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

A Disturbance in the Force Part Deux: Wherefore art thou Thumper?

Thumper greets you like a naughty mate. The one who likes to steal and get you in bother. The one you can never bring yourself to hate.

It was a rare sunny Friday in April. I was off work to focus on college but was also booked in for an MRI in Smithfield. I got up at my normal time, took my injection and enjoyed the walk down to the LUAS stop at Busaras in the sunshine. I jumped on board the LUAS and got a kick out of having a nosy at all the “characters” getting on and off at the Abbey and Jervis Street stops. Upon arrival, I barely had to wait 10 minutes to be brought in for the MRI scan. “Please complete this form Mr. Byrne” said the lady behind the desk. I barely had my name complete when I got called in. “I can complete the rest” the technician told me. Happy days, let’s get this show on the road.

I was told to disrobe into only my boxers and given a hospital gown. This was not like the previous times when the MRI was done with me in my jeans and t-shirt. This must be a serious one, I thought. I sneakily kept my socks on though. As I lay down the technician said “Right we’re just going to inject you with water and then half way through we’ll inject you with a dye”. Lovely. “How long is this going to last?” I asked. “All going well about 50 minutes” he replied. I had gone through a similar MRI around the same time last year but didn’t realise this was going to be just like that until the very moment I was about to go in to the machine. Then, to make matters worse, the technician plugged my ears and covered my head and chest so that I wouldn’t be able to move in any way whatsoever.

As the realisation began to set in that I was going to be laying like Hannibal Lecter for the next hour in very claustrophobic conditions panic started to take over. Soon, within half a foot of my restrained face, the roof of the MRI machine was staring back at me. No earphones to listen to music or mirror to see what was going on outside and take my mind of things, as had been the case previously. The MRI began TICK TICK ERRRRRRRR It was just me and my thoughts and they weren’t exactly full of joy or positivity. I was expecting Thumper to show up any second. He would have been welcome. Anything to take my mind off things. Maybe he might even show up on the MRI results. I couldn’t lay here for an hour like this. TICK TICK ERRRRRRRR I decided I would try to practice mindfulness to take my mind off things and perhaps pass the time. Sure I done at least three 10 minute sessions on an app a few months back; I’m practically an expert.

Right let’s see how this goes again. Relax, let go of everything. Breath in through the nose and into the lungs until they’re full of air. Now out through the mouth. I think that’s how it goes. TICK TICK ERRRRRRRR I’ll keep at it. In through the nose and fill up the lungs and exhale. And in through the nose, thump thump thump that’s just your lungs filling up, that’s just the engine struggling, that’s just a carp swimming around your ankles. Ah there ya are Thumper ya little bollix. Classic Simpsons reference. Where have you been? I can’t tell if it’s you or the bloody MRI machine causing the thumping in my ear. It’s only in my left ear so it must be you. No response no? I’ll keep up trying mindfulness if you’re going to continue to make sporadic appearances only to ignore me. Relax. Breathe in. Let go. In through the nose. Out through the mouth. You are a strong confident woman thump thump thump.  If you’re going to start annoying me you have to stay for this whole thing. The noise from the scan had stopped.

“Keith we have to stop so we can inject you with the dye, should only take a couple of minutes”. Between being in such an enclosed space, having plugs in my ears and feeling imprisoned, Thumper began to go into overdrive. The initial injection had numbed my arm partially so I couldn’t even feel them injecting the dye. It was probably only another half an hour in the MRI but it felt like a lifetime. TICK TICK ERRRRRRRR TICK TICK ERRRRRRRR TICK TICK ERRRRRRRR thump thump thump What are we doing after this? I dunno about you pal but I’m going into the library I’d prefer if you didn’t join me. Well well well, you’ve changed your tune. A few minutes ago you were going to put my face on the side of a milk carton because you missed me so much. What like the film Big or Blur’s Coffee & TV video? Exactly. You’re a hippocrit! It’s hypocrite and maybe so but the MRI is finished now and you need to feck off again.

