Sustainability: Food choices

This week I’m talking delicious jellies, chocolate and the glorious wagon to Sugar Rush. Seems like the start of the nutritional strategy and New Year isn’t going all that well…

I was busy chomping chocolate and forgetting my routine. To all intents and purposes, I’ve fallen off the wagon. The cold weather has been my perfectly reasonable excuse for increasing my sugar intake- delicious warm coffee with a jolt to keep me perky for the start of the day. But that’s all it is, a shitty excuse for making bad choices.


I’ve a serious penchant for jellies and M&S do a wonderful vegetarian version. Veggie Percy, Veggie Caterpillars and all sorts of animal-shaped sugariness. However, just because there aren’t ingredients from animal hooves, doesn’t mean the sugar isn’t packed into every bite. And how does it happen that I succumb to temptations of the ickiness? Here goes…  After work there’s the rush, public transport (totally unreliable Dublin Bus and Irish Rail) picking up Little One from the creche, the commute to home, dinner… let’s just say there are time when I indulge. Before I know it, I’ve opened a packet of Percys, eating a handful of snakes and my blood has turned to a sticky toxic mess.

This is okay- my body doesn’t let me forget I’ve messed up. I get a morning-after experience from it (yes too much sugar is hell the next day) and it feels as though my mind is soaked in gunge, taking longer to process the basics as well as being muddled. Now, we all know my MS brain doesn’t need anymore hurdles. For this week, this start of Spring, I’m back on the veg, the nuts, the water and I’ve rededicated myself to putting the better choices in terms of food and leave the last of the Colins back in my pantry. Better in the bin but I’m just not ready….

Do you have any dietary habits that you’re finding hard to crush? Let me know what’s going on for you and  together, we can keep the Colins, whatever form they take, in the back of the pantry and away from our bodies. Comment, Tweet  @emmadragon and make the best choices you can for now.

Check out the Overcoming MS Recovery Programme and the book by George Jelinek- a great resource for people newly diagnosed with MS, the oldies or for anyone with a loved one with the condition.

Money Health 

Firstly, I am not a financial advisor and nothing that is contained in this piece is anything other than my own experiences and understanding of my situation.

I used to think of money as a commodity, something I do or don’t have. Money is the reward for efforts at work and gets used for the things we need and want. In this world, it is often given credit for having a life of its own with claims of ‘ it slips through my fingers’, ‘it goes out faster than it comes in’ and ‘…sure I can’t keep a penny!’ These phrases show how easily we detach- money is seen as completely separate to the person. I think we need to look at money differently and consider that I have a relationship with money. And as with any relationship there are things that we do consciously and unconsciously get us the results we see – whether we want them or not!

Chatting with friends, we’ve asked ourselves why it is we’ve had the same relationship experiences with different partners? It’s because we keep doing the same things time and time again; the lover might change but our behaviours remain constant and we don’t change. So it is with money. Where we come from, our family of origin and all the beliefs and values we grew up with influence our current relationship with money. What do I really think about money? Is it a figure in my mind that I fleetingly consider at payday not thinking of it until there’s very little in my bank account? Saver or a spender? Am I a little blasé about it? Am I envious of people who are ‘good with money’, have disdain for wealthy people? Believe wealth to equal something corrupt? Do I put the same effort into it as I would a long-term, valuable friendship?  

Pause and consider how you feel about talking about money? It is not something we ‘do’ in Ireland- for many it’s vulgar or too personal (which reinforces the theory that money is more than a commodity) but this also prevents us getting rid of the taboo around the issue. Most importantly, this avoidance prevents us talking with our partner, close friend or family members about it. And talking about it is a really useful way to gain greater understanding of our relationship with it and if we need, to get help.

Once we understand the factors in our own personal relationship with money we can begin to see the behaviour patterns that give rise to the financial circumstances we’re in. And our relationship with money relates to it at a number of points – earning it, receiving it, retaining it, growing it and spending it. At any of these contacts points we are affected by the relationship we have with money.

