The Blog Synopsis

Maybe I will never be
All the things that I wanna be
Now is not the time to cry
Now’s the time to find out why

In all the blogs I’ve written I don’t think I ever tried to explain what Multiple Sclerosis is. I’ve written in detail previously about how I’m dealing with it and what I’m learning while tackling it. And, as cheesy as it may sound, learning about myself in the process. We all know how to use google (even you Mam) so I won’t bore you with the science behind MS. To be honest I don’t completely understand that myself. I hear words such as demyelination and clinically isolated syndrome regularly but to put it in simple terms (which are the only terms I do understand), it’s as if there is a delay in the messages being sent by your brain to parts of your body. Sclerosis is another word for scarring and I have multiple scars on my brain (6 by the last count). There’s a lot more to it than that but that’s my very basic understanding.Below is a list of the most common symptoms for people with MS. I’ll try go through as many as I can relate to as they can apply to anyone really. MS likes to bundle loads of these symptoms together just to make you feel extra confused about what the hell is going on with your own body.

Numbness/Tingling

I’ve covered nearly all my symptoms in previous blogs. I’ve yet to make reference to numbness or tingling but I do occasionally feel a tingle/numbness in the ring finger on my right hand. I never brought this up with a nurse or anything as the other symptoms I have had were much more prominent. It may very well be nothing but just because you’re paranoid doesn’t mean they’re not after you. It’s a very minor thing at the moment but something I will keep an eye on.

Headache/Dizziness

Dizziness was one of my first symptoms. This led to almost permanent imbalance. In my MRI Boogie blog I talk about having to hold onto my Mam to get around buying Christmas presents a couple of years back. I was expecting to fall flat on my face at any time. Luckily I didn’t. I remained that way for a few months.

I can’t say headaches have regularly appeared, however, I do remember waking up each morning feeling hungover when I was particularly bad. Panadol was regularly by my bedside. MS brings with it a totally different kind of fear to that of the dreaded hangover.

Vision Problems

Headaches & dizziness coincided with blurred vision and being unable to see the computer screen in front of me in work. In my second blog I discuss how this caused problems for me with the most simple of tasks such as crossing the road. I recall having to rely on cabinets to hold me up while walking around in work. I foolishly tried to get on with things for a brief period but that didn’t last too long as referenced in my Brown Hula Hoops blog.

Cognitive Dysfunction

Full Definition of cognitive. 1 : of, relating to, being, or involving conscious intellectual activity (as thinking, reasoning, or remembering) <cognitive impairment> 2 : based on or capable of being reduced to empirical factual knowledge.

“If you’re picking up a pen imagine it a sword”. 

The reason why I’ve input the definition of cognitive is because I didn’t know what it meant until I was told that MS causes cognitive issues. And it’s true it does. Through blogging I feel my vocabulary has increased, however, this may not be evident if we were to have a conversation. I regularly forget the point or the punchline and need assistance with the next word even though it’s on the tip of my tongue. I get my point across much better when I sit back and think rather than having an immediate response. Although having time to think’s not always an option. I work much better via written word than day-to-day conversation. Still though the words will get there…… eventually.

Depression / Emotional changes

“If I have seen further, it is by standing on the shoulders of giants.”

I’ve seen MS and depression first hand. Both separate instances. I’ve seen how they’ve both affected those around me. I don’t know if I can control MS long-term but I can certainly try. I talk about Australian Professor George Jelinek in my Agreeing Terms  blog. His book Overcoming Multiple Sclerosis gave me hope. There are days, even weeks, where I don’t exercise regularly and don’t eat as healthy as I know I should. I can usually feel a change in my mood once this happens and those extra few minutes in bed can turn into an extra few hours. In my MS Snowflakes blog I refer to my only prior experience of MS. I regularly think of that as well as encountering depression and remind myself that these struggles are real and I am by no means immune to them. This inspires me to get up and keep going. The MS battle will most likely never end and it’s only against myself. I feel that seeing those affected, by both MS and depression, at their weakest has given me strength and I am forever in their debt.

We attended an MS morning last Saturday and there was a talk about Anxiety and Depression by Dr Harry Barry. We found it very interesting and would recommend anyone suffering with either or both to look him up.

Fatigue

Fatigue, tiredness, lack of motivation, exhaustion, however you want to describe it, it’s constantly knocking on the MS door and it doesn’t look to be going away anytime soon. I talk about it in more detail in Against the Ropes. It appears to be the main symptom that anyone with MS is affected by and I’m no exception.

Bladder / Bowel Dysfunction

I think most people suffer with these type of issues at one stage or another. I remember when I start going for walks in the hope that it would assist with some sort of recovery. After a few minutes I was rushing home for the toilet. I didn’t put this down to MS initially as I’m renowned for having a weak bladder. Once I read up a bit and realised it was a possible symptom of MS I start planning my walks better and not drinking for an hour before leaving the house. This seemed to work for me.

