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.

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 www.TheWorldvsMS.com 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 www.TheWorldvsMS.com. 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 http://wp.me/p4ezB1-7P 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.

Hooray!!!!!!!!!!!!!

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 www.change.org 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

Eeurgh!

If you have a bowl of fruit in your house at the moment, chances are one of these bad boys are taking a dump in your bananas as you read this. His kids are vomiting into your vine tomatoes and by the time you’ve finished reading this post, his missus will have laid a few hundred eggs in your peaches.

Meanwhile his sister is settling in nicely among your apples, taking a well deserved rest as she’s weary from carrying 500 eggs! Ah sure, take pity on her, she was knocked-up at 12 hours of age. Without romance or seduction, wham-bam-thank-you-mam behind a cardboard box of avocados in Lidl.

This family of fruit flies have seized the opportunity to climb onto the property ladder as you carefully pick the ripest punnet of strawberries during your Saturday morning grocery shop. They’re happily en route to your fruit bowl. Or your glass of juice, even better if it’s red wine! Oh they are quite partial to a full bodied Malbec.

As they hitch a ride directly to your kitchen, they’re smugly preparing themselves for a feast, busy fornicating and laying eggs. Their (thankfully!) short lives are uninterrupted in the trolley as you wander aimlessly down the aisles of the supermarket. You can ponder at length over the cheeses, take your time as you choose the wine for tomorrow night’s dinner, ah no problem, go back for that enormous bale of toilet rolls on special offer, no rush… plenty of fruit to gorge on in the trolley!

In blissful ignorance you take this family home, unpack your grocery bags and arrange an impressive collection of fresh fruit in a bowl on your kitchen table. Within minutes your new house guests are busy introducing themselves to the lads hanging around your bin, the ones their mothers warned them about, arranging a party for tonight in a discarded banana peel.

The more enterprising of the bin bunch are circulating fliers for the party in your back garden and before you know it, you’ve got yourself a full-fledged fruit fly infestation. Say that 5 times fast!

In the unlikely event that you would like to expand your knowledge on fruit flies, check out http://www.ceolas.org/fly/intro.html to read what they helpfully call ‘A quick and simple introduction to Drosophila melanogaster’.

My futile attempts at deterring fruit flies.

My not so futile attempts at killing them!

Orange juice was the eventual winner in my juice v’s vinegar trap tests.

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!

Not tonight love…

Yesterday evening was like any other Saturday evening. A pot bubbled wafts of tasty scents through the house as we sat around relaxing and chatting. Tummies rumbling with shouts of “mum when’s dinner”? There was even some sunshine! Life was good…

That was until my daughter alerted me to a dilemma of sorts. One involving under-age access to a music festival next weekend. She has the ticket, EVERYONE is going, but due to the festival organisers cleverly dropping dramatic warnings about unaccompanied under 18s through social media, she’s worried. She has succumbed to the shock-waves of panic sweeping through the under-age-concert-going community in Cork. Amazing how the organisers didn’t spread these rumours BEFORE the tickets sold out!

What if she is refused access to a muddy field in Mitchelstown next weekend? What if she’s denied the chance to stand knee deep in mud, beer and excrement as she queues for the portaloos? What a dilemma…

Back in the days of the Féile 90-91 ‘Trips to Tipp’ festivals, all us under-agers were herded happily into a hurling stadium, guaranteed access if you waved a can of Harp at the fella manning the gate. Back before there was much awareness of public safety, thankfully! Of course I shouldn’t be condoning this activity, but in reality I’m just jealous!

We’ve all been there! There is nothing like the pressure of queuing to enter a club or event knowing your under the legal age of access. I used to adopt the ‘act casual and confident approach’ as you shuffle towards the bouncers / security. Chatting with apparent ease among your friends, desperately hiding the fear that YOU MIGHT NOT GET IN. Oh the shame, the embarrassment and the disappointment.

As her mother I think my daughter would easily pass for 18. I did myself many times. At 5ft 10 inches tall, she’ll have the possible advantage of staring down any security guy in a high-vis yellow vest, or at least looking him in the eye as she dares him to ask for her dodgy fake ID. Plus she has regular arguments with city bus drivers about paying the ‘child’ fare, I reckon she’s a shoe-in. And NO I won’t Photoshop her passport!!?? Nice try though…

Through all this consideration of potentially illegal activity, I simply thought – if she gets in, she gets in, if not? Sell her tickets and put it down to experience, and a wasted Friday evening bouncing around the roads of Cork. You’ll probably spot me loitering around the car parks of Michelstown next weekend as I wait to collect her. The things us mothers get roped in to!! If I can get close enough, you might see me perched in a ditch trying to hear one of my favourites Basement Jaxx on the country breeze. Am I mad? Simply put, yes.

Speaking of passports, my relaxing evening was about to take a significant nose-dive!

I suddenly thought I’d better check my daughter’s passport as she is travelling to Belgium in a fortnight for holidays with her friend. Of course I’d meant to check it weeks ago!

Ya I was sure it wasn’t out until 2016, no it’ll be fine, sshhh no I can’t make fake age card’s – what sort of daughter am I rearing?? What sort of idiot am I? As I realise that her passport EXPIRES THIS MONTH. Honestly there was a loud expletive roared through the relative calm of the discussions of illegal activities in my house yesterday evening.

F*************k!!!!!!!!! Google, I frantically grabbed the laptop. Google fast!!

