Multiple Sclerosis in the 21st Century. Use Social Media to Raise Constant Awareness - Manifesto -

In recent years, with the rise of the new media and then getting more and more social, there have appeared new ways of contributing to the awareness effort. People’s attention is focused on these little screens we call smartphones and tablets. Their attention span became smaller, time has even become a commodity and all the awareness efforts should be made wherever people spend most of their time: on social media.

In today’s article, I’m going to focus on three creative ways (plus a hybrid one) in which you can use the new media. These can make such a big difference in letting the world know about multiple sclerosis.

SOCIAL CONTEXT

All over the world there are many societies, organizations, NGOs and medical institutions who dedicate their entire efforts and expertise to raising awareness and trying to find a cure for multiple sclerosis. There are also huge efforts being made in order to communicate MS to the general public, but mostly in advertising or social campaigns, in changing and creating policies inside the governments and so on.

Being a part of the online MS community myself and having closely observed it for the past two years or so, I can now say that we aren’t using social media to its true potential. Although we have quite an online presence, most of the MS-related communities, pages, etc. are targeted back to MSers, their families and friends, to medical research or political entities.

Given the fact that we are young people with ages between 20 and 40, we are tech-savvy, so we need to do the best we can in order to raise awareness. Constantly, not just on MS Awareness Month or International MS Day. These campaigns bring huge amounts of attention to our cause, but only on the short term.

People tend to forget the things they are not reminded of again and again. Think about advertising. It takes a large number of repetitions for a commercial to raise interest in a product or service, not even mentioning that the market is already supersaturated with ads, promotional emails, promos and intros that interrupt daily lives, only to annoy and lose attention of people completely.

The globalisation of online communication changed our societies. This is where the public opinion is formed today. Social media are the new agora of our civilisation. From ancient papyruses to the written word and television, the world we live in has been built on stories, on legends and on tales of conquest and bravery. We are all looking for role-models, for real-life heroes, we want to hear success stories.

By gaining more and more attention from the ones around us, public opinion will begin to create more buzz about multiple sclerosis constantly. The more people that know about it, the better. They can eventually help in influencing political and social decision-makers to focus more efforts on research and finding a cure, onto creating rehabilitation centres and facilitate access to treatment.

WHAT ARE THE SOCIAL MEDIA YOU CAN USE?

There are three main categories of social media that I would like to tell you about. These categories involve three creative ways in which we can share things and an extra one focuses on mixed media. You can use the ones that best suit the way you express yourself, or a mix of the four. Your choice. 

I personally use a mix of blogging, Facebook, Instagram and Twitter to share my stories, because I feel more confident writing and taking pictures.

WRITING - Mostly used in blogging. Platforms like: Blogger, Wordpress, Medium, Twitter.

PHOTOGRAPHY - Displaying bits and pieces of your daily life, experiences and favorites. Platforms like: Instagram and Snapchat.

VIDEO - For those of you who wish to record themselves vlogging or telling your story. Platforms like: YouTube, Vimeo, Periscope (live chat using video).

MIXED MEDIA - Can’t decide on one type or want to have more tools in your storytelling belt? Platforms like: Tumblr (text, images, gifs), Snapchat (video and images), Facebook / Twitter / Instagram for their native video capabilities or for their microblogging (text) ones.

WHY IT'S EASY TO TELL YOUR STORY

We like to be given attention, to be able to talk about ourselves and to be listened to. What better way to do this than to use social media? Be constant. Be present. Show your life events with and without multiple sclerosis. Celebrate your wins and share your loses. Let the world know that multiple sclerosis is real, chronic and that it must be cured.

You might not want to disclose your identity. Social can help with that. Create a public persona that will make you feel safe, whilst still be able to be present online. There are countless others who have already put a face on MS. In raising awareness, your story counts. The more voices tell the world about multiple sclerosis, the better.

We all have a story to tell. Some unbelievable ones, I assure you. Stories that the world can learn from. Stories about hardship, human resilience, about helping each other, stories of strength, of needs, dreams, anger, sadness and happiness. All human, all about survival. It’s all about ourselves, but it’s also about sharing it with our communities.

In the 21st century, the power of this new media can serve a higher purpose. That of raising awareness to help our fellow humans and by that helping ourselves as a society.

LET'S MAKE IT A REALITY

Share this short manifesto using the #MS21stManifesto hashtag. The power is always in the community. I invite you to tell your story.

As always, transformation comes from within.

Sincerely,

Alex

Staying True To Yourself. Why I Write

We are all different in our capabilities and talents. We like and are good at different things, thus each one of us is special in his or her way. Society bounds us to a grid of rules and measurements, wanting to equalize each individual to the next. Creating uniformity makes us easier to quantify, supervise and control.

