MS Snowflakes

Is this a death sentence? How am I meant to react to this? I thought MS  was hereditary but no one in my family has it? These are just some of thoughts that came to mind when I was told I might have MS. I recalled giving just £3 to the MSReadathon when I was 12 and felt bad because I hadn’t even read a book. Was this my punishment? How long before I’m going to need an aid walking or a wheelchair? I only ever had one experience in my life of seeing MS first-hand. It was devastating. Not just for Thomas but to those close to him too. My GP soon put my worries at bay but I was hardly vocal about my concerns. I could barely talk. I told her about Thomas and she said it was very unlikely I was going to have the same experience. Peoples knowledge of MS and medications had improved greatly in the 10 years since Thomas had passed away. She arranged for myself and Michelle to come in and meet her a couple of days later so we could both go through our concerns with her. Within those couple of days we got slightly more educated but we still knew very little. The doctor arranged an appointment for me in the Institute of Neurology at the Mater Hospital so we had to wait a few weeks before we could know more.

After we knew more, and had a better idea of what was down the road, I felt comfortable enough telling my mam & dad and eventually my sisters. Telling my folks was never going to be easy. I can’t begin to imagine what it must be like to hear one of your children tell you they have a chronic illness. Particularly when they knew what I had seen years beforehand being so close to Thomas’ family at the time. We did it over a cup of tea, what better way is there? I had Michelle beside me and she was able to put their minds at ease as much as I was.

Telling Kerri was a bit more difficult because I had to do it by myself. I went over to spend a few days with her in England. She picked me up from the airport. We went out for dinner and I eventually managed to tell her back at her house while we were watching a movie. I was texting Michelle to say I couldn’t tell her but, once I did, it was such a relief. She knew it was going to be something like MS. I’d been suffering from a wonky head & blurred vision for such a long time that she’d done a bit of her own investigating. I think she start slagging me more or less straight away; no special treatment for me, I’d expect nothing less from my little sister 🙂 Then of course there’s Donna, who was over in Canada pregnant on her first baby. Her world was going great. I wanted to at least wait until the baby came along until I told her but this was around March and she wasn’t due until July. So my dad told her husband Dave and between us we figured out the right time to tell her. When I told Donna she handled it great like a real big sister – ya could hear the mammy in her already.

The Byrne’s doing shots at our cousins wedding a few years back  

My fear in telling people was that they would associate me with really sad stories such as what I had seen with Thomas. I also followed Marie Fleming’s story quite closely. You’re only ever going to hear the extreme stories in the news. For the most part people didn’t really know too much about MS, when I told them that’s what’s been wrong with me, which was a bit of a relief. I suppose I’d only ever paid attention to news stories regarding it and never heard any stories were people get on with it and live relatively normal lives. Even in recent films I’ve watched (Trainwrecked and X+Y) MS comes across as harsh and brutal which it can be but not always. Now I really listen out for MS good news stories and they’re regular enough. Just like no snowflake is meant to be the same, no one person has totally the same type of MS. We’re all a bunch of MS snowflakes 🙂

Thomas’ daughter would say that her Dad loved life. I was young, foolish and didn’t really understand what that meant at the time. Not that I hated life or anything it’s just it is what it is;  that’s what I used to think anyway. But I get it now. I wasn’t allowed cycle while I was suffering my attack. I started walking up to Drumcondra and down Griffith Avenue initially to try recover. It was a bit of a dreary route so I started walking to Clontarf instead. Up to the Moai Statue past the Sheds pub and back. Around 8km in the freezing cold most days, some days were sunny though. This was February through to March. I started back cycling in April just a week after returning to work. The weather  was great and I craved going back to Clontarf and cycling by the promenade I used to walk by everyday. Every other lunch break during the Summer I would cycle to the Wooden Bridge at Bull Wall and back to the office. There’s a lot going on at lunchtime.

