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

The Work, Health and Wellbeing Conference| Salford 2016

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The Work, Health and Wellbeing Conference

REGISTER FOR FREE HERE

More than 130 million days are lost to sickness absence every year in the UK

Wednesday 7th September 2016

University of Salford

 This year the University of Salford is joining forces with the International Disability Management Standards Council UK to bring you a dynamic programme that will bring together a range of key stakeholders all working to keep people happy, healthy and occupationally productive.

More than 130 million days are lost to sickness absence every year in the UK, and working age ill health has an annual cost to the economy of more than £100 billion. Unless addressed appropriately, the World Health Organisation has identified that 12 billion working days – or 50 million years of work – will be lost to depression and anxiety disorders each year between now and 2030. Hence, along with a range of government strategies to support those with ill health to return to the workplace, there is a growing focus on wellness at work, in order to improve peoples’ lives and raise the level of economic performance in industry.

 

Headline Speakers:

Rachel SuffPublic Policy Advisor, CIPD

Stephen BevanDirector, Centre for Work Effectiveness, The Work Foundation

Clare Rafferty Director, Wellbeing Associates

Paul WardWork Based Learning Manager, Grantham College

Emma RoganProject Coordinator, European MS Platform (EMSP)

Sabrina McCarronAssociate Solicitor, CFG Law

Rachel Martin Senior Lecturer in occupational therapy theory and practice, University of Salford

Join us for Work, Health and Wellbeing Conference 2016, where reputed speakers will discuss:

  • The importance of employee health and wellbeing to business success;
  • Strategic and organisational approaches for health and wellbeing;
  • The challenges of fluctuating and long term conditions in the workplace;
  • Supporting an ageing workforce;
  • Global issues for mental health and work;
  • The value of work participation in rehabilitation

 

Brain Awareness Week a.k.a. Awesome Brain Week

This is Brain Awareness Week or as I choose to call it, Awesome Brain Week.

Like your little toe, your brain isn’t something you think about (even though it is what allows you to think) regularly. Unless you are one of the many millions of Europeans and people worldwide with a brain condition.

awesomeImage from vapeaboutit.com

This week, to highlight the awesomeness of our brains (I know, I know.. but in this context the use is justified!), I’ll be posting facts, figures, images and other things here and on Twitter. Let’s have a think about how great that mass of lipids and cells in your head is and be grateful that you’re one works well enough to read and reply. I ask you to use it to raise awareness about the thousands of brain conditions that plight the lives of so many.

Starter for ten:

The brain of a newborn human contains the same amount of neurons as an adult (no matter how small minded you think your neighbour is, he/she has the same brain size as you). Although, research into neuroplasticity suggest the human brain has great capacity to repair, rebuild and grow even into late adulthood so brain sizes can vary.

What about you? Any interesting brain facts you want to share or experiences you think others should know about? Add your comment and join the conversation on Twitter @emmadragonTwitter birdie

© Emma Rogan