[12] This Is Our Party

-- We did it our way! --

In early August I spent a long weekend in Dublin, and asides from lighting digital candles I turned into a tourist for a few days. I was supposed to blog that week, but got stopped by a kidney infection that brought my temperature to an almost record high of 39.4C within a few hours.  This is that long overdue blog.

The beauty of going from Northern Ireland to the Republic of Ireland is that I get to keep many of the tastes and sounds of home, but still have to hate roaming phone charges.

We started off our three hour long roadtrip with me drowning myself in loud music. It ended that way too. We spent no longer than an hour at the revolutionary Muscular Dystrophy Ireland Home from Home before we took off to see Peter Pan at The Helix.

En route on the streets of Dublin we hit a far too well hidden speed bump. This caused me to come completely of my chair and fly in the air for a few seconds. I landed awkwardly on my right side and I ended up with a painful right shoulder, neck, side and hip. I three nights without much peaceful sleep as a result, and my hip still hasn't fully recovered as I don't have a fully formed hip.  I'm more interested in more recent injuries now caused by a suddenly faulty mattress.

Of course, six hours without a cup of tea is completely unacceptable. Tayto and Tea became dinner, before I accidentally ran over some poor woman's toe while in a tight space. Peter Pan was highlighted by a little lad thinking it was Panto season and shouted that Peter was behind the rock during the Lagoon scene to rapturous laughter. The quote of the day definitely went to the nephew, who exclaimed that the cartoons were "speaking China" when I put an Irish language station on.  A widespread relief washed over him when the iPad spoke English to him.

Pre-Show tea!

The next day, asides from being Candle Day, was spent at the zoo. Belfast Zoo is built on a mountain and me driving on the hills gives me the heart rate of someone doing an Iron Man race! So when we get to Dublin this is always on the top of the list. Kian started presenting his own nature show in front of some of the animals to my amusement, and I found my Squirrel Monkeys. And I even managed to avoid getting wet! Kian and I were both crazy in our amount of fun, even if he did sit on my knee most of the day so I could cart him around.

I spent my 2013 SMA Candle Day in a zoo, yes.  I also spent it talking to a new friend with Cystic Fibrosis from Dublin and putting a digital candle on my phone.  I lit it as much in memory and support of all the Angels and earth warriors with SMA as I did for all other types of neuromuscular disease.

Candle Day

The next day we got to visit Kilmainham Gaol, a former Irish prison.  When I studied history as a GCSE student, I understood Americian, Russian and even Asian history without much of an issue.  The very second that there was Irish history involved I was confused.  I credit a local writer with the fact that I actually passed that section of the exam.  When in Kilmainham I was in the spots where the people we learnt about met their death, and their futures.  I saw their cells, and how they lived.  The irony of it all was that it was so much more accessible than what I've been told of the modern day prison.

Kilmainham Gaol

We then skipped over to the interactive medieval museum Dublinia, and I laughed the whole way through it. My nephew dressed up multiple times, and definitely looked like something out of How To Train Your Dragon.

Viking Hut Family

From there, I assumed my natural throne as high navigator of the unexplored lands, and found my way to the Wax Museum, which presented me with one of my favourite things - science.  Right down to Batman and the ejector seat which was invented by a local man from down the street.

BatDude

Ejector Seat Daddy

On our way back to the car we found the awesome Mr Simms Sweet Shop.  It's safe to say I exited with enough sweets to last me the rest of the month.  They also had pretzel M&Ms which delighted me to no end.

Our last day in Dublin was bittersweet, but gave me the best pizza in Dublin, cinema and my favourite picture of the whole holiday.  It also reaffirmed my hate for cobble stones.  I hate the things more now than ever.

Kian and Angela impatiently awaiting pizza.

Kian and me dodging the rain.

Of course, no trip to the cinema at the moment is complete without a picture with One Direction, however crazy you may look doing it.  Dublin clearly knows that I'll be back soon to see those very people sing up a storm.

And with that, we headed home.  We will be back soon, as my obsession with Wicked will lead me south in December.  Until then, it's back to university in just over a week.

