Phoenix from the Flames

“How we are in the future will be founded on how we behave today”

I classify as a newly diagnosed person with MS. That is; I’ve been diagnosed within the last 3 years. Diagnosis for me came within a few months of my MS symptoms making their way to the surface. I’ve heard stories of people having symptoms for years before being diagnosed. This really brings it home how lucky I’ve been. I still feel I need to capitalise on that luck. Living close to Dublin city centre means that I’m never too far away from an arranged MS meeting or talk. I’ve attended a few talks about MS recently and it’s taken up a fair chunk of my free time.

The talks vary in content. Some information overlaps, some I’m hearing for the first time and some contradicts what I’ve heard in previous talks. I find myself trying to put all the pieces together to find what’s right for me. This can prove frustrating.  The Overcoming Multiple Sclerosis (OMS) diet is widely agreed to give the best chance of preventing relapse along with regular exercise. This takes discipline. A lot of discipline. I’ve cut back significantly on meat and dairy. Also, my wife’s coeliac so that makes it that bit easier to cut back on wheat and go for gluten free products instead. However, what I’m finding is that a lot of alternative products are very sugar based. In addition sugar substitutes are thought to be worse in a lot of cases than sugar itself. In particular one lady said if we took anything from her talk it would be to not consume anything which consisted of Aspartame which is a sugar alternative used in nearly all cordial and sugar free drinks.

 

Summary of the OMS Diet

 

So if I stick to the sugar options rather than the alternatives this raises the question, am I putting myself at risk of diabetes? Initially my doctor thought I may be diabetic when my vertigo symptoms didn’t subside. One of the speakers advised that we have enough to be concerned about with MS that we shouldn’t worry about diabetes.  I attended a talk in Trinity College last week and raised that very question. The advice was to talk to a dietitian. A dietitian and not a nutritionist. In addition to diet, exercise and medication, it was highly advised to keep the mind active as much as possible. Again it’s a challenge to find what keeps my mind active; reading, crossword puzzles, computer games? A healthy lifestyle was deemed to be the most important way to stay healthy regardless of the status of your health.

Vitamin D, or the lack of it, is a big issue for people with MS. Apparently in Ireland, during Winter months, there is little or no chance of us absorbing Vitamin D directly from the sun. I didn’t know this but if your shadow is longer than you are when you’re standing then you are not getting any Vitamin D directly from sunlight. As such it’s highly recommended that everyone living in Ireland take daily Vitamin D supplements particularly during these Winter months.  The Trinity talk was the most professional of all the talks I had attended and was broadcast live online.

As with the majority of my blogs I like to use an analogy or comparison with music, sport, fiction, whatever I can think of really. These are the things that give me inspiration. I nearly had a full blog written about the ill-fated Busby Babes and how Manchester United inspire me. I then realised the blog wasn’t MS related at all. The reason I started blogging was to let people know how I’m getting on and what I’m learning since diagnosis so I scratched the Man United blog and re-started leaving only the opening line remaining:“How we are in the future will be founded on how we behave today”. This is a quote by Jimmy Murphy the assistant manager of Manchester United at the time of the Munich air crash in 1958. This applies as much to my health now as it did to a football club in the depths of despair all those years ago. They were going into the unknown but what choice did they have but to carry on? The alternative wasn’t an option as depicted by David Tennant in the film United. A very moving scene if you get the chance to watch it; both heartbreaking and inspiring at the same time.

United carried on after the disaster despite having a depleted team and their manager, Matt Busby, fighting for survival on his Munich hospital bed. Astonishingly they made it to the FA Cup Final three months later only to lose to Bolton Wanderers. In the final United wore a phoenix on their crest. For me, it’s a reminder that hope always rises from the depths of despair although more often than not you have to fight for it.

Lifestyle choices made now may not catch up on us until years into the future and in some cases not at all. I consider myself to be lucky that MS caught me when it did so I have time to ring in the changes before any further damage was done. Although one additional brain lesion was found on my MRI scan in May compared to my previous scan in May 2015. This was my first real set back in 18 months. Although the lesion could have popped up at any time in the year between MRI’s, I was only informed of this in October. The neurologist asked me did I want to start taking stronger medication. I was a bit perplexed. I had only started my medication the previous October; bang in the middle of either scan. There was no way to tell when the additional lesion occurred so who’s to say my medication hasn’t been working? I’ve made a lot of lifestyle changes but perhaps not enough. Only time will tell. I refuse to increase the power of my medication if it’s not entirely necessary. The suggestion seemed like a knee-jerk solution from the neurologist. I was by no means 100% certain the medication hadn’t been effective so I declined the offer to change it.

I have to be resilient and defiant when I feel it necessary. And although luck plays a big part,  I am the master of my own destiny above anybody else. Who knows, if I stick to my guns just like Jimmy Murphy and Matt Busby I may well exceed expectations just like they did. After all, following the trauma of Munich they saw a new Babe, the likes of which had never been seen before (or again), break through to inspire unprecedented success;  Georgie Best! We have our own Byrne Babe en route in January 2017. If becoming a dad doesn’t inspire me to at least try to be a success nothing will.