Phew…  there’s an emergency service, you simply click the button ‘disorganised gobshites’ and you start the process to renew the passport within 3 working days. She’ll be fine. It will take me a day or so to recover from the shock.

Great. Now on top of a hectic work week ahead, I look forward to the joyous experience of attending a police station with forms and my ex husband followed by hours in the passport office.

Could be worse… and the passport panic certainly put the music festival worries in perspective.

The next time you sit smugly listening to a friend’s woes of a late passport application, CHECK YOUR OWN CHILDREN’S!!! It could happen to you…

Where is my head at?

Are we a normal family?

I’m beginning to worry… is there something wrong with us? Instead of uniting us in harmless entertainment, board games cause screaming rows with occasional physical injuries!

Monopoly is the worst offender by far, plus it’s hard to feel good as you crush your fellow players through bankruptcy, especially when they’re your own children. It demands a considerable time committment however, we’ve eaten meals around games of Monopoly on the kitchen tabel for an entire weekend. Apparently the longest game recorded went on for 70 straight days. Was it fear of this happening that made Fidel Castro ban the game in Cuba in 1959?

Most board games cause fights in our house. With the exception of Guess Who – which isn’t really a board game anyway! Although accusations like ‘you MUST have green hair and glasses it’s the only one left’ are regularly screamed across the kitchen table. We fight like three angry Russians during a night of vodka and poker no matter what game we play. Please tell me we’re not alone?

My children’s different personalities are noticeable during a board game.

Daughter – starts off bossy, in command, ending up extremely stressed and slowly becomes completely frustrated by her younger brother’s complete inability to take anything seriously. She is too generous, kind and without the slightest competitive streak to be successful in the board game arena of life.

Son – cheats and laughs his way through every game, ignores the rules and invariably wins.

A few years ago I bought ‘Game of Life’ to add to our collection and provoke plenty more fights. It came with a 24 page instruction manual. Which was more than enough to put us off playing and condem it to life on the bottom shelf ignored. Last Thursday night we dragged it out and began a frustrating 30 minutes of learning how to play. The game brings you through ‘life’, including choices such as career options, investment opportunities and whether you choose to have children or not. I was amused to see that both of my kids opted out of starting a family based on the list of future expenses involved. Ha! Wise move…

MB games developed the Game of Life in 1860. The original board featured cheery spaces for suicide, disgrace, poverty, and prison. They advertised the game as a way of promoting thinking, reasoning and responsibility through play. The modern version is much more positive and features an electronic system of credit cards, a far cry from the original game no doubt.

As we began to play the atmosphere was jovial, until we actually began to participate in the game. Within two rounds we were arguing. By the third round the happy mood had deteriorated into thumping and hair pulling. I had managed to referee the kids in the early stages with a little success, but made the mistake of needing to pee towards the end of the third round. As I flushed I heard a blood curdeling scream, followed by a loud bang, followed by ‘MOM!!’

After this hiatus, the kids discovered that they didn’t need to follow board’s paths and life choices to have fun. They just cheated repeatedly by landing on *lottery* and fooled the electronic gizmo into paying out endless jackpots into their cards. A jovial mood returned. We were all winners!

Thankfully real life is much more enjoyable than the board game!

Left a bit… right a bit… ouch, are you ok? Right, who wants coffee?

No. 2 of July blogging challenge.

Today I am ridding the attic of my car roof-box. I expect a few grazed knuckles as it’s a tight squeeze through a small gap in the hall ceiling. Its removal will involve a balancing act worthy of a circus performer to maintain an upright position on the fold-down stairs, needless to say I won’t be taking part in this manoeuvre!

It’s a gift to friends, payment will be in the form of a few layers of skin and a bottle of tasty red upon their return from holidays in France.

For illustration purposes only, mine was nowhere near this fancy…

I see it as a symbolic event as it marks the end of my adventures with a car full of young kids, a laden roof-rack and the dog thrown in for added excitement. In reality the dog always sits happily on the back seat drooling all over everyone, never putting even one paw in the boot! Her little white hairs becoming embedded in the car’s upholstery for eternity. Nowadays I’m lucky if my kids come to Lidl with me for the groceries, their lives are far too busy for adventures with their mother. Unless of course a shopping centre is involved.

Reading this, you’d think I used the roof-box regularly! I bought it second hand for fifty euro shortly after we got our dog. Back when I was naive enough to think the dog would actually stay in the boot. Back before I found a cheap kennel locally and just left her behind. The dog that is, not my daughter. Although truth be told, I was tempted on many an occasion…

The kennels are on a nearby farm and at eight euro a night, are a bargain! ‘Farm’ is the key word here. It eases the guilt, she often returns smelling of cow shit! Genuinely. This could be a ploy to convince Mr. Kennel man’s customers that their miserable, lonely pets are running care free through his flowery meadows during their stay. Not in fact locked up in a concrete area measuring 6 x 2 feet!

When I bought the roof-box it seemed to burst open with endless possibilities of long journeys and the promise of future adventures. I used it five times! Mostly for wet beach gear, wetsuits, wellies and vain efforts to minimise sand ‘explosions’ upon returning from beach trips. It was also a handy threat; eat your breakfast quickly or you’ll end up in the roof-box, tidy up your toys or… you get the idea.

Big gold parenting star for me!

Lastly, this made me giggle in my Google image search for a roof-box image…

Can you imagine… buying a Lamborghini Aventador, and slapping a roof-box on the roof??!! I’d say its 0-100kmph speed of 2.9 seconds is trebled when the wind resistance caused by a roof-box is taken into consideration!