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. 

Sunday, 14 September 2014

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. 

Monday, 28 April 2014

My MS Life speech about Pregnancy and MS

On Saturday I had the privilege of speaking at the MS Society's biggest information conference for people with MS - MS Life in Manchester. It was a very positive experience and one which I hoped would allieve some of the fears others with MS might have about having children after a diagnosis. I've had some lovely feedback since so here's the speech for anyone who wasn't there. At the conference I then answered some questions so if you have any please do ask away!


I know we're here to talk about pregnancy and MS but I think it might help if I gave some of my background too. I was diagnosed five years ago, just weeks before I turned 27.
My boyfriend had proposed six months earlier and, now my fiancĂ©, together were planning our wedding which was organised for a year later. 
I knew about MS. In my job as a journalist I had covered MS Week countless times and met many people affected by it. But it wasn't on my radar.
I had been feeling out of sorts, collapsed a few times, ran to the bathroom at every opportunity ... But I never thought they were all linked. 
So it was a huge shock to be diagnosed but I also felt a strange sense of relief because at least now I could get help and there was a label for my problems.
That first year I spent time coming to terms with the diagnosis, I told my family and friends and got strength from their support. I constantly told anyone who would listen that MS would not get the better of me.
My wedding was a welcome distraction. There was too much to do to be worried about MS. But then just weeks before the big day, in between my hen do and final dress fittings, I had an appointment with the neurologist.
He was fairly blunt. My MRI had shown a significant increase in lesions, starting a Disease Modifying Therapy was not an option but instead something I needed to start immediately.
Then he declared, but if you want kids you can't be on DMDs while trying to conceive or during the pregnancy. 
Basically we had a choice, babies or DMDs.
Our wedding was four weeks away. Our whole lives ahead of us. And we wanted a family. The question now was when? 
My husband and I didn't rush home to read the information or go on the MS Society forums, instead we made the decision based on what we wanted to do, just like any other couple.
I didn't want MS to cloud our judgement.
Thankfully, it didn't and on our return from our honeymoon in the Far East I was already pregnant.
Charlotte was born in November 2010 and her sister Lucy was born in July last year.
It's sometimes hard to believe that five years after that diagnosis I am a wife and a mum of two. Having my girls will always be the best decision I have ever made.

But I would be lying if I said MS didn't impact on my life or my pregnancies and labours.
Generally people with MS are told that you can feel much better during pregnancy, with the chance of relapse increasing after the birth. 
With Charlotte I didn't relapse during pregnancy but I had had some sensory issues in the run-up to my wedding and they got slightly worse rather than better, but I learnt to live with them. 
My labour was fairly straightforward and I was able to give birth naturally.
I had a support team in the form of my husband, mum and extended family. That's essential, but I would say that to any new mum not just a mum with MS.
But I did have a mild relapse in those early months, my legs constantly felt heavy, and the pain in my feet made them very sore to walk on.
And the DMDs loomed in my mind - just four months after having Charlotte I started Rebif.
In 2012 I had two relapses in quick succession and they worried me like they hadn't before. I wanted more children and I worried that if I left it too long then relapses may start to impact on my life too much and I would put off having any more. 
So my husband and I decided to try for baby number two.
And on Charlotte's second birthday I was delighted to tell our family that our second was on the way. Lucy's pregnancy went well. I felt great MS wise and it was merely the normal pregnancy aches and pains that bothered me, tiredness, sickness, nausea, sciatica. 
Again my labour went ok. Unfortunately I had to have an emergency c-section but that had nothing to do with MS. My midwives knew I had it but it wasn't a major concern as I was on my feet and had no mobility issues.
Lucy is now almost 10 months old and I have been back on a DMD, this time Copaxone, since last October. I haven't had a significant relapse since 2012 and medication is keeping the nerve pain at bay and controlling my bladder issues. 

People ask if it was a difficult decision to have my children knowing I had MS, and honestly, the answer is no. Yes, I know that MS is unpredictable and I do not know what lies ahead, but does anybody think ahead when they have a family? Of course not, you live for the here and now. I'm biased but my girls are amazing, and I cannot imagine my life without them. There are days when it's tough going and two under the age of four is hard work. But that's the case for every mum, not just me. 

Friday, 25 April 2014

Stop and enjoy the moment

This blog is so desperately unloved that I'm going to pledge to write at least once a week for the next ten weeks ... the lack of posts over the last few months are very simple to explain - Charlotte and Lucy! I honestly never get two minutes. I knew two kids would be hard work but my goodness it's ten times harder than I expected! 

Having Lucy has definitely been one of my best decisions in life. She is a ray of sunshine and her big sister adores her. I worried before I had her that Charlotte might be jealous, but that definitely hasn't been the case. If anything she is over protective. 