Backstory

Following the Industrial Revolution, our society became more and more mechanized and labour-focused. It saw people not so much as individualities, but as work-force, as elements of a system that was bound to make profit. And this system is here still. It grew from the factory in the Victorian era and evolved into the corporate world of the 21th century.

But what is there to do when you are a free spirited person? When you value more self expression and talent than following society’s rules? You become independent or you develop anxiety attacks and a feeling of lacking purpose.

I went through the second type of situation. The pressure to conform got so heavy, that I often found myself over stressed, more irritable, feeling boxed in, and like I was putting on a mask every single day, for the past seven years. And I just realised that it’s been that long.

So, for seven long years I went back and forth between corporate or semi-corporate jobs and my own self. And it’s been exhausting!

Imagine being at work, standing comfortably at your desk, having a spreadsheet open in front of you, and your mind wondering away, to the places and things you wanted to be doing instead. You might say that this happens to all of us once in a while. We get tired of work and start day-dreaming about relaxation and the following vacation that we’re going to in a month or two.

Now ask yourself: is this how things are supposed to be? Is this the right thing? Working to afford a life that you only can live fully a month a year? Speding time with your family for just 5-6 hours a day? Focusing on deadlines and sales targets rather than what makes you feel complete and your most productive self? Are you sure that’s how you want to live the rest of your life?

I surely wasn’t up for this challenge! I wanted something else. Some other challenge.

The Turning Point

This past year since my MS diagnosis, I came to realise what I value most. What are my core goals in life. And none of the corporate achievements was one of them. I remembered that I want to help people achieve their potential. I remembered that I love hearing life stories. I remembered who I was before entering the production line.

Deep feelings and emotions arose as I was getting back to myself. As I was rediscovering what made me human, and what made me… me. To some it may sound like woo-woo stuff, but getting back in touch with your own self is life changing.

You wouldn’t believe how much anger, frustration and fear can deposit inside you for years and years. And it’s all boxed in. Walled in. And you think you live the best life ever.

And then the void comes. That feeling of shallowness and lack of purpose. It will come, because you are working to fullfil someone else’s dream, and forgetting your own.

Spirituality and getting in touch with your core is not some hippie bull-sh!@. It’s the thing that makes you a human being. Eastern thinking has been knowing this for more than 5000 years.

Getting back to yourself doesn’t mean retreating from this world and live your life on a lotus flower listening to the waves. It means relearning who you are, what are your goals in life and act on them.

Have a purpose. Work daily on your idea. Find fullfillment and ease in doing what is right for you. It’s probably the most important thing you’ll ever do.

How I Came To Writting?

The answer is I did not came to it, as it was already here. It has always been a part of me. Since I was little, writing was my best form of self-expression.

Putting words on paper had and still has a deep cathartic effect on my mind. It exorcises my inner demons, so to speak. It emphasizes what is true, valuable and persistent in my life. It gives me clarity and is a keepsake of my memories.

It’s the way I communicate best. Mostly now, writing the SMart Choice blog. I made a commitment to myself. I need to write an article every single day, in order to grow as a person and as a writer. It is a form of practicing in public, like Jeff Goins says.

I write because I love to be able to express my thoughts,  I love to tell stories and I love the idea of maybe helping someone who gets to read these articles. Living in the digital era makes it even more exciting and fullfilling. I get to share my points of view and find other like-minded individuals with whom I can further communicate.

I cherish relationships and communication. We are social beings. We have always lived in tribes. Even in today’s times, we are all part of small groups, large groups, professional groups, leisure groups, you name it!

Each of these groups is a tribe that stands for something. A tribe focused on a common goal or interest. That’s what’s shaping our selves. We have multiple statuses, we play a multitude of roles, but the most important is to stay true to yourself.

Sincerely,

Alexandra

P.S. What is your opinion on this issue? Share your answers on Facebook or Twitter. I would love to find out your point of view. Thank you for the visit!

Making The SMart Choice & Why Should You Care About It

What happens when you get diagnosed with Multiple Sclerosis? Your mind begins to shift. Either you make a turn for the better or one for the worse, you are never the same person. You just had a life altering experience. And you are faced with a lot of responsibility and choices or with denial and continuing as before.

How It All Started

Last year I had a head full of questions regarding the lifestyle choices I needed to make. Being diagnosed with multiple sclerosis shifts your point of view more than a little. It was clear to me that spending my life the way I was spending it before, was no longer an option.

New choices were needed. New ways of living so that my body and mind would be in their best shape and health possible, and as free of inflammation as I possibly could.

