How do you Remember?

This week I’m delving into life & what  I remember when I think back to life before the day of diagnosis. Kairos moment indeed.


The artist Do Ho Suh has a magical way of re-creating memories. Using fabric and wires he re-builds the places and spaces of his life in almost life-scale monuments. You can step through the door of his New York apartment, peer into his bath tub and spend time in his childhood home in Seoul.

08_do-ho-suh

It got me thinking about memories of life pre-diagnosis. I have a vivid memory of leaving an event my Mum had organised to raise money for  a local boy who needed life-saving treatment. As I pulled out of Royal Tara Golf Club on the sunny day I actually said out loud how thankful I was, how blessed I am with great health. I had nothing to worry about, I was working, I was enjoying life and looking to what was ahead. A few months after that special moment that I was diagnosed with MS.

I’m remembering and recalling my memories because it is those sweet times when we breathe in life and relish our life that will be emblazoned on our mind’s eye. In five or ten or thirty years hence we can vividly recall that breath on a particular moment on a certain day and have every cell filled with what we were dreaming of. We are replete with the reminiscing.


We can give up now, disappointed that things didn’t work out the way we hoped and while we’re sitting in the memories of who we were or what might have been, life is passing us by. The end is not far from any of us and yet it is only by looking back, reaching into the past that we can appreciate just how far we have come. No matter what, to be breathing, to be alive and to have today we can, as Lucie Silvas says, wipe the dust from our face and breathe in life.

How do you deal with the what might have been? Talk with the community here or on Twitter @emmadragon

Emma 2016

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Snake Oil Sellers & Your Path to Enlightenment

We love to talk. Issues, symptoms, what’s your neurologist like, what DMTs, if any, do you take? How long are you diagnosed? And there are so very many opinions! All sorts of things are discussed when MSers get together, online or face-to-face. But how do we do it with grace and kindness without dumping on someones path to enlightenment?

I was involved in a discussion where someone shared how well they were doing, crediting their change of health with better diet, exercise and more sleep. It works for him- he’s feeling better, pins and needles gone and he’s really enthused by his experience and wants to share it. Some people cautioned him to be careful, he’s only new to MS, to watch out for the ‘snake oil’.  I know people want to ensure that he isn’t being naive but I did think it was a little tough.  

Yet, it is what we all need, others to critique our beliefs about how well we are doing. This causes us to examine why we’re doing what we’re doing and to make truly informed decisions. But it also forces us to honestly reflect on our true state of health and self.
snake-oil-label

There are snake-oil sellers everywhere waiting and wanting to exploit our vulnerabilities. Early on, post-personal tsunami, I remember being told of the miracles of some juice that cured MS, it was only €€€€ per week and could only be bought from XXX person. Totally faux. There are faith-healers that have the cure and whilst this isn’t in my value system, it is for others. All I try to do for great health is to learn, read and discuss everything and go outside my comfort zone. There is no such thing as carrying on life as normal with a chronic illness. We do all we possibly can to give ourselves the best chance possible and for all of us as humans, it includes a great diet, plenty of exercise and more than enough sleep.

Recognising that there are also many different paths to enlightenment, to self-preservation after getting diagnosed with MS gives us strength and allows  us to change our mind and strategies.  We all know how dealing with this condition can be a monstrous, daily toil of decision-making, as well as being a revelation as far as human resilience . There is better medical treatment than ever before for MS; there is more research, there is more interest and thanks to the internet, we get to learn from other MSers who understand what it means to live with it.

It is up to every individual to to make well-informed decisions and do what’s right for them based on their values and well-interrogated research (on nutrition, exercise, mental health, medical treatment, rehabilitation, work etc.). Don’t get distracted by people who claim to have a miracle, over-night cure. This is a marathon, we do things everyday to stay in shape, stay well and build resilience. Whatever we do, we need to be prepared for change and readjustment. Nothing is ever the same since the D-Day, yet life can be better than we ever thought possible when we were first told we had MS.

 

Check out the Overcoming MS Recovery Programme and buy the book by George Jelinek- a great resource.

