Wednesday, 15 July 2009

Troubled Waters

Well it was bound to happen, it is sod’s law. After all this talk of keeping on top of things and having had a very good run, the lupus has paid another notable visit. Mouth ulcers, a rash on my hands and a patchy crimson upper-lip rash (ironically rather like the one I mentioned in my previous entry!), are all some of the visible manifestations of this flare, some of which can be seen in the accompanying picture.

But, like usual, it’s the things that can’t be seen that are really bothering me. Symptom-wise it’s the fuzzy head, aches and pains and the sense of being distant from the real world, and an insatiable fatigue that any amount of sleep or rest can’t touch.

But even worse than these are the emotions and worries that accompany this kind of flare, the kind that mainly gnaw away in the depths of the night: all the ‘what if’s’ and the ‘flashback’ memories of scary lupus scenes gone by, and the disturbing imagined forthcoming outcome scenarios and the feelings of ‘not again’ and ‘why now?’. And then there is the lupus loneliness; the loneliness of not wanting to bother or worry your loved ones again, and knowing that it is impossible for most of those around you to fully ‘get’ how it feels. There is also the feeling that without ever questioning the steadfastness and depth of his absolute love, my husband in spite of himself, likes me less when I’m in the depths of a flare and I don’t blame him, it’s no wonder, because I like me less. When I’m like this I am a nightmare to live with. I am low, snappy and sad and totally preoccupied with being ill – not exactly a bundle of laughs.

Don’t get me wrong. I have sufficiently good self esteem to recognise that all the inner negativity described above is just ‘flare talk’. A deeper and far wiser part of me knows that that this depressive (and probably not entirely accurate) outlook is a symptom of the illness. Moments of weakness and fear are what make us human. Nonetheless, I believe is important to acknowledge and accept such thoughts and feelings ... and then just let them go. This is core to yoga philosophy, something that studying has helped me enormously. Now morning has arrived, the darkness has passed, although the physical symptoms remain, my attitude has changed and inevitably a clearer, more realistic perspective has come. Phew!

So what can we learn from this? The key to being the master of lupus is to be the master of your mind.


Manic Mom said...

I am wishing we lived next door to eachother. You are taking the words from my mouth. How is that, that you feel the way I feel? we are Lupus Sisters for sure, that's why. I get so scared too, my mind races & the pain is always there like an old living room rug that your Mother in law gave you as a wedding gift. And you have hated it from the momment you unwrapped it. But, it's there, always there in your face. I hope to get to know you more, Maybe we can get through Lupus together. My name is Sheila. :-)

Daisy Seale-Barnes said...

Hi Sheila

Hey, it's great to finally find some 'lupus sisters' after feeling alone as I did for so long. If only I'd known you were out there during some of those darker times! Still, you are here now so keep in touch and we can help each other through.

PS Really like your 'living room rug' analogy - think it'd be a good one to use when trying to explain to friends how it is

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