A CIRCLE OF SUPPORT

She had just finished university in 1995 when Lisa McAdams noticed a strange tingly feeling in her lower legs. “I went to the GP, who just suggested my Doc Martin boots might be tied too tight! I couldn’t get any further answers, so tried to put it to the back of my mind.”

In 1997, Lisa developed blurred vision in one eye. “My optician referred me to a specialist eye infirmary. The doctor there asked, ‘Have you ever had pins and needles or anything like that?’ and I was like, ‘Oh yeah, it’s funny you’ve asked me that!’ That triggered a series of tests, including an MRI, lumber puncture and a test using electrodes. I was 23 at the time and a bit naïve, and I had no idea what they were looking for.”

In October 1997, Lisa phoned her GP to check on her test results. “I was at work at the time. To my shock, my GP told me they thought I had multiple sclerosis (MS). My immediate thought was, ‘How on Earth do I go home and tell my parents?’ as I was iving with them at the time. It turned out my mum had guessed what they might be testing for, but they were still very, very upset when I delivered the news.”

Following her diagnosis, Lisa tried to find out more about the condition. “I knew nothing about MS so I looked through some booklets, which I found terrifying to read. One of the worst things is that nobody can tell you what might happen in the future, so you have the information that you have about this condition, but you don’t know what to do with it. I went into denial and buried my head in the sand. I would say to everyone ‘I’m determined it won’t affect me’ and put on an act of bravado, and I didn’t want to talk about having MS at all.”

A few weeks after her diagnosis, Lisa had her first proper relapse. “My mobility was really affected so I was struggling with walking, which was quite scary to experience. I was so young and didn’t want people to see me dragging my leg.

However, I had some steroid tablets and after a couple of weeks it passed. “I experienced a couple more relapses over the years, but between them I just lived my life as normal really and nobody looking at me would know there was anything going on with my health at all. I continued like that for about ten years, until my condition started to progress.”

In 2016, Lisa – who had previously had relapsing remitting MS – was diagnosed with secondary progressive MS, which means that disability gets steadily worse. “I had to medically retire in 2018 from my job as a teacher, because my mobility was so affected and I was having issues with= memory and concentration, and I also decided personally that I shouldn’t drive anymore. That had a huge impact, as driving provided a lot of independence.

“I now use a power chair at home and a scooter to go out with as my mobility has declined, and I struggle with fatigue, my balance, and have on-and-off issues with my vision. The difficulty I have doing little things is one of the hardest things for me as, if my hands are very fatigued, I might struggle to do the button up on my trousers, or if I drop something I might struggle to pick it up. Even putting socks on is sometimes a battle, which is very frustrating.

“However, I still get out and live my life, and I’ve got a wonderful husband and little dog, who are my world, and both mine and my husband’s family are also extremely supportive.”

One of the things that has helped Lisa stay positive and overcome some of the challenges of living with MS is the support of MS-UK, which has been a big part of her life since 2018. “I was living in Essex until the end of 2018, and I started going to Josephs Court, which was a wellness centre in Colchester run by the charity. They had MS-specific exercise equipment there, which I really enjoyed using and found beneficial.

“After I moved, I continued to receive their newsletter. When the pandemic hit in 2020, the charity started doing amazing online live exercise groups, which I joined to keep moving. About a year later, I joined a Peer Pod, which are online support groups run by the charity to help people living with MS to connect with others. It was just an absolute breath of fresh air joining this Zoom chat with several people who had MS but who I could talk with about absolutely anything. A lot of the time we were just chatting about our favourite TV show and having a laugh.”

Since then, Lisa has used many of the charity’s services. “I regularly attend the online exercise classes, which I really enjoy. They always offer different levels, including seated classes and ones you can do standing, and the instructors are extremely knowledgeable. When walking is difficult it is so easy to just sit all the time, but these classes are great for getting you doing some good, beneficial movement.

“I have also attended a mindfulness course, which introduced the important concept of being kind to yourself, and online workshops on things like diet, managing medication and the importance of exercise, which provided amazing information and have really helped me to live well with MS. I have also used the telephone helpline a couple of times for advice on making my bathroom more accessible. The person I spoke to was absolutely brilliant and very knowledgeable, and she gave me links and information on looking for grants and things like that.”

In early 2022, Lisa started hosting a women’s Peer Pod. “This has been amazing and really helps me feel less alone. We don’t really have structured things we talk about, but we tend to check in with each person as there’s probably eight to ten people in a group and every person will get an opportunity to talk, and we can all comment on how we’ve been that week or whatever we want to chat about. They’re always safe spaces and if someone doesn’t want to talk, they don’t have to.As with all the Peer Pods, we also have an associated WhatsApp group, so we’re in touch throughout the week.

“I think once I opened up to a group like that, for me personally it also helped me to open up to other people as well, so I’m now much more open about my condition and don’t mind telling people what I have and how it affects me, which is a big change from how I was before.”

For Lisa, the relationships she has formed through the charity have been life changing. “Having MS – or any chronic condition – can feel quite lonely, so having this opportunity to talk to like-minded people who know exactly where you’re coming from and what you’re talking about is a lifesaver. All the people I’ve met through MS-UK – including charity staff and people attending the Peer Pods – I consider friends now. It’s so good to know there’s always someone there to talk to and to have that feeling of friendship and support behind me all the time.”

FUNDRAISING TARGET: £10,000

• MS-UK supports people affected by multiple sclerosis (MS), a neurological condition affecting around 150,000 people in the UK causing a wide range of symptoms including neuropathic pain, visual disturbances, chronic fatigue and mobility problems. The charity helps to improve understanding of MS through its website, information booklets, magazine and MS awareness training for professionals, and supports people to live well with MS through Peer Pods; online activities including exercise classes, mindfulness courses, information sessions and workshops; and its helpline.
• The money raised in the Candis Big Give will help to fund the charity’s national helpline, which supports people with navigating MS and its symptoms. It is available Monday to Friday between 10am-4pm and provides information and emotional support via telephone, email, WhatsApp or LiveChat.
• MS is a complex condition that impacts everyone in different ways. The helpline aims to help people with many of the challenges facing those living with MS. The charity will provide access to emotional support and trusted information about a variety of things including lifestyle changes, mental health, symptom management, accessible holidays, welfare rights and aids and adaptations.
• Visit ms-uk.org to find out more.