From online support to Face to face 

The current situation for young people with MS in the early 20s or under-18, is urgent. 

We know this is a formative stage of life, I know that support post-diagnosis has the potential to impact positively or negatively, the next 50-70 years of life. When diagnosed we’re are presented with awful news. It is how we deal with it, the support we get and the expectations from those around us that will influence our choices and how great our life will be. As the good folks at ShiftMS say, MS doesn’t mean giving up on your ambitions, just reimagining how to achieve them.
Dublin MS Meetup Group

I started the group in March 2010; I wanted to connect with other people with MS, particularly those who were of similar age/life stage as I am. From day-to-day management, diet, fatigue, medication, medical professionals, relationships, coping strategies, treatment information…we talk about all of this and none of it too. Essentially, it is about meeting other people, making friends, sharing experiences and building relationships of solidarity with people who understand what we might be going through without having to explain every little thing about our MS.

Monthly Meetings

The group meets every month in the IFI Cinema in Temple Bar, Dublin, on Saturdays around noon. There’s a Meetup page for the group (http://www.meetup.com/Dublin-Multiple-Sclerosis-Group/. People sign up to it and see the details about the dates and times of Meetups, make suggestions and share information. We alternate in terms of those who host the meetup.

I’m shy! Meeter Greeter for newbies

An important aspect of the group is the Meeter Greeter- someone to meet before the general gathering. This makes it easier in terms of feeling welcome and getting to know people.

Facilitation

Usually I facilitate the group (in as much as a group of adults need) and we are very mindful of the need to ensure it’s a safe space for people to express themselves, to be heard and to be listened to. It is also a place to enjoy the banter and the company of others!

Get online and connect

Shift.ms is an online forum for people with MS and is particularly aimed at young people. I have searched and there are a number of people under 18 on the site that I would encourage young people with paediatric MS to connect with.

Connecting with other people is a great way to discover and replenish your lust of life in those early days post-diagnosis. 

© Emma Rogan 2017

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MS & Decisions: Who decides?

We never know what issues are going to come up at the Dublin MS Meetup Group. This month’s #MSCafé was no different. 

We gathered outside the IFI Temple Bar in warm sunshine and surrounded by the sounds of the city. Here people meet one another for the first time, catch up with old friends and, in the jigs & the reels, slowly begin to open up. 

Group facilitation 101: it’s a good idea to have a process to welcome first timers & greet more familiar old timers. It’s also important to provide focal-point for discussion

Facilitation is vital to help ease our fears of social interaction with strangers-  you know, the awkwardness that comes with meeting new people can be eased with good processes. 

Decision making: Healthcare & medical

Who gets to make them? What information is available? Where does the information come from? When does the decision need to be made, if ever? And HOW the heck do we actually make the choice? Benefit/risk ratio, side effects, no effects, needle phobia, hospital hatred & clinic conundrums.

The topic of the day was Treatment  Decisions and people quickly got into the tough stuff.  When you don’t trust your clinician to make appointments or follow-up, to actually get to a decision about treatment can be another 20 steps in the making. And what if the message you’re getting from the HCP is you’ll need to get worse before you’ll get a place on a clinical trial? How messed up is that? But how do we know if we heard them right? How do patients navigate the dreadful health system? 

We need witnesses, allies we trust and who will come with us on clinic visits when we need them. Someone who hears the details while you’re having an “Oh shit” or “WTF?” moment. Usually not your mother/father nor someone who’ll dominate the conversation.  Choose wisely.

We chatted tremors, ‘systemic failures’, follow-up (or not) by HCPs, having a witness at appointments (they are there to hear what you don’t & for moral support- not to play hero) and the joy of having children. We giggled at the awkward silences that come when you crack an MS joke with people who aren’t MSers *insert awkward silence/TutTut/weird reaction here*.

People are strong, people are wise, people are kind & people are…people. We meet in the Dublin MS Meetup Group to share our experience, our skills and act to bring positive change in our own lives. How do you connect with other people living with MS or do you bother? Let me know if the Meetup thing looks good to you.

Founded 7 years ago by me, Emma Rogan, the Dublin MS Meetup Group is the original & longest running MS Meetup in the world. We’re proud of who we are and what we’ve  achieved.

Check out Dublin Multiple Sclerosis Group http://meetu.ps/c/csNn/1792V/a

Copyright Emma Rogan

MS Marathon

If your fitness plan for 2017 needs a boost (esp MSers), join in this Friday & Saturday (first weekend in March). The 24-MS Marathon started in Czech Republic in 2011 now thousands of people across Europe are getting involved. You can get moving you’re own body, do what you can and support from home/get friends together in your local gym/park etc.

Stay in touch @emmadragon & share your photos. #MS24

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!