© Emma Rogan 2016

How do you get back up after diagnosis?

Today I’m looking at the resources that have really helped me not completely  freak out and allowed me to get to grips with my situation.

It is devastating. Being told you have MS shakes your world; everything stops/contracts, fear roars to the front and we are moved, for a time, to feeling unreal, surreal in our own body and life. Then it gets very real and I for one, wanted to talk to other people with MS who were dealing with it and could tell me the down and dirty of life with it. I started a Meetup gromeetup_logo_2015up in 2010 for people who wanted to talk to others with the condition, get information, feel ‘normal’ (because we are) and all without having to explain every little thing (it gets really tedious). I also needed to talk about work and staying financially independent. We are now 178 people from across the country (and some international) with 10-20 of us meeting once a month in Dublin city centre for a chat and a cuppa. For information and to join the Dublin MS Meetup Group click here or the image. I’ll respond asap.

Googling ‘MS’ can be a terrible idea, especially if you’re newly diagnosed. We look for the Penny dreadful-awfulness, the worst case scenario. However, nothing in the dreadful, harrowing stories you read is about you; it is the experience of whomever wrote it. Look out for the great sources of information such as:

ms-trust-logoThe MS Trust is a UK based organisation that is focused on providing information people can trust because of their work and , supporting the MS specialists people need. It is one of the best places for really useful  information,

 

oms-logoOvercoming Multiple Sclerosis (the OMS Recovery Programme) is all about getting yourself to the best health – body, mind, spirit- possible.“It is based on the pillars of diet, exercise, stress management, sunlight, vitamin D and omega-3 supplementation, and, when needed, medication.”

shift-ms-indexRemember I spoke about meeting other people with MS? At Shift.ms people can meet and connect with other MSers, all over the world. This is a brilliant, engaging and powerful MS Community. 

Build your strength by growing your knowledge and getting on with your life. Read books on MS, scientific papers, go to lectures on neurology/the brain/the mind, read about love and practice a life of happiness, write poetry and research the psychology of chronic illness, talk to other people with MS and when ready, delve into the horror of what life with MS can mean for some people. Always come back to yourself. You are unique, you have a life to get on with and all of these resources will help you make the most of it no matter what the diagnosis. I am not about being naïve. I am all about being informed and prepared no matter who you are, the life you live or type of MS you are living with (Relapsing-Remitting, Primary Progressive, Secondary Progressive or Progressive-Relapsing).

What do you think? What has worked for you? Comment below or get in touch on Twitter @emmadragon. Peace.

 

© Emma Rogan 2016

Can’t Sleep, Won’t Sleep

The basics of wellbeing are grounded in having sufficient, undisturbed sleep

Sleep well last night? When I finally put away my phone, I did. Many of us are forgetting the importance of sleep thinking that one last check of Faceache/Twitter/Snapchat/Instagram status is vital before shut-eye. Not only are these, for the most part, irrelevant to your health, your exposure to the ‘blue light’ emanating from your ‘phone is keeping you awake. Check this out from Harvard Health

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Sunset over Brussels Airport | ERogan

There’s another phenomenon that plagues my days and nights. In a wonderful mess of experiences the fatigue that is so common in people with MS gets coupled with insomnia. So, whilst I spend a certain hour of the day walking around like a zombie with cotton-balls in my head & eyes, when the night falls, I’m cosy in bed and relaxed… I cannot fall asleep. This zombie just can’t turn off her brain.

My solution has been a long time waiting for discovery and it has taken me years to find it. To combat insomnia at night, I have to rest during the day. Even when fatigue overwhelms my thought processing, dulls my cognitive ability and effects my decision-making, the  happy habit I’ve built to get rest overrides everything else. It is frustrating when you have a list of things to do for work, tasks to complete and calls to make. BUT, nothing is ever done to the best of my ability when I am below-par due to lack of rest.

Before Arianna Huffington, I was extolling the virtues of rest and sleep. If you need any more encouragement, take a look at her video from TED TALKS

Sleep=health

Sleep=success

Sleep=happy

When fatigue is a daily battle, take time away from scrolling through your phone and decide to make it time well-spent; nourish your brain, your body, your health and mind. Put away your phone and now, sleep…

Is this part of your story- fitful sleep despite fatigue? Share your story with me and comment below. Thank you for reading! 

