I have some hope, finally

A guest Blog by Joan - who was one of the organisers 

of the Millions Missing Protest in Dublin on the 11th May 2017.

For images of the protest see HERE

For more about the protest- including information about ME, and other guest posts, see HERE

I have some hope, finally. 

The 11th May 2017 has, I believe, given birth to something from which there is no turning back. And I say this with all the experience of a long time campaigner on a myriad of social and economic issues. But this one was different. 
This one was personal. 
This one was about the most fundamental thing needed to survive. 
This was about the life and health of my young foster son and about the thousands of others in this country who, like him, live their lives in isolation, in dark rooms in their homes, being unable to interact with family, friends and society. And all because they were unlucky enough to catch a virus from which their body has never recovered. 

May 11th 2017 - the day when M.E. patients in Ireland became visible. 
The day when their voices were heard loud and proud. The day when they and their families and friends said - no more. 
No more will we accept medical ignorance about this condition. 
No more will we accept media misrepresentation about this condition. 
No more will we tolerate the lack of attention and urgency our health services give to this condition. No more will Myalgic Encephalomyelitis be conflated with the political construct of 'chronic fatigue syndrome' or worse still just 'chronic fatigue'. 
What an insulting term to use to describe the horrors of this life stealing illness!

We planned this day down to the very last detail. 
We planned this day from our sick beds. 
We planned this day as a group of people who had never met in real life before but who all shared the same goal. We deserve better! We deserve respect, understanding, proper medical support and a health service that stays on top of what is happening worldwide in terms of developments, research and treatments. 

I have never seen so many politicians coming out to meet people as I did yesterday. Every party was represented. Party leaders came out and Ministers came out. All of them listened to us. All of them promised to help and many, many of them told us they also knew someone who had M.E. and they knew how awful the illness was. Score!

Everyone played their part yesterday. Everyone got talking to some politician or other and now it's time to pool all that knowledge and move things forward. 
We got a meeting with our Disabilities Minister yesterday in Government Buildings with follow up planned, we have a commitment for a meeting with all TDs where we can present our case formally, we have commitments from many TDs who will raise PQs on our behalf. 

And that's only the bits I know about! 
Others have similar stories and we plan to share those stories and continue the strategy.

They truly can see M.E. now.... 


Joan

From my bed to the Dail gates

Reflections by Camilla Cruise on life with M.E. and the upcoming protest in Dublin (2017) 

The protest involves the patient sending their shoes to the protest 

to represent them as they are other wise invisible and "missing "from life and too ill to attend. 

some of the shoes posted in for the
Millions Missing Event in Dublin

some of the shoes posted in for the
Millions Missing Event in Dublin

It was suggested I write a piece due to becoming involved in #millionsmissingDublin May11th protest for #mayalgicencephalomyelitis patients to get better treatment in Ireland. 

I was left a little perplexed as to where to start with such a task . When I think of my journey since becoming ill, the changes to my life, to my families lives, the struggles ,the constant pain , the heartbreak, the disappointments with medical profession and  neverending frustrations with a sick body , I am overwhelmed with emotion and fight back tears but find it extremely difficult to convey or express in words that adequately describe the devastation Myalgic Encephalomyelitis has had on my life. 

Like so many others I have been lucky enough to meet on my journey with chronic illness, I was someone who was very active and an "up and at em " person. As a single mother most of my life to 2 gorgeous healthy  children I was always on the go hitting the parks, beaches and  surrounding hills , my favourite thing was to just be outdoors and doing something going swimming, day trips, cinema, anything , I didn't sit still for very long. Much the same in my social life always on the go to a live music gig which I lived for , travelling or  dancing away in the corner of the pubs with my fantastic group of friends. 

 I am so grateful now that I was GRATEFUL in my healthy years. I was glad to be alive and healthy and appreciated all that I had in my life every single second for I knew there was too many others around me that weren't so lucky and someday  life would happen to my own family too. Still I hold on to that belief in my heart everyday, despite chronic illness, I am one of the lucky ones.

