Finding #workthatworks with MS

In a survey completed by the MS Society in 2015 it was reported that as many as 80% of people with MS are forced to give up work within 15 years of diagnosis. That's a shocking statistic and if it runs true for me then I won't be working by 2024, just seven years away.
My daughters will be just 13 and 10.
I have tried so hard not to let MS impact on my life too much but there's no denying that my work is probably the one thing I have felt the pressure under.
Within a year of diagnosis I was working part-time and once my children came along I reduced those hours further. Within six years of diagnosis I had gone from working 37.5 hours a week to just 18.
I've talked openly about how I felt MS robbed me of the journalism career I had worked so hard for -  the long nights studying, the law degree, the late nights putting papers to bed, proving my worth, going the extra mile - and how a career ladder I once envisioned myself climbing was cut short.
I could no longer manage to find the energy to climb that next step - which nearly always required a full-time person. Truthfully, I was just about managing to cling onto the one I was standing on.
I also wanted to appreciate my girls more as I am always acutely aware that MS may strike at any time and every day is precious, especially as I was determined that my illness wouldn't impact on their childhood. I figured that finding a flexible way to work would allow some movement in the working week so that I could accommodate them as well as any trouble MS sent my way.
So I decided to look for alternatives. A way which would future proof my career in some way and maybe, if at all possible, allow me to work from home.
The light-bulb moment came when I read about Digital Mums - a fantastic online learning course designed to up-skill mothers so they could become strategic social media managers. Which is essentially looking after social media accounts like Facebook, Twitter and Instagram, for brands/businesses/charities.
Sound easy? It is and it isn't!
With my journalism background I know how to write, find content and talk a good talk. But I started the course last October and I cannot stress how much I've added to my CV in that short space of time.
It has been a frenetic, fast seven months but also fun.
Digital Mums are all about finding #workthatworks and flexible working is how they envisage that happening. They firmly believe that bums on seats in dull, grey offices up and down the country does not always mean effective working.
Instead, they're training an army of mums to work from home and provide a very real solution for the business community. I am now part of that solution and I genuinely feel that there are so many people I can work for and make a difference to.
There are terms and acronyms I now use in my everyday language that I had never heard of last summer - this summer I am putting myself out there for work with a myriad of skills to match the talk.
There's everything from user personas, campaign development and analytics to advertising and curated and created content - if you want an inside track on how to improve your social media presence then I'm your woman!
It's been so very liberating going back to coursework and lessons. I've felt empowered to be taking my career into my own hands again and feeling super-confident about the work I can do in the environment I'm pitching into.
I now work from my own home, sometimes in my pjs, unless I'm leaving my girls to and from school every day, and I can essentially use my phone as my work office. Basically I can work anywhere with decent wi-fi or 4G coverage.
Yes, there have been moments over the last 28 weeks when I've wondered if I was crazy to have left a relatively well-paid job with a regular pay packet and half the week at home with my girls, for the world of self-employment ... but the upside is that I've looked down the barrel of the MS gun and decided that when it fires, I'm ready.
So let's be having you MS. I will not be that statistic. Come 2024 I will still be here, typing away, making a difference in my own career.

When the MRI scanner stresses me out

I’m diagnosed over seven years now, and in that time I’ve never had an MRI.

In recent discussions with my neurologist and MS nurse it was decided I should have one.

Firstly, I am still on Copaxone, which means injecting myself three times a week. It appears to be working because I am generally well, but the MRI will actually show if it is.

It will show all the lesions that exist inside my body, causing damage quietly, and thinking they can get away with it!

But this MRI will be compared again the last one in 2009 and the comparison will show exactly how my own immune system has been malfunctioning – and if the drugs I’m currently on are really working.

If they aren’t then I have the option of switching onto one of the many oral medications that now exist, as well as Lemtrada.

So it’s a catch 22 sort of scenario because I hate injecting and if the MRI shows Copaxone is doing me little good then I’ll get to stop them. But if I have to switch that means the lesions are doing more harm.

Anyway, it is what it is, and the results shouldn’t be too long hopefully.

But I have to say the MRI itself was fairly stressful. I was a touch laissez-faire about the whole thing; thought it would be a breeze, because I can’t remember it bothering me the last time.

And this time I was allowed to bring my own music to play while the crazy knocking sound did its thing.

But in reality here’s what happened.

I get taken into a small room, undress and put on the unflattering backless gown. Lock all my valuables in a small cupboard on the wall, and leave with only the key and my CD.

They ask me to lie down, tell me nothing about the procedure, stick on the headphones and strap me in.

I’m whoosed back into the chamber, with the emergency buzzer clamped in my hand and I find that there’s no noise in my headphones.

I feel it would be stupid of me to buzz and mention the lack of Josh Groban singing to me so I grin and bear it.

I close my eyes and try to doze off amidst the noise. My eyes never open.

Halfway through I start to panic as my throat feels dry and I am terrified of licking my lips, knowing that staying still is the name of the game.

My heart races and I talk myself down from the irrational feeling of helplessness.

