Move it for MS Emily's story

Emily was diagnosed with MS in 2010. She used to be physically very active, but since being diagnosed has struggled with mobility issues and now uses a wheelchair to get around. Here we chat about how exercising helps with her MS and what type of exercises she finds most helpful.

I was diagnosed with MS in 2010, after having symptoms for about nine months. I had recently turned 28 and the symptoms I had at the time were pretty bad. They covered almost everything you can get with MS. At the time I was very active, I walked a lot and didn't have a car. But I started finding that my legs would drag when I walked and then my eyesight began to get blurry. I went on to develop slurred speech, followed by incontinence. The main symptom for me, which remains to this day, was numb feet and heavy legs. I have unsteadiness and an inability to walk terribly far, or stand up for long. Something that I've never quite been able to get on top of, despite trying so hard, is the loss of mobility. I still exercise a lot, but the mobility loss has the biggest impact on me.

I got my first bike when I was 10, and you couldn't part me from it. I was on that bike at every opportunity. When I was at university, I started going to the gym and became quite hooked on that, turning into quite a gym bunny. I kept up my love of cycling and just a year before I got my first MS symptoms, I cycled across Egypt for charity. It was the greatest thing I've ever done in my life. We were cycling through the desert meeting all these wonderful people in the Egyptian villages. It was just the most amazing journey.

When I came back from that trip I was like, "Man, I just want to spend my life on a bike and see the world", so I started to read up on people who cycled around the world and I decided I'd start with London to Paris. This was in 2010, the year I was diagnosed. I had the form ready to fill in, but then my mobility started getting bad and I thought okay, I'll leave that form aside for now, and wait for my legs to get better. But unfortunately that moment never came. Now I can no longer ride a bike, so London to Paris might have to wait, until I've worked out another way of doing it. Maybe arm cycling, a motorbike or some other kind of bike.

The week after I was diagnosed, I had to cancel my gym membership. The gym I went to was a half hour walk to my house and I didn't have a car. I could no longer do that walk, and I certainly couldn't do the walk, exercise and then walk back. So I had no way of getting to the gym, even if I wanted to do a small workout. I remember going into the gym to tell them I was leaving and I just broke down on the poor reception lady, she came over and gave me a big hug. It was just so heartbreaking.

What I did instead was to invest in home workouts. I got a DVD program that uses a kettlebell and that became my main source of exercise until I had my first child in 2013. I spent three years just doing that, and I got so good at it. I was really comfortable and probably the fittest to look at that I'd ever been. It wasn't so much cardio, but it was using my muscles, and weights, which I hadn't really done before as I was more into running and cycling. I used my arms a lot more, and my core muscles, which was really good for my balance.

When I became pregnant, I was advised not to continue exercising, and after I had my son, I found it really hard to get back into it. I'd never been in a position where I had to start exercising from scratch again. I think on top of having MS, I was probably really unfit, and I found it really hard. I thought, "Well, I'm gonna have another baby next year", which I did. So I thought I'd leave the exercise until I'd had that baby. Then after I had the baby, I got on a bike for the first time in five years. I managed a little bit of cycling, and I thought okay, this is good. I'm going to buy a new bike. So I bought a new bike in 2015. I've never ridden that bike since because I couldn't do it.

Then the worst happened, my legs became worse, and I relapsed pretty badly.  After my third child, I was feeling really unfit and I thought you know what, this is ridiculous, "exercise makes me feel better, and I'm going to join the gym again."  I got a personal trainer on board, and he wrote up a program for me, a food plan and a workout plan. He sat down with me and went through it. He had ME himself, so he understood a bit about fatigue, but he was a bit shocked when he asked me to do 20 minutes on the cycling machine. I said, "I'll give it a go, but this isn't going to go well." When he saw me he said, "Okay, stop, maybe we need to build up to that one!" He completely changed the workout plan when he realised that my legs were as bad as I said. He didn't believe me until he saw it firsthand. He then designed me a perfect fitness plan and I became super fit and really pumped as a result. I was feeling so much better about myself because I was eating healthily and the exercise was staving off the fatigue. It was so good, I kept it up and then COVID happened. So now, post lockdown I'm starting from scratch again and it's hard work!

I guess you've got to get the right one. With my personal trainer, I knew them personally and I knew he would understand because he had ME himself.  I think it would have been harder with someone who didn't have any kind of experience of MS or chronic illness.

I think if you are going to find a personal trainer, it's good to find one who is experienced in training people with disabilities. Sometimes personal trainers say "get through the pain or the more pain, the more gain" That's not true with MS, the more pain the more pain! You mustn't overdo it, and I think a lot of personal trainers really push you to do another 30 seconds or do five more. But with MS it's "No I can't do it", your body's screaming at you and you're not going to be able to do it.

