Okay…here goes. *breathe*
Last week I dropped my cup of tea on my lap in front of a good friend and colleague. Instead of being honest to someone I trust and appreciate as a friend in my life, I lied and called myself a “stupid klutz”.
I should have explained to her that my hand was too stiff and in pain to hold my cup properly. I should have told her the truth. But instead, I brushed it off and carried on. Since then, the pain has migrated from my hands, to my shoulder and now to my hip. It’s been like this since last year July.
The pain is so intense that it has left me crying my eyes out at night, unable to sleep. I use an infra-red massager to ease the pain. I’ve had to ask someone to give me a lift home from work on two occasions because I cannot open my hand to hold the steering wheel to drive home. KK has had to undress me some days because I am unable to lift my arms. I don’t know what to eat anymore because my diet is so restricted, yet I continue to put on weight due to the cortisone I am taking.
I am a fake. I am a liar. I am absolutely miserable.
I am tired of hiding something that I realise will never go away.
12 years ago, I was diagnosed with Ulcerative Colitis. Just when I had managed to gain control over the disease in my body, last year, the inflammation spread causing me to develop Enteropathic Arthritis affecting my joints and causing me crippling pain which migrates throughout my body.
I don’t tell people I have an incurable illness. Firstly, most people will not understand exactly what I have. Secondly, unlike other illnesses, my symptoms are not something people want to hear about: bleeding ulcers, bloating, diarrhoea, crippling arthritis, pain…
I never see any glamorous running races to raise money for the Ulcerative Colitis or Enteropathic Arthritis sufferers. We don’t get a bright coloured ribbon to wear. It’s a lonely disease.
But I can’t anymore. I am tired of hiding it. I’m tired of carrying around this secret, this burden.
I’ve come to realise that if I need help and support, people need to know what’s going on.
So that’s what’s going on.
I am in pain. I am weak. I am struggling to control it.