The Moai Statue in Clontarf: Another one of my inanimate pals

It takes just over 5 minutes to cycle from the office to Clontarf promenade. Greeting me would be the sun reflecting off the sea and glaring over Dublin, the chimneys standing proud as ever, dinghies floating on the water when the tide was in or parked in the sand when the tide went out, if it was windy you would see all the different types of birds struggling to make their way back to land,  while I would be flying along on the bike with the wind behind me knowing full well it was going to be right in my face on the way back, families with their kids playing on the grass, couples having picnics, people bringing their dogs for walks and swims in the sea, people of all ages out walking & running, kids carrying canoes out to the water, if the tide was out you would see people with their wellies on gathering buckets of mussels, on the cycle track there was always a unicyclist, a lady who couldn’t be less than 100 years old cycling as well as anyone with all the proper gear on, a man cycling with his twin babies in a carriage at the back; a pink helmet and a blue helmet, and Howth in the distance (the place the Northside loves the most). That’s just touching on what you would see on any random day. We can get so hung up on all the bad things in the world that that we can forget we’re surrounded by a lot of beauty.  I suppose it’s up to you what you consider to be beautiful. I’m starting to sound like a hippy, not much chance of me growing hair like one though. I couldn’t imagine having the same appreciation for life a year ago. MS has certainly given me that, not a death sentence in my case but certainly a kick up the arse.

Life moves pretty fast. If you don’t stop and look around once in a while, you could miss it.

Ferris Bueller












Turn and Face the Strange


image1As anyone who’s read any of my blogs knows I like throw in an odd quote or two. I was trying to think of a David Bowie quote that would be fitting for the blog since he passed away. All I’ve been doing for the last couple of weeks is listening to Bowie on Spotify or watching old clips of him on telly or YouTube. Michelle is sick of him already 🙂 I can’t get enough, he has to be one of the most interesting people ever with some great tunes to match. So finally it dawned on me that Changes is one of his signature tunes and what he was all bout. And changes are exactly what I have had to face over the last year.

It would be pretty easy to quote “we can be heroes just for one day”. Which we certainly can be. In my first blog I talked about a motivational speech called Be Your Own Superhero. But in my case it’s everyday not just for one day. Particularly on a Monday, Wednesday & Friday; injection days. I’ve been injecting myself with Copaxone since October. I was given an option by the neurologist of which drug I wanted prescribed to me. I was posted out dvd’s and information booklets on what was available. There are a lot of drugs out there to help prevent relapses. I take mine in conjunction with trying to maintain a healthy lifestyle. Michelle and I sat in one night and took note of all the different treatments available and their side effects. Generally they all seemed to provide similar chances of preventing a relapse; between 30 – 40 %. I think Copaxone provides around 35% chance of preventing a relapse. It was slightly lower than some other options but there is much less chance of side effects also. One option was a tablet with a much better percentage rate but there was a history of one fatality as a result of taking it. That was one too many for us.

We met with the neurology nurse and it was agreed that I would be prescribed Copaxone. I was given a Long-Term Illness booklet so it costs me nothing. (On a side note, the MS-society also arranged for me to get vitamin D on the LTI 🌞) The drug company sent a nurse out to my house to show me how to inject. Both my dad and Michelle were there too. We talked through the whole process and then began to practice injecting on a small pouch the nurse brought with her. I slowly practiced piercing through the pouch as if it was my own skin. There’s the option of using a pen to inject also but the nurse recommended just using the needle if I could so that’s what I’ve been doing. There’s loads of different injection sites on my stomach, the tops of my legs and either side of my back just above my waist. Obviously I can’t do the back myself. Michelle practiced on the pouch too – Thank God she practiced! Her first go can only be compared to a scene from Psycho, “That’s a pretty good stabbing motion you got going on there honey, but please remember I’m a human being”. 😀

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Stabs of love ❤

Clearly her technique has rapidly improved and I’m still here to tell the tale 🙂 I get a reminder text message at 7a.m. each injection day. It really is routine now. Copaxone has to be stored in the fridge but I leave one needle out overnight so it’s not too cold when I inject. There are still side effects. Every time I inject it’s like having a bee sting that can last up to a couple of days. Aloe Vera usually soothes it so I lash that on just after injecting. I was told I may suffer symptoms similar to heart/panic attacks but they would pass. I’ve been lucky not to have any of those kind of experiences yet. I have to get a good chunk of skin to inject into which is easy to find on the stomach but not so much on the legs. We’ve got a routine now for the back which is injected into every 5th and 6th injection day. As I can’t see what’s going on Michelle has to talk me through it which really puts me at ease. I know I’ve mentioned about being your own superhero but it’s ok to rely on other people to be your hero sometimes.



