Salisbury woman joins national charity campaign to raise awareness of multiple sclerosis
"No one can tell me it will be OK"
Last updated 28th Apr 2022
Two Wiltshire residents are speaking out about living with multiple sclerosis (MS) – as new research from the MS Society shows over two thirds of people living with the condition are scared for the future, as a result of the condition’s unpredictability.
MS damages nerves that control different parts of your body, meaning people experience wide-ranging symptoms – from vision problems to muscle spasms – and everyone’s MS is different. MS symptoms can come and go, and be mild or more severe. No one knows how their condition with progress over time and this uncertainty impacts all aspects of a person’s life.
Over 130,000 people in the UK live with MS, Lauren Robbin from Salisbury is one of them.
The 31 year old was diagnosed with relapsing MS just two months ago in February 2022. She lives with a range of physical and mental symptoms, and worries about how these may develop in the future.
Lauren says:
“I have complete numbness in my right arm and leg, and constant pins and needles down my right-hand side. I have temperature sensitivity so anything cold on my skin is painful and I can’t feel heat. I also experience brain fog, insomnia, fatigue, my skin feels like it is on fire, and I get stabbing pains down my leg. Day-to-day I can plod on but it’s uncomfortable and annoying.
“I worry about my condition deteriorating. Another big worry for me is having children in the future. Thinking ahead is a roller-coaster, as I am aware that I could wake up tomorrow with a new symptom. I like to stay positive but the reality is no one can tell me it will be OK. It’s scary not knowing what my future holds.”
'Unpredictable'
Ian Rendle, 69, from Marlborough, was diagnosed with secondary progressive MS five years ago, but first began experiencing symptoms 20 years ago.
Ian says:
“I’ve got very poor mobility. Over the last couple of years I’ve had to start relying on a walking stick or frame to get around. I’ve got almost no movement in my ankles, so my feet stay at 90 degrees to my leg all the time. Fatigue is a real problem. Most people wake up in the morning and feel refreshed, but with MS I feel like I’ve been running a marathon in the middle of the night.
“MS is so unpredictable that it makes it difficult to plan things. My energy level varies dramatically on a day-to-day basis. I might agree to meeting friends, but then when the day arrives I may not have the energy. I try not to worry about how my MS will progress, but know it will. You know in your heart where it’s heading and there’s nothing I can do to stop it happening. It would send you mad to think about it all the time.”
Isolation and uncertainty
The MS Society survey of 1,200 people with MS revealed half (51%) felt isolated as a result of their unpredictable symptoms, and over three quarters (76%) said the uncertainty of MS was one of the biggest challenges they face. A third (34%) were worried about access to future treatments, over half (56%) said the unpredictability of MS had affected their career, and two thirds (63%) said it stopped them from socialising in the past.
When asked about the uncertainty of MS, over half of people surveyed (51%) said it had affected their friendships, while over a third (39%) said their romantic relationships had been impacted – with one in five (18%) saying they had previously stopped dating.
Sarah Rawlings, Executive Director of Research & External Affairs at the MS Society, says:
“We may all think the future seems uncertain but people with MS have told us an MS diagnosis can feel like a life sentence of uncertainty. MS is unpredictable and different for everyone, and our latest research highlights how this can have an enormous impact on people.
“More than 130,000 people live with MS in the UK, and the MS Society is here for everyone affected by the condition. Our free MS Helpline, online forum and local groups can be an invaluable lifeline if you need support dealing with uncertainty. We also run regular virtual sessions on Living Well with MS which offer emotional and practical support for everyone living with or affected by MS.”
The MS Society says research has got to a 'critical point', its Stop MS Appeal is aiming to raise £100 million to find treatments for everyone with the condition.
You can find out more here www.mssociety.org.uk