I start to imagine the images the machine is making and the fact that they might not be good.

At times a whoosh of air comes at me, and at others the machine shakes so much I shake with it.

The noise knocks directly in my eardrum; my head starts to pound.  

And it takes forever. Way longer than the 20-30 minutes the letter suggested.

Finally I am taken out, and I mention to the nurse that I couldn’t hear a thing in my headphones.

She shrugs and says ‘Well, we enjoyed it back there.’

I gather my things, get dressed, and they give me back my un-listened-to CD and I go home.

It feels quite surreal.

So I take my eldest daughter to the cinema and feel no guilt whatsoever in eating Ben and Jerry’s ice cream and a bag of chocolates, even though I should be dieting (always!)

Now the wait for the results begins.

Back writing ...

So much to tell, so little time.

But I’ll start at the top.

Daughter one started Primary Two this week, daughter two heads into nursery next week.

They both still feel like my babies but of course they’ve grown up when I forgot to watch!

Since Lucy was born in 2013 my writing and blogging has taken a back seat, and I miss it.

I’ll regularly formulate a blog post in my head and then it goes nowhere.

But Lucy is three now and the hard years are over – well, the sleepless nights are anyway.

So I’m back and seeing how this regular writing thing goes.

MS wise I’ve been generally well, although this week has been tough pain wise.

I’ve talked about this before but some MS doctors don’t believe pain is a MS ‘thing’.

Trust me, it is.

It disturbed my sleep last night and I’ve had no let up since I woke, despite the painkillers.

I’m getting on with it, because the girls still need fed, washed, dressed and taken to school while Joe is at work, but I wouldn’t wish the pain on anyone.

There’s other bits and pieces I’ll get to in the next post but for now I’m happy to be back posting and writing.

Keep with me. 

Volunteering

This week I headed off to an AGM of a local branch of the MS Society, and while I was there as a member of the charity, I was also there in my new role as Vice-Chair of the charity's Northern Ireland Council.

It's a role I was voted into in January this year, having spent 2015 co-opted onto the Council to see if it was a volunteering role I wanted to explore further.

It was such an interesting year that I had no hesitation in putting myself forward for an official three year term.

That started in January, and as with most things I do, it hasn't been on half measures.

At face value the Council meets five times a year. It's a three hour meeting usually and as it's held in Belfast, it is a full day's 'work' for me.

On top of that there's support groups to attend, fundraising events to support and I've also appeared both in print press and on the radio promoting the charity's work.

But I don't begrudge the time, nor the effort.

The charity is one which I believe in wholeheartedly. They are the largest charity supporting people living with MS in the UK and the work they carry out is phenomenal. 

From information, support and advice, to fundraising and funding research, the remit they cover is wide and varied.

In addition, I personally find volunteering incredibly worthwhile.

Yes, it's time consuming and it can be tedious (there's a lot of report reading!) but it's something I do outside of my home and work life.

It's a time for me to recognise that despite MS, despite all that it has thrown at me, I am still challenging myself.

It has also given me the chance to meet some very inspirational people, some who have MS, and others who are just helping the charity because they want to.

That in itself is very humbling.

I'm looking forward to fulfilling my role in 2016, and in the years ahead too.

If you've never considered volunteering then I truly cannot recommend it enough.

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. 

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. 

A year down ...

It's hard to believe but this time last year I was just about to embark on my Copaxone journey.

It was one I faced with trepidation but also filled with hope.

Having already tried Rebif and Avonex I was very aware that Copaxone was sort of my last throw of the dice, and felt as though I really was putting all of my eggs in one basket.

Having to inject every night was always something I worried about but 12 months later I can honestly say it doesn't bother me anywhere near as much as I expected.

Yes, I still avoid my legs (they bruise too easily and the pain isn't great either!) and while I use my arms because it helps with rotating my injection sites, I still wince every time the needle pierces my skin.

Generally each injection is over within ten seconds.

I've even been known to take it with me to a restaurant, nip to the toilets and inject quickly before anyone even notices I've gone.

After all this time I still have days were I forget to take it, despite my alarm buzzing at 7.30pm. 

Sometimes it's the day after before the injection site annoys me, as they can get incredibly itchy. Which isn't a great look at work as I surreptitiously try to scratch my stomach.

Talking of my stomach, it's my favourite place to inject. I'm (un)lucky enough to still have some baby weight lingering on my middle and as a result I hardy feel the needle going in.

I desperately want to lose my 'mum tum' but when my diet gets side-tracked I always console myself with the knowledge that my injections will at least not hurt so much.

But on the whole I've got used to it. 

I've probably only missed about 5 or 6 doses in a whole year so by my calculation that's 360 injections. Each one loaded with a medication I honestly believe is working for me.

I have no major side effects, especially compared to Rebif which left me groggy for half the week. 

Crucially I have had no significant relapse in the last year.

Don't get me wrong, I've had some exacerbation of old symptoms, and the fatigue and pain are things I am unlikely to ever live without. 

But NO relapses is a milestone to be celebrated. I'll take that.