Lara's story: "You can emerge in a new way"


27 June 2019

When Lara was diagnosed with MS, she suddenly felt like “the light had changed from green to red.” But now, two years on from that diagnosis, she’s determined to focus on what she can do and not what she can’t. This is her story.

Diagnosis

Two years ago, around Easter, I woke up one day and I couldn’t feel anything from my waist down. 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. I took myself to an osteopath and he took one look at me and sent me to my GP.

My GP knew something wasn’t right. He did a lot of tests on me and then referred me to neurology. I went home, but I ended up back in A&E the next day, because the tingling and the pain had just become unbearable. I stayed in for three nights over Easter, and I was sent for an MRI first thing on Easter morning. I then had a lumbar puncture and I was diagnosed with MS in May 2017.

I was sent some brilliant books by the MS Trust. The information is balanced and not depressing. It’s not 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 own condition.

Coming to terms with my diagnosis

I cried in relief, because you finally know what’s going on, but also in sadness because it’s part of a grieving process. I think we all have pre-conceived ideas about what we want to do with our lives and then suddenly to realise the light is not at green anymore, suddenly it’s at red. 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.

Your whole sense of entity changes when you are diagnosed with MS. I’m Lara. I’m sporty. I run. I do Zumba. I teach music. 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.

But with MS, and it is the same as any autoimmune 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, maintain your friendships and your interests.

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. 

So many MS symptoms are invisible to other people, 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.

Your whole sense of entity changes when you are diagnosed with MS

Living with MS

It was and continues to be a massive learning curve, but I have taken a multi-pronged approach to dealing with my MS. My MS nurse has been absolutely brilliant and she has been the one to guide me down the path of learning about MS and learning to manage it. From the word go, she directed me to the MS Trust and MS Society and told me not to go Googling it because it can scare the living daylights out of you.

I was sent some brilliant books by the MS Trust. The information is balanced and not depressing. It’s not 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 own condition.

A few months ago I called the MS Trust’s Enquiry Service. It has been a really long and difficult winter and I felt really, really low. The lady on the phone 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.

Advice

I would say let it out and have a good cry. It’s terribly sad and we do need to grieve that loss of who we are. 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 and it’s just so fantastic to see people overcoming MS.

I would say also say stick to the approved website. Note down things about your MS and talk to other people with the condition.