Yabba Dabba D!! Vitamin D and Multiple Sclerosis

The Gulf Stream keeps us warm and temperate; the rains wash the fields to keep the tales of Emerald Isle true; our friendliness to strangers remains the highlight of many a tourist’s visit and we habitually talk about the weather. However, there are things that we miss out on being located where we are (Relatively 53 degrees 00′ N and 80 degrees 00′ W, Dublin: 53° 20‘ N6° 16‘), exposure to sunshine is one of them, with lack of Vitamin D in Irish bodies being a consequence of this lack of exposure.

The Irish Weather: It does make for good conversations and fills the gap in chatter Irish people are eager to avoid (lest it lead to a moment of reflection, talk of more personal topics like how we’re really feeling or what’s really going on in our lives). Example “Hello, how are you?” the usual response of “Sure I’m grand, isn’t it a beautiful/too warm/climate change ha!/miserable/wouldn’t-put-a-dog-out day?”. This is all fine and well but while we moan about the lack of sunshine, other things are going on in our bodies. Yes, it seems like bit of a tangent to skip from the weather to epigenetics BUT without exposure to UVB rays we’re missing out on the sunshine vitamin (Vitamin D) to such an extent that all people on the island really could do with supplementing their diets with Vitamin D.

What is Vitamin D? Not really a vitamin at all but is really a hormone , it is something the body makes itself. There’s a lovely explanation here from Harvard Health Publications here. More information on Vitamin D and MS are available here from the National Institutes for Health and from Overcoming Multiple Sclerosis. Professor George Ebers has done lots of research into Vitamin D and MS and you can see him here give a great explanation about Vitamin D and MS. Expect epigenetics (how our genes are changed by environment through the generations, DNA and all sorts of lovely information!

Multiple Sclerosis Infographic

 

Vitamin D and You: We’re talking about strong bones, immune system regulation and all sorts of other things.  Please note, the frequency of MS increases the greater the distance you live from the equator. While we still don’t know what causes MS, environmental factors such as location added to poor childhood nutrition/circumstances, diet, smoking tobacco, abusing alcohol and other drugs as well as genetic contribute and combine to be a factors in the condition.

This is something I’ve been researching for a number of years and it has become part of my Management Kit for my condition. I enjoy the warmth, dry weather and the feel of the sun on my skin. Recently I had my blood levels checked my neurologist so at least I knew what I was working with. They are at the right levels for preventative health (anywhere between 90-100 nmol/L).

Get Checked: It’s worth doing some research and getting your Vitamin D levels checked and take advice from your healthcare practitioner. It has implications for you now but for women, if you’re planning on having children, take Vitamin D for foetal bone growth, physical development and other important factors.

What I say here is a reflection of what I do in my daily life and is not medical advice.  This and other things I do in my everyday life are to maintain my happiness, lives well and to manage my condition. How about you? Do you follow the Overcoming MS Recovery programme or supplement with Vitamin D? have you any tips you’d like to share? Post your comments and connect on Twitter @emmadragon for a chat.

© Emma Rogan 2014

If you want to quote or use this material, please reference.

Crappy Food vs Kale | Thriving Health Manifesto

When the Universe gives you a nudge, or in my case a serious dose of Optic Neuritis, a numb bum, stumbling feet and needles and pins, it is time to stop resisting and make some changes. These changes don’t all happen all at once. As we get older, situations change and we discover new things we like/dislike, we pick up things that work and put down things that don’t. This may include medications for illnesses or conditions or other treatments.

I’ve learned from living with MS, that it takes more than a pill to be well. I’ve got to move. There are actions to be taken, nothing passive about this challenge when it is the things we do everyday, the choices we make, the food we eat, the exercise we do and the kind of people we choose to be that works for our benefit. Everything counts and the choices really really do matter to your health now and right until you take your last breath.

Arianna Huffinton: 12 Ways to Thrive from http://www.mindvalley.com

Books for the Journey

You have to read to learn from others what you’ll need. There are people who will put into a few words solutions that you may never get to learn in your own life-time. Take what you need, apply to yourself and try things on. Arianna Huffington has recently released Thrive, all about living well and taking time to make the most of this short life. It is about doing things differently and redefining success on our own terms.

Managing MS Naturally by Judy Graham (http://www.innertraditions.com/Contributor.jmdx?action=displayDetail&id=301) was the first book I picked up after diagnosis. It got me back onto earth and provided me with some great information for a newbie MS’er.  I’m also using the updated version which is packed full of advice. I went gluten-free, cut out dairy and went for the better options.

Overcoming Multiple Sclerosis by George Jelinek. It is a great read, there’s a Recovery Programme, oodles of inspiration and it will really add treasure to your health. It is a book I read often and dip into for inspiration and a general pick up when things are getting on top of me. There is a website- http://www.overcomingms.com

Mindfulness: Finding Peace in a Frantic World is part of the upsurge in awareness of mindfulness. Guess what? It works. My cognition has improved, concentration is better and I’m more productive in my life when I take time out. What else is more important that ensuring your brain functions well? The spreadsheet/washing/phone call/email can wait. Your wellbeing can’t. http://franticworld.com/

Meditation works. I started by reading Full Catastrophe Living by Jon Kabat-Zinn three years ago and was practising but not every day. I recently took an 8-week course which was a great way to get comfortable and meet some wonderful people. As it turns out, I’m more relaxed, can see what matters and am a better partner and friend.

Dr. Terry Wahls- The Wahls Protocol is another excellent source of inspiration and get-yourself-sorted tips. Here is the link to more information http://terrywahls.com/about/about-terry-wahls/ Currently I have two pots of curly kale growing on my balcony to make sure I’m boosting my nutritional intake as much as possible! This morning, I discovered 1229 caterpillars also enjoying the benefits of the stuff.

It took decades for MS to manifest itself in me. Thankfully, I have the rest of my life-time to make positive changes, manage and live to the fullest of my being. There are LOADS of healthy diets and plans and all sorts to help us live better with MS but only if we actually make the changes. Life is a ‘chronic condition’- there is no miracle cure but there are so many things we can do to make life better so we can be happier about ourselves and how we live.

Tell me what you think, if anything, about what you eat. What’s your Health Manifesto? Does it matter to you? Join me on Twitter @emmadragon

© Emma Rogan 2014

If you want to quote or use this material, please refer to me as author. It’s good karma and plagarism isn’t nice.

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…

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