'I don't want my multiple sclerosis to win'

2 hours ago

Susie RackWest Midlands

Heather Daly was diagnosed with rapidly evolving severe relapsing remitting MS in 2014

Heather Daly A woman in a black top sits in a restaurant on a brown leather bench. She has blond hair partially tied back and is smiling widely. — Heather Daly was diagnosed with rapidly evolving severe relapsing remitting MS in 2014

A woman who has multiple sclerosis (MS) has said she is determined not to let the disease beat her.

Heather Daly, 49, from Shirley, Solihull, was shocked when she was diagnosed with the neurological condition 14 years ago after experiencing issues moving her leg.

Despite the progression of her MS, she refuses to let her daily struggles define her and is keen to tell others with the condition that they are not alone.

"I don't want my MS to win," she said. "You just have to be strong and resilient because it can pull you down a plug hole and I don't want to go back to where I was."

MS is a lifelong condition that impacts the brain and nervous system, with a wide variety of symptoms that can include fatigue, pins and needles, memory problems and muscle spasms.

It happens when the immune system mistakenly attacks the central nervous system, causing damage, and while it can be managed through treatment, there is no cure.

It is estimated more than 150,000 people in the UK have MS, which is about three times more common in women than in men, according to the MS Trust.

Daly said she "completely shut down" for years after her diagnosis

Heather Daly A selfie of a woman with bobbed white-blonde hair stands in a kitchen with pale grey cabinets behind her. She has blue eyes and is half-smiling with her mouth closed. — Daly said she "completely shut down" for years after her diagnosis

Daly first experienced symptoms in 2014, but put it down to "a funny turn".

"I'd take the dogs for a walk and my head would just go fuzzy and my brain wouldn't talk to my right leg to move it, so I would have to stand still until it passed."

Her husband Tony urged her to see her GP and diagnosis came quickly after an urgent neurology referral and MRI scan.

"My whole world just came crashing down," she said. "Tony and the girls just sort of lost me for five years.

"I didn't know how it was going to pan out, and it just really scared me."

'Completely zoned out'

She was put on monthly medication to slow the MS progression, but it did not help with existing scarring to her brain and spinal cord.

Battling fatigue, cognitive problems and debilitating nerve pain, she was also prescribed antidepressants.

She credits her family for helping her through that challenging time.

"I don't think I was depressed, I was just trying to work out everything in my head," she said.

"It was when my husband and the girls said 'you're completely zoned out, we need to change that'.

"I just thought I need to get some sort of life back."

The mum-of-two said she would not have coped without the support of her husband, Tony

Heather Daly A couple stand in a kitchen with a bifold door and garden behind them. The man is wearing a blue polo neck top, is bald, and has wire framed glasses. She has white blonde hair shoulder length hair in a centre parting. A whirligig and shed can be seen in the garden beyond, and wooden fences either side. — The mum-of-two said she would not have coped without the support of her husband, Tony

Three years ago, MS-related brain damage led to epilepsy and Heather was forced to give up driving.

With her symptoms fluctuating, she never knows what the day will bring until she gets up.

"If I walk too far, the pain is horrendous. If I do too much, the fatigue is horrendous and then that brings on my pain," she said.

She is also weary of arguments over why she should have a blue badge, or the key to a disabled toilet.

"A strong sense of loneliness can come with invisible illnesses," she said. "Strangers in the street, in car parks, they just look at you as if there's nothing wrong with you."

"You're completely broken, but you put a facade on that you're fine."

'It doesn't define you'

For her own wellbeing, she now practices daily positive affirmations. She has also started an Instagram page to chronicle her journey, and returned to work as a nail technician.

She feels lucky to have "a lovely MS nurse" at Queen Elizabeth Hospital in Birmingham who lifts her spirits.

"I don't feel as bad walking away from the hospital... I come out feeling better than if it was just doom, doom, doom."

She has found the MS Trust helpline and Facebook community helpful, and is working with the charity to tell other people with MS: "I know what you're going through.

"You might have MS, but you're not going to let it win, and it doesn't define who you are.

"I think if I can just help one person who's feeling like I was feeling, then my job's done."

Lucy Taylor, CEO of the MS Trust, praised Daly for "helping people with MS feel seen and supported, whilst reminding them that their experiences are valid and deserve to be talked about".

"MS can be an invisible condition, and symptoms like pain, fatigue and cognitive challenges may not always be seen by others, yet they shape daily life in profound ways," she added.

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