The music this time comes from the amazing Savannah Outen and Jake Coco.  Buy their stuff and support independent music!

[11] The Sky Will Guide You Home

-- When the darkness comes... --

When I was just 16 I attended my first Muscular Dystrophy Campaign lobby in Westminster.  I was greeted by MP's, Ministers, Peers and a Clay Aiken look-a-like who has become our high master of all things lobbying.

The 16 year old me was quiet, shy and often petrified of starting a conversation.  I very quickly found a piece of home in that room and in those halls, and I had my first conversations with Dave Anderson MP and Baroness Thomas.  Those two individuals constantly battle on behalf of those of us with muscle disease in the chambers.  Within those few all too short hours, my eyes opened and I began to realise the difference just talking to people can make.

With Dave Anderson MP

With Ivan Lewis MP and Baroness Thomas

After that day, I couldn't stay away.  I was back and forward so often that I actually had a steward ask if Dave was my MP when we were talking in the corridor.  We started making real progress on a UK wide front, and it was time for Northern Ireland to make some progress itself.

In January 2010, a 19 year old me went into my second AGM of the Northern Ireland Council for the Muscular Dystrophy Campaign.  On the agenda was a visit by Carmel Hanna, an MLA who had just retired from public life.  Instead, a Dubliner cycled in and filled the room with so much fresh air that we were all bowled over.  So many of the things he said made sense, and within a half hour he got us, and what we fought for.  While what he said will never leave my lips or fingertips, his words of wisdom that day will never be forgotten by anybody in that room.

That person was Conall McDevitt.

Before he left that day, he had managed to find out that I was a Broadcast Journalism student, told me that he had just left the world of PR and not to let go of the power of the written word over the spoken.  Little did I know of the power he would bring to our voices, or the progress he would give us.

When we established our Muscle Group here in Northern Ireland, Conall was the first to cut through the air and fix problems.  He wanted details, phone numbers and names.  He got people jobs, he gave their failing muscles strength.  Most of all he gave me hope.  A light at the end of the tunnel that we just might get there.

By the end of that meeting he had found out that I was moving into the world of PR, and gave me a valuable early insight into the world of communication studies and applications.  Stormont was about to dissolve to allow the election to take place, and it was then that he told me that whether he won back his seat or not, he would make sure we got an All Party Group.

Election time was the hardest election I've endured, except for the Obama through the night results.  When I finally heard that Conall had been elected, the cheers through the Hollywood household could have been heard in California.  We were delighted, and the public had picked a man we knew would represent his People with all heart, soul and gusto.

September came, and Conall sat in our Chairperson position.  He opened each session thanking people for taking time off work, and praising me for being a University rebel and skipping class once in a while.  He led us with grace, intelligence and humour.  He examined some of the most cruel disability on earth, while he somehow managed to only see people and not wheelchairs or ventilators.

When we started people were being given devastating diagnosis over the phone, wheelchair services were horrid, and the Health Minister didn't understand or know what was going on.  Piece by piece, Conall helped us put our jigsaw lives together into a report.  A report that will transcend millennia as our first step towards a better future.

In his two years with us, Conall has gave us laughs, gave tears less reason to fall and he has improved our services beyond compare.  Yes, they were our stories, and yes there were teams behind him.  But if one man doesn't take a stand, progress can never be made.

Walt Disney always said to Keep Moving Forward.  We never moved as forward in the past as we did with Conall at the helm.  He's helped many of us individually, and all of us collectively.  He taught me what a true politician stands for - progress, honesty and their People.

Without wading into too much politics, Conall made a simple, stupid error.  I made a few of those in my time.  It's life to make mistakes.  Unfortunately, one tiny slip as a doctor or a public figure can ruin your professional standing in moments.  Make a huge blunder in an office, and you're just told off.

While Conall did the honourable thing in stepping down, there are things asides from his politics we'll all miss.  His wit, his football crazyness, and the constant will to move forward.