 I am grateful for so many little things in my life. There is beauty everywhere, positivity to be found everyday . Now it might just be that I managed to get from the bed to the couch on a day, it might be that I can see the sun shining and the sea from the window in my room when stuck in bed , it might be listening to the 2  kids slagging and laughing downstairs when I'm in bed with a migraine again or it might be my lovely friends sending me over a care package or my Angel of a Mum arriving to do some shopping  and housework to help. Forever grateful and thankful for all that I have. 

This is the person that makes me not able to sit just  back and be ill, not able to wait for things to change by themselves in this country and accept the non services from the HSE for ME patients. I am determined. Yes I will and have (as many of the fantastic group of volunteers have ) suffered in my health due to the  physical and mental energy organising a protest takes. 

But to me there is no other option. If we all band together and do  but a small part whether it be posting on social media, have a friend represent us at the dail in their lunch hour OR  send an email to our TDs we can achieve so much. Horrendous as it is that such a sick community has to fight like this with our precious health the other option of doing nothing is worse for us. 

I have been bowled over by the beautiful messages arriving to me everyday this week of gratitude for what WE are doing. We have a wonderful group helping in many  different ways with organization.
Thank you so much.
Its been overwhelming seeing the shoes arrive . Too many lives lost to this mysterious disease , parents lives lost as they once knew it as they are now full time carers to children and adult children , children not able to even attend school and suffering horribly , college students having their wings clipped by ME just as they are about to embark on their adventures of the world, women in their 30s robbed of  a chance of marriage or children , active sports people bedridden in darkrooms. 

Moved to tears many times, this is why we will be at Dail Eireann May 11th insisting Simon Harris and HSE engage with us for change and better services. We deserve better. We are going to get it. It may be a long road but we are  taking the first steps . 

Further details and other stories:

• please visit the Millions Missing Page 

Ciara Chapman 'My Chronic Pain Diary'

 'Entry #54 I've recently started meditation' 

Ciara Chapman

Apologies for not turning up on my blog yesterday, (am recovering from small surgery, which turned out to be much bigger than the surgeons had expected...). 

However two wonderfully creative ladies, and Little Wings blog readers had brilliantly timed thoughts about living with illness. I shared Therese Doherty's thoughts on acceptance on my Facebook page yesterday, and the following came from Ciara Chapman, the latest entry of her Chronic Pain Diary

I wish you well for today, and I hand over the reigns to Ciara,  my guest blogger for today:

'Entry #54 I've recently started meditation'
© Ciara Chapman 2017

"My name is Ciara Chapman and I am an illustrator based in Cork city, Ireland. 
I studied Fine Art Printmaking (1999-2002) and Graphic Design (2004-2005) in college so art has always been a big part of my life. 
Things changed for me in a major way in April 2015 when my chronic pain began in the form of long term sciatica and has continued ever since. I am as yet awaiting diagnosis for my medical issues which affect my left side from the neck down. I don't have a clear cut diagnosis so I'm going through a process of elimination to determine the problem. 

I was finding the constant waiting as well as the physiotherapy and the general isolation difficult to cope with so in January 2016 I began illustrating my experiences in the form of a diary titled 'My Chronic Pain Diary '. 
This diary is a combination of the positive and negative aspects of my new way of living. 

I have been following Corinas blog for some time now and have found it such a wonderful resource that has helped me to accept, manage and appreciate my new normal. It was through reading Corina's blog that I began to understand the befits of meditation and so I was recently inspired to include it in my daily routine. This illustration sums up my own experience of starting to meditate. 
Thank you so much Corina for allowing me to contribute to your amazing blog, please keep writing so that we can keep reading. "

Links and further reading

• Ciara Chapman's Chronic Pain Diary on Facebook 

Inside You There Are Worlds

Today a guest blog by Therese Doherty

Through cyberspace I came across the work and writing by Therese Doherty. Our thoughts and experiences and views of the world: the world of illness, creativity, nature and writing are following in a similar path. Although worlds apart geographically. South East Ireland for me and the Blue Mountains north West of Sydney for Therese. 

