Super computer and brain busting Government

At this stage we all know that there is a super computer in your head that has a speed of light connection with your ‘whole’ body. It controls your breathing (now you’ve noticed it, aren’t you glad your subconscious is handling it!), your heart, cells, neurons, neuroglia, thoughts, sleep, feelings, emotions, let you know if you’ve cut your hand or if you’re going to make that catch.

LeftBrainRightBrain

Image: Cartoon a Day

Learning to ride a bike, fly a kite, tap on your phone, play football, read a book, get merry with your mates or fall hopefully in love. You’re creativity, brilliance, the way you think about things, your view on the world, your innovation, that unique contribution only you can make all come from that ball of grey wonder in your skull.

So what?

If your computer gets a virus, knocked about, injured or gets scarred for some freaky weird reason, you can’t get a ‘patch’, update it or replace the hardware. This one is the only version you’re going to get until the promises of Star Trek make their way to our present world. When things go wrong with your super computer, it’s hard to try to figure things out. Brain injury or neurological conditions not only literally mess with your head  (MRI scans are ugly/beautiful sight in my house) your whole sense of self is thrown off balance. Metaphorically, people are thrown off their bikes into a ditch.

So there you are in the ditch and looking for someone to help you out or at least to tell you where you’re at and what’s going on and how to carry on. The Neurological Alliance of Ireland (NAI) represents different people/groups that have helped many of us with neurological conditions of different types (700,000 people in Ireland) out of the ditch. Mags Rogers and Sinead Gleeson from the NAI have stood alongside people with neurological conditions as we’ve dusted ourselves off and attempted to return to life and get back to health. They recognise the importance of services, the vitality of life and the quest to challenge the dismissive attitudes to brain health. This Government still hasn’t funded the Strategy…

Pinky and the Brain

Shutting down dissent
In the last few weeks the NAI have had their core-funding cut and are due to close soon if the decision is not reversed. In February 2013 I spoke to an audience of government TDs, Senators and representatives in Government Buildings how my life was restored with the support of MS Ireland, an NAI member group.  We shared experiences and I thought I’d had some effect.

I’m not going anywhere and this chronic brain condition I’m living with isn’t going to be cured. Radical idea: how about we make the blather about Ireland being great for business, Irish people being great trailblazers and innovators, writers, messages being shouted from the rooftops, valid for everyone, with or without a neurological condition. The one thing we have in common is that lovely brain in our head. During this Year of the Brain, I’m celebrating and supporting the efforts of the NAI and others like them by campaigning to get their funding renewed.

The much lauded but not implemented Neurorehabilitation Strategy 2011-2015
http://www.dohc.ie/publications/NeuroRehab_Services.html
An evasive answer to Deputy Nicky McFadden’s questions on the Neurorehabilitaion Strategy (2011-2015) March 2013 from the Minister for Health.
http://www.kildarestreet.com/wrans/?id=2013-03-26a.1334

Disclosure: I worked with the NAI on their Manifesto and other campaigns in 2013

© Emma Rogan 2014

It’s a Matter of Pride

Weeks of celebrations mark Pride season at the end of June, in Ireland and all over the world. It is a colourful time of rainbow flags, random gatherings, queer culture and all things diverse on the streets of Dublin. It is also a time when people are more likely to be identified  with rainbow colours; comfort levels increase as a secure feeling of knowing there are plenty of gays about makes people feel safer. Strength in numbers you see.

But what is it that has friends and people from the LGBT community gathering together on one day of the year? It is to show one another we exist. Perhaps for the other 364 days there is no-one else we can talk with because we’re not out, For many people, they grow up not hearing about gay in a positive way. On Pride, we know we’re not on our own and better than that, we get to celebrate being ourselves.
To use the line from Dublin Pride, here’s Dr. Seuss with some fine words…
Youer Than You

“Today you are You, that is truer than true. There is no one alive who is Youer than You.”

It can take us humans time to get comfortable in our skin. This can be interrupted with modern living. Feeling proud of who you are, what you’re ‘made of’ and understanding your place in the world can all be forgotten as we race about looking for approval. While we’re checking our ‘Likes’, all mere clicks of buttons with barely a glance, we loose a grip on reality, on being in the present. Facebook, where everyone else seems to have a far more exciting life than me, or Twitter where everyone else is so much MORE successful or Instagram or Pinterest or Flickr. All ways of looking into other people’s mirrors but also ways of loosing sight of what matters- YOU and the authentic life you live.