Back in my early MS phase, I was recommended a different personal trainer that specialised in disabilities. That wasn't good for me, because he went to the other extreme and it was too basic. You might need to do that if you need to build up your strength from scratch, but I wasn't in that position at that point. I wanted to have a go at doing some proper weights, but he was doing everything so delicately with me that I wasn't getting anywhere. I didn't feel like I was getting any endorphins. I think he was trained to take it very easy and not hurt you.

So you need to get a personal trainer who understands you, and will push you enough, but won't push you too much!

I am more and more reliant on a wheelchair so I really want build up my strength in my arms, because it's quite exhausting to be propelling a wheelchair. I'm working a lot on different muscles in my upper arms that involves chest presses and arm presses. But also I need to keep my legs moving, because I'm not walking. I can't walk far at all, so I need to keep the muscles in my legs working.  I think it's really important to keep everything moving as much as you can, which is why I go to the gym. I work my arms first, because that's something that is not really affected by MS. I've got tingling hands and numb fingers, but it doesn't prevent me doing arm exercises and working my arm muscles. I do a really good workout on those which feels quite satisfying. Then I work on my legs, just a small amount of leg presses or a little bit of rowing, which works your legs more than you'd think. I can't do a treadmill, that's completely out of the question because I would just trip over my feet and kill myself. I've started using a cross trainer, which is quite fun so I enjoy that. But again, I can't do too much at the moment, and it's very difficult for me to get off it. Once I've done five minutes my legs have gone a bit weird under me, and I can't support myself when I stand up. I probably do push myself too far, but I think it's really important to keep my legs moving in a safe environment where I'm not going to trip over.

I've never regretted a workout. I can't relate to people not wanting to exercise, even without having MS I wanted to exercise. I think that attitude puts me in the minority, and I don't really have many friends who go to the gym. One of the most common thing people have said to me over the years, and particularly when I was newly diagnosed was, "Why would you want to exercise anyway?" Or "Why would you want to be able to run?"  It really hurt. I thought, "Why have I got MS and had my mobility taken away from me, when people who don't want to walk and run are fine?" It's not a very healthy way to think, so I try not to think like that anymore.

But it was frustrating to me to me that people who could walk didn't walk, people who could go to the gym, didn't go to the gym, and there was me just so desperate to work out and I couldn't. But going back to how exercising makes me feel; I feel really, really pleased, happy, excited and full of life. I may not feel it physically, but mentally, it's there. I just think it's the best feeling ever.

I have felt like I can't be bothered, because when you can't do the workout you want to do it's really frustrating. I have had moments of feeling like, "Why am I bothering? Why am I punishing myself like this?" It's very easy to think "I won't bother". But then I'm quite stubborn.

You definitely have to find something you enjoy doing. A lot of people say they find the gym boring, so perhaps don't go to a gym if you find that boring, find something at home that you like. Maybe like Zumba or yoga. I find yoga boring, but I gather a lot of people enjoy it, and actually get a lot from it.

So find something that you're going to stick out otherwise you're just going to dread doing it all the time. If you can run or walk maybe do interval training, that makes the time go much quicker. If you can ride a bike, then do that because you're out there in the open air and you can find a nice cycle path route and just go for it! Or cycle to work so you're not having to take time out especially to do it.

I think the key is, if you don't use it, you will lose it. I can feel that happening a bit with my legs since being in a wheelchair, so don't stop moving!

If you go online it can sometimes be very toxic to read things from the MS community because there's a lot of bitterness from people who can't do something when they see someone who can. But also on the flip side, someone who can do something can be quite boastful about it or might just put the message out in the wrong way and assume that because they can do it, other people can.

I've been hurt before by reading some things online about what people can do. It's really hard, because when you are putting yourself out there to talk about your with life MS, you can only tell your own story. There's always a danger that it's going to upset someone. I don't think that I've ever upset anyone and I haven't had any negative comments which is quite a miracle. But I certainly read a lot of negative comments on other people's posts. You've just got to be careful that you stress that this is my MS, this is what I can do, and I know that not all people can do it.

I've never been worried about what people think of me when I'm exercising at the gym. It doesn't faze me, even though I'm staggering about between equipment. You can think everyone's watching you, but I don't think they are! I mean, when I go to the gym, I don't really notice who else is in there. I just concentrate on what I'm doing. I'd be surprised if there are people actually in there, watching other people and judging them. You know, it's like when you see someone running in the street, you can't judge them because they're out there running. At least they're out there doing something!

• Read Emily's blog - The Wibbly dinosaur
• Starting to exercise - information from the MS Trust
• Staying active with MS - information from the MS Trust