Dundee dad Steven Hill’s life changed after he was diagnosed with relapsing remitting Multiple Sclerosis (RRMS).
The 37-year-old had to give up his full time job as a manager at Phones 4u following his diagnosis in 2019.
But now he focuses on raising his two children Ryan, 6, and George, 10, with wife Zara while continuing to raise awareness of his condition.
“My MS doesn’t really impact on Ryan and George very much but they are aware of it,” he says.
“I tell them I have a broken brain so if I am having a bad day they understand.
“They are a bit too young to try and explain to them exactly what MS is.
“I am very active with them though.
“People might think because I have a disability it means I am limited to what I can do.
“But I’m not.
“It’s not a muscular disease – it doesn’t affect my muscles.
“It’s my nervous system so it affects the signals going from my brain to the muscles – that is the issue.”
First symptoms of MS
Multiple sclerosis (MS) is a condition that can affect the brain and spinal cord, causing problems with vision, arm or leg movement, sensation or balance.
Steven has relapsing remitting MS. With this type, he has flare-ups of the disease, or relapses.
Between these flare-ups, there are periods of recovery, or remissions.
Steven explains that he first started experiencing MS symptoms in 2013.
“The first symptoms I had were pins and needles in my feet,” he says.
“I had them for four days consistently. I went to see my GP and I was sent for tests which included MRIs and lumbar punctures.
“The results came back normal showing I had healthy cells so there was nothing there to diagnose MS at that point.
“But I was also having problems with back pain and the MRI showed I had wearing on the nerve endings of my spine.
“I later read that this can be a sign of the first stages of MS.”
He continues: “I struggled to stand on my feet for long periods and it ended up with the GP signing me off work for 10 months.
“Eventually I had to give up work completely.”
When was Steven diagnosed with MS?
In 2019 Steven had to go back to the doctors after he started getting pains in his chest.
He also had extreme tiredness.
“I was experiencing what is known as the ‘MS hug’,” he explains.
“It feels like someone is squeezing your chest from behind like a bear hug and the chest feels really tight as a result.
“I ended up getting referred to Ninewells Hospital for tests.
“An MRI showed I had around 50 lesions on my brain.”
Lesions are damaged areas of the body and MS causes lesions in the brain or spinal cord.
He adds: “From that they diagnosed I had MS.”
He has since gone on to receive six monthly infusions of antibiotics and steroids to prevent his condition from deteriorating.
Family life in Dundee
For the past few years Steven has been focussed on family life with wife Zara and their two sons.
Ryan and George both attend Craigowl Primary School in the city.
Steven enjoys spending time with his sons.
“They do kickboxing, swimming and badminton and I take them to all that kind of stuff,” he says.
“I also do a lot of walking with our dog Skye and I take them with me.
“I enjoy having a carry on with them (his children) at home too and wrestling with them. My condition doesn’t affect me doing things like that.
“I enjoy family life and love being a dad.”
Making adaptions on bad days
Steven’s wife Zara, 36, works as a nurse at Ninewells Hospital in Dundee.
She said family life can be affected when her husband has bad days with his MS.
His condition includes back pain, pins and needles all over his body as well as shooting pains in his body and legs.
“When Stevie is having a bad day, where he has maybe overexerted himself, we just adapt,” she says.
“We will be very honest with the kids so if dad is having a bad day and can’t do what we had planned, we tell them we are going to do something else.
“Sometimes they struggle to understand why, but generally they are really good.”
Zara continues: “Stevie doesn’t let his condition define him – he just powers through, which is amazing.
“He is still the same man I fell in love with 15 years ago.
“He is a brilliant partner and a brilliant dad.”
Steven’s fear of going blind
While Steven tries not to worry about the future, the one thing he is fearful of is going blind as a result of his condition.
His last flare up was in 2022 when he lost 90% of his vision in his left eye.
“It was really scary when that happened.
“I lost 90% of my vision in that eye for around three months. It did come back but my vision is still a bit blurry.”
He continues: “My worst fear would be going completely blind and not being able to see my kids grow up.
“Not being able to see what they look like as adults or being able to see my grandkids if they have any.
“This is the one thing I would never want.”
Zara said she was finishing her nursing training when Stevie lost his eyesight.
“When that happened I thought about taking a step back from work but we had amazing help from friends and family for that three months.
“Everyone stepped up and helped us especially to get the kids to places they needed to go to.
“I don’t think we would be where we are today without their help.
“We are very fortunate that Stevie’s condition is pretty stable at the moment in that he is mobile and his vision has come back.
“He is still able to spend time playing with his kids and going out for walks every day. So I think we just have to take every day as it comes.”
Fundraising activities for charity
Steven is passionate about fundraising for MS.
Next month he is joining a group from the Multiple Sclerosis Trust to climb Snowdon in Wales during the night – seeing both sunrise and sunset.
He hopes to raise £700 for the charity.
This comes after he completed a fundraising skydive in St Andrews in February this year when he collected £860 for the Multiple Sclerosis Society.
Zara said: “What he is doing for charity is amazing.
“I’m very proud of him.”
She added: “We don’t know what the next month or ten years will bring.
“But if things do progress with Stevie’s condition, we will find a way to make it work with the support of everyone we have around us.”
To make a donation to Steven’s fundraising Snowdon climb visit here.
Conversation