A Lockdown Letter from the newest member of the family to her Grandmother

Hello Nana, how are you?
I just thought I’d write to say
Even though we can’t be together
I miss you everyday

My brother’s told me all the things
That you and GranGran do
It all sounds so exciting
I can’t wait to play with you

Daddy says you’re lots of fun
You already have me spoiled
You do so much from far away
I’m a very lucky child

Sorry you can’t hold me
As I get so big and strong
My brother thinks he’s your favourite
But that won’t last for long ūüėä

Mammy says I’m so cute and cuddly
And I have the most gorgeous smile
My eyes sparkle, my cheeks glow
And I have my own sense of style

I dream of your hugs Nana
They truly will be great
Just hold on a little longer
I’m really worth the wait

With love,

Cara xxx

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.

 

image1-2
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.

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

Juggernaut

juggernaut
ňąd í Ć…°…ôn…Ēňźt/
a huge, powerful, and overwhelming force.
The last couple of years have been a real rollercoaster for my wife and I to say the least. Beginning with our engagement followed by my MS diagnosis, her father sadly passing away, me graduating from college, her changing jobs, our wedding and now to top it all off the birth of our son. It really has been a juggernaut of emotions.
I never pray but tonight I’m on my knees…
It was the morning of January 6th, the day before our son was born. My wife had been in the maternity hospital for the previous two days. They had kept her in as a precaution and stress levels were at an all time high. I wasn’t allowed stay with her but thankfully we live close to the hospital so I didn’t have far to travel back and forward. We were certain the baby would come today either under their own terms or with a bit of encouragement. I had The Verve’s Bittersweet Symphony ¬†resounding in my head the whole night and into the morning as I hoped and prayed to everyone I could think of to look after my wife and unborn child. “Well I never pray but tonight I’m on my knees yeah”. That morning there was still no sign of baby. <juggernaut begins> I had some time to kill before being permitted back in to be with my wife as we patiently waited for the doctors to tell us what the next steps were.¬†I had run out of my Copaxone and Vitamin D prescriptions so decided to go to the pharmacy to collect the top ups. As I walked to the pharmacy I was on the phone¬†to my Dad to give him an update on the baby situation. Still no update we just know baby’s heartbeat is fine. When I hung up I had a voicemail “This is Harvey Norman, we’ll be delivering your new washer dryer within the hour”.¬†Fuck sake, last thing I need. When I got to the pharmacy they handed over the Copaxone without hassle as per usual.“Be sure to put it in the fridge as soon as you get home”¬†. Thanks, I know. However, there was an issue with the Vitamin D. “You’re prescription is out of date Mr. Byrne”.¬†It was a 6 month prescription and I gave it to you 2 months ago how is it out of date? (stress levels rising) “Sorry we could have lost it or you could have lost it we just don’t know”¬†(feels vein forming on forehead) Are you fucking kidding me? ¬†“You’re going to have to get a new prescriptionAargh! (storms out of pharmacy in dramatic fashion).¬†<juggernaut gaining speed rapidly>

It’s a short walk from my house to the pharmacy. To be proactive I thought I would ring the neurology nurse, Jackie, to ask her can they re-issue my Vitamin D prescription. It would have been good to hear a friendly voice. Although it’s always tough to get a hold of Jackie, I knew I could at least leave her a voicemail and she would action my request as soon as she could. Unfortunately, however, there was an unfamiliar voice to replace Jackie’s voicemail message. “Jackie is on indefinite leave please ring the switchboard”. This was gut wrenching and not because there was no answer from the switchboard. <juggernaut in full flow> Jackie¬†has been such a significant figure in my recovery and in me maintaining a healthy outlook. Although I’d only met her a handful of times she has had a major influence on my life. I do not know the reason as to why she is out of work indefinitely but I can only guess that she had been overworked and over relied upon. That seemed pretty evident from the few times we’d met.