The MRI lasted pretty much bang on 50 mins as advised. The technician said it went well and there was very little movement from me so they didn’t have to do any scans more than once. That was a relief. I told him I had a history of boogie’n down in an MRI. There was a couple of unintentional leg spasms but that was perfectly normal and probably just down to nerves as much as anything. All that lying down really drained me. My Dad’s office was only down the road so I hopped on another LUAS and called up to him. He had a cup of tea and cake waiting for me on arrival. Just what I needed to give me the energy to get a bit of study done. I went to the library and Thumper followed. He hasn’t been himself  since the MRI though. Maybe he got everything out of his system. He makes the odd appearance but he’s much less of a nuisance these days. The sleepless nights still occur regardless but now I can lay there in peace rather than constantly tossing and turning trying to shut the little shit up.

I met with my neurology nurse on Monday. I missed the last appointment in November due to sheer forgetfulness. I like to blame MS for my absentmindedness. These appointments are too important to be missed so I made sure I was there with time to spare. I love talking about what I’ve been learning over the last year or so and getting feedback be it constructive or otherwise. The MRI results showed no change from the last one which is the best I can hope for. We discussed the recent Panorama documentary on BBC One where people with MS had made a complete recovery thanks to stem cell research. It’s great to see such progress being made but we both agreed that it’s not necessary for me to look into going down that route. I’m my own best chance of recovery for now. I told the nurse about Thumper. I think the last time we talked I had so many other symptoms I forgot to mention him. She told me that, from how I described it, Thumper isn’t an MS related symptom as he comes and goes quite regularly. MS symptoms are generally much more prolonged but still people with MS have other issues just like anyone else. My Doctor had ruled out tinnitus which seemed to be the only other explanation. Either way Thumper seems to be gone for the time being. There is Balance in the Force once again. As with anyone you fall out with or lose touch with I said I wasn’t sad to see him go; but I was only pretending you know.

“It was in love I was created and in love is how I hope I die”

Paolo Nutini, Coming Up Easy

#KBYerrr

My Difficulty is MS’s Opportunity

The 1916 Easter Rising is something that, as an Irish person, you grow up being aware of but it’s not something I knew too much about. It’s significance will really be amplified this weekend as there are so many events organised in Dublin city centre as well as the rest of the country. Town is only a twenty minute walk from my house so  I’ll definitely take a stroll in and witness some of the festivities for myself this Sunday and Monday. I don’t foresee any similar commemorations happening in my lifetime. So seize the day 🙂

There’s a plethora of programmes, documentaries, YouTube clips etc… that go into detail about the Rising. I recently watched Brendan O’Carroll’s BBC One documentary where he followed the footsteps of his uncles and the part they played in the Rising itself. That’s what really caught my intrigue. Plus it’s absolutely everywhere so I knew I’d have no choice but to embrace it. And I’m glad I have. As with anything that catches my interest I try to associate it with my own life.

How can you link something that happened 100 hundred years ago to your situation? I hear you ask. Sure I’ll give it a go and we’ll see how it transpires. I won’t go into the history books and whip out the facts, I’ll base it on my own understanding so feel free to correct me if I’m way off 🙂

I’d love to be able to compare myself to Ireland and say that I’m gaining independence from MS. That’s not the case though. I did say to Michelle this morning that I think I’m like Ireland because I’m small and friendly but she pulled apart my theory with a weary and disinterested sigh 😛

In this scenario I’m England. I am the Empire (I just realised I could have used a Star Wars reference for this blog but we’ll stick with 1916). While the British Empire, many Irish soldiers included, were fighting World War I, a small number of Irish men & women who remained in the country seen the chance to rebel against British Rule. “England’s difficulty is Irelands Opportunity”. 

Ireland (albeit in very small numbers) took advantage while England was distracted. I can’t allow MS capitalise in the same way. Life, that little old chancer, is the biggest distraction of them all. Stress is one of the main catalysts for many illnesses. In previous blogs I emphasise how exercise and diet were the main reasons for me both becoming ill and recovering. They are the external reasons, obvious for people to see. Stress is internal and not evident to anybody. It certainly wasn’t evident to me. People who manage to get on with life straight after a massive shock such as loss, heartbreak, pain or humiliation are seen as very admirable. But internally the scars can fester and may not surface until years later or not at all. That doesn’t mean the damage isn’t there.

