Archive for the ‘The Conquerer’ Category

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 https://www.youtube.com/watch?v=8-r-V0uK4u0 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!!

Brewing up a Storm of spinal imagery!

Published in Cork’s Evening Echo 30th April 2014

The urge to cough and scratch your right eyebrow is never stronger than when you’re pinned down, requested to STAY STILL, head braced in a contraption, inside the tunnel of an MRI machine. That is how I spent yesterday evening. Like an entomologist’s butterfly stuck immobile for all eternity in a plastic tube, though thankfully without the stabbing of needles and the time span!

Siemens will be glad to know; their logo is firmly imprinted on my brain for the foreseeable future, thanks to me being forced to stare at it and the top of my forehead in a mirror a lot for 85 minutes. Up close and personal with any fine (ahem!) wrinkles and thinking ‘6 weeks grey coverage my ass!’ about last month’s hair product.

It was a beautiful sunny evening, not a cloud in the sky, bird song audible on the warm spring breeze with cherry blossom petals floating through the air. Different story inside the MRI unit of the hospital I attend. Even with friendly staff, two chatty women in the waiting room and a bunch of yellow roses, the hum of the machine and the artificial recycled air still gave the atmosphere a clinical feel.

From my blue plastic chair in the waiting room, if I craned my neck to the left enough…up enough… just before tipping point… I could catch a sliver of blue sky and sunshine between the back of the hospital’s kitchen and a run-down maintenance prefab. I had to stop doing this though, as I was alarming a blonde-bob-lady with pearls and a twin-set, and interrupting her tales of the expense of repairing storm damage to her “cozy little place in Kerry”.

My cheery greeting upon arrival was quickly subdued. The receptionist’s opening remark was “we’re way behind”, great answer to me saying “sorry I’ve arrived a bit too early”. My two waiting room companions provided great entertainment and demanded little. A few ‘hmm hmms’ and ‘I knows’ kept them happy and reassured them that they had my full attention. They were deep in the throes of one-upmanship about health insurance policies, private schools and the best time of year to visit Marbella.

You are presented with a menu of music now before you robe-up and start the ‘back-to-the-wall’ shuffle between the changing room and the MRI machine. Two visits ago I had complained following an 85 minute Coldplay-endurance test through the headphones. Last visit the cheerful radiologist listed out a seemingly endless choice of bands, until out of embarrassment for taking so long to choose– I picked Metallica. A bad choice for an enclosed space, surrounded by machine gun type noises for quite a length of time! I was fidgety for hours afterwards!

This time, I picked The Stunning, one of my favourite Irish bands. It was a toss-up between them and Rodrigo Y Gabriella. I didn’t feel the latter would cover the gun noises of the machine well enough. I don’t suffer from claustrophobia thankfully, so I dozed in and out of sleep, woken only a few times when the part I was lying on moved further in or out of the tunnel.

Very close to the end, I think – as you loose track of time, the radiologist’s voice came through my headphones asking me to stop tapping my toes. I wasn’t even aware that I was doing it! Saying “come on girl, I know it’s a good song, but you’re screwing up your spinal imagery”. I fear I’m developing a bit of a reputation in the MRI unit, he already remembered my Metallica mishap, now I’ll be known as the toe-tapper to ‘Brewing up a Storm’ by The Stunning.

The song’s opening notes always transport me right back to 90s, and also make my toes tap it seems.

The mouse that roared!

My family clearly exhibit the herd instinct, if you ever meet us in an empty movie theatre; we’re the type to sit right in front of you! No matter how far back you go… we’ll hunt you down, and remember we’re tall, long and awkward. We then proceed to open noisy plastic bags, tweet about the movie while turning off the volume on our phones (everyone loves that blue glow right?) argue over the jellies, and when I start eating popcorn? Well then you’ll just move to avoid the missiles.

Any balance I have, stays out in the car park to hang around in the glow from a street light chatting with his friends. A tall, lanky teenager in comfortable shoes with his hoodie up, breath foggy in chilly night air, too embarrassed to come into the dark with me.

Darkness is not my friend. It likes to manipulate me. It is my puppeteer, with a nasty sense of humour. The movie theatre is my puppeteer’s cardboard stage, complete with velvet curtains. As he pulls my strings, he enjoys watching my negotiation of the steps and seats to climb over.  By the time I’ve climbed all the way back to where you’re sitting, I collapse exhausted on to my seat.