And so began a long process of educating and changing myself on the topic. I have always felt empowered by information and knowledge. I began searching infomation on MS, nutrition, exercise, diagnosis tools, lifestyle hacks and so, so much more. It was and still is the one thing I do on a daily basis: staying on top of it all and taking charge of my life. I consider it to be mandatory. Only then we have the right to complain.

You Have To Help Yourself

I know I might sound ruthless to some people, but that’s how life works: you have to be assertive and fight for yourself. Nobody else cares. You have to take charge, make changes and help yourself first. 

People tend to pay attention more to people who fight against the odds, and for a better life. If you stay there and do nothing but complain, get angry at the world and expect others to cater for your needs, you are in for a big dissapointment.

Nobody is gonna save you. Nobody but yourself!

Life is rarely fair. Life is rarely easy. Things don’t just happen as money does not grow on trees (except it has fallen off from a helicopter right onto one, but that’s just Sci-Fi stuff :)) ). We all have struggles in this world. We all fight battles that nobody else knows about.

We might seem as picture-perfect and as happy as can be when we are out in public. But late at night, when we lay our heads on the pillow, we all have dreams, pains, wishes and hurts. We all feel, suffer, and have our own issues. So don’t judge a person. You don’t know what it takes for that smile you see or for the words you read.

If today I have the SMart Choice blog and you read all these stories full of metaphors and positivity, know that it has been a long way to get here. The journey is still going.

Behind all of this there are endless hours of research, endless planning and ideas, ongoing drafting and organizing. 

There are countless moments when I feel fear for my future, when I felt out of place, when I felt this blog had no purpose and then found it again. There are moments when I struggle to get in front of you and deliver the best article I can, to deliver positivity and encouragements. There are moments when I struggle through cog-fog and fatigue. There are moments when I panic as numbness suddenly starts or my eye getts blurry.

It's All About The Mindshift

But you know what? I breathe in and out profoundly, and repeat to myself that this too shall pass, and I get strong again. I push through, I get up and brush the dust off, and I move on with my day.

SMart Choice is one of my purposes in life. It is my way of lending a helping hand and making my mind heard and my ideas encourage someone. 

If only just one person feels better after reading SMart Choice, my day is a success. The aim is to make people face the truth: yes, life is hard. 

Life with MS is harder still. But what do you do? Give up or fight?

It’s not easy, it’s not pretty, it doesn’t matter if you have treatment or not. It’s all in the mindset. In the way you push through each and every day to move onwards, always onwards.

You have been given a life. Make smart choices. Make the choices good for you, the ones that suit your life. Design your own lifestyle around MS. Keep it boxed in or it will box you in.

Designing A Diet

I began eliminating all harmful items. I gave up smoking ever since I had the first neurological consult, as I did not feel up to it any more. I felt that I should not do it until my situation was clear. That day, when I came back from the clinic, I had my last ciggarette. I’ve never touched them since.

The next rational choice was giving up coffee, coke and all the sodas I had been drinking so far. Water and tea became my new best friends.

Gluten came next. All white flours: bread, pasta, pizzas… they were all gone from my diet. I made the choice to be healthy, and not to feel bloated.

Sugar and dairy were a bit more difficult to let go. Bread and carbs were never my favourite things to eat, so the choice was easy. Chocolate and yoghurt were a different issue. They’ve been on and off my diet untill about 2 months ago. I let them go for good. I made the choice to get rid of all possible inflammation in my body.

My diet is made up out of simple foods. Food that is as close to its natural form as possible. No frying, just baking, grilling and steaming. Chicken, turkey, beef, fish and seafood. Organ meats, seeds and nuts. Fresh fruit and vegetables. Limitting the starches to only two servings per week, if any (potatoes, rice).

No refined or hydrogenated oils/fats like sunflower oil or margarine. Only avocados, olives, olive oil and coconut oil. Of course, consumed in moderation, as they are still fats.

The only sugar I consume is raw honey. I found a beekeeper and I buy locally, not from the supermarket. Mix three tablespoons of raw honey and coconut oil with six tablespoons of raw cocoa, add a few drops of your favourite aroma (vanilla, rum), a pinck of salt and maybe a few pistachios, and you have the best sugar free and safe home-made chocolate!

Designing An Exercise Routine

After constant trying and testing, I found that my body thrives on gentle movements and cardio. Every morning I get up and exercise my strength, flexibility, balance and endurance. Every day! 

Every day I get up on my stationary bike and pedal as much as my body allows me. I do 30 to 60 minutes of yoga to stretch and flex my muscles and joints. I work with my dumbells and raise my body’s resistance. 

