I just… felt like Running.

“Nobody ever mentions the weather can make or break your day”

It’s great drying weather out there. The clock’s have sprung forward and it couldn’t have come quick enough. The inevitable “There’s a great stretch in the evening” memes are more than welcome this year. Honestly, it’s felt like a Game of Thrones type of Winter with no end in sight. Being Irish, we should be prepared for all kinds of bad weather yet we batten down the hatches at the first sight of rain and I’m as guilty as anyone.

Yesterday saw the first real sunny day of the year and I knew I had to capitalise on it. Between the constant rain and snow, the opportunities to go for a run have been few and far between. The less active I am the less active I want to be. Inactivity creates lethargy. First thing’s first, I put the washing out on the line to dry; this was too good an opportunity to miss. No sitting in the kitchen drying on the clothes hoarse for this wash!! Then, I got my running gear ready, done the obligatory few minutes of stretches to get the blood flowing and body heated, and off I went.

Even as I set off I had no idea which route I would take. I was just glad to get out. For the day that was in it I decided to run to Clontarf. I knew even before I got there that I would see family’s out and about, with their children and dogs, cyclists, other runners, the abundant variety of birds hovering on the shoreline and, of course, the Poolbeg Chimneys majestically overseeing it all. It was a no-brainer really.

I hadn’t planned on it, but about 15 minutes into the run, I started to get notions. I’ve always intended to go running on the beach at Dollymount Strand but I’ve never got round to it. The furthest I had run, from my house, was as far as the Wooden Bridge which is a good 5km into my run but it’s at least another km further to the beach. That’s an achievable goal for me to reach, still the problem would be the return home. My fitness is not at that level yet and I’d be foolish even to chance it.

A while ago I got an email from a girl in work, Jill. In the email she asked for sponsorship for a 10km she was running to raise money for MS Ireland as her sister had been diagnosed a number of years back. I knew straight away the email was sent to me in error as we didn’t really know each other back then and there was no way she could have known about my diagnosis at the time. Anyway we got chatting as I thought it was a strange coincidence that I received an email about MS by mistake. Naturally, I donated. Now I chat to Jill regularly in work. Not only that but she has convinced me to sign up for the Dublin City Half Marathon in September in aid of MS Ireland. It’s funny the impact MS has had on me; both good and bad.

Feel free to join us, the more the merrier 😉 –>

http://sseairtricitydublinmarathon.ie/race/dublin-half-marathon/

So there I was, yesterday, as I reached the Wooden Bridge at Clontarf; “Feck this, I’m training for the Half Marathon. I’m going for a run on the beach!” Sometimes you have to act the fool. By the time I got to Dollymount Strand I had pins and needles in my right foot and couldn’t feel a thing. The sensible thing to do was to stop and walk until the feeling returned or at least turn back. I get very stubborn when I run though. I ran the length of the beach and turned off to run toward the Bird tree-top sculpture at Saint Annes Park. The pins and needles persisted so I start running faster even though my energy was rapidly dwindling. Luckily, as I ran faster the feeling soon came back to my right foot and I managed to continue jogging albeit at a much slower pace.

Me and my pals Peter and Gar at the Bird Tree-top at Saint Annes Park: Sept 2016

I had threatened to do this run for such a long time but had no intention of attempting it when I left my house yesterday morning. I was in no way completely ready to do it. But I wanted to stay out while the sun was still shining and try get Vitamin D naturally for once. The sun once was a deterrent for me going outside, now it’s the protagonist. I was being both foolish and stubborn and I regret nothing.

I kept thinking on the home straight about Homer Simpsons attempt to jump Springfield Gorge “I’m gonna make, I’m gonna make it, I’m king of the World!”. Of course, Homer didn’t make it (click here for the link) but as with most things in my life there always has to be a Simpsons reference to fall back on. I finished the run in 1 hour 48 minutes and 25 seconds. I practically crawled for the last few kilometres but I did it and I’ll do it again. Just as inactivity creates lethargy; energy creates energy. I done my stretches when I got home and felt a few pains today but nothing I can’t handle. I even went for a walk back to Clontarf with Michelle and Oliver 🙂

I have set up a charity page for the Half Marathon for anyone who would like to donate; https://give.everydayhero.com/ie/half-marathon-for-ms

My MS Update

I have had to go back to the hospital, for blood tests, every month since last September when I started on my new medication. My white blood cells are not at the level they should be which means I’m more susceptible to infection. I may have to consider changing medication again if it persists. All part and parcel of having a chronic illness I suppose. My next MRI is booked for May so that should tell me more, particularly about any additional lesions; which I suspect there are. In which case I mightn’t have a choice but to change meds. I’m lucky that my mobility hasn’t been affected since my initial diagnosis, however, there are other constants like spots in my vision and fatigue that just don’t go away. Running, I find, is the best way way to alleviate these.

