I was diagnosed a while ago with UCTD with Lupus traits. I was inspired to write this short story by a post I read on here. I'm sure some of you will relate to parts of it. Enjoy.
The Woman Behind the Scarf An unseasonably warm February has allowed tall shoots of green to appear in the borders, causing my heart to sink. These are not crocus, but daffodils, which have been roused from the frozen ground by a warm sun promising to nurture. No, the daffodils do not look lovely today. It’s dangerous for me to venture out from these four walls, but today I decide it’s worth the risk. Under cover of a black scarf, I listen to people extolling the virtues of an early Spring, how it lifts the spirits and how they love to see the colours of the crocus, how the daffodils seem to be making their entrance earlier each year, global warming, blah, blah, blah. For most, a walk in the promise of the first burst of Spring is a pleasure, for me it emphasises my isolation, the feeling that I don’t belong. The delicate white tears of snowdrops mock me and the sun threatens me with its fingers of warmth, trying to tempt me out from the prison of my garments. The sun emerges further from its blanket of grey, warming the air and brightening moods. The optimism is almost tangible and it settles around me, changing the chatter from brief nods of ‘morning’, to ‘lovely day, isn’t it?’ Nobody looks my way and if they do, they quickly look away, but not before the confusion has registered. Not everyone is polite. A young girl, talking on her I-phone, oblivious to the beauty of this day and the freedoms of her youth, casts me a look that could kill. A child, bless their direct candour, asks his mum why the lady is wearing a scarf around her head when it’s sunny. She pulls him away and carries on with his education about nature, not offering any explanation, whether accurate or not about my scarf. An older couple cling to each other as they pass, nodding disapprovingly. I know what they’re thinking. I can almost see the thread of connections passing before their misinformed eyes, all stemming from the scarf. I tilt my face upwards in response to the cheerful twittering of a bird, hidden somewhere in the branches; I know how it feels to hide away when your singing voice is trying to break free. The warmth on my face reminds me to cover up. I pull the scarf higher and lower so that only my eyes are visible. I watch as a blackbird swoops along the edge of the path, trying to catch its ‘mate’. New life is happening all around me whilst mine is being stifled by strictures I must follow. It’s time to go back now, I’ve reached the end of my allotted time. Reluctant limbs, resisting the trauma of the walk, carry me home. My home is cold and unwelcoming, in contrast to the warmth, the promise and the beauty of a Spring morning. Every day is the same when your clothes and the rooms you move through have become your prison, when your body wants to dance, but it’s shackled. I’m ashamed to take the pills, I resisted them for a long time, but they help to get me through. I sit at the table and fire up my laptop, ready to enter a community I can at least engage in. I ‘chat’ with my online friends and I feel more human, more accepted. We talk about the troubles and difficulties of coping in a world in which we can’t fully participate. We have a shared experience and I feel better knowing there are others like me. The mornings, although often cooped up in one room are not too bad, but as the afternoon marches too-quickly towards evening, I start to shift in my seat and the sinking feeling descends. Yes, I dread my husband coming home. The palpitations start as soon as the creak of his hand-break rings through this stagnant air and the sound of his engine stops. The quick patter of panic beats under the tightness of a ribcage straining to keep everything in. I realise how difficult this is for the average person to understand. I realise how weak it makes me look, how much I’m wasting my life by wishing it away, wishing for morning to come, but it hasn’t always been this way. In a life that seems so far away, I was once a carefree girl who moved through the world with an air of confidence and belonging. I skipped through dusty streets, revelling in the joy of friendship and play, swinging my shining locks and laughing up at the fire in the sky, screwing my eyes up tight, heeding my mother’s warning never to look directly at the sun. We played tirelessly in streets that were safe, running down alleyways, kicking stones and accepting sweets and indulgent words from the older ones who sat on steps and watched us, smiling ruefully for their own lost youth. I transitioned easily through childhood and adolescence, to adulthood, accepting each challenge with an easy competence, borne of being loved. I was ‘a classic beauty’, with the lustrous hair, the sparkling eyes and the soft skin of youth. I was admired. My friends would nudge me as we walked past boys in college. ‘See the way he looked at you?’ I would pretend not to notice and we would hurry along to our next class, our giggles ringing out. We grew into young women with limitless options, bright futures and brighter smiles. We chose to have careers or we chose to follow artistic dreams, but the point is; we chose. We crossed the border, no, we bounded through the border between youth and adulthood with contagious optimism. Eventually, a suitor was sought and found, a suitor who quickly became a husband. That’s when it started. It was subtle at first, just the odd niggle, a sign of things to come. I ignored it, tried to carry on as normal, as if nothing was happening. Then it got gradually worse, as these things do and I could no longer pretend. I knew I needed help. One word changed my life that day. The mystery of the rashes, the crippling pain and the fatigue all came down to that one little word. Lupus. The beautiful sun which used to bathe me in feel-good warmth, became my enemy. Scarves, gloves and long sleeves became the things that would bind me, but protect me. A new regime of pills, potions and poking around for my poxy blood was something I ‘had to get used to’. My husband, of course, was and continues to be my rock. It’s just difficult to think of things to say when every day is the same. He’s full of stories and I have nothing to tell. The pain and the medication has changed me. It’s taken away his lover and his talk buddy. I fling back the curtains on a new day. Such are the vagaries of British weather; a light dusting of snow has settled on the lawn. In the borders, the bright yellows and purples of the crocus look incongruous. Tall daffodils, their flowers holding back for the real Spring, sway in the Winter chill. The snowdrop tears hang delicately amid the vivid greenery which contrasts with the stark white of the snow. No sign of the sun. It’s a beautiful day for me. I shuffle around, gathering garments. It takes me a while, but eventually I’m ready to safely go where no one else really wants to go; into this dull, nondescript day, this tail-end of Winter, this bitter cold which has shocked us back to reality. In the hallway, the scarf sits in a crumpled mess, kicked aside by yesterday’s frustration. I pick it up. Today it’s my friend; it will hang around my neck, keeping out any stray flurries and keeping me warm. The path looks stunning, a ribbon of white leading to an arch in the distance, the bare branches forming a skeletal canopy overhead. I’m alone, which is just as well as, like a child, I am catching snowflakes on my tongue. I open my arms wide and shuffle around on the spot, happy to be free, happy to be able to open my eyes and look directly up to the sky. Further down the path, I pass the girl with the I-phone. She smiles, removes her earphones and says something about being a big kid herself when it comes to the snow. I wrap the scarf around my head to remind her of who I am. The shock registers and I giggle under the cover of my garment. She stuffs the earphones back and quickly shuffles on. I unravel the scarf and wave it joyously in the air. She must think me so rude or so mad. I’m neither for most of the time, occasionally I’m both.
Lupus and a holiday? 
Lupus or not lupus?... That is the question...
If this isn't lupus, I don't know what is