For many of us there is a Martin Luther King, Nelson Mandela, or Bob Dylan to spur us forward.  Conall guided me through much more than a report to improve neuromuscular services.  He was and is an unofficial mentor who showed us all the lines between honour and dishonour.   His politics will forever be a breath of fresh air, and his lessons will never be forgotten.  As he moves away from public life, I know we will still receive his wisdom, as he serves us in a different capacity.

Conall will find the sun in this situation.  He will continue to be a positive footprint on this earth.  I look forward to running in a marathon beside him in my wheels.  He has my respect, thoughts, prayers and positive vibes.  All the methods and words of thanks in the world could never repay what he has given us.  This is a thank you, a good luck and an acknowledgement that he can't get rid of me by resigning!

That being said, I have one final public message for Conall.

Keep Moving Forward.

Conall McDevitt

Please buy Colbie Caillat's When the Darkness Comes from iTunes as it isn't available on YouTube.  The light will shine again!

[10] Catch My Breath

-- No-one can hold me back.  I ain't got time for that. -- 

Today is August 31st.  I'm awaiting my letter from University for my final year induction, and I feel like I'm going to be flung into a whirlwind.  I'm recovering from a nasty UTI, and my liver is most definitely suffering from the treatment for it.  My stomach isn't playing ball either.  I have a 12 months ahead of me which I know will bring me hugs 10 years in the making from Kayleigh, music I can dance to, and Christmas in a thousand different ways.

August is SMA Awareness Month.  So many of us seek a cure, a treatment, something and anything to stop hundreds of kids going to heaven every year before they even see their second birthday, dozens of those before they turn eight months old.  

My chance at a cure is gone.  My hips are too malformed, and my knees too stiff to let me even stand if I could take weight on my feet.  I stood only once, when I was about nine, being held up by too many people to count and I screamed harder than I ever have.  If someone walked in my door now and offered me a cure, I would refuse it.  My mum would probably curse me up and down for it.

If someone walked in now with a treatment which gave me a chance at a healthy life where I could go dancing in the rain, wave my arms at a Jason Mraz anthem, and let me give free hugs instead of receiving them then I would have it in a split second.

If Music is the food of Love...

My wheels are part of me.  I like speeding down empty hospital corridors after nine with my nephew when I'm supposed to be on the ward drinking plenty and resting.  My room has as much hospital equipment as it does evidence of a 23 year old who acts like a big child.  My desk is dotted with CD's, bead art, and a picture of the biggest day of my life signed with a message from the man who pushed me towards making a difference instead of just existing.

Truth is, I was sick this August.  But I haven't coughed up any nasty stuff since April.  APRIL!  I'm singing in tune again, in one of my rare moments of lung health.   There are bruises on both my wrists, the inside side of my right arm, and a red needle prick between the knuckles of my left hand.  But I don't have bruises on my ribcage, and it's not painful to breathe.

When I was discharged on Tuesday, it was so I could go home.  I had missed too much cinema to do that, and went straight to my local.  Since then I've seen Elysium, This Is Us and The Mortal Instruments.  I've all but moved into screens 3 and 5.  

Being a fangirl never hurt a smile!

Truth is I have SMA.  I have to fight it every single day, not just in August.  I hate it when it makes me sick.  I am honoured to fight beside my fellow SMAers.

I'm catching my breath from my most recent antibiotic.  There's no point in stopping to do it.  I will keep living, fighting, breathing, singing and probably giving politicians headaches.  I will never be normal - I'll always be a crazy Claymate, WordNerd, Obama-loving wheelie trying to bring chariot races to the masses.  

I'll always have SMA. 

SMA makes me who I am.  I'll spend the rest of my life making tyre tracks, and proverbial footprints.  I wouldn't change that for the world, aliens or Tonto's humour.

Fight with us.

[9] As Long As We're Here

-- Let's make the most of our time... --

The weekend in hospital was never my favourite. It's fairly safe to say that it still isn't. And with a bank holiday threw into the mix it's been a quiet weekend.