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A news station in Washington got on to me to say they were going to read out my twibute to Bowie in one of their reports but i don’t think they ever did 😦


Brown Hula Hoops


Last night we went to see Jersey Boys in the Bord Gais Energy Theatre on Grand Canal Dock. I work just around the corner so I stayed in the office while I waited for Michelle to come in and meet me. She was working late so we would only have time to go and see the show. I needed to fill my belly so grabbed a maltesers bar and packet of brown hula hoops from the vending machine in work. As I sat in the company canteen munching away, staring at the Convention Centre’s reflection in the Liffey, I was reminded of all the nights I used to stay late in work eating crap. I would usually work through lunch and rarely see the outside world except for going to and from work. Especially on a Monday and Wednesday, when after work I would have college as well, the amount of time I spent outside in the fresh air was minimal. No surprise then that the first time I recall noticing my first symptoms of blurred vision and dizziness was on a nighttime walk home from college.

I was a massive Oasis fan growing up. I must have read the notes in the sleeve to their (What’s the Story) Morning Glory? album a thousand times. I loved the line “They have gone to work so you can go home”. There’s a nobility to that reference that perhaps I thought I was replicating by working long hours and taking very little breaks. I knew I wasn’t doing myself any favours but carried on regardless. I wasn’t the only one. I had thought because I don’t drink excessively (compared to many) and have never even put a cigarette in my mouth I was living a relatively healthy lifestyle. I was wrong. There’s no definitive lifestyle choice that leads to a diagnosis of MS. However, very little exercise and fresh air accompanied by substituting proper dinners for crisps and chocolate bars over a prolonged period of time have to be serious contributing factors in my case.

I often wonder if nothing had happened to me what would it have taken for me to have the realisations that I have had over the last year? I had always threatened to look after myself better, like I think we all do, but I never got round to it. I can definitely relate to Homer Simpson when he kept threatening to go see Mr. T in the Mall but when he finally got round to it Mr. T had gone and they didn’t know if he’d ever be back 🙂

It’s all well and good threatening to do something but you have to put into practice if you’re genuine about it. I’ve been left with no choice but to look after myself better than I had been. Luckily though I actually enjoy the lifestyle changes I’ve been making. I also know that I will always be looking at ways to improve and change. It keeps me on my toes.

Today I was all prepared for another day of trying to eat what I consider to be healthy and go about the usual routine in work. Just before lunch I started to get these cravings. Those brown hula hoops were calling me. They’ve always been a weakness. In the past I definitely would have given in, “sure I only had one packet last night it’s not a big deal”.  “No I’m all about moderation, I must resist!”. Argh the conflict!! The thoughts now though of putting stuff into my body that’s going to make me feel lethargic, no matter how tasty, does not appeal to me in the way it once did. Suffice to say I resisted, I went on my lunchtime run and even got a PB for 3km. Phew!

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It’s such an eye-opener though how old habits can come back to haunt us so quickly. I’m not saying I’m off crisps for life but they will in no way be consumed as regular as before. There are so many better alternatives. I know now that by taking better care of myself I’m able to set goals and dreams that I would never have even thought of before.

“All the dream-stealers are lying in wait, but if you wannabe a spaceman it’s still not too late” 

Oasis – d’yer wannabe a spaceman?