© Emma Rogan

Living with Multiple Sclerosis | Video

This is a film shot a few years ago for MS Ireland. I go through the basic experiences of being diagnosed, how I felt about the whole bizarre MS mess and what gets me through the day. Seeing how very dated it is, I’ll make some new videos to share here soon.

Emma Rogan 02Click on this link Living with MS | Emma Rogan

Join me on Twitter for more information on MS, health and good living  @emmadragon

 

This weekend, give yourself a break

Up at 3:55, 4:55 in the early hours & proper up at 7:45 this morning with my chirpy, joyful little child, I didn’t get to do my meditation ritual.   I was spurred on to write this after a Tweet from Everyday Mindfulness @mindfuleveryday, below.

img_6312I chose to do the wise thing & let myself off the hook. I’m taking moments in the day to recover my peace of mind. Before getting into it, I’d have taken plenty of time to give myself a lot of taunts for not being good enough, what a waste. Anyway, a reminder to self to enjoy this day without being my own worst enemy & instead being a good friend.

“Being hard on yourself for not meditating, is only going to make you less likely to start and keep a meditation habit. 

 #mindfulness”

I’ll just leave that there. Is this your #mindfulness #happyhabit?

MS Readjustment 101

How prepared were you for the morning? I get a lot of slagging for always being ‘surprised’ by it. Some mornings I’m groaning and griping my way to wakefulness yet within minutes, my energy has sparked and I’m all set for the day. 
Preparation ensures no matter what the griping, the day will go as well as possible, because of the prep.
We grow upnourished & prepared for life by our parents, the schools we attend, the role models in our lives, the friends we have and the society we live in. Ready for college, work, relationships and all sorts of other life stuff.
 IMG_4149Credit: Emma Rogan | 2016

No one has ever prepared us for something so catastrophic to our sense of self as a diagnosis of a chronic illness. Dealing with the emotions and psychological effects as well as negotiating the world with a new viewpoint isn’t easy. As we have experienced, being diagnosed can knock a person off-centre. This is a challenge we never expected.
But we can make well-informed choices. Read, read & read some more. 
There are some excellent books and websites out there with some great information to look at. These have been written by people with MS, are all about living the life you want to live and making the most of what you have. It is really important to learn this skill as so often the loss, the ‘what might be’ is easier to focus on when our dreams have been dashed.
Firstly, getting what you put into your body sorted will make a positive difference. 
• Overcoming Multiple Sclerosis by George Jelinek is a book I delve into regularly and I follow what he recommends. There is a website- http://www.overcomingms.com as well as a Facebook page https://www.facebook.com/MultipleSclerosisManagement
• Another is by Dr. Terry Wahls- The Wahls Protocol. Her is the link to more information http://terrywahls.com/about/about-terry-wahls/
• Please also check out http://shift.ms/ the online forum for MS’ers. There is a great film here:http://www.youtube.com/watch?v=tLhutilgq8A 
Talking with other people with MS is important but it is important that it is with a positive, energy enhancing group. Some of the information can be so frightening it makes people shut down completely, go into denial and avoidance. All this means is the fear gets bigger, the stress more stressful and life is badly impacted. It might be an idea to speak to a counsellor as this rage, the WTF, uncertainty and awfulness can really get inside you.

Diagnosis, dealing with the emotions and psychological effects as well as negotiating the world with a new viewpoint isn’t easy. Some things take more time than we realise for us to understand. It gives us a hard landing to realise that we have to take action, to make choices so we can continue to live full lives.

I know it is possible to manage my life with MS, to LIVE to the fullest. For anyone diagnosed with the condition, it is about doing well, getting to a point where we are just getting on and living the life we are meant to live. You can do it; it is just a case of re-imagining and readjusting life to what you need now. And the joy of readjustment is you can always make changes.

Follow me on Twitter for MS updates and health talk @emmadragon