I try to walk around everyday trying to gain more confidence releasing my arm, letting it hang as it feels and will..
I get stares from young and old, this stops your confidence, but what ruins it the most is the benefit programmes
"She doesn't deserve money, she's able to work"
stepping out of the car, my mum realising how anxious and stressed I felt, not by my face but by how she's followed my long journey of recovery, not only from my stroke but my;
epilepsy
nephrotic syndrome
benign intracranial hypertension
essential thrombocythemia
my stroke and it's side effects
The brain injury it left behind, not only the disability
Sat in a waiting room surrounded by adults just as nervous, exaggerating their illnesses thinking the receptionist will write down how they're suffering or will tell the doctor their waiting to see to explain why they can't work
Why should people have to describe their capability and everyday struggles, to someone who nods and acts like they care.. only to rate them out of probably a very low percentage that will never explain anything
"Elizabeth Ashmore-Fish?"
The 'neurologist calls my name, they had to ask a neurologist to take my interview as apparently they could 'asses me better'.
No one can understand the pain we go through everyday
She questions me on how my stroke affects me
"and were you right handed before your stroke?"
I simply reply ''please don't tell me I'm lucky because I get that a lot"
she laughs..
This is just another patient to them, someone they can go away and probably judge as they walk out of the really heavy doors.. down a long and narrow pathway to their car.
Even today after years of living with several illnesses no one thinks to ask how they make me feel, no one even bothers to tell me I'm coping..
Nephrotic Syndrome:
Everyday I'm downing water to see if I'm weeing
staring into the toilet to check the shade my wee is, poking my ankles and checking my eyes to see if I'm carrying fluid.
constantly hearing my mums voice in my head 'Liz, have you wee'd today?'
remembering the weight I gain when I relapse and take the steroids.
Epilepsy:
The constant fear of having a seizure, anywhere any place and anytime, The constant walking in places where there are loads of people so if it happens, people will find me.
Benign intracranial hypertension
The aching back I still have from my lumbar puncture, sometimes getting excruciating headaches where I can't hold my head up.
Essential thrombycothemia:
Taking my iron tablets and chemotherapy everyday, brushing my hair and checking if any has fallen out.
reminding myself I'm on a 'mild dose'
Stroke:
wondering if I can walk without falling over a curb and smashing my head where I can't stop myself with my arms, my splint that rubs and cuts my ankle, the arm and hand that hang so much it gives me neck ache, my memory thats still returning but will always be affected. also like the fatigue I get most days.
So thats how they affect me..
A 15 minute conversation won't ever explain this. nor will a rating.
It saddens me to think about how the government can put disabled people through these interviews and give them the feeling of guilt, anxiety and worry that even though they'd love to return to work, (mainly to stop the people who ask "are you still receiving benefits?") to shut up. We/I left reminded of my health and how its always there, no matter how strong I feel on some days, but how ill I can feel.
So this was my interview and MY opinion, this took me 5 minutes to write, and I myself will get a percentage of those who've read this blog post. Not of those who judge if you're capable of working again.
