Real Life: 'Life takes a different route' says Lara Kingsman after MS diagnosis
By Lydia Parkin
Lara Kingsman has a personality which could light up even the darkest of rooms. Chatting nineteen to the dozen at the kitchen table in her Histon home, swathes of warmth and energy radiate from her. She laughs often, a loud, infectious laugh which instantly makes the day that little bit brighter. “Maintaining a sense of humour is very, very important,” she smiles. “We’re all going through our own stuff - it tends to happen when you hit your late forties – but I try to focus on all the positives in my life.”
You see Lara has been through rather a lot of ‘stuff’ in the last few years and, at times, those positives have been a little harder to find. Two years ago, Lara started experiencing some strange symptoms. “I woke up one day and I couldn’t feel anything from the waist down,” she remembers. “There was this strange numbness and tingling, but my immediate response was to think I had just overdone it on the running – trapped a nerve or something like that.”
Lara went to see an osteopath, not really thinking much of it, “but he took one look at me and sent me to my GP”. Her GP was worried too, “he knew something wasn’t right and I was referred to neurology.”Lara returned home but soon the tingling and pain had become so unbearable that she ended up at Addenbrooke’s in A&E on Easter Sunday. An MRI scan and lumbar puncture followed, and the next month Lara was told the life changing news: she had MS. In that moment, Lara’s sunny, positive demeanour slipped, as a whole range of emotions hit her. “I cried in relief because I finally knew what was going on, but also in sadness. I think we all have a pre-conceived idea about what we want to do with our lives, then to realise the light isn’t green anymore, suddenly it’s red. . .” her voice tails off.
“I’m a wife, I’m a mum of three, and I have older parents. I want to be around to look after people, but then suddenly you’re thrown into a situation where you feel like you’re going to be a burden on other people. I don’t want other people to worry. I want to be around for my kids. All this was going through my head.”
Did she know much about MS at the time? “Up to that point it had been one of those almost unmentionables; people talk about it in hushed voices and you tend to know the worst case scenarios of people having it,” Lara says. “It was and continues to be a massive learning curve for me.”
MS is a lifelong condition that affects the nerves in the brain and spinal cord. 'Sclerosis' means scarring or hardening of tiny patches of tissue. 'Multiple' is added because this happens at more than one place in the brain and/or spinal cord. It can cause a wide variety of symptoms, including eyesight problems, fatigue, mobility problems, bladder and bowel issues, altered sensations and cognitive issues. Symptoms vary greatly from person to person, and it is often referred to as the ‘snowflake’ condition for this very reason. There are around 110,000 people living with MS in the UK.
MS can come in three different forms, relapsing remitting MS, primary progressive MS and secondary progressive MS. Relapsing remitting is the most common and the type that Lara lives with. “So it basically means I’ll have a group of symptoms and might be unwell for a couple of months and then they might improve slightly and I’ll go back to being about 80% as well as I was before the symptoms,” explains Lara. “The thing about relapses is they could be 10 years apart, they could be a month apart, no one can predict what your gaps are going to be like.”
Day to day Lara can experience a range of different symptoms. “I’m constantly tingling; some days it will be hardly noticeable but other days it will be really uncomfortable and painful. One of my biggest symptoms is fatigue, so I just get really ridiculously tired and when I’m having a relapse I might have to spend a month in bed.
“I get dizzy, I get shooting pains in my bladder, and ‘cog fog’ which can be terrifying. One time I couldn’t remember the names of our pets; I could barely string a sentence together and was slurring my speech. It was really, really scary,” she recalls.
Many MS symptoms are invisible. On the surface you could look completely fine, but inside your body is screaming. It can be, Lara admits, incredibly frustrating. “You might walk around a shopping centre and see a person there and not realise the energy, physical and mental, it takes for them to get out there and do that little bit of shopping.”
For Lara, who’s always been a very active and social person, it’s taken a lot of time – and a fair few tears – to realise she can’t do all those things she used to. “Your whole sense of entity changes,” she says. “I’m Lara. I’m sporty, I run, I go to Zumba, I teach music. I was a carer for 14 years and when that caring stopped, I thought, ‘Oh great, I can finally earn some proper money!’ and then this happened…
“I sometimes think, ‘Who am I if I can’t do the things that I’m good at? If I can’t work? If I can’t bring money in? If I can’t be there to support others?’ It breaks my heart sometimes when I’m not in the position to go and watch my children in a performance, help them with homework or be around in the evenings to chat to them.”
On these dark days, when it feels like life has dealt you the cruellest of hands, Lara tries to dwell on the positives. “With MS, and it is the same as any auto-immune condition, you can either let it take you over, or on the days where you have energy you can go out there and do your best; to maintain your friendships and your interests.”
Lara has taken much comfort from the support of the MS Trust, a charity dedicated to making sure nobody in the UK has to manage MS alone. “My MS nurse directed me to the charity from the word go and it has been a fantastic source of support,” she smiles. “They do these great books on MS which are balanced and intelligent, helpful and realistic, and not too depressing! It’s not all fluffy bunnies and everything is going to be great, but it helps you absorb and process it, so you can get to a point where you can manage your condition.”
The charity also has a helpline which people with MS, or their loved-ones, can call if they have a question about the condition. Lara gave it a ring recently and was overwhelmed by the kindness of the person on the end of the line. “It has been a really long and difficult winter and the other day I felt really, really low,” explains Lara. “I called the MS Trust’s Enquiry Service for the first time and the lady was so lovely and so kind – I’m welling up just thinking about it. She listened and she directed me to what I could do and steps I could take and I felt so grateful for that.”
Lara’s MS often means she has to take each day as it comes. Today, she tells me, is an OK day, so she is going out dog walking in the sunshine, “but I’ll take my stick seat with me in case I need to take a break,” she smiles. What would be Lara’s advice for others navigating a diagnosis of MS? “Let it out and have a good old cry. We do need to grieve the loss of who we were. But once you’ve done that, then you can emerge in a new way. Your life will take on a different route to what you expected or anticipated, but there are always brilliant things out there that you can do.”
MS Awareness Week runs from April22-28. Find out more about MS and the work of the MS Trust at mstrust.org.uk
Multiple sclerosis: 10 facts
1. MS is a disease affecting the central nervous system (the brain and spinal cord)
2. Around 110,000 people in the UK have MS
3. MS is the most common condition of the central nervous system affecting young adults
4. MS is a lifelong condition but it is not a terminal illness
5. Everyone's MS is different so no two people will have the same range and severity of symptoms, even if they are closely related
6. MS is more common in countries further north or south from the equator
7. MS is nearly three times more common in women than men
8. It is usually diagnosed when people are in their 20s and 30s but can be diagnosed in younger and older people.
9. MS is not inherited, but family members do have a slightly higher risk of developing MS
10. There are treatments for the symptoms of MS although the condition can’t currently be cured