I can be nothing more than who I am and as yet, I have barely glimpsed who I’m going to be. Put down the phone, close the lap top and allow your potential some freedom of expression.

 

© Emma Rogan 2014

Please Dream for Those Who Can’t

Summer time and the living is easy. In theory anyway. The last month has been hectic with lots of travel, meeting people and presenting to different audiences. When there’s a chance, my mind gets all gooey, reminiscing on previous summers, memories of past loves, summer parties. It seems that life is normal. Have you ever noticed that when things are going really well, that’s when the little things, the little reminders of your old way of being, have such a profound -negative- effect.

Dream for those who can't

Losing Sight of Our Dreams

We stumble into a new way of being with  ideas of SELF turned upside down and inside out. Every day that third week in the summer of 2007, with the pieces of my heart rattling round my pocket, I drove myself to hospital, got my steroids, and then drove myself to work. The dreams were gone when I started seeing my world only through an MS filter. Eventually, I had to start taking ‘it’ off.

There’s no doubt in the last seven years life has been raw, it has been ugly with cursing and swearing, lost relationships. With all that said, these past two years life has turned around as I made changes and choices and started planning for the life I wanted. This has been a heck of fun and since there was no way of avoiding it- IT being life- I’ve been doing things I didn’t imagine and having a wonderful, happy life.

ARE YOU EVER READY?

We go to school, our parents/those who are with us and what we experience is all about preparing for life and growing up and getting to know stuff and learning and knowledge. But I didn’t know I had MS written into my Book of Life. No-one can ever be prepared for diagnosis with a chronic illness. We are confronted with things never expected, with the subsequent fall out for a time. We have to adapt expectations but this does not mean losing out on life. However, it does call on people to assess their plans, adjust to a new way of being and strategically deal with life ahead. This is not managed in isolation; it is important that partners, friends and family are all part of the strategy for living this life.

I have raged, adapted, raged and finally, am getting a grip on what life with MS is all about. It’s about LIFE. For each and everyone of us, every morning we wake up we must realise that there is something to wake up FOR.

What are you happy about in your life, about your self? Make a quick check and if you’ve lost sight of your dreams, there are people who are dreaming for you.

Wishing you a wonderful sunny weekend, whatever the weather.

 

© Emma Rogan 2014

Copper and Wool for My 7th Anniversary*

Last week I was taking part in the European MS Platform Spring Conference in Dublin, Ireland. This is the highlight of my year- a gathering of old friends, an opportunity to make new ones and this year there was the chance to try Zumba, have a giggle while strengthening your core at ‘Sadistic PE’ and get all comfortable about ‘Minding your Mental Health with Shana Pezaro, George Pepper (@shiftms) Shift.ms and Scott Ahern  (@seechangescott) from See Change. It is this that has me writing today, the state of my mental health.

Making the most of the life we have can be the furthest thing from our minds when we’re struggling or writhing in the pit of despair. In the past it been crap with the odd wobbles every now and then. But today I am feeling good. Today is my 7th anniversary, seven years to the day I tumbled head-over-heels into the pit and started my ‘marriage’. I went to Mullingar hospital to follow-up on the scans and tests I’d had in the weeks before. I was made comfortable in the Day Clinic, attended by nurses who were funny and compassionately powerful with their care. After a few hours, the consultant arrived.

*ACTION* The curtains were pulled around the bed and Mary Kate, Wahil and my Consultant stepped inside. Like a scene from Grey’s Anatomy (when you see everyone step in and close the curtains around the patient’s bed) you just know something BIG is coming.  On the 14th May 2007 I was diagnosed with Multiple Sclerosis, started on a course of intra-venous steroids to dampen down my immune system and went into some sort of post-traumatic shock.

It wasn’t a gift, it hasn’t be a joy nor have the symptoms of MS been anything wonderful to share with others (even though I do!). Too exhausted to enjoy a night with my friends- check. Cognitive clouds that cause me to stammer- check. Loss of balance (fractured shoulder, lip surgery, skinned knees)- check. Or my absolute favourite, BURSTING into uncontrollable tears (Pseudobulbar affect (PBA)) whenever I had any happy emotional response- check. However, though the blinds were pulled down on that lovely bright morning and the bright future I imagined for myself seemed to be shut down, I now look back and say to anyone newly diagnosed or who is down in their own pit, things do get better. What is worth sharing is what has happened since then, the people I have met and the joy I have experienced by staying alive.

