Archive for the ‘The Conquerer’ Category

Lights, cameras, action!

As I went to bed one night a few weeks ago, it occurred to me that there were three people in a hotel somewhere in Cork city at the time, who had flown from Manchester with the sole purpose of interviewing me! I was wrong… there were four of them.

Four bodies with countless bags of lighting and equipment descended on my home on a Thursday at 9.50am as I nervously gobbled my muesli and guzzled caffeine before their arrival. I welcomed these strangers to my house with an exclamation of ‘you’re early!!’ through a mouthful of breakfast. The dog went crazy! Great start…

Four people flew from Manchester to talk to me on camera and to listen to my story. I couldn’t understand it, my life isn’t that interesting… During a conference call the previous week, as I spoke to a room of unknown and unseen strangers, I started by humming and hawing and saying ‘well where do I start?’ when I was asked about my life with MS. Ahhh… I’ve nothing to say… nothing of interest anyway… right before I launched into a version of ‘my story’.

I’d guess there were toilet and coffee breaks involved at their end, while they possibly regretted asking me about my life with MS and thought would I ever shut up? I genuinely couldn’t understand how they thought my story was worth listening to. What surprised me even more, was that they were willing to fly people to Ireland to hear about my life. Me? I’m not that interesting…

Having worked a 12 hour day to enable me to take time off on the following day, as I wearily climbed into bed on the night before they arrived, I considered my choice to become involved in the campaign #TheWorldvsMS and thought – am I mad? What was I thinking when I decided to do this? I don’t have the time, as during the day of interviewing my phone screen lit up with the arrival of work emails and I worried about collecting my kids on time later on.

I’m so glad I was asked, and I’m delighted that I took the opportunity to get involved, I had a ball!! I had one of the most interesting and entertaining days in the company of the lovely Anna, Jenny, Sam and Luke. My sitting room was transformed with lights, cameras and tripods. My constantly barking dog thankfully slept through the cameras rolling, with the exception of the postman’s arrival, her daily battle to protect me from his menace is never-ending.


Facing four pairs of eyes and a barrage of lights and lenses was daunting at first, as I awkwardly stuttered through my opening lines, all script preparation forgotten, but with each question I relaxed further into ‘my story’. I felt like a participant in America’s Next Top Model as a photo-shoot took place outside my house to the curious twitching of neighbour’s curtains with impressive camera lenses and huge, shiny light reflectors.

sitting room

Following a delivery of falafels for lunch and many more cups of coffee to keep me awake, we piled into my car for a trip across the city to Halflight Audio recording studio, where the lovely and patient Conor set me up for voice-over recording. I think this was the highlight of the day, in a day full of highlights. I thoroughly enjoyed the experience of speaking into a microphone in a sound-proof recording studio. Listening to my own voice booming back at me in high definition was not so enjoyable though… I visibly flinched every time!


The online campaign, funded by Sanofi Genzyme that I am proud to be involved in, is called The World vs MS and launched last week. For the MSers among you, you can get involved at and on social media using #TheWorldvsMS.

By sharing our stories, challenges and ideas with the MS community worldwide, others facing similar problems will benefit from the support and gain solutions to problems that they face daily.

As the campaign asks, and as i recorded repeatedly, ”are you with us?”

See more about the campaign and to get involved at Follow the initiative on Twitter and Facebook.


The joy of Fampyra approval!

If James Reilly burst my balloon last year, Leo Varadkar just huffed and puffed and blew it right back up again!

See post where I asked for your help in signing a petition – appealing to the Irish government for funding the MS drug Fampyra, in May 2014.

In a statement issued today, the Irish Health Service Executive (HSE) stated that they have now reached an agreement with the manufacturers, Biogen Idec, to supply the drug Fampyra for patients who have responded positively to it on a trial basis.


In short, we won. The petition and online campaign carried out over the last year, were undoubtedly pivotal in repeatedly forcing the Fampyra decision back onto HSE and Biogen desks. Well, I like to think we had some influence. A big thank you and congratulations again to Triona who set up the petition, which received a whopping 3,874 signatures!

To put it mildly… I’m delighted!

For MS patients in Ireland, it means a drug that had proved to be very effective in initial trials, but had been declined for funding under any existing schemes within the Irish health system, has today been made available again through the Long term Illness scheme. There’s a cheerful sounding scheme in which I am a VIP Gold Lounge lifetime member.