MS wise things have been quiet and that also accounts for my lack of updates. I always live life to the max when I'm well and that often means that I burn myself out during the day and then when night-time and my regular blogging time arrives, I'm fit for nothing. I don't regret that for one minute. MS is so unpredictable that I always grab the good days with both hands and treasure them. 

I've loved being well for Lucy's start in life, there's nothing better than being able to bath your own baby, to skip around the garden with your children, to organise and run a home without any major help. They are all things many take for granted but over the last ten months I have found myself stopping and taking in the joy around me, stamping the memories into my mind and being grateful for the chance the enjoy them. 

There have been days when I've begged for just half an hour of peace, but I always stop myself from feeling sorry for myself and remembered that my children will not be young for long and I may not always be well to enjoy them. 

That said, I'm currently sitting in an airport, on my way to MS Life - a conference organised by the MS Society - and I'll be away for three whole days. It's going to be busy as I'm also squeezing in a visit to an old uni friend who I haven't seen in years, as well as meeting my nephew William for the first time - and I'm truly relishing the thought of not being woken at 6.30am for a few mornings! I'm giving a talk at the conference about Pregnancy and MS so I'm slightly nervous but looking forward to telling others with MS that having a family is very much a possibility. I'll post my speech here next week so anybody who doesn't catch me there can read it here.

Until next week ... look after yourself, be kind to others and live life as if today is your last. As always, I appreciate your comments and I'm on twitter too - @catdoran

Thursday, 3 October 2013

The Copaxone journey starts here

Yesterday I had my usual Wednesday morning of peace. This occurs when my aunt takes my two girls out to a local playgroup session and I manage to relax without having the baby monitor attached to my side, or a toddler asking repeatedly for sweets (until I inevitably give in, just for a bit of peace!) 
But this week's Wednesday wasn't the usual. Instead I shopped a bit, spending money on the girls again, and lost the first hour trying not to think about the second.
It involved a trip to the local hospital to see my MS nurse Fiona, where she was all set up with my Copaxone start-up kit.
A lovely rucksack was presented to me, inside of which was the myriad of accessories that go with taking the medication.
These include a sharps box for the discarded needles; a mini sharps box for going on holidays with; two fancy pouches to keep the pre-filled syringes in, marked out with the days of the week; two gel packs for heating or cooling as I see fit; two auto-injectors; an injection diary; a DVD on the process and an instruction manual of sorts.
And sitting on the desk, one pre-filled syringe all ready for me to inject.
After a quick chat it was time to get started.
There are nine injection points available to me - two thighs, two arms, two bumcheeks and three areas below and to either side of my belly button.
I decided to start on my bumcheeks as I figured it would be a difficult enough spot to get to on my own and having some instruction from Fiona would only be a good thing.
And it wasn't too bad. The actual injection was easy enough in the end and I'm already preferring doing it myself instead of using an auto-injector which I've had previously. 
It gives you more control and it was over in seconds. The only part that was hard going is the sting afterwards. It starts off as a tiny nip, growing into a serious enough sting but a few deep breaths and I was out the other side.
A red rash not unlike a nettle sting did appear after but it lasted about two hours at most and I was fine for the rest of the day.
It's some difference to Rebif and Avonex, both of which left me feeling groggy and as though I had the flu constantly.
I'm hoping to do my injections in the evenings from now on so will be giving myself the second dose tonight. Wish me luck! 

Monday, 30 September 2013

And so it begins ....again

Wednesday heralds the start of my new treatment, Copaxone.
As mentioned in the previous post, this is a daily injection so it will inevitably impact on my life a touch more than previous medications.
However, I am embracing the routine and staying positive as to the rewards it should bring.
I would be lying if I said I wasn't nervous because of course I am. It will take a few days or weeks to master the art of the injection, and then there's also the feeling that this is all that is left for me to try at the minute.
There are other options licensed for use in the UK but they are mainly kept for those who relapse more than I currently do, or as a last line of resort once these initial DMD's have been tried with no effect.
So it's sort of like I'm putting all my eggs in one basket and hoping with all my might that none of them break.
It can feel sometimes that my body is already breaking. 
Small cracks are appearing on the surface. 
My upper torso currently has no feeling, I've mentioned the dead right arm before and of course the usual fatigue, pain and bladder problems have been well documented.
But I can cope with those small ailments, they have seeped into my everyday life with such ease that I am carrying them without realising.
It's mad to think that I am now used to chronic pain. It's crazy to know how willing the human body and mind can be to taking extra burdens onboard.
But I am proof that this is the case. 
Now I want to see if I can stop those cracks from opening new wounds.
I have to hope that Copaxone is that sticking plaster, for it seems that there is no healing cure just yet.