LIFELINE FOR LIVING

Jan Poulton, 68, was in her late 30s when she realised something might be wrong with her health. “I noticed my right leg had suddenly started feeling numb, which was affecting my mobility. I had an active job as well as my two children and two dogs to care for, so this obviously wasn’t ideal, and I started to feel quite worried.”

When Jan was 40, she lost her husband unexpectedly. “Around the same time, my symptoms started getting worse, so I went to see a neurologist. He told me it was stress from losing my husband, but I didn’t think that was right. I knew a bit about what conditions could cause my symptoms, but a little bit of knowledge is a dangerous thing and I started to become afraid I had a brain tumour.

“MRIs weren’t as easily given back then, so my parents decided to pay for me to have one to try and find out what was wrong, which I found quite traumatic. Afterwards, the neurologist came to see me and examined me, then he spoke to my parents with the results, despite me being in my 40s! I remember lying there and my mum coming into the room deeply upset. I was convinced I had a brain tumour, but she said, ‘I’m sorry darling, you’ve got multiple sclerosis.’ I thought, ‘Oh, thank goodness,’ because I could work with that and I would still be around for my kids.”

Following her diagnosis of MS, which is a neurological condition affecting the brain and spinal cord and causing a range of symptoms such as muscle stiffness, vision problems, fatigue and problems with thinking and memory, Jan tried to just carry on with her life as normal. “My daughter was 11 and my son was 18 and doing his A-levels, so it wasn’t a good time for the diagnosis. My family and work life were very busy and I had my two children and two dogs to care for. I felt I didn’t have the time to be unwell and that I couldn’t let it impact on my life.

“My children were concerned and my daughter had to grow up quickly with her father dying and then worrying about my health, but I tried to reassure her that I wasn’t worried so she shouldn’t be either. I also refused any MS treatments as I don’t like taking medication, so I carried on like before and didn’t talk about my condition with anyone or tell people I had it.

“My friend had also been diagnosed with MS and would tell people ‘the two of us have got it,’ but I asked her not to tell people about me. I didn’t really want to identify as being someone with MS – it was just an inconvenience, not something that would change my life or who I was.”

As the years went on, Jan found the condition started to have more impact on her health. “I was still quite positive and proactive, but I started to realise that my cognitive skills weren’t what they should be, so I eventually had to leave my job after 35 years. My mobility also started to decline over the years and I needed to start using a wheelchair outside. It also affected what I could do with my grandchildren – who are now eight, seven and six – as I couldn’t join in the walks with them, as there were places I couldn’t always go in a wheelchair.

“I was told I had secondary progressive MS 12 years ago after a lumber puncture. This is a stage that often comes after relapsing remitting MS and means your condition gets steadily worse. Four years ago, I also started taking pregabalin for the pain, which had progressed.”

In December 2021, Jan suffered a relapse. “I was in a terrible state. I couldn’t speak properly, I couldn’t walk and I couldn’t even bathe myself. It was just awful. It also affected the sight in my left eye, so I went to the optician who sent me straight to Derby Hospital after discovering a second blind spot. They told me I had an eye condition you can only get with MS, which was quite hard for me to hear. Until then, I had been in denial, telling myself they had probably got it wrong and it wasn’t MS, but after that diagnosis and the awful relapse, I couldn’t. I suddenly found myself in a really dark place.”

During a visit to her GP shortly after her relapse, Jan was told about the charity MS-UK. “They suggested I phone the helpline, so I did, and I have never looked back! They put me in touch with Sean, one of the counsellors at the telephone counselling service they ran at the time and who I still speak to regularly now. He was absolutely brilliant! I’m not a person who lets things get to me – I’m normally a very positive, strongwilled and busy – but when I had the relapse I really needed to talk to someone.

“It took a few sessions to get me out of that dark place, because for 20 years, I was in denial, but I could tell Sean things I couldn’t tell my family for fear of upsetting them, and he was someone who would listen, understand and not judge, and also let me know I wasn’t alone.”

Jan also began taking part in online chair yoga classes provided by the charity. “I didn’t even know chair yoga existed until the charity told me about it, but the classes have been absolutely wonderful and are a lovely way to start my day. It helps me mentally and has also helped improve my core strength and my balance, so I can walk around my house now without a stick most of the time.”

For Jan, finding the charity has had lifechanging mental and physical benefits. “I’ve done two online mindfulness courses through the charity, which were very helpful and have made me calmer, as I can be quite anxious. I now practise mindfulness before I go to bed and it helps me relax. I have also used the helpline to ask questions about things like medication, and they always give me a helpful and informative answer, even if they have to go off and research it.

“Every person I’ve spoken to has been wonderful and they just take anything that’s weighing you down off your shoulders for a little while and give you a chance to offload. Because of them, I have emerged from the dark place I was in and feel motivated to take on new activities. I now help others through volunteer work with four charities as a telephone befriender, ringing vulnerable people three times a week for a chat. I think the work the charity does is just phenomenal and it has changed my life. I don’t know where I would be without it.”

Amount raised: £10,864

• MS-UK supports people affected by MS, a neurological condition affecting approximately 130,000 people in the UK and causing a range of symptoms, including visual disturbances, neuropathic pain, chronic fatigue and mobility problems.

• It provides a huge number of online activities for a range of abilities, such as chair yoga and mindfulness. It also runs information sessions on a range of topics, such as pregnancy in MS, welfare benefits or managing specific symptoms, and has a website, magazine and booklets packed with information.

• It will use the money raised in the Candis Big Give to fund the charity’s helpline that provides information and emotional support via telephone, email, WhatsApp or LiveChat. The charity employs three staff members with in-depth knowledge of life with MS, who support friends, family, carers and professionals, as well as people living with MS, giving them as much time as they need to discuss the MS journey as it progresses. It will aim to support at least 800 people in 2024, providing trusted information about lifestyle, mental health, symptom management, welfare rights and aids and adaptations.

• Visit ms-uk.org to find out more.

WHAT MS-UK MEANS TO ME

Amy Woolf, chief executive for MS-UK, tells us what makes the charity so special

“MS-UK has really strong values of being non-judgmental, non-biased and a
community-led organisation, which was what really stood out to me ten years ago when I first started working for the charity. It always puts the community first, which means that we speak to the people we support regularly and ask them what it is they need from us, then go about looking at how we can put services and support in place and information out there for them so they can lead the best lives possible.

“This was something we really focused on during the pandemic, when we started putting together what is now a huge range of online activities, working with the community to find out what people needed during this time. The great thing is that all these are now available online to everybody, and people can join in our exercise classes, mindfulness classes or other activities wherever they are. We also run lots of information sessions based on what people tell us they are interested in. There are no taboos and no subjects we won’t talk about throughout our services because we respect everyone’s right to make decisions for themselves about how they want to live with the condition.

“We also live by our values internally, and part of my job is looking after the team, making sure we’re a good employer and looking after the wellbeing of our staff. If the staff are happy and healthy, they can better support the community to be happy and healthy, too – and we see this reflected in our feedback. Hearing how we have made a difference to the people we support and how we are enabling them to take action to be happier and healthier is so rewarding.

“MS is incredibly complex and impacts everybody very differently, so diagnosis is confusing and scary as you never know what the future holds. It can also be difficult to learn to navigate through all the systems and work out how you’re best going to live with the condition. For us, being able to hold people’s hands through that journey and be as people-focused as we are is a real privilege and what makes MS-UK so special.”