I just want to know how anybody has coped with the pressure of being in benefit. I want to be healthy again, get a job and become independent. But whenever i try to explore or practice that independence, i have to look over my should incase someone goes to report me that i am not disabled enough.
I have AVN which was caused by steriods. So i had a surgery last year on both ankles and both knees. So i have used chair, zimer frame (i still use it when i have a crippling flare )crutches and now a stick. Some adaptations has been made in my house like a walk in shower, stairlift and a bed. These adaptations helps me independently move around the house without stressing my mum that much. Going back to my mobility, recently i have been trying to walk without a stick but i fold my stick and put in my bag just incase my knees get tired.
I have been told that i am At Risk of diabetes and i have been refered for breast reduction both require me to loose weight. So i set a plan to walk 30mins 2wice or 3times a week and reduce what i eat. I have tried to walk a few times without my stick and i feel liberate.
Then i went into hospital for a four night flolan infusion ( it was a hurrible experience but i will share it in my next post). After i had finished my infusion course ended friday night, my Doctors said that if the last infusion finished i could go home on saturday. After all the administrative failures i was finally discharged. I asked the nurse to book transport for me and they said i wasnt eligible for transport because i dont have any mobility disability. But i told them i have always had transport booked for me after my infusion. He said but am not disabled. I told him i was on high mobility rate on PIP. He looked at me in disbelief and said "whats ur disability". I said i have lupus which affects my joints and that i always carry my stick in my bag. That was when he went and booked me the taxi. 'I dont look disabled' because i take a walk in the hospital almost every day dragging my infusion along because i fighting to avoid diabetes and i am fighting to get my breast reduced inorder to reduce my chest pain, under the breast ulcers, shoulder and back pain. So i dnt look disabled.
This worries me alot, are they going to pull the rug off my feet because i dont look disabled enough or i dont walk with a stick 2day. I am on Motobility scheme and am worried they may one day take my car. Is it a crime to feel strong once in awhile and enjoy that freedom without looking like a benefit thief. It makes it look like a bad thing, to get better and have a life! I am 32 but i fill trapped by my illness and with the benefit system. I always pray to God telling him to give me my health back so that i can afford myself a car, pay my bills and take care of my family without worrying about who is measuring my disabilty.
Please can someone tell me what to do? Should i glue myself to my stick even on days i feel i can manage without them?
Take care and God bless.