So what has this got to do with being diagnosed with MS, my biggest life-changing event? Doesn’t this money talk apply to everyone? Yes it does. But while financial health and physical and mental health are not interdependent they can be strongly correlated. Having MS can affect our ability to earn. Not earning can cause a financial crisis and a financial crisis can affect our peace of mind causing great stress and emotional wobbles. And these can then go on to create a cycle of cause and effect from which we can’t see a way out. So, without understanding our relationship with money it can be difficult to get to grips with being able to make real change when we go through challenges we didn’t see coming. And money won’t solve everything but it does allow for choice and security- things that are which are fundamental to progressing just that bit more easily. Circumstances change, dreams don’t. When life gets in between us and our dreams it’s not time to stop. It’s time to feel, plan, hope and most importantly, act. Your money is a great place to start.
Join Emma on Twitter @emmadragon 

“It’s not me, it’s you. We just can’t seem to spend enough time together. You always seem to be with other people, you run away from me before I get to know you and when I need you, I have to work very hard to find you. Then you’re gone again!” 

 

How Do We Find the Lightness of Life on Dark Winter Days?

The wintry evenings have me a little out of sorts. Last week the change of the clocks caused great difficulties, even though it was just one hour! This is a blog first published on MS Ireland’s MS&Me blog; written by people with MS for people with MS.

As we rush headlong into winter, today I remind myself to look for ways to get though the season and maybe even make the darker days, if not brighter,  at least more manageable.

This dry spell we’ve had has transformed the green trees into a blaze of reds, oranges & unexpected brightened. When the sun is out, the days are long and the nights short, my health always seems much better. The colourful, crunchy leaves & walks in the woods with sunshine have made the change to the darker days easier to cope with. Something about the light causes even the bad days seem not so bad.

But what happens when the bad day is on a wet miserable winter day? The clock change has really knocked me off balance & I’m struggling. This week I’ve been up in the dark, commuting in an eerie half-light to spend a long day in the artificially illuminated office before going home at dusk.

It is the same every year only now I’m learning to focus on ‘just for now’ and not let the outer situation -weather- overly influence my emotions and overtake my reality. My supports comes in many guises but are all nuggets of joy – a reading in the morning before day really starts, a coffee on my way to work and meeting up with friends during the week. I prepare more ‘hearty’ meals, eat more soup, and make sure I’m keeping my Vitamin D levels topped up! One of my colleagues uses a ‘light box’ that influences Vitamin D as well as better mood- so I might invest in one myself.

Some MS symptoms come, some go & some stay to disrupt, disable & painfully remind us of our mortality. We have to be thinking about how we get to places, our energy & all sorts of other thing we never imagined dealing with at our age. Who knew incontinence/uncontrollable laughter/wobbles would be a feature of a young woman’s life? Despite it all, we stay ourselves. Its not the large gestures nor the big events that keep people going and that build reliance. Ordinary things like cups of tea in bed, favourite newspaper or magazine, time with family or being organised to avoid stressful situations (online Christmas shopping anyone?).

As the days shorten even more may we have the strength to change what we can, leave alone what we can’t and remind ourselves that however things are, good or bad, this too shall pass.

Join me on Twitter for more chat @emmadragon

 

What Happens Now?

Post- diagnosis II

Nothing. By ‘nothing’ I mean everything will change as this unexpected guest comes into your life yet you’ll remain the same. There will be lots going on and life will continue but it’ll be different. There may not be any strike of lightning nor a kairos moment. For some there will be a gentle shift or a massive upheaval. As your family and friends gather around you, (or not) there’s a good chance you’ll be swept up in a numbing tide of non-emotions.

There may be an army of supporters coming around. Or you won’t tell anyone because you’re trying to figure it out for yourself (this I’ll post about later). People are fundamentally well-meaning as they tell you about people they know who have “had MS for years and they’re doing brilliantly” or the catastrophic comments that can’t be described as well meaning. “A wheelchair isn’t the worst thing” or “you’re not going to die from it” or some other really innane  phrase that’ll make you want to SCREAM. They’re just crappy words, those phrases people feel compelled to use when they’re feeling awkward.

That’s where the ‘shit-eating’ grin comes in handy. Somewhere, even in the most unappealing comment, there might be kindness or something useful. Just make sure nothing is wasted, especially your patience!

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

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