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.

The Black Dog and the Terrier by Lou Morgan

Lou MorganLou Morgan is a YA & genre novelist and short story writer. Her two urban fantasy novels, the “Blood & Feathers” books have been nominated for several awards, and her short stories have covered everything from sentient teenage zombies to Arthurian legend and lost streets in London. Her first YA novel, “Sleepless” is published by Stripes, and follows a group of students at an exclusive school after they take an illegal study drug.
She has written articles for genre magazines including SFX and the Guardian’s Children’s Books section, and is a long- and short-list reader for the Bath Novel Award. She lives in Bath with her family. You can find her on Twitter @LouMorgan or at https://loummorgan.wordpress.com 

In Her Words: The Black Dog & the Terrier

When I was 19 and studying English at university in London, I lost a year. If I think back, looking for memories, there’s almost nothing; it’s like swimming through fog. Sometimes I wonder why – and then I remember. That was the first time I lost my mind… and it was only when I found myself at the side of the Round Pond in Kensington Gardens, wondering whether it was deep enough to drown myself in that I realised something was very, very wrong.

When I was about 13, my GP father was diagnosed with manic depression (or bipolar disorder, as it’s now more commonly known) and the summer I was 18, he attempted suicide through an overdose of his medication. I won’t ever forget that night, or the following hours sitting in the hospital’s family room while he was in intensive care; tubes pumping different poisons into and out of him. I will never, ever forget the sound he made when he finally woke up again. It took a week in intensive care to pull him back to the world of the living.

And there I was, less than 12 months later, standing at an edge of my own and with no idea how I had got there… either literally or metaphorically.

This – knowing I was 19, knowing I was suicidal – is about the sum of my memories of that year. Without understanding it I had slowly slipped into the jaws of the kind of depression that devours you. As anyone who’s suffered from clinical depression can tell you, it’s not a case of feeling a bit down: it’s a systematic and complete dismantling of everything you are. I had lost my mind, my self… and probably very nearly my life.

In what I suppose you’d call a moment of clarity, I rang my parents and within minutes of my putting the phone down, I’m told they were in the car and driving from Wales to London to bring me home; bring me back – however you want to look at it.

I start having memories again after that. Not what you’d call “proper” ones and not immediately, but patches here and there. I remember the medication the family GP prescribed, and how sick it made me for 24 awful, awful hours. I remember being absolutely convinced that the top of my head was going to float away, so I spent the next fortnight wearing a beanie hat because that was the most logical way of stopping it. Obviously.

The first clear, sharp memory I have after finding myself at the edge of a pond is of the three goldfish we bought that summer and installed in a tank on our kitchen table: my parents said it was the first time I’d smiled since they’d brought me home. Those goldfish lasted for years. Well. Two of them did, anyway…

Just like that, I was suddenly Manic Depression Girl. (She’s a bit like Manic Pixie Dream Girl, only harder work and less fun.) When I was diagnosed with the same illness as my father, I felt sick and – more than that – I felt very, very afraid. Can you blame me, with the memory of all those tubes being one of the last tangible things I had laid down in my brain? With a certain degree of gallows humour, I’ve since discovered it’s possible that it runs in the family: my great-grandmother on my father’s side apparently died of “melancholy”. I didn’t even know that was a thing outside of Gothic novels, but you learn something every day, so.

I returned to university in the autumn, almost feeling like myself again, and the staff in my department went out of their way to help me find my feet. I was lucky. I was lucky to have a family GP who knew my background. I was lucky to have support and access to medication that worked exactly how it was supposed to, first time. I was lucky to have people around me who knew what was happening to the chemicals in my head and what that meant. All that luck, and I still felt incredibly alone.

It’s a frightening thought, knowing that you’re not completely in control of your own mind – and the worst part is that as you get better you look back and you can’t remember when it started. Was it a Tuesday? Was it a Thursday? Was it a week ago, a month ago; two? How long weren’t you “you”? Could the people around you tell that you’d been replaced by someone else; someone who looked like you and talked like you… but wasn’t? Can you ever trust yourself completely after that?

But if the “depressive” side of manic depression is a big black dog with claws and ever-open jaws, the mania is a small, yappy, overly-aggressive and under-trained terrier which likes to get in everyone’s face. It doesn’t need sleep and it moves so fast that it’s impossible to keep up. I always know when the mania is taking off because I start to stammer when I speak – not always noticeably to anyone else, but I can hear it – as my mouth fails to keep pace with the frantic whirring of my brain. A full-blown manic phase is an Icarus, and it wants nothing less than to drag me up to the sun with it. And we all know how that particular story ends.

Through it all, my luck has held. When I relapsed in spectacular style, I was fast-tracked to a newly-qualified CBT therapist, Sanjay, who – I am absolutely sure – saved my life. Even now, every January as regularly as a clock chiming, I’m summoned to the surgery where I’m registered to see my GP and make sure I’m still somewhere in the general vicinity of sane. (Although, you know… January…)

I would not be here without those people and the work they do within the NHS and I am grateful to them every single day. There are so many others who have been through similar experiences but who haven’t been as lucky as I have; I count several friends among their number.