My temperature finally came down slowly without the need for me to lose my temper with it. My appetite finally returned, and my bowels decided that they would actually digest some nutrients for a change.

Over the weekend, as my appetite came back I had Little Wing pizza not once, but twice.

Then, despite the nausea the antibiotic causes, I sent the parental units off to get me chicken wings from Dominos, which I was determined to eat at least some of. I succeeded.

Sunday and Monday contained rough mornings. Because of some of the medication I was taking for my bowel to wake up, I think my potassium levels dipped slightly. Eating some banana helped, but I've been little short of wiped out on those mornings, and by evening I'm back to my old self again. I am still feeling really nauseated on the cipro, but trying to fight through that. I had a dose about 20 minutes before publishing this and I still feel sick.

I push through for the funny moments, like when my sister, niece and nephew brought me up this mug. Aside from the obvious sarcasm which has been the talk of the ward, I've been able to have full sized cups of tea, and not two spoonful sized cups!

What really pushes me through though is family. My nephew got his new game, and is praying for me to be released tomorrow even though my temperature did a little jump back up to 37.7 this evening.

People have been commenting on how much I smile in hospital. The answer is simple. Hugs like these make you fight back, smile, and enjoy every second of life while you're here.

[8] I Won't Give Up

-- We're still looking up. --

Sometimes, my hospital stays don't go as I plan. This time around I planned to be on a full dose of cipro by the end of the first 24 hours, and by 52 hours my temperature would be normal. Alas, we're almost 120 hours in and my temperature is still high. I've only been on the antibiotic two full days thanks to my tube exploding half of the oral suspension all over my dad.

My temperature has moments when is goes down to normal, but it's incredibly frustrating when it doesn't stay down for two sets of observations. In other news, my heart rate is now sitting under 100, and my oxygen saturations are up from 97 to 100. My CRP infection level measurement has come down from 96 to 34 without being on the full dose, so today will tell all when we finally get a CRP reading from being on 500mg of cipro.

My numbers all look good, and I'm managing to stay out of bed most of the time. I still have times where I'm woozy, and I accidentally drove into a bay with no beds and loads of chairs because I thought that was where my bed was. I've seen the nephew a number of times, and the dutiful sisters have delivered me a Cookie Box milkshake most days. The nephew did threaten to box a doctor for taking blood while he was there though!

I've been increasingly well enough to escape from the ward and go downstairs for a little while. Although at first I was driving in wacky lines, I've finally figured out how to drive straight and not hit people. I've also tried numerous times to watch the first Iron Man, but my deafness has been defeating me this far. I did take a quick trip to the vending machines the other night, and listened to BBC NI programme Talkback on the ward looking like an eejit with a crisp packet on my head.

Yesterday I had an awesome visit from a university friend who I met while campaigning for Chris Murray to get the VP post in the Students Union. It was then that, after days of not eating and just barely drinking enough, that I developed a crazing for pizza. Not just any pizza though - a Little Wing pizza. By evening, I was actually hungry and managing to eat a little, so the parents brought me one back from the shop and I surprised even myself by eating a full slice!

This morning, my body has decided to wreak madness. I have two mouth ulcers, and now two cold sores. This is a common thing for me while I fight this infection.

I wear my #BandOfOrange and #SmashSMA bands with pride while I fight, knowing I am not the only one. We fight together to win the fight against muscle disease, so that a doctor won't laugh as I ask for my CRP levels and talk in his lingo.

The good news is that my sarcasm is well and truly back, and I'm still running up that hill, with mum and dad helping along the way. I am locked up in here until Tuesday at the earliest, but I'm not giving up yet!

[7] What Doesn't Kill You

-- Makes you STRONGER! --

It is SMA awareness month. It would not be complete if I didn't manage to get sick.

For someone with SMA, catching a common cold can be as dangerous as double pneumonia. I have just 30% of my lungs working. Thankfully, this time it's not my chest that is playing up.

