I was diagnosed with primary progressive MS in July 2015 – on the 10th anniversary of the London underground bombs.
I realise now I’d had MS for years before actually getting my diagnosis. But if I had something the matter I would try to ignore it and it would go away.
I used to walk to the supermarket all the time. I started noticing I’d have to lean on someone’s garden wall for a minute or two before I could keep walking. Those walks were taking longer and longer.
It wasn't all in my head
Eventually the problems wouldn’t go away. I was falling over a lot. I broke bones in my hand after a bad fall and had to have an operation afterwards. Every time I went somewhere unfamiliar I would fall over.
I saw a doctor, who referred me to an audiologist. They couldn’t decide what was the matter with me. In the end I had an MRI scan and that confirmed I had MS.
I was upset when I found out, but also relieved to know I wasn’t just imagining things.
Sisters with MS
My sister, Grace, who I live with, also has MS. She was diagnosed in 2000. I see the same consultant as Grace. She said my brain has the same kind of lesions as her, but our symptoms aren’t the same.
Now I rely on a walking frame to get around. It has a seat built in so I can sit down often.
The PIP form is a challenge in itself
I didn’t start claiming PIP until around a year after getting my diagnosis. I only found out about it through my doctor, who told me I was entitled to it.
It took me a long time to fill out the forms – they were very long and complicated. But also because I’m right-handed and can’t write anymore. My signature doesn’t even look the same each time I write it.
My assessor seemed nice
I went to an assessment centre in Merton. The assessor was a doctor. I’m not sure if she had any experience of MS. But she seemed very nice, she didn’t seem like she was trying to catch me out.
I got a letter to say I got PIP at the standard rate for mobility and no care. I got the taxi card and freedom pass, but not the disabled parking badge. I’m upset about that as I’d like to be able to park closer to shops and things.
The higher rate PIP would mean that I worry less about the progressive nature of my MS. I am well aware that my symptoms are likely to get worse and worse and the higher rate would mean I have more support coping with my condition.
I want to make a difference for other people with MS
I got involved with the PIP campaign because I want to help others with MS. I think it’s a good way to help cope with what’s happening to you. And it was so interesting to meet other people in a similar situation but with such different experiences. MS is so different for everyone.
One of the ladies who walked with a stick (Bethen) reminded me of who I used to be a year ago. Very determined not to give up. I very much have the attitude of staying positive and getting on with life.
Add your voice
Having MS is enough. We need a welfare system that works.