How do we do this? We need a strategy, to put things into our metaphorical ‘Toolkit’ that will aide us get out of that pit.

1)   Anticipate Change- nothing is more difficult than changing when we are forced to. It is far better to anticipate change in our lives, to think about what life may bring and to make the necessary adjustments long in advance of the change in our circumstances. MS can’t necessarily be anticipated but it is what happens afterwards that counts.

2)   Learn something new- no matter what our situation or how much we think we know, there is always something new to learn. Again, is it about not waiting for things to come along. Take advantage of the access you have through the internet and books and knowledge. You will benefit from it and have lots of fun on the way too!

3)   Be flexible and adjust QUICKLY- back to Anticipating Change. I know how good I am at feeling sorry for myself but it is when I get back up, brush myself off and learn from my experiences that I can move forward. If we’re flexible and adapt to change, life does go so much better.

Whatever cross you bear, baggage you carry or pit you’re in, you can and will get out and get to put your heavy burden down. Just remember to put it down, to let go of the suffering that we can so easily get comfortable with. No one else can determine the meaning of your life. There have been times when we have to deal with problems we never imagined, when life seems too much to keep on living. Make the choices, make them for yourself today and make them for the YOU you will be tomorrow. Never, ever give up.

*Copper and wool are the traditional gifts for folk on their 7th wedding anniversary. Today I will wear the copper bracelet I made a few years ago at Electric Picnic as the weather in Ireland has actually been too warm for wool. It is a day to reflect and to savour all the good that has come my way.

© Emma Rogan 2014

Please add your comments and stay in contact here or on Twitter @emmadragon

 

Concern For Your Health – Not Fat Shaming

Originally posted on Calm Chaos:

This. Before you get upset, please read and understand the article.

I want everyone to be happy, and I believe a big part of that is being healthy. When you are healthy, you feel better mentally and physically, you are more confident, you have more energy, etc. When you are not healthy, you are lethargic, in pain, and worst of all unhappy with yourself. I am not here to hurt or shame anyone. In fact, it is the exact opposite – I WANT TO HELP! That is why I spent several HOURS yesterday working on a free fitness challenge for May. No one pays me to do that. I don’t get any type of commission. It is not a requirement that I need to fulfill. I do it for free, EVERY MONTH, to help others. That is just one of MANY things I do for FREE to help others with…

View original 88 more words

Awake to Fatigue: The pavement view

What is this ‘MS Fatigue’ people talk about and why does it get the blame for so much? This week I’m taking a closer look at its affects, what remedies are available and how I manage my daily visitor.

“A wake-up call doesn’t come harsher than this!” I thought as I scraped myself of a Brussels pavement. Actually, there wasn’t much in the way of ‘clear thought’ at all after I went crashing down narrowly avoiding chewing the pavement.

It was after a day of training in the EU Commission I was on my way back to the office. I walked at a gentle pace- a beautiful sunny day with the pink cherry blossoms already covering some of the nicer avenues….Bliss. Then, all of a sudden, I was sprawled across the cobbled street with knees torn up, bruised limbs and papers strewn along the path. My toe had caught on the lip of an overly ‘generous’ cobble-stone and instead of seeing it for what it was – a chronic case of bad pavement maintenance in European capital- I blamed myself.

Back up a few steps and answer me this… have you ever fallen? Does your balance get a bit iffy sometimes? Is fatigue part of being iffy? What else could it be?

Knowing what fatigue is, recognising it and doing something about it are very different things. Statistics show that 80% of people with MS deal with the effects of fatigue in their daily existence with 25% stating that their activities were always or very often limited by fatigue. Medics are not sure what its caused by- theories include it could be brain atrophy, scars in the Central Nervous System, changes in grey matter. For some people it almost never goes away and has a monumental effect; they need to rest for extra hours, if not days, to recover from the exertions of daily life. For others there are different treatments that provide some help in offsetting the effects. These include modafinil prescribed by healthcare professional or the more commonly available caffeine hit courtesy of such places as Insomnia and Starbucks. I admit, over the years my imbibing of coffee was reaching epic proportions as I attempted to perk up my fatigued cognitive system with strong Americanos or the rare delicious-soya-mochas-with-a-couple of-sugars-thrown-in for that extra zing! They were delicious but the chemical crash wasn’t worth it.