Put simply, for MS patients this drug can mean the difference between being able to walk and not being able to leave their bed or chair.

Fampyra worked for roughly 50% of MS patients who partook in the trials, and when it worked, it WORKED! Taking two little tablets daily, could improve a patient’s mobility to the point that simple daily tasks they could not accomplish before were now much easier. For me personally, Fampyra improved my balance and a tremor in my left arm, no biggie you might think, but it made a big difference to my daily life.

The HSE expects to confirm the reimbursement date soon, but a Department of Health source said the scheme is likely to begin next month.

The bestest of best news! Queue happy dance…

MS Ireland have recently launched a handbook which is designed to help MS Patients in Ireland in understanding what their treatment options and rights are as well as giving practical advice on how to engage with the health system to ensure that patients have access to the medicines that are right for them.

You can download it here Accessing Medicines Handbook

Not all heroes wear capes!

I’m doing a drastic house clear-out at the moment. And by drastic I mean massive. Enormous even, in anticipation of a gigantic skip arriving in a fortnight. How many ways can I articulate the word BIG in an opening paragraph?

If you stand still in my house for long enough nowadays, you’re likely to get stuffed in a black bin bag and chucked in a pile!

If you’re lucky and are considered valuable to us, you’ll get a label (of sorts, who am I kidding in my efforts at efficiency?) and start your bumpy, narrow, steep and not particularly comfortable journey up the attic stairs to rest above the rafters forgotten for eternity. If you’re not completely forgotten, I guarantee I will forget what corner of the attic you reside in, undoubtedly in a few years time after many forehead bumps and curses off the rafters, I might, just might find what I’m looking for.

If you’re pre-loved by us as a family, you’ll get piled in a box and will enjoy a more comfortable trip via the boot of my car to the local charity shop! Where you’ll make lots of new grateful friends and get sold off along with a few puzzles and a plastic plane for the princely sum of €2.

For the really unlucky ones, you’ll get a temporary reprieve in the shape of a large unwieldy pile in the back of my office, but don’t be fooled by any sense of security… you’re in the transit lounge before a journey to the skip of doom!! You will finish this journey squeezed in between old mattresses and rolls of carpet as you make your way to landfill. Unless of course you get plucked out by some eagle-eyed guy in a passing van beforehand.

When the patient and extremely sweaty guy (if I could channel some of my attic heat downstairs it would be handy!) floored part of my attic last week, his exclamation of ‘wow you’ve tonnes of space up here’ was met by me thinking ‘excellent, let’s start cramming it full of crap I should be putting in the skip pile’ while wondering just how strong my ceiling joists are…

One item I can’t bring myself to throw in the charity shop pile just yet, is an old t-shirt of mine with a wonder woman logo on it. I wore it ironically many moons ago as I staggered around succumbing to MS symptoms. At what age are you too old to wear superhero t-shirts without looking like some washed-up idiot in the throes of a mid-life crisis?


Disappointingly, mine doesn’t have a cape, but you get the idea.

Humph… I’m keeping my wonder woman t-shirt for a little while longer, while I move old furniture, pull up carpets and haul black bags full of loitering guests out to relevant piles. In the privacy of my own home, who cares? I’m wearing it in celebration that I’m feeling strong enough physically to tackle this work. Mentally I had procrastinated for long enough… I am the ruthless superhero of de-cluttering!

By the time my clear-out is finished, and the renovations are complete, as I clear dust from my tired head, I will feel entitled to wear my wonder woman t-shirt with pride! Also by that stage my empty pockets won’t stretch to much more than pre-loved clothes!!

I suggest you stay clear of my house for a month or so, or if you do visit, bring a drill and expect a paint brush thrust in your hand. Most importantly, don’t dare question the crazed middle aged woman wearing a faded wonder woman t-shirt with pride!

Gym-bunny? More like gym-giraffe

The first time I rang the fitness instructor was in September 2013. Thankfully he was on holidays so I was left with a sense of achievement without actually doing anything; that is so typical of me, I wrote it on another list and promptly forgot about it. I felt absolutely happy and confident in my decision to ignore this irritating urge I had to get fit until the first week in August 2014, following my ‘mad idea’ – see post in case you missed my new motivation/goal and haven’t yet questioned my sanity!

