I have had pains in my legs my whole life and fallen a lot. My health got worse in 1988 aged 29 and couldn't control my limbs . They jerked never had any warning. My daughter was 4 and son 6 months old. 2 months later spent 3 weeks in hospital due to uncontrollable pain and jerking limbs. Had tests but those 3 weeks are a blur. Not allowed to see my children hospital rules because of their ages. Had a nurse shout at me as I was crying I missed my family she said stop making a fuss your only have post natal depression. I had not . Luckily allowed home next day.
We had a brilliant GP who believed me as he had know me a long time. I had had Drs tell me over the years I was attention seeking,mentally ill ,making a fuss over nothing and putting it on.
My GP asked me to a psychiatrist so he could them send to me other consultants. My husband hated that. We joked I had a certificate to say I was sane as the psychiatrist said my problem was physical not mental.
Our GP said to claim DLA as it was in those days. Turned down as no diagnosis. After seeing different consultants my GP sent me to see the best neurologist in the country at the time at neurological hospital London. After a week of testing couldn't tell me what was wrong but what I hadn't got. But at these he started me on tablets to try and help my symptoms. This was 1992. Didn't see another neurologist until 2017 after 2 of the tablets I had been taking gave me jaundice and was told on discharge after 5 months of being seriously ill from my gastrologist people with my bilirubin levels normally died.
My husband died in 2004 from cancer . I tried many time to get disability benefits. Turned down everything time. No diagnosis.
After moving house 3.5 years ago my neurologist put me on a tablet and after 32 years of limb jerks and 4 months of full blown seizures my body was still it's been bliss the last 3 years. He had my blood genetically tested in 2020 but didn't get the results until March last year. April I finally have a diagnosis and I was born with a rare hereditary neurological condition. Plus found out in 2020 because my new GP sent me to see a cardiologist I was born with a hole in my heart but it's not in the chambers connecting my heart but a little flap that should have closed before birth didn't it's between my lungs and heart. On tablets for PAF. I don't get chest pain so safer to level the hole alone.
Applied for PIP turned down and yet my condition has effected me my whole life and makes everyday tasks difficult and am in constant pain with my left arm and leg and have been since 1988. MRN turned down been waiting since September for tribunal date. Luckily the Brain Charity are helping me and have a wonderful solicitor. Because what money my husband left me is long gone and what mom left me has gotten so low can claim universal credit. My interview was in my local job centre and the lovely woman after seeing me said in future we would have telephone appointments. Just received the health forms and the Brain Charity will help me fill them in.
I have been fighting 35 years for disability benefits but I am not alone there are tens of thousands of people like me who are entitled to benefits. But because those people who judge us refuse to see us in person no disabled person will get a fair deal. Until disabled people write the PIP forms and disabled people are assessors no one is treated fairly.
Able bodied should realise anyone can become disabled physically or mentally or both at anytime in their lives. I would love them to be treated the way I have been. Even when my husband was terminal it was only thanks to our McMillan nurse we got DLA and carers allowance. They where going to turn him down because he had been given 4 months to 2 years to live. The woman on the phone no point him applying as he had years. He didn't live the 4 months .
When I was my mom's full time carer as she lived with me the last 18 months of her life she had breast cancer and dementia. I was only allowed 6 months allowance because I was told my mom would get better. My mom's dementia turned her violent the last 4 months of her life where hell on earth but I couldn't put her in a home . I looked after her on my own until she died aged 90.
Bitter about the lack of disability benefits and the people who seal our fate you bet I am bitter.
I have had a blue badge since 1988 when it was orange and had no trouble renewing it every 3 years. I don't drive and have to perch on the edge of the car seat and my legs out in and out and helped out. I don't know unless I get PIP if I will get it this year when it needs renewing in December because the rules have been changed. But I will fight to get it.
Yes this is a rant those like me who need help don't get it but those who play the system and lie do. Did you know Ukraine nationals who have escaped the war to come here can claim PIP as the recorded message kept telling me when I was on hold for over a hour 2 months ago. It said Ukraine nationals don't worry your PIP payments won't stop. 😡😡😡😡😡
And before anyone has a go at me this is my experience and what has happened and still happening to me.
Wouldn't believe how badly my sister in law who has had MS for over 20 years has been treated and has to use a wheelchair to go out.
So don't judge disabled people. I look normal until I move. There are a lot of disabled people who look 'normal' but have a lot of health problems not all disabilities can be seen but they are real .
Retiring and living frugally in money from downsizing after years of stress