Yesterday’s run is the most I’ve pushed myself since as long as I can remember and I’m really feeling the benefits of it.

“Nobody ever seems to remember life is a game we play”

#KBYerrr

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.

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

101 ways to describe MS

1. MS is a cloud. A dark cloud that rarely allows light in.

2. MS is darkness.

3. MS is uncertainty.

4. MS is malicious.

5. MS is an awakening.

6. MS is a different view of the world.

7. MS is a slap in the face.

8. MS is tiredness.

9. MS is numbness.

10. MS is tingles.

11. MS is unpredictable.

12. MS is the wind in your face on a blustering day and loving every wide eyed moment because you know it means you’re alive.

13. MS is accepting hurt and pain.

14. MS is cherishing precious memories.

15. MS is rediscovering a burning desire for life in your gut that you just couldn’t appreciate when it was originally there.

16. MS is debilitating.

17. MS is brain fog.

18. MS is memory loss.

19. MS is learning to stay calm.

20. MS is seeing things for what they really are.

21. MS is exercise.

22. MS is being food conscious.

23. MS is injections.

24. MS is MRIs.

25. MS is discovering what inner strength really is.

26. MS is being cared for.

27. MS is taking time out.

28. MS is lumbar punctures.

29. MS is loving yourself.

30. MS is motivational.

31. MS is painful.

32. MS is character building.

33. MS is hypocritical.

34. MS is a new beginning.

35. MS is a chronic illness.

36. MS is unique to each individual that has it.

37. MS is inspiring.

38. MS is deflating.

39. MS is appreciating all the natural things in life.

40. MS is expecting to fall at any second.

41. MS is Long Term Illness cards.

42. MS is reassuring people you’re ok.

43. MS is the unknown.

44. MS is deciding what’s right for you.

45. MS is daunting.

46. MS is telling yourself this is your life, your time, you’ve got to make it.

47. MS is Meetup groups.

48. MS is heartbreak.

49. MS is relationship destroying.

50. MS is knowing you’re loved.

51. MS is a change in direction not a pit stop.

52. MS is not the definition of a person.

53. MS is fighting your corner.

54. MS is inconsistent.

55. MS is home help.

56. MS is relying on others.

57. MS is becoming more independent.

58. MS is learning there is hope within the depths of despair.

59. MS is a warning.

60. MS is discovering the best of yourself.

61. MS is mindfulness.

62. MS is regular visits to the hospital.

63. MS is wondering when people ask “how are you?” do they actually want to know how I am or are they just saying hi?

64. MS is understanding empathy.

65. MS is research.

67. MS is facing your fears.

68. MS is disease modifying therapy.

69. MS is a Vitamin D deficiency.

70. MS is a constant battle.

71. MS is a daily challenge.

72. MS is thinking outside of the box.

73. MS is trying to stimulate different parts of your brain.

74. MS is constant learning.

75. MS is demyelination.

76. MS is relapse remitting.

77. MS is primary progressive.

78. MS is incurable.

79. MS is overcoming obstacles.

80. MS is the OMS diet.

81. MS is dietitians and fitness instructors.

82. MS is neurologists.

83. MS is trying to balance on one leg with your arms out.

84. MS is not knowing why you feel a certain way.

85. MS is wishing you done things differently.

86. MS is getting on with it.

87. MS is grieving for yourself.

88. MS is seeing the positive side.

89. MS is letting go of regret.

90. MS is apologising to yourself.

91. MS is patting yourself on the back and saying “keep going”.

92. MS is resting.

93. MS is an auto immune disease.

94. MS is a disease of the central nervous system.

95. MS is dizziness, blurred vision, optic neuritis.

96. MS is a reason to get out of bed each morning.

97. MS is contradictory.

98. MS is accepting you can’t always get what you want.

99. MS is a way of life.

100. MS is not to be feared.

101. MS is appreciating old cliches that had long since lost their meaning. Every cloud has a silver lining.

These don’t all apply to me directly but MS affects everyone differently. Leave a comment if there’s any you think I’ve left out or if there’s specific ones you can relate to.

#KBYerrr

Hello Sunshine

“Julius Caesar and the Roman Empire couldn’t conquer the blue sky”

Lady’s and gentlemen of the class of whatever year you’re reading this in….