The first time I met with my instructor, I actually moaned about the length of the corridor down to the gym, suggesting that my work out had already begun before he’s even checked my BMI or weighed me! That tells you how deluded I was. Since EVENTUALLY embarking upon this new regime, I have been performing the public service of entertaining some members of my local gym 2 or 3 mornings a week with my attempts at using the equipment. Bright and early, when only the perkiest of neighbourhood birds are rubbing their eyes in search of worms in the dew, you’ll find me scrabbling into my tracksuit, filling my water bottle and off I go with a spring in my step, leaving behind me a confused dog and sleeping children.

I know this post comes dangerously close to me shouting on social media when I lift a weight or jump on a cross trainer. I remember the promise I made NOT to tell you every time I shuffled over the threshold of the gym, but I want to tell you that having said I would start training when I came up with the ‘mad idea’, I actually have! I’m delighted to say that in spite of my poorest of efforts, it’s going really well.

I have been busy using machines with mechanisms so complicated, Christian Grey would be proud to stroke them in a scarlet glow of naughtiness. I hop on these apparatuses with a zealous optimism, until the 18th pull/push/lift at the lightest setting (a pathetic 5kg/7.5kg), when my poor underachieving muscles are whimpering, by the 19th they’re screaming, by the 20th they’re whooping and hollering with delightful satisfaction! Cheering me on as I move to the next machine and start the process all over again, targeting a different set of unsuspecting muscles.

I had been eying up the rowing machines with a sense of longing (seriously, I need to broaden my horizons) during my first few meetings with the fitness instructor. Like ducks in a row they sat all masculine looking, taunting me. My pleas of ‘can I not just try…? No? Ok…’ with a shrug of disappointment in reply to his usual answer of ‘next time’. So imagine my excitement when at last, he suggested I try introducing 5 minutes on the rowing machine into my routine.

Whoop I was thrilled, and approached the machine with my newfound exuberance for scary looking gym equipment. He adjusted my foot straps. He adjusted the seat position, three times. Then we embarked on a surprisingly lengthy tutorial on the little LCD display. Workers in Cape Canaveral need less preparation! All this time I’m thinking ‘alright, I get it! Come ooonnn!!’ Eventually I’m ready for off. What happened next took us both by surprise. What happened next also brought gasps followed by words of shock and encouragement from the guys on either side of me, both by the way – rowing seamlessly and roughly twice my age.

A giraffe on acid would have more rhythm and grace than I had. No amount of coaching from my poor instructor could rectify the situation. ‘Push out with legs, pull with arms…’ blah, blah, or whatever combination you’re meant to use, was clearly beyond me and my coordination, the only benefit was the comedic value, I burned a few calories laughing. I am, it seems – incapable of using a rowing machine. For the moment anyway, I see it as a temporary hitch until my leg muscles get stronger. Damn MS has weakened the thigh muscles in my right leg, resulting in my knee ‘locking’ every time I push out. Which is hardly conducive to building a sense of rhythm and stride.

Now you’d be right in thinking that all this effort can only have a positive outcome, aside from the regular hilarities, but the paths I’m pounding to reach this outcome, are not smooth and without hitches. My typically Irish ability to laugh at myself and see the bright side of even the most ridiculous of situations I find myself in, are necessary companions during my 40 minute work outs.

Amazingly, out of this early morning humiliation come incredible focus, motivation and drive for the rest of my day. Plus the occasional eye-candy lifting weights among the retired gents has to help. The exercise bike I finish my routine on, that cheekily beeps at me if my revolutions drop below 40 per minute – is nicely positioned overlooking the heavy weights area, that cheers me off on my way back down the longest of corridors to get a day’s work done.

Stumbling barefoot through the nettles.

I was asked recently during an interview (see how I slip that in?) if I will write about my down days too, the days when MS succeeds in beating me. If I will tell you when I’m having a particularly crappy day full of exhaustion, stress, frustration, anger even! Or will I always portray the upbeat, resilient and hopefully a few of the funnier stories from my life with MS? My answer was yes, that’s what I set out to do, no one wants to read about the doom and gloom of life from a moany-pants!

This got me thinking. Of course living with Multiple Sclerosis is not a bed of roses! More like a bed of dandelines and nettles. Most days I choose to see the roses, sometimes even a field of sunflowers. There are days where I stumble barefoot through the nettles though. Perhaps I’m misrepresenting life with MS. I am a positive person by nature and I tend to mainly focus on more upbeat or funnier events.