On Monday evening I went out with my PA turned friend to see the supposed horror film The Conjuring. Because it was a scary film I thought I had goosebumps. When we got home we discovered I had spiked a 38.4 degree Celsius fever. Over the next twelve hours my temperature kept climbing, until it hit 39.4 while I waited on an ambulance to pick me up and get me to hospital.

For the first time in two years I felt too flat to get out of bed. I was dizzy, dry, hot, thirsty and I felt sick. All I wanted to do was get the guy from The Green Mile to take the infection from me. I was angry at myself, as I knew I had probably missed symptoms, and I lost my fighting spirit for a few hours.

I was due to go out with another friend on Tuesday evening. I was angry that the infection had picked one of the few times I find a slot when I'm free to go out with friends to show it's ugly head. Some vitamin water helped cool me off slightly, and I managed to text round those who absolutely needed to know at that moment and put a quick status up on Facebook and Twitter. It took me almost 5 minutes to get through those first 140 characters because my tremors had taken over and I felt like a zombie.

But as I cooled off over the following hours, my natural instincts kicked in. I did this all the time. I will beat it again. I'm going to fight.

That night we started 250mg of cipro. A well known antibiotic sometimes referred to as bleach for the bladder. I almost certainly have a urinary tract infection, or UTI. We'll have that confirmed within the next 24 hours hopefully. By evening, I was nibbling on Tayto cheese and onion crisps and my sarcasm had returned.

This infection is most likely caused by the fact that there are only three places in the whole of Northern Ireland where I can pee outside of my own home, not including hospital.

In December 2011 I suffered an anaphylaxis, or severe allergic reaction, to Tazocin. I had been using Tazocin to treat a number of infections for 4 years. My reaction caused me to stop breathing with nobody on site capable of putting me on life support. My mum and dad worked with the teams around me to use my own equipment, and together they saved my life.

As a result, I have to increase the dosage of antibiotics over consecutive doses surrounded by people who are capable during a crash, one of my parents included. One of them is with me round the clock as a watch guard, and my epipen is always at hands length.

We're currently on 375mg of a 500mg dose. Today was a good day. Although I drove like someone under the influence I finally got out of bed and into my chair. I'm still struggling with food, and tea is hard to drink. But I'm getting there. The good moments are outnumbering the bad, and my heart rate is coming down. Provided my infection levels, or CRPs, are down from 96 tomorrow and I keep improving I should get home before the weekend.

Prayers, thoughts and virtual hugs only give me more fight. Thanks so much for all the love, strength and light you've been sending. I'm on my way up the mountain again, and I'm going to keep running up.

[6] Infinity to One

-- We can beat the odds, we're a miracle. --

Saturday, August 10 was SMA Candle Day. To honour those we lost, and to celebrate those still fighting Spinal Muscular Atrophy, we light a candle every year at 8pm wherever you are to reflect on our fight.

This year was my first candle day away from home. I was in Dublin, a beautiful Irish city around 100 miles south of my home. While my holiday blog is yet to come, I wanted to show you the candles that were lit for SMA and to show you another hug picture.

Jason Reeves is a fantastic, soulful musician. His song Infinity to One talks about finding that one true soulmate, and the odds of you knowing and surviving together.

For me, it talks about the odds of being 23 with SMA. It puts all our hopes, fears, dreams and nightmares into a song. But I've learnt to ignore the fears and nightmares, so all I hear now are the hopes and dreams.

I heard of a lady with the intermediate form of SMA living to be 53 last week. I'm aiming for beyond that. I have a family friend in his 60's. It can be done. I will try to do it.

Abbi Bennett is a beautiful young girl with Ullrich Muscular Dystrophy. A gust of wind can knock her over. I wanted to share this picture of her and her daddy, Gary. The candle we lit wasn't just for SMA, but everyone with muscle disease. I reflect on everyone. We are all in this together.

With that said, many people lit their candles right around the world. You can see these below. Each was lit in memory, or in honour of a special person. Eleri holds her own candle in strength with our community, just as I did with mine.

Look at these candles and know that even if we are destined to fight our whole lives, we fight together.

Another candle day has come and gone. Our fight continues.