Happy Anniversary Wolfie!

The thing about writing a blog is that i don't. Or at least not very often. And unlike other activities i also don't do much (like ironing or going to the gym) i always know exactly how long i've not been doing it for. Each time i check in here i see how long it is since i last wrote anything, i end up feeling vaguely silly and run away. Months pass...

September is the cruellest month. It's the month Summer ends, sometimes slowly, but always inevitably ceding to Autumn. It is the month my children go back to school and we all pick up the threads of our lives, after that close and precious holiday time. To me September has an ache of melancholy to it. Once i've let go of Summer i can enjoy Autumn but the letting go, of our family time, of my children and of long, warm, lazy days is hard.

On the positive side September is the 'start' of the year for those of us still dominated by the academic year. It is the time of fresh starts and new beginnings. A few years ago i decided not to make New Year's resolutions any more (you can guess why) but Autumn seems a good time to plan my year and look ahead a bit, and to make a few decisions about how i want the next year to be. So that's what i spent September doing and now here comes dear old October.

It is almost exactly a year since i was diagnosed with Lupus. The list of things i haven't done or have missed is long - projects lie unfinished, blog unwritten, photography 365 project shamefully uncompleted, novel still just scraps of ideas in a tatty notebook. I've spent days in bed or on the sofa, missed parties and get togethers, had weeks off work and struggled to find the energy to do anything at all at times.

Yet when i look back at this year i'm surprised at how much i've achieved and at what a great year i've had. I've completed one big project, held a successful Open House, did my art course and produced my best work so far for the end of year show, and made sales of both my photographs and drawings.

My consultant said to me this time last year "Give yourself a year to accept and cope with this disease" and she was right. It has taken me this long to accept it and begin to manage it effectively. I now know i will have about one awful week to two better weeks, and my drugs are still helping me to improve. It's not bad. Not bad at all. I can get enough done in my two ok weeks to see me through my bad week. And i'm working on ways to enjoy the 'bad' week more too. The photograph above shows my bedroom window, which i love to look out of when i'm poorly. It's good to lie there and think how lucky i am to have such a great view, always changing with the seasons and reminding me the world is there for me to step back into when i fell better.

Looking ahead i feel only optimism. This must have been one of the toughest years of my life and it was brilliant! Next year can only get better... Happy Anniversary Wolfie.

p.s. Sorry for banging on about Lupus but October is Lupus Awareness Month, so i feel i ought to mention it. Next entry will be disease free :)

Dancing with Wolf

illustration by Miranda Vincent

There is a new man in my life. He is a Wolf, he is mean, hurtful and dominant. He has been here for over a year, his name is Lupus. At first no-one recognised him, so it was worth getting that second opinion at the hospital, the one where the consultant said the 'L' word and told me his name. I think i already knew, i'd felt his claws gripping my limbs and felt his breath on the back of my neck whenever i tried to do something and found myself too tired or in too much pain. But now i know. Sort of... it may take a couple of years to get a firm clinical diagnosis, but it's highly likely Lupus is the name of my new companion.

The thing is i am very lucky. Some people with this disease are so ill, i have only a mild form. Yet still the Wolf tries to make me change my life. I have to miss parties and events i am too ill for, at times it takes all my effort just to get up. My trainers gather dust as i cannot run. Sometimes it hurts to hold my camera. I'm a photographer but i can no longer do weddings as i can't work more than half a day. At my lowest point it took all my concentration to remember how to swallow. What should have become an automatic response became an effort of will. It was terrifying and I lost my appetite for a while. It's fine, i can still manage about 60% of my life ok. Some days i feel ok. So i am grateful for that. I am not dying, i am not disabled.

It's the little things that get me sometimes. Who would have thought you'd miss painting ceilings, nit-combing your daughter's hair (a vile job but i get tearful when my fingers ache too much to hold the comb) emptying the bin and lifting heavy things like the recycling? Yet i do... the frustration at not being able to do those things is huge. I feel so pathetic. In those moments the Wolf has won and i loathe him.

So i am refusing to dance to his tune. His teeth may be sinking into my joints 24 hours a day, 7 days a week, and he may make me poorly at times, but i shall not let him force me to give up. There is a whole new me he doesn't know about. I am finding new ways to live that he cannot prevent me from enjoying. Sometimes i find myself filled with a new intense joy springing from a heightened appreciation of all that i can still do. Now i am living a different life but i take delight in planning it. Do we not all moan we are too busy with no time for quiet reflection, for rest, never enough time? Not my problem any more. I have time enough now that the Wolf drags me to my bed in the afternoons. I am redesigning my life and it will be better than before. I have time to write, think, read, draw, rest, i can even watch a film in the middle of that day if i want to! Such decadence!

I wrote to a friend of mine that i was thinking of buying a chaise longue and some seriously glamourous lounge wear so i can recline decoratively and receive visitors, or maybe dictate a novel to a handsome young literature student (if you know one please send him to me). Perhaps i can even start other decadent horizontal pursuits like smoking opium or embroidery, really the world is my oyster. Wolfie cannot stop any of that. I shall take rest to new and glamourous heights.

When i wake up in the morning, often tired from a painful night, i stretch and feel the Wolf's teeth sink into my elbows, wrists, knees and ankles. Every little joint in my hands complains as i walk slowly and painfully to the bathroom flexing them. But i am smiling. He thinks he will make me dance a sad little dance of defeat but i am not this body. My breath, mind, heart, joy, love, family, friends, photographs, words and memories are all beyond his reach. The birdsong in the garden calls me to the day, my day. Behind me lurks the Wolf, but i shall surprise him by turning to him and reaching out to welcome him. Then he will have very little power at all.