It’s not Lupus – so let me wear the red dress.

I often daydream about not being ill. As months are turning into years I don’t want to forget what it feels like to be healthy. I fear if I lose sight of it I will never get it back. I stand at the door waiting for the bus to come to a standstill. I picture myself as the doors open, alighting the bus with effortless grace. My feet barely graze the pavement before I lift up again and off I go with the breeze, my red dress swinging at my knees – Special K girl eat your heart out. I look to cross the road and swoosh my hair (I believe that’s the technical term) over my shoulder and smile at strangers while skipping, gazelle like through the gaps in the traffic. I am ethereal. I float an inch above the ground.

I am rudely awakened by the hissing of the door and reality hits as my hips clunk down the step and I wince as feet meet concrete. I awkwardly shuffle away from the bustling crowd so nobody bumps into me and hurts me. Catching my breath, I hold my head up and try to ignore the strain in my neck. And then I waddle, aware of every muscle as it pulls and throbs with each step. My dreams of being the Special K girl are rapidly swept away down the street with the stream of bodies. I also don’t own a red dress, just to further shatter the illusion.

Recently, another illusion has been shattered. The illusion of Lupus. My new specialist believes the original diagnosis of Lupus that I was given is, in fact, wrong. Weighing up my blood results and symptoms he thinks I have Fibromyalgia. As far as I understand, Fibro is a chronic ‘syndrome’ that causes pain receptors to go ‘squiffy’ (more technical terms for you), which would explain the constant head-to-toe assault of pain that’s been a prominent feature of the last 6months or so and the sporadic, fleeting pain that preceded it. I can’t imagine any other circumstances where being told I have a life full of pain ahead of me would bring such a sense of relief. Fibro, it would seem, is the ugly but less dangerous cousin of Lupus. My joints are fine, my muscles are good, my organs are safe…it’s just my brain that’s the problem.

I can accept that more easily than being told my body is screwed for some reason. I never realised I valued my body so highly until coming to terms with Lupus. I’ve always spoken so badly about it, hidden it under unflattering clothes, jeered at it in the mirror, scarred it and filled it with poison. When I was told my body was under attack from the very core of me, I suddenly saw the precious gift of a body crumbling before my tired eyes, and to some extent I blamed myself. I carried on berating my body – stupid body, useless body. Being angry at it felt easier than mourning it.

Now I’ve been told that my brain is the perpetrator. Tell me something new. My head has caused me havoc for years. Chemicals and brainwaves and synapses and whatnot – they have never been my friends. I ended my friendship with my brain round about the time I started to go mental. There really is no love lost. Don’t get me wrong, I have a great respect for the life force inside my skull, but it has let me down far more times than my body has. Now it is lying to my body, telling it that it feels pain, that it is damaged and unwell. Brain – I ask kindly that you leave my body out of this please. Please give my body the chance to wear the red dress and be ethereal.




9 responses to “It’s not Lupus – so let me wear the red dress.

    • After reading this a friend of mine lovingly suggested that we take her Grandads mobility scooter and go out red dress shopping. What are friends for eh?

    • Fibro would be a terrible picnic!! To be honest I probably wouldn’t be feeling so positive if I hadn’t had a previous diagnosis of Lupus. I don’t usually do positivity too well which you may have gathered from my other entries. It’s a huge compliment to know I can put how I feel into words that others relate to, so thank you.

  1. Are we twins separated at birth perhaps? BFF’s just waiting to meet? I have Fibromyalgia and an auto immune disease (Hashimoto’s Thyroiditis) and can remember NOTHING. No short term memory at all. I love the saying FIBRO IS NO PICNIC! we should all get together and buy red dresses and have a party. Your new fan. Laurie

    • Funnily enough I have Hashi’s too! I very much like the sound of the red dress picnic. Although yes my memory is appalling so we’d have to send plenty of reminders out!

  2. I’m the other way – I have Grave’s. Interesting how the thyroid is involved in so many of us.

  3. I was finally diagnoised with fibromyalgia 5 years ago. It can be a tough journey to figure out what you need to do or avoid. But you can do it! Life may be different than you had planned, but it can be a full and happy life!

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