Sunday, October 12, 2014

about having a chronic illness

oh Ann! you look really well...I am very sick.
oh Ann! You are walking........ I am still very ill.
Oh Ann!  why can't you? ........I am too sick.
Oh Ann!, Oh Ann!...................  you were ok yesterday.

the trouble with being so ill, its not visible.
I do not exactly wear it on my face, in my dress, or actually on any part of my body.

You will see me looking as people call 'normal.'
You may see me in a wheelchair, you may see me then stand up, or walk, and say...she walks!

You may also see her lying sick as a parrot for hours on her swingseat in the garden.

what you do not see is Ann weeping with depression because she feels so awful.
you will not see her go to bed, fearing the fact she cannot breath properly.
you will not see her waking, her gasping as her head spins badly and needs to get up for food and liquid because her disease demands she has these and all she can feel is her head screaming and her head spinning so she must rise and drink plenty, she cannot rest on.
you will not see her as she tries to physically get out of bed and scream with pain, in her joints, in her feet.
you will not see her as she steadies to stand, being fixed to a spot in agony before she takes that first step forward, stiff as a board, in pain.
you will not see those eyes, dry as a crisp leaf in autumn and sticky tacky with not enough moisture.
you will never see her feel so shattered even after a nights sleep so so tired all the time.
the feet buzzing in pain, or tingling or numb or burning or on fire.
you wont feel or see the skin creeping as even finger touches finger sometimes causes far too much pain.
how she doesnt sleep with jammies anymore.
how sometimes she needs a bed cradle to prevent the clothes touching her.

these are all the signs of a woman with a neurodegenerative disorder.
her muscles are wasting and dying.
her immune system doesnt function so all that is going too.
her brain functioning is going down.
she is living in constant chronic pain, no matter what medication she takes.
she spins from exhaustion if she has done too much talking or even sitting and typing.
she lives like a zombie with not a lot of support.

she is treated as if she was 'normal' as if nothing was wrong and almost as if she is faking it.

she also has asperger syndrome, which she herself is very aware of and yet so late in life has never really learnt that many skills to deal with this.
she also knows that maybe only maybe if seen sooner there would or could have been a way out and over her chronic inability to be part of a functioning world, she sees and experiences but cannot touch.

remember when you next see me and say 'Oh Ann, you look so well.'
Look with your imagination to the call of morning, waking, trying to get out of bed, standing, screaming, moving, and attempting to embrace another day, with profound exhaustion.

no cure and no treatment for Mitochondrial disease.
just looking normal is what you will see, feeling ghastly is how i feel.

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