"I used to hide my symptoms, but then I had accidents in public"

I have fatigue, bladder issues and my left leg is numb all the time halfway down. If I do a bit too much walking I get tingling in my right leg as well and I’ve got pins and needles in my hand. My speech sometimes starts to slur a bit and I do become forgetful. I’m kind of known as elephant brain so it’s really frustrating when I start to forget things.

Read more about managing memory problems with MS

One of things I’ve previously found hard to talk about is my bladder. I’ve now come to realise that it is part of MS and sadly some of us are incontinent. I think I had to have an accident and to be embarrassed in myself to be able to talk about it.

We went on holiday and on us getting to the airport I kind of had to do a poo on the side of the road and my wife Asha had to clean me. I didn’t know what to do and I was mortified, but she wasn’t phased by it and now we can laugh about it.

I think I’m generally a very positive person so I try not to let things push me down. I’m human though and so some days I’ll let it eat me up. Or I have times where I say to my wife, "Asha, don’t talk to me, I’m in a mood, let me do what I need to do."

It can be hard when people start to fuss over you when an accident happens. I’m like, "OK, I’m already embarrassed and it’s happened before, so I know what to do. If I need your help I will ask". But If Asha is there she will also be on hand to help me, which I love.

Everyone thinks they know how to help, but sometimes you just need to be on your own or with your other half.

I now try to be open about what I need

I used to hide my symptoms, but then I’ve also had accidents in public. I now know to take a spare pair of trousers and underwear, too. 

So I try to be open and transparent with work because they should be there to help you. I guess it's just about not being afraid to speak out and actually say what’s on your mind. 

Some organisations are not like that though and I’ve learned that the hard way. I can’t fault the organisation I’m with at the moment, they’re fantastic. I think it depends what you’re doing, who you are and the rapport you have with your manager, as to how open you can be.

On bad days I use my wheelchair, but on good days I can manoeuvre myself around with my walking stick. It’s different each day, so I’m grateful to my work who let me work fully remotely if I want to. I do like to go into the office every now and again because I miss being with people. But my wife Asha wouldn’t be around if I went in every day, so I take pride in her being my carer.

I drive race cars for Team BRIT, in an all disabled race car team

When I first got diagnosed I stopped driving altogether, because I didn’t know what my body was doing, didn’t know about the treatment. But then I saw a documentary about Team BRIT and I reached out to them and they invited me to a track day and I was able to get out into a race car.

And that built my confidence up and now I’m able to drive. I’d lost that completely and for someone that loved driving – it felt like it was taking who I was away. It helped that I was able to talk to someone.

They had nothing to do with MS, but they were able to say to me, "we have a huge bunch of people who have disabilities, whether physical or mental. And if they’re able to drive a race car, why should that stop you?" That was very helpful and I’m very grateful to them for chatting to me and for giving me the opportunity. Team BRIT have definitely helped me accept my disability.

Read more about driving when you have MS

I don’t let my symptoms stop me applying for jobs or going on holiday. But I definitely don’t drink enough water. One of things I’m supposed to do is stay hydrated, but I don’t because of my bladder issues because I don’t really want to have a full bladder and then wet myself. But maybe I’ll change in a few months, who knows.

I was on a program for my bladder but stopped that because we were having fertility treatment and that didn’t make sense because the treatment can make you have issues. Now we’ve stopped the treatment I’ve restarted the conversation and looking at treatments to help.

Sexually I’ve not been as active as I used to be – I just get really tired. I have mentioned this but never had any help or advice on this directly from health professionals.

Read more about sexual problems affecting women with MS

Reaching out to others

I think the impact of not talking about something, though, is it can eat away at you and you can create a bigger hole and end up going in a downward spiral. I would suggest that if something is bothering you reach out to your MS nurse, or your GP – they're there to support you.

I got a message from someone local to say they’d just been diagnosed with MS and they’re gay as well, so we meet up and have a chat. I think sometimes it’s nice to meet others who are suffering the same thing as you but I understand that also it can get you down. It depends on the person.

It’s really important to raise awareness of some of these difficult topics because a lot of people are shy and scared, or just don’t know where to look. It’s good for people just diagnosed or having similar symptoms to know they’re not on their own.