It’s an ongoing process. I do as much as my body allows me but I show up every single day. I choose this lifestyle. 

I prepare for war. If my MS wakes up someday, I will be here to face it, as strong as I can be.

Designing Peace of Mind & Relaxation

Don’t forget your mind. If left alone, it can become your worst enemy. Fear, anger and depression could creep up any time. 

Take time to relax, unwind and just be still. For 10-15 minutes stop whatever you’re doing and just stand still and do nothing. Think nothing. Pay attention to your breath. Pay attention to what’s going on inside your body.

I found journaling helps. Five minutes in the morning and five minutes in the evening are enough to write down what are you grateful for this day, what your mindset it and how are you feeling overall. Make up your own main points you’ll want to write about. Personalize it.

This too is an ongoing process. It takes practice and determination. I can tell you from my own experience: it is hard to do this! The mind is a crazy monkey! But with time and practice, it does shut up. Trust me! 

Take time to rest. Nap when possible. Do some stretches throughout the day. Take it easy. Work hard, at your job and at your life. 

It is not given to you. You must work for it. Little by little. Day by day.

SMart Purpose

This blog is where I talk about my struggles. It’s where I give advice, it’s where I share knowledge and keep you accountable for designing your healthy new lifestyle. 

You have to make choices. You have to make smart choices that help you on your MS journey. Living with MS is not easy, but with the right mindset, it can be done.

Sincerely,

Alexandra

P.S.: If you want to know more about the SMart Choice journey, send me your questions via message over the Contact page or via email smartchoice.livingwithms@gmail.com. I would love to hear from you. Meanwhile, join the SMart community on Facebook and Twitter. Thank you for the visit!

MetamorphosiS - ep. 4 - When We Begin To Change

What is change? Why are we so afraid of it? Why are we against it most of the times? What effect does it have on our lives that makes us despise it so much sometimes? Change is necessary. It pulls us out of our comfort zone. It puts us in unfamilliar situations that we have to learn to cope with. It makes us learn. It makes us live. It makes us grow.

A year ago, on this very day, I was waking up in a hospital room, with an infusion pole next to my bed. It was all so quiet and yet so noisy. My mind was noisy. All kinds of thoughts were rushing in and out of it like it were a busy train station. “Am I OK?”, “What will the outcome be?”, “What lies next?” and so on. Multiple Sclerosis wasn’t yet confirmed, so I was still in Limboland, banging my thoughts to the walls of my skull.

Then and there I realized that what I used to think about me was wrong. The idea I had about what I can or cannot do was distorted. I have been staying in the same box for many, many years. And I just stepped out. This was uncharted territory for me. And although it was scary and I laked control over the situation, I was intrigued. I found myself learning. Asking questions. Listening stories and comparing myself to them. I was curious about the new experiences that unfolded before my eyes.

I am not saying I had lost contact with the reality of things, but that I learned. I faced the fear of needles, I felt the fear of being alone, I felt the ups and downs of the corticosteroid treatment, I felt the world crumbling around me as the doctor told me the diagnosis. But either way I payed attention and learned. About MRI’s, about tests performed, about human relationships when facing illness, about kindness, about family, but most of all, about me. These issues were all unfolding before my eyes as people interacted in the hospital room, as tests were performed, as people cryed, as people went on with life. And I learned.

I learned that we grow through hardships. We grow during hard times. We fight for our right to live and to lead a better life. We fight for being healthy. Relationships keep us strong and going, and a simple touch, smile or kind word can do miracles, even if it comes from a complete stranger. In times of hardship, we are all the same. We all hope for the best and try our best.

I am an idealist. I have been one for my whole life and it’s not going to change anytime soon. It might seem unreal or unrealistic to have such an outlook on life, given the fact that I have MS.

But you know what? It IS real, and it is powerful, and more people should go for it. I am not saying go live in a fatasy world, where all things are pinkish, chubby cherrubs play the harp, and Prince Charming comes to rescue you (or a fair maiden for you guys out there! :)) ). That is delusional. I’m not talking about having the mind of a 3 year old.

I’m talking about facing adversity and looking fear in the eye. Up close. Don’t blink. Push forward. And just when you think you can go no longer, push even harder. You know what? That is called LIVING. Comfort zones are crippling your life. You can’t go on letting fear knock you out around the corner for the rest of your life, can you?

Fear is always followed by anger. Anger is followed by stress. Stress is followed by inflammation. Inflammation leads to anxiety. Anxiety leads to symptoms. And you end up in square one. Hospital room. More fear, more anger, and so on.

