The Lupus wolf at my door
ELLIE NICHOLSON BAUER
Living with an invisible illness
Four years ago I moved to the USA with my 3-year-old and 3-month-old baby.
The morning after we arrived I woke up with a strange pain in the joints of both my thumbs. I didn't think anything of it, after all the packing and lifting suitcases, and gripping steering wheels while trying to remember to drive on the right.
What I didn't know then was it was the beginning of a severe flare up of a disease that had lain mostly dormant in my system my whole life. Systemic Lupus Erythematosus.
Over the following weeks as we found a house and moved in, I continued to convince myself that the pains which spread from my thumb joints, through to all fingers, wrists, elbows and on, were just a normal result of too much physical work lifting boxes and babies.
The crunch came when a new friend in the US explained her disabled parking sticker and every word out of her mouth could have been describing me - this she said was all due to a condition called Lupus.
I finally faced a cold hard reality check and found a doctor, though I think I was still somehow convinced that it couldn't possibly be me.
I have always been so proud of the ease of filling out medical forms, no allergies, no pre-existing conditions, no family history, so how could I suddenly be facing a disease that was permanent and debilitating and quite honestly as scary as the wolf it is named after?
The night before my final diagnosis and the beginning of treatment my husband had to undress me so I could get in a warm bath to try to ease my joints, only to end up siting there crying in pain and absolute frustration because there was no way I could put the pressure on my wrists and hands needed to get myself up and out again.
That was my lowest point and one I will always remember as the time the wolf nearly made it in the door and beat me.
It has been a long road since then, with a huge number of ups and downs.
Lupus is an auto-immune disorder that has no cure and being auto-immune it can affect every part of your body in myriad different ways.
I learnt to wear sunglasses constantly to deal with the light sensitivity, to stay out of the sun to avoid the butterfly rash on my face, and to live with the level of pain on most days (and curse it steadily under my breath on bad days).
I am getting better at taking care of myself because tiredness and stress are guaranteed to trigger a flare.
Most of all I have learnt to enjoy the good days and count my blessings. It was not until the Lupus diagnosis that we found out why I had experienced a terrifying pre-term labour with my second baby at 31 weeks. Apparently Lupus makes all pregnancies high risk and the doctors consider my two healthy boys little miracles - as do I!
The fact that Lupus is a hidden disease is hard - as my friend showed when she felt she had to explain her disabled parking permit, when people can't see a problem they tend to judge.
I remember my son falling over at a playground and crying and the ladies I was with laughing at what they saw as me being precious hobbling over the bark chips in bare feet to get to him. I'm a Kiwi kid, I grew up enjoying barefoot summers, but on that day my hips were full of pain and walking normally, or as quickly as I wanted to, was impossible.
My family have been incredibly supportive and my boys are so proud of being strong men and helping mummy carry things. It makes living with the Wolf forever knocking at your door something I can deal with day by day.
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