latest Sisyphean challenge involves a new medication that I have recently started taking because my kidneys are refusing to cooperate fully with their natural filtration process. I did give my kidneys a stern talking to, but unlike me they seem to be stuck in a perpetual teenaged state of defiance. This drug can encompass a host of side-effects, some of which I have already enjoyed in just a week of my daily dose. It started with headaches for the first four days (which have thankfully waned, as the drug brochure promised), and has now erupted into waves of extreme fatigue, frequent bruising, and some additional joint pain (honestly, one can never have enough joint pain). I am now also more prone to infection and contracting common ailments. The icing on this side effect cake is that I will have to take blood tests every few weeks to make sure the medication isn’t causing more extreme bodily harm.

Basically, I went from someone who was feeling relatively healthy, with lots of energy and hardly any pain to someone who is constantly tired and in pain – all to fix a small problem with my kidneys. I once again managed to push that rock all the way to the top of the hill, only to have it tumble back down. The Greeks never realized how much their mythical punishments mimicked real life. Or maybe they did. The only difference is I know this isn’t a punishment, it is just the way things are for anyone who fights a chronic illness.

So I fight this small battle like I have fought numerous ones before and no doubt will in the future. I will come out the victor, of that I am certain. And if I am lucky, I will have a moment to sit on my rock and listen to Orpheus’ beautiful song before the battle starts all over again.


elizabeth mueller said...

((Hugs)) I hope you get feeling well. I'll keep you in my prayers...


Anonymous said...

I'm sorry to hear that you're suffering. I wish there was something I could say or do which would help but we know that is not the case.

There is a woman at work who has Lupus and thanks to you making me aware of it, we're able to talk about it and she shares her ups and her downs with it.

Before reading your blog, I knew nothing at all about it.

melusina said...

Thank you Elizabeth.

ED, thank you. I am so glad you can be supportive of your co-worker, I'm sure she is glad that there is at least one person who knows about lupus.

For a long time I wasn't comfortable posting about having lupus, mainly because it seemed really convenient to be "normal" in my online persona. But then I realized it was a good way to promote awareness and that I shouldn't be ashamed of it - it is who I am. I might as well talk about it so people who don't know much about it can have some understanding of what it is like.

PeacefulBlueIris said...

Funny, I've often referred to myself as Sisyphus. Not for health reasons, but because more often than not I find myself dog paddling in tsunamis.

Glad to have found your blog Melusina! Let the boulders roll!

Blender Diet said...

I admire your courage and your will to fight your battle. Your positive outlook no doubt helps. Thank you for sharing.

Infindecimal slice said...

Melusina, I have never met you, but my thoughts are with you, get better soon!