Lupus & Me

Lupus has taken its toll on me and my biggest fear is the effect on my brain.  I can feel the cognitive loss- it frustrates and scares me that I now need twice as long to understand simple things.  When I try to explain this loss to my doctors I usually get a look like I don’t know what I’m talking about and the conversation moves on.

One of my medic friends explained to me that if my doctors didn’t know me before then they wouldn’t see the difference because they have no baseline for comparison.  Makes sense.  I understand but it doesn’t lessen the frustration.

I worry though – what else is it doing? I already have bilateral hearing loss from lupus (and icky joints and crazy fatigue and brain fog) and to be honest I do not know how much more I can cope with.

When things went downhill several years ago I made a conscious decision that I had to give The Kids my all.  L was a baby and M was a toddler so what else could I do?  It was the right choice.

But is it still the right choice?

The Kids are now 8yo and 10yo and my life revolves around them.  I am proud to say they are both confident individuals who have great instincts and show amazing compassion and empathy and have an understanding of the greater world around them, but I really need some ME time.

Don’t get me wrong. I love being with The Kids and I learn so much from them but I feel like I am suffocating.  So why am I home educating?  School would give me a lot of time and space absolutely but it would not be the right choice for The Kids.  Not yet anyway.

So much of the old me is gone – not because of The Kids but because this illness has taken a large part of me away.  My clothes and shoes no longer feel right- I feel like I’m playing dress-up and everyone can see I am a fraud.

My wardrobe now consists of tracksuit bottoms, jeans, various colours of the same tops and several cardigans and scarves.  It is a sadly accurate reflection of me.  I look at all the lovely clothes in the stores and online and gaze longingly at the gorgeous shoes out there but they are no good for me.  I don’t go anywhere and dressing up to sit in bed or stay at home really isn’t me.

How can I figure out who I am again?

(Answers on a postcard to






2 thoughts on “Lupus & Me”

  1. I want to believe this ‘reads’ sadder than the real situation though I’ve seen your (physical) struggles. In spite of all that Lupus throws at you, your momma skills and selflessness remain incredible. Re me time, would a live-in assistant (such as an aupair) help? Not sure about now but they used to be very affordable. Also, wondering if the free online courses (for cognitive stimulation) would help. Once in a while, I do something with Future Learn. Sending heaps of love your way xx


    1. Thank you. 😊

      We used to have a live in assistant but it started feeling very crowded at home and became uncomfortable. I love FutureLearn but I never manage to have the extra energy to actually follow through on a course. I’ve been trying to read more and joined a parenting course as well as the online conference – there’s a lot of science and psychology so it has definitely made me think.



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