Enjoy these wonderful wise words.

Inside You There Are Worlds 

The flight of the imagination. The inner landscapes which have no limit. The seasons of life.

These things are liberating, wonder-inducing, life-enhancing.

It took me a long time to make these discoveries, however. Living with CFS from a young age disturbed my development, such that I have been embarrassingly slow to learn many things. Illness clouded my mind and made me withdraw from life—a necessity, perhaps, until I was ready to re-emerge.

But, what I have found is that it is never too late to begin again. At any time you can start to rewrite your life story, and change the details, so that you come back out into the light, the heroine or hero of your own tale, rather than remaining in the shadows.

The most powerful way to rewrite your life story is, literally, to write it. Ask yourself: Who were you before you got sick? Who did you become afterwards, willingly or otherwise? Who would you prefer to be now? Write it down, draw pictures, record your voice—make a document that is part-memory, part-dream.

I wrote my life story, and it changed me. It helped me to make sense of many things, and it was as though I grew up, put away bad habits and negative beliefs, and got closer to who I am meant to be.  I began to understand myself better, which has made me kinder and gentler with myself. This is not a cure, by any means, but it is a necessary step on the way to healing.

Writing can be therapeutic. You can rant and rave as much as you like, and because it is private, no one will ever know. But at least your angers and frustrations and negativities are out on the page or computer screen, instead of festering inside you. This is step one.

Step two is to take things further, to turn negative thoughts around. This requires believing in the power of words. So, if you find yourself writing (or even thinking) about being weak or hopeless, or any of the other thoughts and feelings that can come to us when we are not feeling well, then start to reverse them. You are not weak, you are strong. You are not hopeless, you are full of possibility. Write them in the present tense: ‘I am strong’ (rather than ‘I will be strong’). Try it. You might be surprised just how much effect writing, or saying, such things can have on how you feel.

Step three is just to keep going. Keep writing. It will help. Just give it time. If you keep up with it long enough you may find you get to the point where stories emerge, or poems; at the very least, you will come across solutions to problems, or wise insights that bring you to a better understanding of yourself and the world. This is when you will learn, as I did, that there are worlds inside you.

I mean this. I really do.

Scientists now say that our bodies, like everything else on earth, contain atoms from the beginning of time and the origins of our universe. The elements that form our physical makeup are the same ones that constitute the earth as a living body—seawater and volcanic ash, circulating air and the spark of life that is fire—and they rank among the most powerful agents for healing … (Kat Duff, The Alchemy of Illness, 1993, p. 25)

Our bodies and minds—which are not separate entities, but intertwined—contain their own landscapes, ecologies, seasons and wild creatures—and their own wisdom, often unbeknownst to us. We are as old as the universe. We are part tree, part mountain, part cloud, part bird, part star—and all of these elemental parts can help to heal us.

To discover this is truly liberating. For when I am not well, and unable to spend as much time outside as I would like, to connect with the more-than-human world, I can at least journey inwards to connect with the places and beings within. My inner worlds are nothing less than an extension of the outer world. That we are made of the same stuff as the rest of the universe, those same ancient atoms, should make the connection obvious. We are all seperate threads woven into the universe’s tapestry, connected to everything else, and by recognising this it is possible to tap into new sources of inspiration, creativity and wisdom. It is all right inside us.

We can learn to fly on the wings of the imagination. We can go exploring. We can learn to better understand our own inner seasons and rhythms, and then make the most of them in the outer world.

All of this can come from writing, from the power and magic of words. And so it is never too late to begin. Find a notebook, put some loose paper in a folder, or open a new document on your computer. Label the top of the page with today’s date, and write.

Keep writing.

Just remember: Everything you need is already inside you.

Therese Doherty

links and further reading

• Artworks by Therese Doherty
• Therese's Blog Offerings from the Wellspring
• Another Writing story on this blog
• Post with also had quote by Kat Duff