It’s December already, it’s getting pretty bitter out, most days are overcast at best. Winter is here and sunlight is more and more scarce. Vitamin D cannot be directly received from sunshine at this time of the year. This is a concern for me. There is a definite correlation between lack of sunlight and MS. It is much more common in colder climates with little sunlight. This time last year is when my symptoms started to really show. And because I’m in my final year of college until May, finding time to take advantage of the rare sunshine is even tougher. Exercise is a good substitute but I’m finding less time to do that too. Working full-time and studying part-time is proving tough especially at this time of year.

Lack of sunshine used to never bother me in the slightest. In fact I welcomed it. I used to think the sun hated me. I had a few forgettable sunburn experiences as a kid that I would try to avoid the sun at all costs. When avoiding the sun wasn’t an option I would lash on the suncream before going outside.

Baz Luhrmans Everybody’s Free to Wear Sunscreen is a very inspiring and educational piece. If you’re not familiar with it or haven’t listened to in a while give it a go. One thing I now disagree with Baz on though is his encouragement of applying suncream. Madness, I know. But let me explain myself. Of course suncream (screen/block) is very useful but as I’m learning about most things these days it should be applied in moderation. Whenever I’m in a hot climate or on a rare sun-kissed Irish day I lash on the suncream.

“The benefits of sunscreen has been proved by scientists. Whereas the rest of my advice has no basis more reliable than my own meandering experience”

When I was told it was evident that I was showing the first symptoms of MS I was advised to get lots of sunshine as it is the best way for us to get Vitamin D. Straight away I thought “not that bastard sun, he hates me!”.  But I did as I was told. I went for walks by the sea each day. This, apparently, is also good for your balance which I was struggling with badly. I made sure the sun got onto my baldy head at the very least but also I felt getting the fresh air and having the sea breeze in my face was just as beneficial. Even as the weather improved my doctor advised me not to put on suncream before leaving the house and allow my skin to absorb the sun even for 10 or 15 minutes a day. I still feared getting burnt but it was great advice. I actually feel better when the sun hits my skin probably because I know now how good it is for me. When I eventually went back to work a few people thought I was taking the piss being off. I’d come back with a bit of a tan and lost a bit of weight from all the walking. Turns out the sun was my friend all along. I just didn’t realise. The sun, as with most friends, is great in small doses but spend too much time in their company you can end up burnt 🙂 Everything in moderation.

 
Hello Sunshine: Come into my life 🌞

Still though, I did spend most of this years sun holiday by the pool under the umbrella covered head to toe in suncream but I made sure that I got a bit of natural sun before doing so. I also take daily vitamin D supplements as I know a lot of people do. I’m lucky enough to be prescribed these on my Long Term Illness card so they cost nothing. It’s recommended all people living in climates similar to Ireland’s should be taking vitamin D supplements to compensate for the lack of sunshine particularly in Winter time. 

It’s a great feeling the sun hitting your skin directly even if only for a brief period. There’s so many natural things about the world that I’m only starting to open my eyes up to since my diagnosis. I find myself treating MS as a sort of awakening. I wonder sometimes how I wasn’t like this before and why only now when faced with a genuine challenge do I see the world so differently. The main challenge I’ve found recently is how to put a positive spin on everything. Perhaps it’s not always possible but I don’t be far off seeing the positive side to most scenarios. Brief mindfulness sessions have helped but I don’t practice it enough.

A lot of lifestyle changes I’ve made since being diagnosed with MS haven’t felt life changing as I have implemented them slowly and not tried to change everything all at once. I try not to eat too much processed food and I have a lot more fruit whereas before I would have crisps and a chocolate bar. A lot of dairy free and gluten free items in the shopping trolley. I’ve cut back on red meat. I’m loosely following certain diets that people with MS highly recommend. Again, everything in moderation. I try to go out walking or for a run on my lunch break in work. This is not always possible and sometimes I lack the necessary motivation but I try not to be too hard on myself when I go short periods without exercising. I generally feel a fuzziness coming back to my brain when I go for periods of being idle so I use that as my trigger to get back on the horse.  This is how I try to live my life now, I know there’s a lot of people who live much healthier ones. For me, it’s a vast improvement from before diagnosis. I still know that there’s something lying in the background that could raise it’s ugly head but I’m confident that if I keep going the way I am a relapse is a long way off.  It’s just a reminder that we’re all the masters of our own destiny. Or maybe we’re not. What do I know.

To quote Doc Brown in Back to The Future 3: “your future hasn’t been written yet, no one’s has. Your future is whatever you make it, so make it a good one.”

But trust me on the sunshine.

#KBYerrr