Life with multiple sclerosis

Multiple sclerosis, MS, is an autoimmune condition that causes white blood cells to attack the myelin sheath which protects the outside of nerve cells. This means that the messages which these neurons are trying to communicate across the central nervous system are disrupted, leading to all sorts of symptoms: from numbness and tingling in the body, to difficulty walking, fatigue, vision problems, and cognitive issues.

MS onset often occurs in the young, and it is one of the most common causes of neurological disability in people aged 20-40. There is, sadly, no cure. Lara Kingsman is a teacher from Cambridge with MS…

Lara - I woke up one day about eight years ago now and I couldn't feel a lot of my body from my waist down so I woke up with strange numbness and tingling all the way around my pelvic area, down my legs and it was quite scary to be honest.

James - I can imagine. What happened next?

Lara - So I was quite fit when I first had these symptoms. I used to be a Zimba instructor and I used to do a fair bit of running and I thought I'd just trapped a nerve in my leg and after about a week the numbness and the tingling were just getting really, really, really uncomfortable. It was quite painful and I was not able to sleep at night so I ended up going in through A&E actually and it was on Easter weekend of 2017 but I ended up being admitted for three nights and they gave me a lumbar puncture which is where they tap and see your spinal fluid and they gave me an MRI on my head and my spine and basically it was from that position that they were able to diagnose that it was multiple sclerosis.

James - Obviously some really difficult news and I think one of the difficult things about MS and other conditions like it is that they're not immediately apparent what you might be going through. The symptoms aren't immediately visible.

Lara - And that's the big conundrum really because to all senses and purposes you look absolutely fine. I look fine. I've walked into this room here. I'm able to drive thankfully but it's the unseen that is so debilitating and I think one of the big factors I found in adjusting to having MS it's not the physical symptoms but it's the mental symptoms. So it really plays on your mind. This is a degenerative condition. I'm not going to get better. I'm fortunate enough that I've been diagnosed with relapsing remitting MS which means I will have relapses and then hopefully stabilise. But I don't know if those relapses are going to happen tomorrow or in 10-15 years time.

James - Talk to me a bit about the difficulties of that and I'm going to pick up on the fact you said you don't really know when or with what force it's going to come back.

Lara - It is really tricky and I think I've learned to live a day at a time and psychologically I think that's the only way you can do it. I've had to pull right back on my work as I've said because I just can't guarantee that I'll be there. Basically if friends invite me to things I say I'm reliably unreliable. I might wake up one day and just find I'm just too fatigued. I can't do it or the tingling is just really getting on my nerves and I need to take a nerve painkiller through the day and just try and sleep it through. So there is this frustration that you can't do what you want to do but also that you are just unreliable and when you've been used to holding down a job but also you want to be there for friends and family you have to almost grieve the person that you were and so your life can become potentially quite small. It can strip you of your identity quite quickly and that means you're vulnerable to depression.

James - How have you tried to manage those potential psychological implications?

Lara - My GP was very good. I make no qualms. I'm on Zitalopram which is an antidepressant and it really helps but most of all I think friends and family have been really supportive and also the MS nurses as well as the neurologists and your consultants which you see and also you're just really grateful for the research that goes on especially in Addenbrooke's where I'm attached to and the dedication of scientists who have poured their life into trying to a find a cure for it but also trying to help people manage their condition through disease modifying treatments.

James - It's really inspiring to hear what a positive spin you're able to put on your diagnosis and the good that you can see that's being done to help those with it. I want to touch briefly on treatments because that's what we'll come back to later on in the programme. You mentioned things to manage the psychological aspects of the condition in terms of anything else on the physical side.

Lara - So I'm on a disease modifying drug called Tecfidera which basically helps stop the myelin sheaths around your nerve endings breaking down and I've been on it for nearly six years now and I'm so so grateful to be on it because you feel like you're a sitting duck sometimes without treatments. Some people decide not to go on to treatments and that's fine. All treatments have side effects and you have to learn to live with those but mine's just a tablet I take twice a day and I've gotten really well with that. I also take pregabalin which is a nerve painkiller and I take it at night.

I'd rather not be on it, it has side effects. So those are yeah the drugs that I'm on.

James - Thank you so much for speaking to me being so open. It's really inspiring to hear you speak about what must have been a really difficult time.

Lara - Thank you it's a pleasure to come and chat to you thank you James.