The puppeteer is a French man called Pierre. A grumpy red faced man who looks very like Peter Sellers, hat and all. Over the last few days, the scene on my stage has a new theme called ‘All the World’. I share my stage with two new characters, a mouse and a lion. Both of whom seem to twist and dance at Pierre’s mercy. My first impression of them was wrong though, my assumptions were based on Aesop’s fable where the lion is regal and powerful at first, then by showing mercy to the timid little mouse, he gets rewarded. The Lion and mouse beside me on stage are polar opposites to Aesop’s characters.

The lion starts out every scene completely at the puppeteer’s mercy, cowering from Pierre and afraid to step out of turn. He is riddled with self doubt and lacking in confidence. Happiest when his strings go limp and he gets left in a dark corner, most content when the attention isn’t on him. His roar so weak it can barely be heard.

The mouse on the other hand, starts off obeying Pierre’s commands perfectly, without question. Uncertain too at first, but as he gets used to the strings controlling him, finds ways to be more assertive and individual in his actions on the stage. He plays the game by following the puppeteer’s directions at first, but quickly finds ways to catch the audience’s attention. As the mouse grows in confidence, the strings manipulate him less and less. As more people crowd around the puppeteer and the stage, the mouse begins to break free from the strings. He starts to act in his own play, his growing audience react with great enthusiasm and support.

Slowly the mouse encourages the lion out of his dark corner, reassures him and together they learn to break free from the puppeteer’s strings. Happy and proud in their new found confidence, they sit down and enjoy the show.

Ahem… tap, tap, tap… Can ye hear me down the back?

As I embark upon this writing journey, I am full of ideas, full of exuberance and bursting with enthusiasm – most of the time…

The rest of the time, I’m questioning myself, holding debates in my mind and chairing committee meetings with different thoughts and ideas.

Tedious meetings, where I constantly have to reprimand my ideas for doing a crappy job of keeping the minutes. Lads come on! On top of that my thoughts forgot to bring the biscuits and turn on the hot water. How am I supposed to organise the pair of them when they can’t even turn up on time? I’ll have to root through the presses, see if my happy memories stashed away any leftover digestives after their last meeting.

Take a moment here to pause, inhale and remember the smell of any community centre or hall you’ve ever been in. I would bet that we’re all imagining a similar smell. The wooden floor, the plastic seats, the heavy velvet curtains if there is a stage (themselves a rich and aromatic history of past meetings and plays, the tales they could tell…) the toilets – which even though they were ‘cleaned’ every so often, you’d need to be stuck!!

Since I started writing this blog, I have experienced a whirlwind of feelings. I have cried, I have felt so utterly exhausted at times from my emotions but more importantly, I have laughed. Laughed so hard I spat coffee all over my laptop. Lucky I hadn’t put my left arm in control of the mug! Mostly I have been so utterly happy and amazed at the response my thoughts and ideas are getting. Not bad for a pair of disheveled hapless characters, scratching their head in wonder.

I have never listened to, or analysed my thoughts so much, and my ideas just keep on surprising me! What can of worms am I slowly opening? Should everyone be encouraged to keep a blog? Would therapist’s couches be gathering dust if we all examined our thoughts so much? Blogging gives me a new voice, a way to express my feelings, a way to share my ideas, stories and thoughts in a very open and honest way. Thank you all for coming, there will be refreshments served in 15 minutes.

Nice one! My happy memories left behind some luxury Foxes Double-Choc AND a few pink wafers.

This post is in memory of a dear friend, lost 6 years ago this week. Who commanded that stage, who stood tall and proud, who ran the most amazing youth club I was lucky to be a part of (in one of those halls), who had a constant twinkle in his eyes and who messed behind those velvet curtains.

Meet my left arm.

My left arm is stuck in the 90s. It parties non-stop like a pill popping raver. It behaves like a 20 year old who has just danced for 12 hours straight with the aid of copious amounts of chemicals. My arm shamelessly drinks gallons of strong coffee to keep itself awake after this orgy of debauchery. It still hasn’t had enough…

I wouldn’t mind so much, if I wasn’t dragged along for the ride. I am the grumpy neighbour downstairs rapidly banging my ceiling with a broom handle asking my nerves to be quiet. I am the nightclub bouncer trying to kick my arm out at the end of a night. Once upon a time I might have envied my arm for its hectic, partying lifestyle, its luminous yellow lycra top with a huge smilie face, its whistles and its lollipops. Now all I want is for it to behave normally, to stop partying and behave like a boring suburban arm who spends his weekends grocery shopping, mowing the lawn and washing his car.

