MS Quest: You’re too late/old/sick for that sort of thing

Time is pushing on. As I wander to another day at the office, is it too late? Too late to do that one thing I’ve always wanted to do or be or enjoy? Too late to do anything about it? Too old? Too stuck in my ways? Too limited? Too… MS’ey???

words-2971129_1920 The feeling of missing out, of being in the wrong place at the wrong time or the right place at the wrong time or the wrong person at the wrong time… are familiar to me. There have been times in my life when I’ve desperately wanted to be anywhereelse, to be someoneelse.

Of late, I find peace but I don’t think I have a ‘settled soul’. Not that that’s always a bad thing; it’s spurred me on to discover more about the mystery of staying well and thriving while being told I’m ill. I’ve been on a quest for peace of mind, for feeling good, for emotional joy, for being present, for serenity.

My quest has meant hours of reading nonsense- cleverly disguised as personal development/medical advice/*insert catchy phrase here* – only to throw books at a wall once I came across the author’s declaration on THE one magic pill to cure all ills. Along the way I’ve also stumbled across gems, clarity in the morass of advice, advances and chancers.

These gems are the people who tell me what works for them, experiences without promising the Earth. It is these people that encourage me to take the steps and go the way I never thought I wanted to go. But go I must. Because life never goes smoothly, does not go easy and is not a bed of roses. There are events I’d much prefer not to have experienced, things that have distorted my way of thinking and impacted who I am, where I go and what I do. So what? I’ve got stamina and I won’t give up.

MS- and the sickness and the disability and the label and the inconvenience- is one of the things I often throw against the wall. It’s INFURIATING, messes with my sense of self and pushed me down a path that I didn’t think I would be taking. But it’s here I’ve met the likes of Judy Graham, Jon Kabat Zinn, George Jelinek, Mel Robbins, Aminatou Sow, Ann Friedman, and other famous folks that have made my life richer. Despite the circumstances of our meeting, I can’t change what lead me to them even though I’ve wanted to, so badly. Today, I’ll focus on the treasure I’ve accidentally stumbled across during my quest.

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MS 11: Inside I’m Screaming

This is a shout-out to the shaken, the damaged, the torn, the afflicted, the put-upon, messed-up, tortured soul that sat in Mullingar hospital 11 years ago absolutely FULL OF FEAR.

I’d been told I had multiple sclerosis. Inside I’m screaming. Afraid of what was, what might be and what the heck do I tell my Mum & Dad? My friends? Who do I call first?? And when can I get back to work? Can I work?? What IS multiple sclerosis? How do I pronounce it?

I wanted to take a moment today, 14th May 2018, and thank all of you. There are some very special folks who’ve shared decades of my life, who’ve been my friend for almost 75% of my lifespan and who I was fortunate to meet in my formative (aka deeply addicted to hockey, drama & general teenage angst) years at Wilson’s Hospital School. My brothers and sister, who are always ready and willing to be the coolest siblings ever. The Rogan clan, the cousins and aunts and uncles and extended family.

Others I’ve not known so long, met at work, university, at an event, at a class, on a bus from UCD to Dublin City or when I lived in one of myriad of places during my itinerant years or at some LGBT festival. You’ve been kind, generous, loving and nourished my life beyond anything I could have hoped 11 years ago.

No doubt there have been really really awful days, moments when the symptoms of MS, the trauma of diagnosis, the messed up impact of chronic illness has almost consumed me. They pass. I have a renewed sense of awe for the life I have & the opportunities that abound.

As I write this I’m in a safe, warm and cosy home with a loving family. Not only is this a most perfect day, it’s a day I never thought I’d live to enjoy. Thank you everyone for being part of my life and for giving me reason to live. My MS 11 is as good a reason as any to stop, look around and celebrate another year in my life. Thank you.

 

When ACEs High is not a good thing

This is a brilliant talk from Dr. Nadine Burke Harris. She talks about The Adverse Childhood Experiences Study (ACE). Are ACEs  the greatest unaddressed public health threat facing the world?

“We understand how early exposure to adversity affects the developing bodies and brains of of children”

More than 17,000 adults took part in the original Adverse Childhood Experiences Study at Kaiser Permanente from 1995 to 1997.

“ACEs are common. Almost two-thirds of study participants reported at least one ACE, and more than one in five reported three or more ACEs.

