“SO, You’re the lady with Lupus.” was Dr T’s opening line.  This was the first time we had met.   Dr T seemed weirdly excited.  I was taken aback, bemused.  For the first time in my life I felt the impact of being labelled.   I felt like a blob – a weird scientific anomaly.  I was being peered at like a glass vial filled with urine samples and blood results.  I was measured through a conglomerate of charts and graphs.  I was learned about through medical essays and graduate dissertations.   I felt unhuman, simply a file named Lupus.

“Your blood results are stable.” said Dr T.  “What about that one that is highlighted in red?” I asked.  She changed the page on the computer. “That is low,  but not low enough to worry about.  Just keep taking your prescription. Is there anything else I can help you with?”

“Yes. I am continually dizzy and many times I feel I’m going to faint.  My heart races, my joints ache and seem to freeze into position.  My fingers turn a scary bluish grey – much like the Reaper’s or a Van Gogh on a bad day.  My muscles are constantly in pain, I cannot lift my arms or walk at times.  My vision is blurred, lights are too bright and my ears ring.  I cannot concentrate, recall words or remember carrying out tasks.  I put the phone in the fridge.   I have strange pulsating cramps in my side. I have difficulty sitting under flourescent lights and my skin breaks out in rash when I’m in the sun.  I get small ulcers in my mouth.  And, by the way, I was hospitalised with (what they think) was a fever induced migraine 2 weeks ago.”

Up on the couch for a physical.  Reflexes checked, hands manipulated, heart and lungs examined.  “Everything seems fine, have Nurse X take a urine sample and give blood samples at haematology.  I will see you in a few months time.”  Dumbfounded by her dismissal of, what I think are significant health conditions, I walked out of her office a submissive shell of my usual assertive self.  I gave my pee-pot to the nurse and booked my next appointment. On my way out the nurse caught up with me “your sample is fine, there is blood in your urine but not enough to worry about. Have a good day.”

At home I unfold and layer the silks on my chaise longue (I have bought a series of 2nd hand silk sari’s).  Beautiful colours of oranges, golds and greens.  My favourite colours that bring me joy.  I fill the vaporiser with bergamot, lemon and peppermint oils. My large mug is filled with herbal tea and I sink into the silk and cushions to find comfort in this most uncomfortable realm.  I listen to delta waves and fall asleep.  I am real, I am human, I am woman.

Thank you for reading,  FreeMeFibro

∼FreeMeFibro∼Living with #ME #MyalgicEncephalomyelitis #Fibromyalgia #Lupus #Spoonies #CFS #ChronicFatigueSyndrome #Raynauds Syndrome #chronicpain #autoimmune diseases