Sunday, 13 September 2015

Living with MS speech

Let's be honest

Firstly, like most conversations between people with MS, or a connection to MS, I'll start with the basics.
I have MS, and was diagnosed in March 2009, six months after my engagement to my now husband Joe, and a year before our wedding day.
It was a genuine shock to hear the words, 'I think you have MS'.

I am a journalist, working at the Derry Journal. I'm proud of my job and I love the busy newsroom, the pressure of deadlines and most of all, meeting people who trust me to tell their stories.

Way back when I started, over ten years ago, I noticed that it was MS Awareness Week and thought a two page spread on the illness would be a good feature. Stories don't always fall in our laps and after a few phone calls, I was chatting to Terry McNamee, the local Development Officer at the MS Society Foyle Branch.

An interesting feature followed, and it's fair to say I walked away from my work that week much more knowledgable about the condition - and also in awe of those who lived with MS day in, day out.

I also grew up knowing that a family friend had MS, so it's fair to say that I knew enough about MS to feel a bit terrified when doctors thought I too might have it.

Yet, I also took some comfort from the fact that I had witnessed first hand that while MS was not something that was easy to live with, that it could also be liveable with.
That's what I clung onto in those early days - and I genuinely believe that it's this positive perspective that has helped me get to where I am today - intact, and I would like to think, with the same spirit. 

However I found that the information I really wanted in those first days and weeks wasn't readily available - I wanted to know how other people my age were coping, I wanted real life stories. 

And that's why I started my blog - a life coping with MS - I wanted to document what I was going through, and maybe help someone else in the future see that a diagnosis of MS doesn't mean giving up on your dreams - just changing how you achieve them. 

I guess that's why the MS Society team have asked me to talk today, because I have thrown myself into raising awareness and fundraising since my diagnosis. I also got involved with the MS Society some years back when I took part in an information video about pregnancy and MS for the website - filming the very day I went into labour, but that's another story for another day! 

I've also spoken at the MS Life event in Manchester and this year have been co-opted into the NI Council. 

But back to my diagnosis ...  I would be lying if I omitted to tell you that that first year was incredibly tough. 

As I mentioned at the start, my wedding day was planned for  a year later and it was supposed to be the start of the rest of life. On some days that felt far from possible.

I was out with a friend - looking for her wedding dress incidentally - when I first thought my feet felt funny. I thought maybe my shoes were tight but the sensation niggled at me until I had to face facts. My left foot was numb and tingly, and had pins and needles, and felt as though worms were wriggling under my skin ... anyone nodding their heads in agreement here? Aren't they the funniest sensations, to all be happening at once, with no descriptive word adequate enough to put into words how it actually feels? 

I was soon to learn that many symptoms that appear on that never ending list you first read about, are hard to quantify. They can be so slight that you start to doubt you even noticed it in the first place, and then so severe you wonder if it's ever going to end.

In time, I've learnt to listen to my body and recognise when a relapse is taking over, when I need to rest and then, on the other hand, when I can live normally - as long as I keep the medication going.

Talking of medication, I have another confession - this talk is entitled Let's Be Honest after all - but it's not something I'm proud of. When it comes to injecting my daily DMD of choice Copaxone, I've been known to miss one or two. And it's not because i'm scared of it, because two years down the line it's actually become really normal, but it's because I simply forget. Life is too busy, too hectic, too exciting - and I just forget.

But I think my Ms nurse would allow that odd lapse in remembering because isn't it the best excuse to be able to say, life is too fun and busy that I forgot. The same stands for MS. When I can I like to try and forget I have it, I like to live a day with it not at the forefront of my mind.

That in itself can be hard. Because my bladder doesn't play ball all the time - isn't MS glamorous! - and that's despite the medication I take to control the frequency and on occasion, urgency issues too. On top of that my fatigue levels differ daily, making plans hard to make and on the days I am up and at it, hard to get to the end of.

Thankfully though the one thing MS hasn't taken away from me was my chance to become a mother. As planned Joe and I did get married as planned in March 2010 and we now have two beautiful girls, Charlotte is four and Lucy is two. They make me smile every day, even when I am tired, and even on the days when they are being cranky too! There's always something happy in my day when they are about. 

I've written about this in the past but there have been some, very narrow minded, people, who have questioned my decision to become a mum, knowing that I had MS. But I genuinely believe that having my girls has been, and always will be, my best ever decision

Also, there are lots of mums and dads with MS, who had their children before a diagnosis. 
For my children too, I think that they are already more empathic in nature, more willing to help, more open to the fact that life isn't always perfect and will grow up to understand that people are never made the same.

I'm also very open about having MS. I don't talk about it too much in front of them, because they are still so young, but they know mummy gets tired easily and that my legs are often the reason why a long walk to the park just isn't possible. But they've grown up with those limitations, and trust me, I make up for the bad days on the good days too.