You get trapped in a viscious circle. You feel boxed in in your own life.

People are amazing creatures. We are equipped with all that we need to move forward in life. And yet we stand still. And yet we don’t take action and accept what is given to us. We have the power to create our own reality. Meaning we have the power to change the way we look upon life and the way we do things. Stand up for yourself. Get out of your comfort zone. Be curious, plan your next steps and stick to your plan. Don’t try to make others responsible for your life and your well-being. Take charge and make things happen for yourself.

Life is a series of natural and spontaneous changes.

Don't resist them; that only creates sorrow. Let reality be reality. Let things flow naturally forward in whatever way they are.

 (Lao Tzu)

Accept your current reality. Adapt to it. Let it challenge you. Let it change you. You’ll be surprised by the person you’ll become. Your change has not begun. My change has not begun. It has always been here. Except now we take the challenge. Now we grow.

Sincerely,

Alexandra

P.S.: What changed since you’ve had MS? Are you a different person than you used to be? Share your answer in a comment on SMart Choice’s Facebook or Twitter page, @SMartChoiceMS. I’d love to hear your stories.

P.P.S.: Interested in the previous episodes? Click here to read.

About Change & Multiple Sclerosis. An Energetic Tale on Growth & Finding Your Inner Strength

What doesn’t kill you makes you stronger. That’s what they say. And that’s what I subscribe to myself.

Almost a year ago, in the days following the hospitalization for my first optic neuritis and Solumedrol experience, I felt less ego than I ever felt before. Something shifted inside me and made me realize that all that matters is how you behave and most of all how you make others feel. In spite of the corticosteroids making me moody and a cry-baby for the whole week, I was able to comfort the persons around me.

At first, they looked curiously at this young girl who had an i.v. jacked in her hand and was cheering them up. As days went by, I felt them warm up, as they realized it was not mere politeness, but that I really cared for their well-being. I helped as much as I could, listening to their stories and encouraging them. My greatest reward was that I could see their eyes smiling back at me. They appreciated what I did for them.

“However it manifests itself, after a transformative experience, your perspective shifts and the desire to get up and do something becomes strong.”

(George Pepper, co-founder of Shift.ms)

Even now, as I remember those days, it still makes me cry. There is so much sorrow in this world and we don’t even notice it. We are not aware. The irony of life is that it does not ask your ego if it wants to be bashed against walls when given an incurable diagnosis. No. Life just happens and sometimes it is cruel.

You feel like all the life is being sucked out of you. Denial kicks in, tears come and go, laughter comes and goes (ok, it might have been the Solumedrol acting on this one :)) ). You then begin your journey of discovery. You begin to search and read all that you can lay your hands on related to MS. You begin to understand and to explain it to people around you. You begin to feel empowered. You begin to change.

Change has always been a hard issue to face by anybody. We don’t like change. It pulls us out of our comfort zone. It’s dissruptive. People are creatures of habit, and although we might do new things, we stand firm on our foundations and refuse to move. We call that “growing a personality” and/or “having principles”.

Enter multiple sclerosis.

Your personality suffers a major blow right in the head. Your principles crumble as you face the humbling shadow of this complex disease. And here you begin to shift.

There are many destinations you can arrive through this shifting process: you can change for the worst or you can change for the better. The trick is to find the energy needed to dig out of the hole multiple sclerosis has prepared for you.

Reach out to people. Ask questions. Get educated on the disease itself. Mind your intuition and stay close to your loved ones. Life with MS does not only involve you. It is a family disease. Whatever you do, keep on moving. Metaphorically AND literally.

Fight back MS with all you can: shift your eating, shift your sleeping patterns, your relaxation times, reduce stress and EXERCISE. It does so much good. It helps you not just physically but mentally as well.

<<It wasn’t until a couple of years ago that I learnt psychologists recognise this positive reaction to life changing news as post-traumatic growth. Academic supporters of these ideas are keen to remind us that: "importantly, and this just can’t be emphasised enough, this does not mean that trauma is not also destructive and distressing. No one welcomes adversity. But the research evidence shows us that over time people can find benefits in their struggle with adversity."(Prof Stephen Joseph, Ph.D, 2014)>>

(George Pepper quotting Prof. Stephen Joseph)

Do whatever you can. Change. But use this opportunity to grow, not to become a bitter person. Bitter is easy. I know, I’ve been there for a while (and still make some visits now and then :)) ). It is not a pretty place.

Breathe, this too shall pass. Have faith in yourself!

Sincerely,

Alexandra

P.S. Question: How did MS change you? Tell us your story on our Facebook, our Twitter or in a comment down below. Thank you for visiting!
(photo credit)