#KBYerrr

One of the most inspirational stories that came out of the Munich tragedy was that of United’s Northern Irish goalkeeper Harry Gregg who saved a pregnant lady and her daughter. This is a clip of when they were re-united years later

A tribute to Jimmy Murphy the forgotten legend 

Highlights of the 1958 FA Cup final aka the Nat Lofthouse final

1968 European Cup Final. Busby’s mission accomplished.

Mo’ Lesions, Mo’ Problems

I knew on the walk to the Mater Hospital today what the name of my latest blog would be. Still though the news, although unsurprising, was unpleasant to hear. “Your most recent MRI was discussed back in May and 3 additional lesions have appeared since last years MRI”. I kind of guessed when they moved the appointment forward from November to July that something was up.

Bummer. I like to think I know what I’m in for with MS but I really don’t. No one does. While the majority of my lesions are quite small, they’re on the increase and without me visibly relapsing I’m not going to know how they affect me. All I can do is try keep them at bay. Which, as per my previous blog, I haven’t been very consistent at doing. Copaxone was always going to be a temporary aid at best. Its side effects were minimal for me but that meant higher risk of relapsing or increased chance of further lesions. Unlike other medications, which I could have chosen with lower risk of relapsing but much more extreme side effects, Copaxone in no way affected the reproductive system. That was a deal-breaker for me and although it hasn’t prevented further damage with respect to the spreading number of lesions on my brain I just have to look at my son Oliver to know I 110% made the right decision.

I’ve never played chess so I don’t think I could do an accurate comparison. What I do know is that it’s a game won with the right strategy. I have to change my approach. I’ve known this for a while. It’s a shame I’m being very reactionary. I need to be more proactive. These are generally buzz words I save for the office but it’s true… it’s damn true 🙂

I sat there today, with my wife by my side, as my balance, vision & reactions were checked. Back to basics really. Questions asked of me that have been asked plenty of times before. The answers seldom differ. Still aware there is something underlying in the background yet to manifest itself. Still occasional spots in my vision, still slightly unbalanced, still infrequently dizzy, still regularly fatigued. Still feeling fine. It was recommended that I change my medication. I expected as much.

Gilenya and Tecfidera are what I have been advised to choose from. I’ve set up a Facebook page, MSers United, for those I know with MS and have asked those in the know to provide feedback on both drugs. Also my MS nurse, Jacqui, will send the info on both out to me next week. I’ll go through them in detail with Michelle, as we have done before, and will probably have to arrange a meeting with Jacqui to discuss the next steps. For those who have read my Juggernaut blog you may recall Jacqui was out on indefinite leave earlier on in the year. Randomly I bumped into her on Clonliffe Road, just around the corner from where I live, a few months back. It was a particularly sunny evening and she had taken a detour walk home from work to get some extra time in the sunshine (putting her own advice into practice) when I saw her. It was such a comfort talking to her, seeing she was ok, and knowing she was back in my corner.

I have made a fair few changes since diagnosis but I’ve known for a while the strategy has become stagnant. I don’t want to bombard myself with changes as I know I won’t stick to them. There’s a few things that I want to do and others that I need to do. I need to start practising yoga; an exercise for both body and mind, I really need to get up off my bum and just do a class. There are plenty of youtube clips too so I’ve no excuses. I’m getting repetitive but I need to be more disciplined with my diet and more consistent with regards to exercise. I paid to join a running club in work and I rarely go. The doctor also advised things like massages and rekhi are worth looking into but it’s down to personal preference. A common denominator is the intention to make you feel relaxed. Michelle got me a ukulele for Christmas which I’ve barely touched. I want, and I think need, to learn a musical instrument. The aim is to use parts of my brain that are usually left idle. Whether or not my brain will be able for that is another question. I was also asked today how my memory retention is “Long term good, short term bad” – I wish it was the other way around. So I do wonder how competent I will be at learning something new. I need to see this as a challenge rather than a deterrent.

I think I’ve set myself enough goals for the time being. Feel free to get in touch with any advice or recommendations. The strategy will have to change regularly. After all, I’m only a pawn in the game…. we all are.

Someday, everything is gonna be diff’rent
When I paint my masterpiece

Bob Dylan

 

#KBYerrr

 

 

 

Contender Ready!

Consistency has never been my strong point. As a matter of fact I couldn’t tell you what my strong points are. Routine has to be the order of the day. But I routinely fall out of routine. Once out, I claw myself back into a routine until I fall back out of it again. My brain generally dictates what I should do. Not the part of the brain that knows stuff though. For me it’s the part that feels fuzzy that tells me what to do. By fuzzy I mean a dizziness in my brain and black spots that are permanently in my vision becoming more prominent. When I feel fuzzy I really try to eat well and exercise regularly until the fuzziness subsides. Then once I feel refreshed and back on track I get complacent and put off exercising and indulge in whatever food I like or even have a few gargles – it’s grand I’ll make up for it tomorrow (but I never do).

