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LUPUS UK
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Worried sick about my PIP mobility rate been taken

Hi all

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.

Regards

Ijeasike

5 Replies
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PIP is based entirely on how you are on your worst day. I have the higher care rate PIP allowance, but that is based on when I'm at my worst. Sometimes I'm like that. Others I'm not, but I filled in the form honestly and got the award. You have done the same. Please don't worry about it anymore than I do.

A doctor being surprised by a condition which is often invisible to the person on the street is a disgrace and clearly in need of more awareness and training

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Exactly most of the nurses had no clue about lupus. While u can have an agency nurse who doesn't have experience with flolan and u will wait for hours so that a more experienced nurse could come and setup ur infusion. Or a nurse careing for you may not have a clue what ur in hospital for. Sometimes even some doctors in the wards who are not rheumatologist have no clue how lupus affects you, or why u need flolan for. In 2012 i was rushed to hospital and i had serious fluid retention and Dr from A&E looked at all the fluid and asked me what was wrong i told him am at risk of kidney failure. Then he said to me " how will your doctor take away all this fluid". I pinch myself! Are u serious!,. Training and awareness is the answer. Thank u

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Ije,

Hospitals are horrible. Especially here in the US. I found the ER doctors walking around, doing nothing, while I sat for 3 hours in pain from urinary problems. I could not urinate. I finally told the doctors years ago the ER gave me some kind of brown pill that made me pee orange, and it worked. So, they gave me some. Really? Whose the doctor? I'm not. I told them I had LUPUS, and they had no clue what to do, or every heard of it. We really need more awareness of this disease.

Feel better :)

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Thanks dear. I have had a doctor curiously ask me if Sildenifil (viagra) makes me feel funny. I looked at her in disbelief and said 'no '.

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Hi Ijeasike,

You have protection under the Equality Act if you can demonstrate that you are disabled according to its definition – a person who has a “physical or mental impairment which has a substantial and long-term effect on his/her ability to carry out normal day-to-day activities”. If you need information regarding PIP i.e. appeals, reconsideration and the support available to you, you can email me at Chanpreet@lupusuk.org.uk

According to The Lupus Encyclopedia, people who have SLE can also have diabetes due to their increased risk of obesity and use of steroids.

We published a blog article about diet and healthy eating which contains helpful tips and information: lupusuk.org.uk/diet-and-hea... . Also, we published a blog article on exercising with lupus which you can read here: lupusuk.org.uk/lupus-and-ex...

The Diabetes UK’s website provides information on what precautions and prevention methods you can undertake to lower the risk of the diabetes: diabetes.org.uk/

You may like to read our blog article on pain management here: lupusuk.org.uk/pain-managem...

Please let us know how you get on, wishing you all the best.

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