My life with secondary progressive MS at 24

Jasmine invites us into her home and gives a glimpse into her daily life with secondary progressive MS. Diagnosed at just 17, her condition has progressed unusually quickly. She shares how she's adapted.

Having advanced MS affects everything. Things that I once did have slowly been taken away.

A good day is me showering and washing my hair myself, doing my washing up. A bad day is like today – I’ve got up but not been able to do much. Some things can exacerbate it, but there’s no reason that I woke up like this today. It’s very frustrating.

I’ve not found anyone yet in the same position as me at my age. It’s made me feel absolutely alone at times. This is why I want to put my story out there.

It's been hard to adjust to my new limits

I’ve found it incredibly hard. It’s been a huge adjustment, comparing what I could do before to what I can do now.

I’m coping better at the moment. The beginning of last year was hard and I didn’t cope well. It helps when I can meet new people and talk to people, and to go out when I can.

I also listen to music, I love sitting there with my headphones on.

I’m grateful to be able to live on my own

It means a hell of a lot to me to be living in my own home. It was not something I thought was remotely possible. I started to think there was no way I could live by myself, but the carers are amazing. They’ve made it all possible.

I have five regular carer calls a day – 7.30am, 1.00pm, 3.00pm, 5.30pm and 9.30pm. If I need anything in between I can buzz and they come – when they are on shift they’re outside in a cabin. There’s seven other people in the bungalows here and we’re quite dependent on them, so they’re always busy.

My daily exercise routine

Every morning the carers stretch my legs, I can’t move my legs, the carers do it. I practice on the bed lifting my arms above my head and bending my arms while they’re in the air, which is surprisingly difficult. At night they stretch my legs, my hamstrings.

During the day I practice sitting forward for my core strength, or sometimes I practice lifting my arms to keep them moving. It’s good to feel like I’m doing something that might help.

I used to do my exercises with weights, at least 5kg in each hand, plus cardio every day. I just enjoyed exercising so much.

My life changed quite suddenly

I have secondary progressive MS. I did have relapsing remitting, but I was told it was secondary progressive around two years ago.

I was 17 when I was diagnosed. I was in college, working, going out with friends and going to the gym. I was always busy.

My mum and dad had gone away for the night, and when they got back I told them I had trouble getting up to the toilet in the night. They took me to the hospital and it was quite a quick diagnosis.

It was a shock, but I just thought well if I’ve got, it I’ve got it. I’ll get on with things. But I was struggling with vision and with walking and balance.

I didn’t respond well to my first treatments

When I was first diagnosed I tried three DMTs (disease modifying therapies), but they all gave me terrible side effects. Meanwhile my MS was progressing and my walking was getting worse.

I’d finished college and was working at a fast-food restaurant, but I was struggling and had to leave.

I then tried another DMT, Ocrevus (ocrelizumab), for two years, but my MS was still progressing. My neurologist gave me three options – carry on with Ocrevus, try Lemtrada (alemtuzumab) or have HSCT (haematopoietic stem cell transplantation).

My EDSS scale already put me in the borderline category for treatment. I decided to go for HSCT as it was the most aggressive.

It was really hard, but I’m very grateful I was able to have HSCT. At first it seemed it had made a difference, but the MS carried on getting worse quite quickly.

I don’t know whether the HSCT made things worse for me or not. But I don’t regret it. It was really the last chance of a treatment for me.

I’m proud to have tried everything.

Needing more support

I had to move to a neurological rehab centre a few months after the stem cell treatment as I didn’t recover enough mobility and strength to be able to stay at home.

Initially I was coping at home with my family, but it got worse quite quickly and my doctor referred me to rehab.

They put me in straight away because they realised I needed the support. It was the facilities really –  at home I had to walk three metres to the toilet and it was carpet so I couldn’t use a frame or a wheelchair. Then they put a bed in the garage for me and a commode, but I refused to use it. It was just the wrong environment.

Before the stem cell treatment I wasn’t good by any means, but I was just about coping. I could shower myself, get to the toilet, do my exercises. Then to go to not being able to do very much at all – it was hugely different.