This year we also made our first trip abroad, which I wrote about for MS Matters. I was so nervous and had to be organised to within an inch of my life, but we took the plunge and it was a great holiday. I have been well since Lucy was born over two years ago and while a myriad of symptoms can frustrate me or impact on my day now and again, I have thankfully been relapse free.

I'm also still working, albeit 18 hours a week rather than full time. But I think I have the balance finally right - and I always tell anyone who will listen, as you are doing now, that that's the one thing MS has given me - more time with my kids. Because there is no doubt that I would still be working full time if I was 'well'.

I suppose every cloud has a silver lining ... 

My work colleagues, along with my friends and family, also all know I have MS. And that's what initially sparked my inspiration for this talk. I was chatting to my work colleague and I asked her if she was glad she knew, or would I have been better to pretend I as 100% ok for longer.

She was emphatic in her answer, in that she thought I was right to be honest. Because she declared, 'I would be so worried about you if I didn't know'. And I get what she means, because of course she is still worried about me, but now she knows the facts, she knows the black circles under my eyes will disappear eventually, she knows that my limping is temporary, and she knows I am taking all the medications I can to stay well.

But there are times when I am not always honest. Mainly when I am in some sort of pain and someone asks, 'How are you toady Catherine' and I invariably answer, 'Aye, grand' - with maybe a definitive, 'Just a bit tired' or 'Just a bit sore' When the truth is I took two hours to get dressed, sat in the car in rush hour traffic begging for it to move asap so I could get to a loo, and then swallowed extra painkillers I try to simply get me to lunchtime. But, aye, I'm grand. 

That's Derry lingo for I'm ok btw!

That's the honesty part I struggle with the most, because I don't want a pity glance, or a sympathy whisper as I walk away. And I know they mean well but that's still hard. 

Damn it, all of this is hard.

You know I'm wearing high heels today - because standing here is nerve-wracking, even if it doesn't look like it - and heels always give me confidence. But I rarely wear them, and in five minutes I'll have my flats back on me - but for now I want you all to think I look great. Isn't that the biggest MS lie - when you're trying to prove to other MSers that you're ok! 

So maybe after today you can go home, think about the people you haven't told but would like to, and maybe make that phone call. Or like me you can simply tell those that do know, I'm struggling today - even if you are in high heels. 

Because for me having a great support network has been invaluable. My husband is my rock, my parents constantly there, and when my girls grow up, they too will understand. If they all didn't know I think the last six years would have been unbearable.

It's also the reason I have set up a support group for women with MS, in conjunction with the Derry Well Woman centre in Derry - we meet once a month and it's a lovely environment to be able to share experiences and realise we are not alone in this journey with MS in our lives.

And finally, I'm going to leave you with this thought ... 'Sometimes the bad things that happen in our lives put us directly on the path to the best things that will ever happen to us' 

I would never suggest that MS is a blessing - but my life is certainly changed because of it, and I would naive to think it hasn't changed me. But I honestly believe this .. 

Do not let MS define you, be yourself, see that there is something good beside the bad - and live your life as honestly as you can, because no one else can do that for you.

Thank you so much for listening and if you have any questions I'm happy to chat with you afterwards. Have a safe journey home, and hopefully we'll see you all again at the next Living with MS event. 

Sunday, 22 March 2015

A Temple of hope

I love the Timehop App, it's great for reflecting back on what you were doing this time so many years ago, and this morning it reminded me that I started on DMDs FOUR years ago. As with so many things it feels like yesterday.
It was also timely because Derry has just had the privilege of hosting American artist David Best, who has created Temples at the Burning Man festival in Nevada for over a decade. 
His Temple in my hometown was a reflection of many things but ultimately It became somewhere local people remembered their lost family and friends, looked forward with hope and left behind all manner of emotions that they wanted to forget, or simply move past. 
The Temple was then ceremoniously burnt last night as a way to cleanse those emotions left behind, a sort of clearing of the mind, it seemed to me anyway.
It felt like somewhere that I could connect with and as a result I left up one of my empty injection boxes, with a short message hoping for a life ahead that hopefully doesn't include injecting myself daily, and leaving behind some of the anger and resentment that, no matter how hard I try, still exists because of my diagnosis.
It felt so cathartic to be making a move to try and lose that sense of anger; anger at an illness that limits my life and in my hardest days, makes the road ahead seem impossible. The resentment comes at not fulfilling my career hopes and more importantly, for impacting on those around me, especially my girls.
I'm not naturally pessimistic, and I recognise that I have still managed to achieve many things despite MS, but it was also necessary to try to push that last vestige of negativity away.
Taking part in the Temple ethos and all it represented to me was a very good place to start. 
I was also privileged to chat to David Best and briefly mention that part of MS was something I needed to 'burn' ... he was so genuinely lovely in his response and it's a moment I will cherish forever.
It was also a moment captured on camera by a photographer friend and I'm so delighted that those few minutes are there for me to reflect upon for years to come. 

Photos courtesy of Lorcan Doherty Photography.