It might seem tame to some people to hear someone complaining about over indulging or having a few lazy days or weeks. But this is me being complacent. I should know enough about MS and my own body and mind to know not to take my own good health and mindset for granted. I rarely go on nights out with friends but when I do they end up being excessive. I remember very  little and my body takes days to recuperate. A problem that comes with age, I know. Generally I can go for weeks or months even without having a drink and it doesn’t bother me. That’s the problem, it’s all or nothing, there’s no moderation. I need to reassess my relationship with food and drink – something I’ve needed to do for a long time but with the affects of MS ever-looming I need to be more disciplined.

I loosely follow the OMS diet. I’ve cut out red meat and anything with coconut in it. I try to eat as natural food as possible. Popeye was definitely onto something with his spinach fetish. I’m aware that saturated fats aren’t good for me but I’ve yet to educate myself enough to know what are good fats and what are bad. I have a general idea that seems to be working for me so far (just about).

Because of my previous experience of MS and now that I’m a dad I get annoyed with myself for being inconsistent in how I combat MS. Fatigue is arguably my biggest obstacle but sometimes I don’t know if I’m just not trying hard enough. When first diagnosed I was led to believe that MS was hereditary but thankfully that has become less and less accepted although it’s something I will always have to be mindful of. What I’ve learnt since diagnosis is how to look after myself better and appreciate all aspects of life. Although that’s not always the case for days after a hefty number of pints and shots all for the craic that I don’t even remember having.

The routine needs to be more consistent. Admittedly I’ve fallen off the red meat wagon of late. White bread ham sambos like my mam used to make me have been ordered a couple of times from the canteen in work. Butter on both slices of bread, just ham in the middle, delish 😛 “Do you want any extra fillings?” “Nope”. Totally against the diet I’ve been trying to stick to and that’s been contributing to me staying relapse free. For the last while, the only Ham Sandwich I was interested in were the band from Kells – who funnily enough I saw for the first time in the Roisin Dubh in Galway when my symptoms were becoming particularly prominent but at that stage I had no idea what was in store. I had to hold onto a pillar to keep my balance steady for the whole show but they certainly made a lasting impression.

Me and my fuzzy head meeting Niamh from Ham Sandwich back in Nov 2014

I’m disciplined at taking my medication and vitamin D at least. Every Monday, Wednesday and Friday I have to inject Copaxone. I listen to the Ian Dempsey breakfast show while getting ready for work each morning. If I haven’t injected by the time Paula MacSweeney comes on to give the showbiz news at around 7.50a.m that means I’m running late. It’s little associations such as this that act as a constant reminder and keep me consistent with my medication.

I’m conscious that my immune system is considered to be relatively weak. Any slight cold or flu-like symptoms need to be treated with caution. I got a dose of man flu a while back. I tried to shake it off but it seemed to trigger old symptoms that hadn’t appeared in ages all at the same time. Lack of sleep matched with extreme tiredness, dizziness, blurred vision, feeling like I’m hungover even though I hadn’t been drinking; these all appear occasionally but not all at once. I was lying in the spare bed (as I didn’t want to share my germs with Michelle & Oliver) on the Monday morning bright and early. I couldn’t sleep but was exhausted. In my boredom, I read over a previous blog I wrote called Uncover What’s Sleeping in your Soul. In it I talk about the Blur vs Oasis rivalry from the mid-90s. I was in two-minds whether or not to call in sick to work. I knew I should but I hate not going in unless absolutely necessary. I decided to leave it to chance.

On the rare morning when I’m up before 7a.m. I listen to Paula MacSweeney’s early morning breakfast show. I was going to tweet her asking to play some Blur if she thought I should call in sick with man flu. I put on the radio and before the tweet was even sent Paula had Blur playing on the radio. Decision made. No work today. I tweeted her anyway about my man flu and she read it out live on air. In the meantime, I sent an obligatory email to my manager to which I received the response:

“Hi Keith,

that’s no problem. Look after yourself.

Ps: If you’re going to call in sick probably best not to have it broadcast on national radio first. #Parklife.”

Dammit, I should have known he’d be listening at that time. I’m such an idiot. But that response did earn us the much coveted MacSweeney Beanie. It was delivered in the post addressed to Oliver and Paula did send a note saying to give it to his Mammy for putting up with me 🙂

Oliver with his MacSweeney Beanie 🙂 

The day off done me the world of good and soon after I was back into a routine that I wouldn’t stick to once again. Perhaps I’m being too hard on myself. I’ve been very lucky so far with this battle. MS is referred to as an invisible disease. So invisible in fact that I don’t know myself sometimes if that’s what’s causing me to feel run down or tired or just blue. I have to, and I want to, maintain a healthy lifestyle, the alternative isn’t worth thinking about. I’d be foolish to call a cease fire to this battle so early into it. Especially now that I feel I can combat my MS by staying positive, eating right, exposing myself to sunshine, exercising and taking my medication & vitamins (good advice Hulkster!!) regularly. I’m going to be an idiot sometimes. That’s a fact. But I can’t beat myself up. I have MS to that for me if I let it. I don’t intend to let it. The battle continues…. contender ready!

You always start over, You always survive,
If I’ve yet to take over, I’ve yet to say goodbye.

Ants – Ham Sandwich

#KBYerrr