We all thought moving out of home would be temporary and it would help me to get back some of the movement I’d lost. But unfortunately that didn’t happen.

But I met some of the most incredible people at rehab and I’m very grateful to have had the opportunity. They did so much for me – physio, occupational therapy, music therapy, psychological therapy...It was brilliant.

Meeting other people gave me confidence

Although I didn’t gain anything physically from my time in the rehab centre, it did help massively mentally.

In my first two weeks I was in my room because I was too scared of meeting the other people. But if I was in there now, there’s no way I’d stay in my room.

It was just great being with people in similar situations. I met a lady who is now one of my closest friends – she’s amazing. She’s 62 but has the brain of an 18-year-old. She’s not someone I’d ever have the chance of meeting if I hadn’t gone there. It broadened my mind and gave me more confidence.

I also met my boyfriend, Lee, in rehab – that was massive. He’d had a accident – he was hit by a car at work.

Jasmine and her boyfriend outside in a town centre

Being with him has meant that I want to do more. I want to be able to get out and spend time with him. I want to live as long as possible to be with him. He's perfect.

We see each other around once or twice a week. He comes to the bungalow and stays over. He even cooked Christmas dinner for my whole family!

I’ve had to adapt to a new life

I moved into my own bungalow at the start of 2024. I didn’t think I would ever move out of my family home after my health deteriorated. I wasn’t sure what I was going to do after college, but the MS diagnosis put me off doing most things. I was scared I was going to relapse at uni and not be able to cope.

I’m quite proud of surviving being by myself. And of doing everything possible to work with what I could do.

My bungalow is really quite spacious, I can sit in my powered wheelchair and go about doing what I want. My wheelchair is high-backed with head support, and the carers  hoist me to use the bathroom or to bed.

I have limited use of my hands and arms. Until recently, I could still feed myself, then on bad days I would just have a protein bar and fluids, plus supplements. But now I need help with eating, which I find frustrating.

The counter tops are lowered and there’s a ceiling track hoist in the bedroom. There’s a Vitaline for the carers (a Blackpool-based 24-hour monitoring centre).

The bungalow is great, it’s exactly how I want it. It’s definitely the best of a bad situation.

I love my table – that sounds really boring! It’s in the front room, it’s one of those drive-in tables so I can keep everything on there that I need.

I’ve got a ridiculous amount of perfume. I like the smell – you know when you meet someone and you think: “you smell amazing”. I end up buying it and I just seem to accumulate them all.

I’m looking forward to meeting more people

I’ve been told I could have access to a personal assistant. They could take me to new places like the zoo and shopping, but I’d also like to go to the comedy club and to shows.

One of the people from the social services wellbeing team is brilliant and found a few toilets in Blackpool which have hoists. This would make going out much easier. Most disabled toilets are standard ones with rails on the wall, but I can’t weight bear at all so it would need to be a hoist like I have at home.

If I can go out, I hope I can meet new people too.

I want other people to know they’re not alone

People might not understand that advanced MS can happen at all ages, it’s not just older people, even though that’s more common. It’s not understood.

I’m in contact with some other young people with MS, but I often don’t say too much about what I’m going through because I don’t want to frighten them.

If there is someone out there in a similar situation, I’d want them to know they’re not alone. To meet someone experiencing something similar, I’d love that.

Finding hope and joy

My family is incredible. If I need anything they would drop everything. I am so grateful to have so many friends and family around me.

I’m particularly close to my mum – we get along in small doses!

Spending time with family and friends brings me so much happiness and makes me realise I’m not alone.

Jasmine and her mum are in the hallways of Jasmine's house with the front door behind them. They're smiling at each other and her mum rests her hand on the back of Jasmine's wheelchair.

I find it incredibly hard at times, but I’ve also had amazing times that I never thought could happen because of my MS. Although MS has changed how I am physically and sometimes mentally, I still feel that there’s light at the end of the tunnel.

There’s so much available out there that means I can carry on living a fulfilled life. I've also been able to find hope and joy from things that I never thought I could.

Jasmine told us her story in August 2024.