As I said many blog posts ago, blogging is great therapy! I don’t publish everything I write (be thankful for that!) I go back, tweak, cut and paste into a different article, delete etc. Below is a post I wrote during one of my nettle days a few weeks ago, but decided against publishing to my blog. Have a tube of antihistamine cream ready for to calm the stinging bumps and be sure to play the song for the full multisensory experience.


Despite all my rage.

Am I still just a rat in a cage? I am indeed just a rat in a cage. I am Claire’s nervous system; a rat, a dysfunctional rat. Her body is my cage, a glorious cage (Claire’s edit).

My rage is caused by weakness. My rage is caused by frustration. My rage is caused by secret destroyers, silently attacking me.

My story needs a soundtrack. A song I know Claire would approve of. Bullet with Butterfly Wings by The Smashing Pumpkins. For full effect I suggest you play at full volume while reading this. To share my anger, to wake up your senses and lastly to enjoy a great song!

the world is a vampire, sent to drain

secret destroyers, hold you up to the flames

and what do i get, for my pain

betrayed desires, and a piece of the game

even though i know-i suppose i’ll show

all my cool and cold-like old job


In my world I am being drained of stability. I am trapped in ‘malfunction mode’. I am devastated at how my battle scars affect her. Claire nonchalantly turns from her cooker towards her sink, assuming that her left leg will actually move like she tells it to. Oh no it won’t! Claire (stumbling slightly) shouts “oh yes it will”.

I am saddened that my ‘malfunction mode’ causes her to occasionally loose her balance. It angers me that her finer motor skills are sometimes affected; resulting in her handwriting being a barely legible scrawl or taking a ridiculously long time to tie her shoe laces.

Unfortunately even though I’m operating in ‘malfunction mode’, she definitely feels it when she slices her knuckle on an empty tin of chickpeas as she fills the recycle bin! My nerve endings work fine when she stubs her toe or steps on a Lego brick.

What I can’t manipulate from within my cage is Claire’s spirit which persistently resists my control. That leaves a bitter taste of resentment, something I can’t dictate. Her spirit firmly elbows me off my power trip. Who am I kidding? I have become so accustomed to controlling her body, my cage, it has ceased to sadden me, I have become a control freak. My rage and frustrations extend beyond the affects my ‘malfunction mode’ have on her to the realisation that no matter what I do, I can’t control her fighting and resilient attitude.

She raises her two fingers to MS, not in the aggressive manner you would expect (and I deserve), she is making peace with me, her rat inside her cage. She has freedom. She has the ability to mentally escape this cage.

Despite all my rage, I am still just a rat in a cage.

Move over Lewis Hamilton, I can’t see the sharks!

My first wheelchair adventure was in Barcelona last year. To celebrate my dad’s 80th, my kids and I decided that he needed a trip with us for a few days of spring sunshine, teenage hormones and pushing his daughter around a city. For tasty tapas, an occasional Mojito with a bit of culture thrown in for good measure. What could go wrong?

In theory it was a great idea. Find a nice central apartment, book cheapish flights and off we go! In practice we discovered that taking 2 kids on a city break for 5 days ends up costing more than an ‘all inclusive’ fortnight by a pool in Santa Ponza.

Happy Birthday Granddad!! Aren’t we great?

Central Barcelona is fairly flat with good, generally smooth and wide pavements. Perfect for our maiden voyages with my new wheels. I got the biggest kick out of wheeling myself right up to a table at a street-side café, perusing a menu and ordering a beer without leaving the wheelchair, it’s the little things…

Following our lunch, the Spanish waiter declared “a miracle” with a huge grin, when I got up and walked to the toilet. Which sums up mobility issues with MS in a few sentences. Yes some days I can walk reasonably well, some days are good, but then without warning, my legs gradually stiffen. Some hours are fine, other hours are difficult. Thanks MS for keeping me guessing, I can never predict how I will feel. Only thing I know for certain is – stress makes all my symptoms WORSE.

I think we were all slightly anxious with the wheelchair at first, flapping about with foot rests and panicking to fold the chair quickly before we got on buses or taxis, but after a few days we were pros!

