In Her Words… MS: My Story by Emma Gibbs

Emma Gibbs is 36 and lives in south west London with her husband and son. She works in the Press Office at London Fire Brigade. 
Emma was diagnosed with multiple sclerosis (MS) in 2013 and is keen to raise awareness of the condition, which 100,000 people suffer from in the UK. 

MS: My Story

2013 was a memorable year for me in several ways – a life-changing year of incredible highs and devastating lows. The headlines were: getting engaged, getting married, getting MS and falling pregnant.

Before 2013 I’d never really paid much attention to Multiple Sclerosis (MS), didn’t even really know what it was. So when I was told, two weeks after my honeymoon and six weeks before falling pregnant with my first baby, that I had it, I felt like I’d been hit by a bus.

My husband, Phil, proposed to me in February 2013 and once I had that ring on my finger the wedding planning began in earnest, with the big day booked for just six months later. Amidst the frantic planning, I decided to get fit and lose some weight. I took up running, but something weird started happening to my left leg: it became numb and dead, making running really difficult. That coupled with persistent pins and needles, and a slight tremor in my left hand was enough to send me off to the doctors, who duly told me that there was nothing wrong and it would go away. After a near-miss at a tube station, where my legs gave way and I nearly fell down some stairs, I went back and was finally taken seriously and referred to a neurologist for further tests.

A week or so after returning from an amazing honeymoon in Madagascar, where I remember lying on a tropical island, wondering why my feet felt like they’d been left in the deep-freeze, I was sent for an MRI scan of my brain. I was very swiftly called back to see the neurologist who delivered the devastating news that I had MS. I was told I had the ‘relapsing-remitting’ form of the disease, which means that you can be hit by some symptoms, which can then improve and recede, and then you can be ‘fine’ again for a few months, until the next attack strikes.

I wasn’t sure how to deal with the diagnosis of an illness that I knew nothing about. I knew it was bad, would be life-changing, and could mean I’d end up disabled, and that was about it. I felt like I’d been dropped down a well and was unable to get out. And I think one of the hardest parts of my diagnosis was telling those close to me – it was so hard dealing with other peoples’ reactions before I’d even worked out how I felt about it myself.

Before I began to understand a bit more about MS, and that stress can trigger symptoms, I was hit by a series of relapses in a very short space of time: I had blurred vision for a few weeks, suffered from poor balance and problems walking, but the worst symptom was excruciating pains down my left arm and down the left side of my face. I’d been fortunate to reach the age of 33 without ever really experiencing pain, but this was something else – breathtaking and exquisite in its absolute intensity. The pain came and went up to 20 times or more during an hour and when it struck, it rendered me unable to think, move or speak.

And then suddenly, in the midst of dealing with the physical and emotional fall-out of MS, I fell pregnant. We were both beyond happy, and thank goodness had something positive to focus on, but unfortunately my relapse and pain continued for six months of my pregnancy, which made life difficult as I couldn’t take any medication. Although, on the plus side – by the time it came to giving birth I was pretty experienced at dealing with pain, and delivered my 9lb son without drugs or any problems!

It was around this time I ‘found’ mindfulness, which has proven to be the most helpful thing in helping me to deal with things. I learnt the benefits of staying in the moment, rather than worrying about the past or the future – a vital coping mechanism when living with a condition as uncertain as MS.

Another positive thing to come out of my diagnosis was the opportunity to meet some lovely people: others living with MS, and those who volunteer to help people with the condition. With an almost-two-year-old I’m strapped for time, but when time allows I volunteer for my local branch of the MS Society in Lambeth and Southwark, partly motivated by selfish reasons – to meet others with MS, and also to try and help those being newly diagnosed with the condition as I know just what a devastating experience this can be.

So what next? MS has left me with some weakness down my left arm and leg and quite numb feet – these residual symptoms, caused by nerve damage, are unlikely to go away, as well as bouts of fatigue which can leave me exhausted. I can’t possibly know what my future holds, but after an initial period of grieving and dealing with the diagnosis, I am now feeling much stronger and more positive. Living with a long-term condition has certainly given me a new-found appreciation for all the good things I have going for me – my family, friends, home and job and something as simple as a walk in the park on a sunny day is something I no longer take for granted. I can’t possibly know how I will be in in five, ten or twenty years time, which is why I’m even more certain of the need to enjoy every day as much as I possibly can right now.

What is MS?

MS is a neurological condition which affects around 100,000 people in the UK and most people are diagnosed between the ages of 20-40. A condition of the central nervous system (brain and spine), the symptoms of MS are caused by the body’s immune system attacking the protective coating around nerves. As the central nervous system links everything the body does, many different symptoms can appear in MS. The specific symptoms depend upon which part of the central nervous system is affected and the job of the damaged nerve. There is no known cause and currently no cure.

You can read more about MS on the MS Society’s website.