The Vitamin D prescription could wait. Actually no, it couldn’t. <juggernaut out of control>I rang the pharmacy again to tell them it’s not my fault they lost the prescription. I had a proper go at the pharmacist which is not my style at all. He tried to get me to share the blame which I couldn’t quite understand. He said he wouldn’t leave me stuck and I could collect a months worth of Vitamin D but I’ve to get a renewed prescription in the meantime. Gee, thanks pal! The Harvey Norman guy arrived just as I’d hung up and straight away there was an issue with installing the new appliance which we had purchased specifically in anticipation for our pending arrival. For fuck¬†sake I can’t catch a fucking break today! <JUGGERNAUT OF STRESS HAS TAKEN OVER>¬†All the while my poor wife was in the hospital all by herself not knowing what the doctors had planned for her or how and when our baby would arrive. Luckily my Mam arrived at my house as I’d managed to send her an SOS call during the whole debacle. I left her to deal with the Installation issue as my head was so fried I could barely string a sentence together let alone think straight. (Thanks Mam!) I went straight into the hospital to continue where I’d left off the night before with my wife¬†and play the waiting game and do whatever else was asked of me until our baby arrived.
You can’t park a juggernaut but you can drive one and direct it where to go…
On the walk from the car park to the hospital I had a few minutes in the open air to reflect on the events of the morning and how trivial they were. I don’t know why but breathing in the fresh air really helps me see sense of things when I feel helpless or hopeless. There I was losing the plot over stuff that’s simply not important in the scheme of things. I was on the way to see my wife as we prepared for our child to be born. We’d been waiting so long for this. Why would anything else matter? And what would another few hours or even another day matter? We didn’t know if we were having a boy or a girl but one way or another we would be seeing them very soon. I was no longer feeling hopeless, more hopeful. ¬†Soon we would go through a myriad of emotions that just showed the mornings juggernaut of stress for what it really was; irrelevant. The nurses and midwives in the maternity hospital face much worse on a daily basis. Their kindness and sense of empathy while still being able to be bluntly honest is beyond admirable. Many of them reminded me of Jackie and how she was with me when I was first diagnosed with MS. The fogginess in my head and lack of train of thought experienced that morning brought me back to how I used to be when my MS was particularly bad. Stress can be a main contributor to so many illnesses and I am mindful of that now. So if I feel I’m acting particularly stressed I find it beneficial to reflect on the situation and perhaps change my approach if possible.
We were facing¬†a whole new level of stress in the hospital but that was fine. We were in good hands. This juggernaut of emotions had a destination. Once we knew the end was in sight we were¬†able to take the stress and anxiety built up over the previous few days and use it to keep us focused. It would be another 24 hours before our son Oliver was delivered into the world. Once he arrived all that we’d gone through in the days leading up to his birth had been mashed into one big blur only to be¬†part of the story of how he came into the world. We jumped from a juggernaut of stress to a juggernaut of joy. It’s already¬†been one hell of a journey and it’s only just begun…
Life is what happens to you when you’re busy making other plans.
Beautiful Boy (Darling Boy), John Lennon
#KBYerrr
Epilogue
Vitamin D can be bought over the counter so there was never any problems with me accessing it. It’s just that it’s correlation with MS is so significant that the MS representative in the HSE really pushed for me to have it on my LTI card so that it cost me nothing to purchase each month. Roll forward 4 weeks from the day of his¬†birth. Oliver, his Mam and I stopped by the pharmacy to collect my Copaxone prescription for February. Turned out the pharmacy had my Vitamin D prescription all along and were very apologetic over the stress they caused. Brutal timing for them to suddenly misplace it but made for a good story ūüôā

Chimneys, Rain and Hope

I was planning on writing this next blog about hope, what it means to me and where I get mine from. But with all the shit that’s been going on in the world I just didn’t see the point over the last few days. Not only that but the weather has been atrocious. There’s a direct correlation between MS and a lack of vitamin D aka the sunshine vitamin. I haven’t been eating as well as I should and certainly haven’t been getting the exercise I need either.¬†All in all not having the positive outlook I pride myself on.¬†This might sound silly but I had been getting a sense of hope from two chimneys on the edge of Dublin. Let me explain why ūüôā

Last year, Michelle’s sister, Christine was talking to Ivan Yates on TV3. There was news that the ESB were going to knock down the Poolbeg Chimneys at the edge of the city as they are no longer of any use. This meant very little to me at the time but Chris told Ivan that she really didn’t want to see them knocked down. She had spent some time living in London and whenever she flew back to Dublin they were the first things she would see to remind her she’s home. This¬†inspired one of my greatest ever tweets:


It was confirmed the chimneys were going nowhere. I begun¬†to realise that, from where I live, they are nearly everywhere I look. Michelle and I started to take selfies whenever we were out and we passed them by; which was becoming more and more regular. When I was told exercise was one of the best ways¬†to recover from my first MS attack I went¬†on daily walks as far as I could to get both vitamin D and to re-discover my self-confidence. After a few weeks of long walks I noticed that I’d been going as far as the chimneys each day. I would walk from my house until I was facing them directly from the promenade in Clontarf. It wasn’t intentional at first but I started to say to myself each day “I better go see my pals”. They became a welcome addition to providing me with motivation. Even when I went ¬†back to work, I ‘d never noticed before that you can see them directly down the quays from the office. On the first morning back I was walking across the Samuel Beckett Bridge and could see them in the distant sunshine as if they were saying “You look after yourself now, we’re not going anywhere”. I don’t know why but seeing them that morning was almost comforting.

Back to today and it’s hard to appreciate and find hope from¬†large inanimate objects when the suns not shining on them. I know Ireland qualified for the Euros so not all is bad but within myself I was struggling to see hope or motivation around. I put the wet gear on this morning for the walk to work. The only thing inspiring me was the thought of staying dry. Storm Barney soon put an end to that.

So there I was en route to the office getting soaked. Walking past the Royal Canal towards North Strand even the ducks and swans had fecked off and I didn’t blame them. Then I saw this young girl. While I, and everyone else, was in a hurry to get away from one of the wettest mornings you could imagine there’s this little kid no more than 7 or 8. She was making her way to school and was fully kitted out in her rain gear; wellies, rain-jacket, umbrella, the lot (all with Frozen logos on them, as standard). Rather than sprinting to the classroom, like her teachers and her peers,¬†she was jumping two-feet at a time towards the schoolyard. Each splash in the puddles bigger than the one before. Not a bother on her. Well she put the biggest smile on my face. There was I miserable as anything because I was inconvenienced by the rain and there was she taking full advantage of it. Hope restored.

“Positivity. It is the way for me. It is truth. It is youth.” Damien Dempsey, It’s All Good

#KBYerrr