WAKING to the sound of her newborn crying – Rosie Jones stepped from her bed.
Legs buckling, she crumpled to the carpet too weak to walk – crawling to reach the crib of her howling baby.
Thinking the episode was the result of new mum exhaustion, she put it to the back of her mind – until she almost dropped her tiny baby weeks later, as her arms failed.
The truth was more terrifying than sleep-deprivation – Rosie, now 34, was suffering with multiple sclerosis a degenerative disease of the nervous system.
The life-long condition can affect the brain and spinal cord, potentially affecting vision, limb movement and can sometimes cause serious disability and a reduced life expectancy.
But rather than be furious at this diagnosis – incredibly Rosie felt grateful although Hazel’s traumatic birth could have triggered her illness.
She believes this prognosis made her a stronger mum.
Rosie, an occupational therapist, says: “It sounds strange but I believe having MS has made me a better mum.
“It has made me accept the lessons all new mothers need to learn: ask for help from family, friends and professionals and look after your own health for the sake of your baby.”
Rosie, married to sailor Danny, 30, was delighted to discover she was expecting in 2016.
She says: “I was surprised as we conceived within weeks of deciding to try for a baby. I loved being pregnant. I loved being spoiled by my family and milked all the attention.”
Hazel's birth was half magical, half horrific
But Hazel’s birth in August 2016 was traumatic.
Rosie remembers: “I was in labour for a long time and lost a dangerous amount of blood.
“It was half magical with this beautiful baby, half horrific because I felt so battered and bruised.
“Danny cuddled her first because I was so unwell. I ended up with a bad infection.”
It was eight weeks after giving birth that Rosie noticed problems in her body.
She says: “When my legs buckled, eight weeks post-partum, I had to kneel to get Hazel out of her moses basket to cuddle her and the next morning, when my legs were fine, I put it down to exhaustion.
“But two weeks later I was breastfeeding Hazel, when she began to slip from my arms. I was horrified.
“I didn’t have the strength to cradle her.
“I wrote the episodes off as me being a worn-out new mum.
“Danny was Superdad, so I felt supported but constantly tired.
“I had been a keen swimmer but when I got back in the pool six months after giving birth, my muscles felt too weak to swim.
“When Hazel was eight months my feet went numb. My GP said: ‘Your feet will have grown during pregnancy. Buy bigger shoes.’
“I did, but my feet stayed numb.”
Rosie’s symptoms got worse over time.
She says: “People with MS often feel they are dismissed by GPs for complaining about minor ailments but I didn’t want to take up their time.
“I began suffering shooting pains in parts of my body.
“I struggled with what I now know is called the ‘MS hug’ a lovely way of describing a painful crushing feeling around my torso. I also felt so dizzy sometimes, I couldn’t walk.”
I couldn't hold my baby – but I thought it was just new-mum exhaustion
Rosie became reclusive.
She says: “When Danny was at sea I isolated myself. I stopped going to a local baby group because it was up a hill. I took Hazel to a nearby aquarium every day for six months because I wouldn’t have to ‘keep up’ with other parents.
“The pressure I put on myself to be a perfect mum was so strong I just assumed others dealt with it better than me.”
When Hazel was 12-months-old, Rosie was living in Helensborough, Scotland, 250 miles from her family home in Leeds, Yorkshire.
Her Mum was visiting when she suddenly lost vision in her left eye.
Rosie says: “The opticians did tests, then said: “This could be multiple sclerosis.’
“Suddenly the exhaustion, numbness and pain made sense. I knew I had MS. I felt helpless.
“I had an MRI scan at the Gartnavel General Hospital, Glasgow, and was told to come back when a neurologist had looked at the results.
“It was seven months later, after chasing the hospital, that I sat in a consultant’s clinic.
“He said: ‘We were thinking multiple sclerosis, and that’s what it is.’
“I’d been through all the shock already, by myself, so I didn’t really feel anything.
“Mum was great, she said: ‘Right I’m here for you, what do we do next?’"
What is multiple sclerosis (MS)
Exactly what causes MS is unknown, but it is suggested that the condition occurs from a mixture of genetic and environmental factors.
MS is an autoimmune condition. This means that the body's immune system (designed to fight any infection or foreign body in your system) mistakes an area of the body for a threat and attacks it.
In the case of MS, the most common areas for the immune system to fight are the myelin sheaths (layers that cover and protect your nerves while also helping them transmit signals around the body) in the brain and/or spinal cord.
There are three main types of MS that a person can develop:
- Relapsing-remitting MS – where people have distinct attacks of symptoms which come and go. Around 85 per cent of people have this type
- Primary progressive MS – this type affects about 10-15 per cent of those diagnosed (generally those diagnosed in their 50s) and it means that the condition continues to get progressively worse
- Secondary progressive MS – neurologists generally agree that this is a "sustained build-up of disability, independent of any relapses" according to MS Society
Grief took hours to hit Rosie.
She says: “The sadness came later. I’d think: “What will I do if I have a relapse and can’t walk while Danny is away, who will look after Hazel?”
“I had nightmares of wheelchairs, incontinence and not working.
“When Danny returned from sea three weeks later he put all his energy into making us stable and safe, we moved to Leeds, so I could be near my family.
“I was put on Tysabri, a hard-hitting drug for active relapsing MS, “relapses” are what doctors call the episodes
“I have fewer, less severe relapses, but still feel extreme tiredness.”
Rosie did not let the diagnosis stop her, instead she reached out to other parents with similar diagnoses – to offer help.
She says: “Searching online for ways to play with Hazel when I’m shattered led me to the charity shift.ms, which links up newly-diagnosed younger people.
“Mums with the condition gave me great parenting advice.
“MS affects three times more women than men and is diagnosed most frequently in the 20s and 30s.
“The cause is unknown. My neurologist said it was probably a mix of factors triggered by the trauma of Hazel’s birth.”
Hazel, four, comprehends the basics of her mum’s illness.
Rosie says: “Hazel understands Mummy is ‘different.’
“She has learned she can get away with things by being like Mummy. She lies on the sofa and says dramatically: ‘I am HAVING a rest,’ when she doesn’t want to eat her broccoli.
“MS and motherhood is challenging, but shouldn’t be scary.
Common symptoms of MS
- Vision problems
- Numbness and tingling
- Muscle spasms, stiffness and weakness
- Mobility problems
- Problems with thinking, learning and planning
- Depression and anxiety
- Sexual problems
- Bladder problems
- Bowel problems
- Speech and swallowing difficulties
“I can honestly say I’m happier than I was before all this.
“In my case, trauma created life and empowered me.”
Watch Rosie chatting with other MS mums at shift.ms ‘My Baby and Me’.
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