Pain / Muscle Spasms / Walking Difficulty

My difficulty with walking was primarily down to dizziness and blurred vision, however, there are many who find it much more difficult for a variety of reasons such as pain and muscles spasms when walking. As soon as I was told I may have MS I thought of a wheelchair. There are fellow MS’ers who do rely on walking aids and they’re the real warriors to me. I’m just touching the surface and, although I don’t intend on going any closer with my own symptoms, I’m inspired by those whose lives have been altered significantly more than mine because of MS. I go to a Meet Up group once a month which was set up by Emma who I mentioned in my very first blog I have the power. It’s important to keep in contact with people on the same boat even if our journeys and destinations may be different.

I try to keep up to date with all things MS without letting it consume my life. I’m nearly a year blogging which I’m quite proud of considering it took me a good 6 months to even be able to admit to myself I had MS. Sharing my story helps me and I’ve got a lot of extremely positive feedback which is very humbling. I’m no longer ashamed I have MS. I’m not fearful of it. But I will always be mindful of it.

#KBYerrr

http://www.webmd.com/multiple-sclerosis/ss/slideshow-multiple-sclerosis-overview

Uncover What’s Sleeping in your Soul

“Every paper that you read says tomorrow’s your lucky day. Well here’s your lucky day. It really really really could happen.”

Oasis or Blur? The great-Britpop rivalry is over 21 years old. Do you know what that means? It means I’m no spring chicken! I remember getting Blurs ‘The Great Escape’ and Oasis’ ‘(What’s the story) Morning Glory?’ albums for Christmas in 1995. I listened to Blurs album first but soon put it away after listening to ‘Morning Glory’. There was only ever one winner in my eyes and it stayed that way for many many years. I felt like a traitor for even watching a Blur video on MTV. An idiotic loyalty that prevented me from appreciating some really great videos with tunes to match. There was never really any rivalry as such just a group of lads trying to sell more records and concert tickets than the other and I was suckered in big time like so many others.

Oasis were my obsession for a long time. Over the years obsessions have changed and that intense loyalty has thankfully wavered. Loyalty is a very admirable trait  but I’ve learned it should only be applied to what really matters. As I write this now I’m listening to The Best of Blur and I don’t feel one ounce of guilt. I would by no means consider myself a music buff but I am certainly an enthusiast. But for most of my teenage years if Noel Gallagher didn’t say it was cool I didn’t listen to it. They were the music rules I lived by and even thinking about it now makes me feel a bit perplexed. Why should I let someone that I don’t even know affect my life in such a strong way?

Yes Oasis’ music and their all round attitude was significantly influential to an entire generation and I’m by no means knocking that. They were important and, in many ways, still are. I recently seen the Supersonic documentary about their rise to fame and it really was phenomenal. The cinema was completely sold out. I couldn’t help but bang out a few Oasis tunes on my lunchtime strolls this week and those teenage kicks came flooding back. However, phenomenons are fleeting. And the sooner you move on from them the more time you have to indulge in the alternatives.

Not everything we do or like is going to be appreciated at a meteoric level. How could it be? Still there’s no harm in having an Oasis-esque self confidence (“we’re not arrogant, we just believe we’re the best band in the world”) even if it’s only in your head.

My life has changed dramatically over the last couple of years. Although it doesn’t feel that dramatic only upon reflection. I have what’s known as Relapse Remitting MS. I can relapse at any time and occasionally I do feel as though a relapse is imminent. Luckily I have yet to experience any significant relapse. When I feel one is likely I just try extra hard to eat healthier and exercise more vigilantly. Keeping my mind on different things is very important. No one uses their brain to its maximum capability but there are a multiple of ways to use different parts of the brain without even realising it. That’s why the Oasis comparison is so relevant. I always stuck to the one band, the one genre, very little variation.

‘Variety is the spice of life’. These sayings lose their meanings over time and become just clichés. But it’s so true. I am making a conscious effort to approach all situations, especially the over familiar ones, with a new frame of mind or approach. I have to. And I feel it’s helping me become more confident in myself. Crossword puzzles and building lego helps me use different parts of my brain that I don’t use regularly enough. Even my recent charity walk for the Jack and Jill foundation can be used as an example. As MS was the first detrimental illness that I had witnessed for myself I had always thought that should I ever do any fundraising it would be for MS Ireland. I am part of the MS-society and we contributed to MS Ireland as part of our wedding favours. This week as well Michelle and her family took part in a quiz night for MS Ireland (and won!). MS will always be on my mind so I needed to break out and do something different. I heard an inspirational story last year about the Up the Hill for Jack and Jill fundraiser which I shared in my previous blog. I didn’t think twice about doing my bit for another charity. In my head I was thinking ‘the right time is always now’ and within a week of putting my name down, and with a little help from family and friends, I managed to raise over €1,400.

A very proud achievement and an enjoyable experience to match. Obsessions have changed from music and people I may never know to health and loved ones who will be with me forever and herein brings the loyalty. I’m not arrogant, I just believe I’m learning to become the best person I can be.

“What made me behave that way, using words I’d never say, I can only think it must be love. Oh anyway. It’s looking like a beautiful day.”

Elbow, One Day Like This

#KBYERRR

#MAD4IT