I worried that my children would be upset by seeing their mother in a wheelchair. I worried that they would worry if you know what I mean? They took it all very well and loved taking turns pushing me. I had obvious advantages too; for hanging shopping bags and skipping queues at tourist attractions.

My dad, who is fitter than a lot of people half his age, walked miles and discovered many wonders the city had to offer. We endured an afternoon at a shopping centre too of course, the one day my teenager didn’t moan about boredom and lack of WiFi. I was like a Formula 1 driver on the marble tiles zooming between shops and playing chicken with women and their buggies, even managing a few ‘doughnuts’ by the escalators. I made plans for future modifications to my chair involving go-faster-stripes and UV lights underneath.

We became cocky after a few days. We took risks, we lived life on the edge! We thought we had this wheelchair business down to a tee. We spent an entire day causing chaos as we ‘hopped’ on and off the city’s tourist bus, leaving a trail of annoyed tourists with bruised shins in our wake.

The aquarium is amazing in Barcelona, perfect for a rainy day. We skipped a very long queue of tourists – who didn’t even attempt to hide their jealousy / hatred / venom at us as we rolled past them all queuing in the drizzle.

We were waved over to a ‘special’ window, where we saved a fortune on entrance fees! OAPs and disabled people were free, our day just kept on improving.

That was until we managed to jam up the conveyor-belt-type moving path through a glass tunnel under the sharks. I can see when the architect planned Barcelona aquarium, they thought it would be a great system for crowd control. To literally keep everyone moving through their star attraction.

That was until four Paddys arrived with a wheelchair. We were so busy oohing and aahhing at the sharks, we hadn’t noticed THE END of this magic moving path fast approaching. I still think it started speeding up!

Life as we knew it (surrounded by gigantic sharks and worried looking smaller fish) changed to slow motion. Slow motion with the realisation that if we didn’t act QUICKLY, the large volume of people behind would end up on top of us!
Slow motion to the sounds of toddlers crying and little old ladies saying “oh dear”.

I have never been so glad to see a strong looking German couple in all my life! They appraised the situation with military precision in seconds, shouted orders to my kids, and in one swift movement picked me and my wheelchair up and cleared the ‘blockage’ to some clapping and a wolf whistle – well I think that was for me, looking dashing in my wheels!

We didn’t stop at the cafe or gift shop on the way out. We retreated quietly towards the exit by slinking out hidden by a display of postcards and plastic octopi (not octopuses as my son kept calling them), past the people who we had pissed off in the queue to get in.

Over all our adventure was a successful one, for everything except our bank balances. I got to see so much and move around the city with relative ease, all minus the stress and anxiety of tying to physically drag myself everywhere. I was happy, I had taken the first big step in a new direction of holidaying with a disability. The experience had been a positive one, with the exception of jamming up a tunnel of sharks, but hey – not everyone can claim that!

Leaping over a milestone.

I have been waiting for today with a sense of anticipation for what feels like whatever. Not only is an article of mine being published for the first time, but today also marks (as Facebook would put it) a significant ‘Life Event’ for me.

What is this Life Event?

I have two kids off school with a tummy bug? No.

I’m fairly certain I’ve killed yet another coriander plant? No.

I will be doing a ‘first time in print’ silly dance? Maybe…

I have now fully acknowledged and accepted this MS monster in my life? YES!

A few years ago when I started walking with a stick, I felt so self conscious. Bizarrely I felt more self conscious about walking with a stick, than I ever did when I stumbled around looking like I’d been busy downing a few bottles of Rioja!

Last year while on holidays, I used a wheelchair for the first time. Amazingly this did not make me feel self conscious at all, other than apologising to my family and friends as I saw myself as a bit of an inconvenience. Is this what ‘they’ call growing? Growing from insecure to inconvenient? Hooray for me! To build some more anticipation, there’s another blog post brewing in my mind on the panic of getting my chair stuck in Barcelona aquarium and the joys of happily bouncing around the potholed pavements of Montreal.

With acceptance comes determination and increased stubbornness. My confidence has almost fully regained its previous self, and here I am shouting from my rooftop that I have MS, as opposed to attempting to hide it in a world of denial.

My blog and today’s article are both significant milestones on this road through my life with MS. Yikes… I almost used the word ‘journey’ there, phew… next I’ll be saying how I’m being forced out of my ‘comfort zone’. Both phrases are so over used nowadays and frankly – wind me up!!

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