But I am still here. I pinball from high to low and every kind of sideways in between. I can’t always trust that I know myself: after any kind of social event, I interrogate my husband to see whether I was “alright”: did the terrier make an appearance, or did anyone spot the large gloomy shape dragging behind me out of the corner of their eye?

I have to check, you see. I have to. I have to make sure that I’m still the one driving the bus; that I’m still me. And maybe that sounds strange, but that’s what it comes down to. That’s what scares me, losing my mind – and not being able to tell the difference.

Because if it happens, when it happens, how would you know? I didn’t. Twice.

But what’s changed is that now I think – I hope – that next time, if and when it comes, I will. And just like last time and the time before, when it’s over, I’ll be able to look back and say: I’m still here.

And then, I’ll get on with living.

If you need to talk…

MIND – for education and support on mental health issues: 0300 123 3393 / mind.org.uk
CALM – the Campaign Against Living Miserably, CALM seeks to prevent male suicide by offering support to men in the UK who need it: 0800 58 58 58 / thecalmzone.net
The Samaritans – 24 hour, non-judgemental support for anyone who needs someone to listen: 116 123 / samaritans.org

Right Now I’m…
Watching: Peaky Blinders seasons 1 & 2. It’s a whole world and it’s incredibly atmospheric.
Reading: Curtis Sittenfeld’s “Pride & Prejudice” update, “Eligible”. Mr Darcy as a surgeon in Cincinnati – who’d have thought?
Listening to: the “Hamilton” Broadway cast recording. Over and over and over. Yes, I know I probably have a problem.

Pass it on:
Who would you most like to see featured on this blog?
– My incredible literary agent (wise beyond belief and owner of the most infamous cats in publishing) Juliet Mushens, @mushenska.
– Filmmaker and writer Abigail Blackmore, @snaxhanso.
– Author (of the inspirational and very funny “How to be a Heroine”) and playwright Samantha Ellis, @SamanthaEllis27.

Up & Coming… Flo Fairweather

Flo FairweatherFlo Fairweather is a freelance designer.

She graduated from the Chelsea College of Art in 2015 and currently lives in Streatham, London.

How did you end up doing the job you do?
I did Art and Photography A levels, and couldn’t decide what degree to do; whether to go down a fine art, illustration or photographic route.  Graphic communications seemed to combine many of my interests. We were given a series of industry briefs and able to respond in any medium we chose. Some chose film or graphic design, my response was usually photographic. I haven’t looked back.

What are you working on right now?
Right now I am organizing Brixton Youth Design Trail, which is taking place on the 17th-25th September 2016. It’s a series of open briefs, talks, commissions and events for and by 16-25 year olds.
I am also working as a freelancer. I work at a production agency, designing treatments for art directors. I’ve just finished designing packaging for a coffee company, which is being produced now.  I also do my own work and I make music on the side https://soundcloud.com/flo-fairweather

Describe your first job
It was at a pub. I had quite the knack for dropping people’s change in their drinks…

What would was your B plan if this career didn’t work out?
World conquering pop star.

Who or what has been your biggest source of inspiration to date?
I’m not sure about biggest, but I did visit César Manrique’s house in Lanzarote this year, which is inspiring me at the moment.

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Who would you most like to work with?
Cindy Sherman. I have admired her since I was young. I love the humour and transformative nature of her work. In the age of the ‘selfie’ I think people find it easy to disregard self portraiture as a powerful art form.

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Where do you feel most inspired?
Anywhere I haven’t been before, places I can look at with fresh eyes.

What did you want to be when you were little?
An archaeologist. I used to be given those sand brick toys, where you’d scratch out these miniature dinosaur bones. I thought they were real and that I was really helping to make significant discoveries.

What advice would you give your children (or nieces/nephews/young people)?
Make the most of the playtime you have and make loads of mess.

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What has been your career highlight to date?
Winning my D&AD New Blood pencil last year. These awards are open to young creatives with a view to offering a way into the design industry – companies set industry standard briefs and students or recent graduates are invited to respond. Last year I won a graphite pencil for an Ident I created for VICE, for their ‘rule britannia’ series of films.

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Which one thing would you like to change about your industry/working life?
I would like to spend less time looking at a screen and make more fun objects.

Who is your favourite fictional female character?
Sue White from Green Wing.

Right Now I’m…
Watching: Broad City
Reading: ‘Girls will be Girls’ by Emer O’Toole
Listening to: The Sugarcubes

Pass it on:
Who would you most like to see featured on this blog?
Olivia Bohac
Twitter @_Oliviabohac

Joanna Kiely
Twitter: @Joanna_Kate
Instagram: @jofanna

Alice Lees
Twitter @alicelees_
Instagram: @aliceblees_

Keep up with Flo at www.flofairweather.co.uk and on Twitter @Flofairweather

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