Lupus, a short story: I was diagnosed a while ago... - LUPUS UK

LUPUS UK

32,210 members28,555 posts

Lupus, a short story

kyliesinead profile image
15 Replies

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.

Written by
kyliesinead profile image
kyliesinead
To view profiles and participate in discussions please or .
15 Replies
whisperit profile image
whisperit

Great, kyliesinead! Your condition hasn't killed your creativity or insight. What a privilege to come to this forum and find your post - and on other days too - so many creative responses to our predicament. I do hope you will keep writing, and posting here. Thank you x

kyliesinead profile image
kyliesinead in reply towhisperit

Thank you! I love to write and go regularly to a group to hone my craft. I'm so glad you enjoyed the story.

pixiewixie profile image
pixiewixie

kyliesinead what an amazing talent you have, I really enjoyed your story. Also I could empathise with the lady & the scarf, actually I could easily place myself in your story. I am so glad you finished it with a giggle. Thank you for sharing your work & talent! Very Best Wishes Pixiewixie xx

kyliesinead profile image
kyliesinead

Hey Pixiewixie, thank you for your kind words. I think humour is important when dealing with illness. It has certainly got me through some tough times. I'm glad you enjoyed the story and could relate to it. I enjoyed writing it. I was trying to get over that sense of feeling invisible, whether because of illness, depression, cultural or racial differences or a mix of all of the above. It's good to know there are others in the same situation. I've recently finished my first novel so I'm experimenting with short stories and poetry. Your comments mean a lot, thanks.

pixiewixie profile image
pixiewixie

Well done to you Kyliesinead. What an accomplishment. Did you enjoy writing your novel? I am looking forward to the publication! I can understand your feelings of being invisible & to what factors might have contributed to this. I think so many of us with chronic illness can identify with some aspects of feeling invisible. I was thinking about this myself lately & I have realised because of how I view my life situation that I often cloak myself in invisibility. Perhaps this is my way of self protection ... or ... am I copying the magnificent ostrich? Anyway you take care, xx Pixiewixie.

kyliesinead profile image
kyliesinead

Yes I did enjoy writing the novel but I'm glad it's done. For me, there's a degree of not wanting to draw attention to this condition then I can pretend I'm normal. I think, therefore I am. The mind is a powerful.

kyliesinead profile image
kyliesinead

The mind is a powerful tool.

Kevin53 profile image
Kevin53

Would you allow us to publish this in News and Views? Best wishes Kevin

kyliesinead profile image
kyliesinead

Yes, of course Kevin. No problem. Let me know when , thanks.

pixiewixie profile image
pixiewixie

Well done kyliesinead again! Brilliant for people to read your story & great that you know how much we all appreciated it. I agree the mind is a powerful tool, just sometimes, (always if I am honest), mine is unable to function as well as it should. I may need a brain transplant! Hope that does not offend anyone, just remembering a good luck card I was given for exams many moons ago! It was funny & I have often thought since; 'if only I could rewire my own old brain". Anyway "have a good day ". Pixiewixie

kyliesinead profile image
kyliesinead

I'm sure most of us agree that our brains ain't what they used to be. So sad am I that we have at least one game of scrabble each evening, just to massage the old grey matter. Rock n roll ! Keep smiling x

Iranianman1 profile image
Iranianman1

Great! I enjoyed much reading those beautiful lines! Please keep writing! Writing is the fan that blows onto our hot livers! Write! Write! Write!

kyliesinead profile image
kyliesinead

Thank you. I will.

misty14 profile image
misty14

Hi kyliesinaed

I love your very moving story about coping with lupus and what it has done to our lives. Your very talented and I'm glad it's going to be published in news and views. Will look forward to seeing more of your work. X

kyliesinead profile image
kyliesinead

Thank you so much. Your comments are very much appreciated x

Not what you're looking for?

You may also like...

Is it Lupus?

hello all good to meet you here. I am in the process after many years of battling inflammatory...
GottaAsk profile image

The darker side of lupus #12

I have no clocks in my bungalow........ I have only 1 mirror (in the spare room) Sounds ridiculous...
amandalilley profile image

Lupus rash advice please

Hi everyone! Sorry it’s been a awhile but I have a question about a rash that’s developed on my...
kaw86 profile image

The funny side of lupus #17

Is when during a bad day...... you find laughter in the the darkness.... My eyes had got sooooo...

Life with Lupus

Barnclown gave me the name Barefoot Gardener, due to the fact I have had to go barefoot 100% of the...
Tiras profile image

Moderation team

See all
Debbie_kinsey profile image
Debbie_kinseyAdministrator
chelseawong profile image
chelseawongAdministrator
michaellasmith profile image
michaellasmithAdministrator

Top community tags

Content on HealthUnlocked does not replace the relationship between you and doctors or other healthcare professionals nor the advice you receive from them.

Never delay seeking advice or dialling emergency services because of something that you have read on HealthUnlocked.