Emma’s Ease the Fatigue List

Activity- Do get out and about when you can, meet with a friend for a walk/run and a chat. Stretch your limbs, twist your wrists and move what you can
Rest- Don’t be a King Canute and try stopping the tide of fatigue. Go easy, rest and if you’ve noticed changes, talk with your MS Nurse/neurologist.
Meditation- Mindfulness of the breath exercises ease your brain activity and are surprisingly liberating and effective. Check out Jon Kabat Zinn or a local Mindfulness course.
Be Kind- Firstly to yourself. MS isn’t your fault, nor are the symptoms. Once you’re operating on Full, you can then give to others.

Feeling overwhelmed, depressed and stressed adds to the symptom and really need to be carefully watched. Get help from a professional to check what’s going on and contact the local MS Regional worker to find out if there’s anything available in your area.

Now, after years battling with the tiredness I have negotiated a deal with my fatigue. During the week, I rest in the afternoon for 30 minutes with my favourite music/meditation track. It isn’t easy during a work day but without it, my cognitive function gets extremely slow and my day gets very difficult. Somedays if I’m exercising plenty and in good form, I don’t need to rest at all. There are also days when, from the moment I rise in the morning, I am exhausted. These are the very difficult, sad and lonely days when I do all I can to remember its not my fault.

As the days pass and injuries heal we must remember that not everything ‘bad’ that happens is because of MS or a symptom of MS or- Stop the Lights- might have absolutely no direct link to MS! However, when it comes to the scars on my knees and hands, they are from an accident caused by a series of unfortunate events. So are the brain and spinal cord scars that show up on the MRI.

Fatigue may be a symptom of MS that can totally mess up our lives and leave us flailing. But like dodgy paving and the scars that come from a fall, it’s about who to reach for when we do fall that counts. Today, reach out to yourself and do something now that eases some of the scars left by MS. Whether they’re physical, emotional or otherwise, they need to be recognised for the healing to start.

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How is Your Happiness Today?

Like the hailstone storms that are smattering Dublin setting off car and house alarms, there are some surprises that scupper plans and make us uncomfortable. ‘Happiness’ is like a hail-storm; it arrives all of a sudden in a shower of bliss and then it stops. That’s what I’m used to, a passing phase of happiness interrupted by the black dog of depression. I’ve read many books of how to make the most of life but somehow, I still got used to thinking the same way, comfortable as I remained oblivious. The negative thoughts I was thinking have resulted in bad feelings and those bad feelings are scuppering my moments of bliss.

Croagh Patrick St Patrick's DayCroagh Patrick, St. Patrick’s Day, Ireland

Just stop thinking about being happy

There are challenges in life but being happy doesn’t mean denying those challenges. It’s about focusing on the rest of life, remembering the good stuff – we’ve all had great moments we can tap into that will help us dismiss the negative thoughts. I’ve got some scar tissue in my brain but I’ve got billions of healthy cells with neuro-genesis there too (not my MRI scan)! By focusing on the functional & skipping (metaphorically) over those scars it is possible to get to the wonderful, happy moments of life. Gradually, those moments turn into minutes, those minutes into hours and those hours into a state of being.

So where is The Happy? It isn’t at the top of Croagh Patrick on St. Patrick’s Day ( though I was happy to have gone to the top and back!), it isn’t in the bottom of the pint glass, it isn’t in the bitching you do with your friends or comparing conquests with your mates and it isn’t in being a victim to what people expect you to be, to what you expect you to be. Happiness is not the far away land that maybe someday, with enough reflection, enough head work, determination and maybe even pain, we’ll arrive at the shore.

It is here, now. This reminder to stay present, staying ‘here’ and real from Pope Francis landed at just the right time.  It is thanks to a dear friend who is walking happiness where ever she goes.

“Don’t cry for what you lost, fight for what you have. Don’t cry for the dead, fight for what was born in you. Don’t cry for those who abandoned you, fight for who is with you. Don’t cry for who hates you, fight for what you want. Don’t cry for your past, live for your present struggle. Don’t cry for your suffering, struggle for your happiness. With the things that are happening to us we are learning that nothing is impossible to solve, just move on”. Pope Francis

On this day, this moment, start now. Make the commitment to be happy.

“You have to make a commitment. There is no way to happiness. happiness is the way”, Richard Carlson

© Emma Rogan 2014

What’s your story? Get into the conversation, make your comments and tell us about your quest.

Updated 26th March 2014