Screen Shot 2016-01-21 at 23.14.21The last page of the sleeve to (What’s the Story) Morning Glory? I got full marks for copying most of this into an essay in English Class back in 6th year in school 🙂


New Year, Same Me

Happy New Year! It’s been a good start to the year. Wedding plans well under way and one of my groomsmen has become a dad for the second time. So far so good. I probably shouldn’t be blogging. Have exams coming up and should be studying. Motivations have changed though. I’m not much of a multi-tasker and my mind is more focused on health at the moment more than a degree in financial services. I don’t see that changing although I will give college a decent shot until May. I’ve stuck with it for nearly 4 years so not long left now. Semester one exams will be over next week then 4 more months of studying and stressing and I’m done (I hope).

Nutrition is really one thing that I want to develop my knowledge of. I’ve mentioned before that not long after making a few alterations to my diet I felt a massive improvement in my condition. Listening to and reading the news though there’s always contradictions as to what is good for you and what’s not. I’m no expert and won’t be starting a healthy eating blog anytime soon but there’s a few things that I’m beginning to realise. For a start eating healthy gives you a great boost but it doesn’t happen overnight. If you’re used to eating food that’s considered bad for you an apple isn’t going to make much of a difference. It takes time. I actually really like preparing food now just as much as eating it. Chopping mangos & pineapples, in particular, I love. Probably just because it’s like some sort of release. I’m sure there’s been studies about things like this. I probably have some weird sort of fruit chopping fetish and need to see someone about it before I move onto to vegetables…. too late 😋

We have a group scheme in work where we can get discounts on certain things. One of which was a course on nutrition down from €395 to €9. Yes €9. What is there to lose? €9? I don’t mean to be boastful, but I can afford it. It starts in February for a month and it’s all online. Hopefully it will give me an idea whether I want to go down the nutrition route or not. But one thing I will stress is that this is by no means a life changing New Years resolution. Over the last few days all I’ve been hearing is “New year, New Me”. I’m not having that. I don’t know many people who said they were going to have a drastic lifestyle change on a random Jan 1st and stuck to it for the rest of their lives. In my experience small changes over time work best. I’ve had no real choice but to make changes. And even then, they’re changes I was always threatening to make. Well, for the most part anyway. Eating healthier and exercising more were always on the to-do list I just needed a push in the right direction. MS has certainly given me that.

Eating healthy and exercising more are nice things to say but you have to put them into practice. After all, what’s right for someone else may not be right for you. I’m still figuring out whats right for me to be honest. I’m getting there but it doesn’t happen at the flick of a switch. I’ve been given some good advice and pushes in the right direction but in the end it’s up to me how I implement these. Personally I try to prepare most of my food for the day. I have a plethora of lunch boxes in work with me each day. It means either getting up earlier in the morning or staying up later at night. I have to inject myself three mornings a week (thats another blog altogether) so that usually is what motivates me to get up early and prepare for the  day ahead. I’m starting to get better at running so try do a few km each lunch break during work. I sit beside a marathon runner so that’s motivation in itself. Although I’m happy just to do the 3.5km a few days a week. Plus the route I do has me running towards the Poolbeg Chimneys for the last km. Today was a good day for running. The sun was shining so vitamin D was absorbed and it was dry for once. One of the lads even sent me on a picture of the chimneys from Dolymount Strand. Just hearing that people are out and about taking advantage of good weather and getting exercise encourages me.

By all means I think people should make New Years resolutions. Everyone looks back at the previous year and can dwell on what went wrong. And that’s understandable. Sometimes the only way to learn from mistakes is by making them in the first place. If you’re going to make one, I recommend making a resolution that’s achievable. Look back at the good things from last year too and see if that can be bettered or even just replicated. Instead of “New year, New You” go for “New Year, Improved You” or “New Year, Same You”. By trying to be the “same me” I know I will constantly be looking for ways to improve my lifestyle and stay healthy. We can all do with a little improvement every now and then regardless of what time of the year it is but in moderation. It’s important to be proud of who you are. We don’t have a choice to pick the body we’re in. We only have a choice in the decisions we make.

“You have suffered enough, and warred with yourself, it’s time that you won” 

Falling slowly – Glen Hansard and Markéta Irglová