It’s only over the last while I’ve noticed a change in myself and others have said it to me too. Perhaps it’s a confidence that wasn’t there before, I don’t know. I talked in my first blog about practicing mindfulness but not being able to take it seriously. I downloaded a mindfulness app called headspace a while ago and done a few sessions of it. I haven’t stuck to it but I certainly have learned from it. Basically, it compares the thoughts in your head to cars in traffic. When all is going well traffic flows perfectly. Everything is as it should be. When things aren’t going well all those thoughts start to crash into each other causing our heads to go fuzzy and preventing us from thinking straight. I found this very relevant to me. It was only on reflecting on how I reacted to large-scale stressful events in my own life that I realised that these car crash moments actually must have done me damage. There’s no way they couldn’t have. But I continued to get on with life without feeling the need for reflection or discussion (well maybe when drunk but I don’t think that counts). The affects of these events obviously festered.

Difficult or stressful situations and events are inevitable and in some cases unavoidable. And that’s okay. I think I used to fear them. Now they make me focused. When I feel stress coming on I am mindful to take a step back in my own head, let the traffic pass and allow the relevant thought to come to the forefront of my mind. Whereas before panic would have been the order of the day. Just as with the exercise and diet I have no choice but to do this. MS is lingering and I have to be attentive to it, always. If I don’t I’m fearful of an internal Rising happening in my brain. Unlike England and the leaders of the 1916 Rising, I cannot make a martyr out of MS. I will always be aware, however, that my difficulty will be MS’s opportunity.

“All changed, changed utterly: A terrible beauty is born” Easter 1916, W.B. Yeats 

#KBYerrr

https://dublinrising.withgoogle.com

I have the power

So yesterday I attended my first “MS day”. I wasn’t apprehensive about going but more curious as to who would be attending. I was concerned for Michelle. She’s been so brilliant and probably knows more than I do now about MS. But still I didn’t want her seeing those who are affected worse than me and worrying that’s what the future has in store for us.

The group of around 30 consisted of people of all ages. All with different experiences of MS. I think Copaxone (my medication) was the common denominator. I still consider myself to have only had one clinically isolated episode although it lasted for months. So I really don’t think I have had to go through what many others in the room have been through or are currently going through. It was difficult for the most part to tell who were the ones with MS and who were there in support. Michelle was asked a couple of times when she was diagnosed. She would say she was here because of me but she’s been with me the whole way so can probably talk about the journey better than I can.

All in all it was a positive experience especially for Michelle which was important to me. I would like more emphasis on lifestyle factors such as diet and excercise as I know in my case anyway that’s played a big factor in both getting sick and recovering from my first attack. There was a piece on mindfulness which was interesting as it applied to anyone really. Although when the lady giving the talk asked us to close our eyes and listen to our surroundings I was afraid i was going to let a loud fart so kept laughing to myself. I need to take these things more seriously.

One part of the day that really struck me was after lunch when we sat in a circle facing each other. We were asked to put up our hand if we felt we had lost our identity because of MS. To see men and women of all ages put up their hand up was crushing. I suppose I hadn’t thought about having my own identity until now. I know we have all had different experiences of MS and it’s still new to many of us but I’ve thought to myself if I’m not going to start trying to be the person I want to be now when will I? I kept my hand down.

The motivational speaker at the end was good. He didn’t have MS but had overcome other demons. He got across some really good points. One being that how you dress affects how you feel about yourself. I’ve taken a mental note of that. He did say there was one thing he wanted us to take away from his talk but I can’t remember what that was. I like to blame MS for my poor short term memory.

My favourite part of the day was a talk called be your own superhero. I’ve already tweeted the speaker to say who I want to be:

Finally I love a good quote and Emma who gave the “superhero” talk had a couple for us. I think they were taken from poems. Immediately I had a line from an Aslan song come to my head. So to quote the mighty Christy and the boys:

“This is your life, your time, you gotta make it”

#KByerrr