The ACE score, a total sum of the different categories of ACEs reported by participants, is used to assess cumulative childhood stress. Study findings repeatedly reveal a graded dose-response relationship between ACEs and negative health and well-being outcomes across the life course.

ace_pyramid_lrg-medium

Image from the website of the CDC

Being exposed to trauma and toxic stress everyday in childhood messes with the brain-body stress response system. It impacts the development of so many body responses.

“When the number of ACEs increases so does the risk for the following:

  • Alcoholism and alcohol abuse
  • Chronic obstructive pulmonary disease
  • Depression
  • Fetal death
  • Health-related quality of life
  • Illicit drug use
  • Ischemic heart disease
  • Liver disease
  • Poor work performance
  • Financial stress
  • Risk for intimate partner violence”

Here’s a list of the conditions and diseases that are related to high ACEs scores. This is a topic I’ll be returning to in the coming months.

MS & Lent: A good reason to get quiet

In my school days I got involved in the Christian Union, a group of young Christians in my school. I got seriously into my Bible and all things God-dy. Every morning, before the everyone else in the school was awake and the bustle of hundreds of other children echoed through the drafty old building, I’d sit on the stairs doing Bible study.

When considering this piece on Lent, I thought back to those days, reading about the forty days and forty nights Jesus spent in the desert and trying to figure out what was it all about? To be honest, I was a little jealous that Jesus had ALL that time to himself

When I was reflecting on his story, I thought about being in a place without the company of others, without basic necessities among thorny prickly plants? For three days and night, during a trip India, myself and a friend went on camel safari in the Thar Desert. Scorching in the day the sun beat down on us and freezing in the night, we got tucked up in our sleeping mats and lay under the vast, star-filled sky. And it was a uniquely lonely sensation.

But for people with MS there are always reminders of a desolate place- I’ve never been SO alone than on the days and months after my MS diagnosis. The uncertainty, the devastation, the morbid thoughts of a life un-lived and then there was all the choices I had NO clue how to make. MS is my barren desert and that desert represents to me what life is like in the first few months and even years of life with MS. But I eventually walked out of that desert. There are still some thorny parts of me and one of them is distraction from myself.

I’m prone to sitting surrounded by books, gleefully sitting alone for hours, absorbed or turning on the radio first thing to get a dose of politics or sitting scrolling, scrolling, scrolling through my Twitter feed. Distraction and denial of what was going on in my ‘real’ life. My phone is always with me, I’m rarely uncontactable and there’s always a source of information (wanted or otherwise), close by. This is really useful for us if we want to be distracted from what really matters and I’ve been distracted from what really matters.

In my early life, I learned that Lent was a time to give things up (chocolate, sweets, my Granny’s butterfly buns!) but also a time to make some new habits like being kinder to my siblings or being more helpful. The habit of sitting in the quiet of the early morning is something I’ve returned to in recent years. The habit isn’t easy but the simple process has subtly helped me deal with issues in healthier ways. It helps me deal with vagaries of MS, the depression, the fatigue, the balance issues, the cognitive issues. There have been times when my belief system has been wrung out, left to crisp up in the pounding noise of MRI scanner or when my dignity flowed down the leg of my trousers as my damaged/very sensitive bladder emptied before I could even pretend to be near the facilities.
I protect my mornings because it is in this sacred space I connect with my inner strength and power. No matter what is going on in the day, how bad my MS is playing up, when things get too much, I can tap into that peace and strength. The morning time I spend on my own, meditating, reflecting on a piece of writing, has given me greater understanding of myself. I think this is where this Lent thing started. Someone had a great idea to get away from it all, to find peace and to listen to their inner power. For the next forty days, I’ll go with doing something every day that makes my or someone else life, a little bit better and connects me to my own inner power.

©Emma Rogan 2018

This piece was first published on the MS Ireland, ‘MS and Me’ community blog on 14th February 2018.

Altered Lives: Diagnosed with MS

This is part pf the Altered Lives campaign by the Neurological Alliance of Ireland (NAI). Here I am having a chat about what being diagnosed with meant to me.  Akin to Dorothy, it was a complete life-changing, mind-altering event. After the whirlwind, things are much better now but I learn something new about myself everyday. I’m staying interested and take it easy.

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

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!”