“I woke up one day and couldn’t see anything,” recalls Aliie Harpham, who discovered she had multiple sclerosis (MS) last year. “I felt completely paralysed, like someone had just pressed the ‘off’ button on my body. I had to lie in bed for a week. I thought I was dying.”
Now aged 26, Aliie is getting used to living with the incurable condition. But life isn’t easy. She can’t feel anything with her left hand, which makes it difficult to do simple things like tipping food from a heavy saucepan. She gets excruciating nerve and bone pain on a daily basis. The only reason she doesn’t constantly fall over is because she wears a foot brace to steady her foot drop. Sometimes she wakes up with involuntary eye movement so severe that she can’t even walk to the toilet.
“Living with MS, there are all these little things that normal, healthy people don’t experience but that become a daily thing for us,” she tells The Independent.
“It’s now just second nature for me to carry heavier things in my right hand. I have to be really careful with little things like leaning on a hot radiator, because my left side is numb. If I have a bad night’s sleep, my balance is completely gone and I have really bad word-finding abilities. I catch every single cold or flu virus that goes round and I’m also really prone to urine infections.”
The worst thing of all, Aliie says, is the nystagmus, an eye condition that comes with having MS, which comes on about once a month and leaves her unable to move, as well as a painful thing called the “MS hug”, which she gets on an almost daily basis.
“The first time I had the ‘MS hug’ I genuinely thought I was having a heart attack. It’s this really shocking quick pain. I get it a lot more now than I did when I was first diagnosed. It can last for up to an hour. I get it at work a lot because it comes on when you’re tired.
“And then I can’t do anything when the nystagmus comes on. I wake up with it and have to stay in bed for two or three days, I can’t even walk to the toilet on my own. It feels like someone’s shaking you when you’re standing still. The way I have to deal with it is just lay there with my eyes closed and ride it out.”
Despite all this – which she manages to hold up her job as a student veterinary nurse – Aliie gets no disability benefit from the Government, after an assessor for the Department for Work and Pensions (DWP) decided she didn’t…