Photo: Doulla head and shoulders in profile with lining up with other people with MS.

Pricked with a pin at my PIP assessment

I was diagnosed with MS in November 2009. Before diagnosis I had a number of symptoms. The most obvious was optic neuritis.

I also had the MS hug – which is not nice at all, cognitive problems, bladder problems and walking problems. My right side also wasn’t as strong as my left and that’s still the case.

No more marathons for me

I can't do as much physical activity as I did before. I used to love jogging around the park. I was planning to do another marathon as I’ve got two under my belt. But when I did two 10ks with the local council a decade after the second marathon, I had to stop halfway through the second 10k as it felt like I had a furnace inside me. I had to call for a paramedic to give me ice bags to put around my neck to cool me down and then lie down on the side of the circuit. With that experience there’s no way I could do a third marathon.

I also get mentally fatigued, which isn’t nice. And means when it comes to doing a full-time job, my answer is regretfully “No”. My last full-time job ended 2015. That’s quite sad and quite scary. I did business project management: installing new systems, restructuring workforces, improving processes to get more efficiency gains and other projects, which I enjoyed.

I'm writing the book on my MS

There’s now a lot more coverage of MS on TV and in newspapers. But people still don’t understand what it is. I’m writing a book about my experience of it to help my friends and family, more than anyone else. You can't say you know what it is from knowing someone with it, because MS is different for everyone.

I do look absolutely fine as I have an invisible disability. People see me and ask ‘what’s wrong with you? There’s nothing wrong with you!’. But give me some time and I’ll be suffering internally after a couple of hours. I’m not the person I was and who you think I am. I’d love to be that person again. Actually, I am still that person but now in a different way.

Pride stopped me applying for PIP

I first applied for PIP about four or five years after I was diagnosed with MS because my pride got in the way of making an application. The first time I applied they said no. I reapplied, after I was encouraged to at an MS Society event, and then I got the standard rate

I use the money from PIP for general living like food, utility bills (gas, electricity) and public transport such as my Oyster card. But it covers just a fraction of it.

Walking into doors

Because there isn’t anything physically obvious the PIP assessors think you’re fine.

In my first assessment, I had to walk and ended up walking into a door as I was talking with the assessor and not looking at where I was going. They didn’t mention that though in their write-up. There’s so many versions of an event, who’s telling the truth? I had to take two forms of public transport to get to the next local assessment – two buses. Wandsworth is so massive it was a long way from where I am.

Pricked with a pin?

At my second assessment I was pricked with a pin and asked if I could feel it. Yes. They pricked me again. Yes. I didn’t feel like the assessor understood MS, they were simply asking questions from a formatted question list. Apparently, the assessor was a nurse but I’ve got no idea if they were, I didn’t see their badge or qualification. We were in a venue in Balham so it could have been anyone!

I think the whole process is stupid and a waste of time. But I thought I’ve got to do it, when I applied again. Let them write down their assessment of me and see if I will be awarded anything. Fortunately, I do get something now. It’s not much, but better than nothing.

This is just the start

We’ve got to do these things to raise awareness of MS. Not just for me, but for other people, too. It is good to come together and collectively deliver the message. People need to listen to us, but I’m not sure how well they listen or understand what MS is.

The video and the message it contains are good at getting the information out to the public. It’s a start.

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Having MS is enough. We need a welfare system that works.

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