I would be happy if I could touch-type again, use key commands for my work, hold my fork in my left hand (table manners were drilled into me growing up, I’m failing miserably at my attempts with my own kids by the way) and hold a cup of coffee without the fear of spillages. I am so thankful for the anti-shake capability of my camera, even though nowadays it’s usually my phone with something to lean on and steady my rogue limb that capture my moments. Give me a handful of popcorn, and standby by with your mouths open, hilarity will ensue. A normally behaving left arm is one of the simple things MS has stripped away from me. There is no doubt it is not one of the worst symptoms, jeeze it’s a summer breeze compared to my balance issues! Which are playing havoc with my stability at the moment. Ireland is being gripped by some epic storms this winter. Bad news for me because I’m tall, I blow over easily.

I spend most of my life nowadays trying to hide my symptoms, from myself as much as everyone else. I brush off questions about my health and treatments with vague answers. Oh I’m fine, everything is grand – not to worry. Followed up by me changing the focus of the conversation immediately, only my closest friends wear me down, persist and badger me for answers. I’m glad they do, otherwise I’d never talk about how the disease affects me.

I need to reprimand my arm, if he was a teenager, I’d ground him. I’m tired of his tremor party, fed up of his lack of enthusiasm at simple things like picking something up. I’ve had enough of his endless all-night-long stamina and I think it’s time he returned the Ministry of Sound CDs he borrowed from me six years ago. It’s time he started responding to my reprimands & treatments, gave me a break from unsteadiness, and made himself useful by cutting my lawn and washing the car.

Picture me on an armored horse.

His name is Gilenya*.  His armor made of steel and leather. Upon this horse I carry a turquoise flag emblazoned with one word, in a joyous playful style. Optimism. A sash across my own armored tunic reads – Happiness.

As I ride into battle, my inner voice roars in my ears.  It shouts encouragements and words of support. Most of the time I share my inner voice’s bravado and enthusiasm.  However, there are plenty of days when my stubborn outer voice and I, refuse to listen to my inner voice’s attempts at motivation.  Refuse to  listen to it’s upbeat thoughts of perseverance no matter what. We ignore it. We shout SHUT UP. We shout GO AWAY and leave us the hell alone.

My inner and outer voices have constantly been in cahoots throughout my life.  Being diagnosed with MS seven years ago isn’t the only reason they joined my party. Growing up as an only child, I had always invited them to my imagination, always asked for opinions, had always discussed details of my daily life with them at length. That and my black labrador kept me sane. Family, friends and neighbours were important to me also and constant contributors to my life, but so much of my childhood life was spent alone with my thoughts. Do not feel any sympathy for me, I was happy and content.  When I look back on my childhood,  a smile appears on my face. I was happy. I was lucky.

I am still happy. In spite of the hurdles life has thrown at me.  The tools for existing in my own little party, learnt from such an early age, are what I have to draw from, acknowledge and thank for keeping me upbeat, sane and more importantly – happy!

Happiness paired with optimism.  As I leave the party and go into battle daily, it is vital that I carry these flags upon my armored horse. This horse called Gilenya*, was preceded by a strong and faithful beast called Tysabri*. An unfortunate development of a virus, threw me from this horse. Landed me with a thump. For six months my battle raged without any help from my trusted steeds. My colourful flag of optimism flapped listlessly at half mast. My sash of happiness  faded in colour as my fighting spirit weakened.

The arrival of Gilenya* in my stable, with it’s strong armor and determined spirit, has put the colour back into my sash of happiness,  and has lifted my flag of optimism right back up! I continue to ride into battle with a smile on my face.

Damn you MS and the horse you rode in on.

 

Gilenya* is a relatively new treatment for MS. I now take a tablet daily. 
For information visit: http://www.gilenya.com/c/how-gilenya-works
Tysabri* is also a treatment for MS. I attended the day ward of a hospital every 4 weeks to receive an infusion. 
For information visit: http://www.tysabri.com/tysabri-basics.xml
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