Call for Change: Fibromyalgia and Myalgic Encephalomyelitis (M.E)

Today is a hugely significant day for all us us living with M.E. and/or Fibromyalgia in Ireland.

A small group of amazing advocates for both these illnesses have organised an Awareness and Educational event at  Leinster House (our Government buildings):

Call for Change: Fibromyalgia and Myalgic Encephalomyelitis (M.E.)

This is an abstract of the letter that went out to all our politicians:

...

In Ireland Fibromyalgia is estimated to affect between 90,000 and 180,000 people while Myalgic Encephaloymelitis (M.E.) affects approx. 12,000 to 14,000 with no clear pathway to care, or the necessary supports to enable patients to live independently in the community.  There is no education about M.E. among medical professionals and no specialist facilities or treatments. This large cohort of patients and voters are left in the dark with nowhere to turn, abandoned by the HSE. 

These patients are at a monumental disadvantage by having a chronic illness that falls between the cracks of HSE knowledge and services that require those with M.E. to negotiate an additional hurdle to the usual challenges faced by those living with a disability applying for essential supports, as we wait for the UNCRPD to be ratified.

...

I am honoured to be part of this group of 6 women who have worked way beyond their own levels of wellbeing in order to make this happen. 

We are all ill. 

We have not met in person. 

All the communication was done via Facebook's messenger.

Presentations were written, shared, checked, amended.

Flyers were designed, rewritten, printed.

Badges created.

MEAI logo designed, email address set up.

All relevent information copied, printed and collated.

A huge amount of work, especially when energy is at a premium.

I won't be at the meeting myself today. I am certainly there is spirit!

And MEme is representing me.

I will profile some of the advocates here at an other time. And will update any information when I have it.

For now, please, please tune your focus onto the event of today. 

And channel your energies to the speakers. 

They need it. 

Use your psychic power to bring your attention to the politicians, 

and make sure they are tuned in. 

That they will listen.

And ACT.

We need our voiced heard.

Changes need to be made.

We deserve a health system which supports us.

Which listens to us.

Which does not disregard us

...

Update: Video link to the talks

 ME Advocates Ireland (MEAI) 

Badge for the 'Call for Change: Fibromyalgia
and Myalgic Encephalomyelitis (M.E)' meeting today

 FibroIreland  (Fibro Ireland)

Badge for the 'Call for Change: Fibromyalgia
and Myalgic Encephalomyelitis (M.E)' meeting today

Puppetry & Disability. The contradictions of life with M.E.

Dear readers

Sorry for the long absence from writing, from showing up on this blog. 

Time just passed me by. So did the Christmas and New Years celebrations. 

Apologies for the very late wishes for a healthy, fun, contented, creative, and peaceful year ahead. 

Wishing you all that is good!

me, with experimental puppet 'Poilin'
photo by Claire Egan Boyd

Most of the time I write, here, or more likely in my private notebook when there is a lot to process. To figure out. To get my head around. At times I avoid the pen and paper altogether. I go into a void, go into hibernation. Or spend time figuring 'things' out through the more tactile ways of handling clay, or just by looking at the birds, nature, the fire or candles.

Living with M.E. never ceases to amaze me how much of an impact it has on my life. And for a lot of my readers, or their own lives too. I realize I am almost in tears writing this... Almost. As I also see the opportunities that it has given me. 

For the past few months I have spend most of the time at home. Luckily I am content to be in my own environment. The cabin fever did not hit me, as I had plenty of kind friends who visited me, and at times took me out for a short spell into the world beyond. Spent time with students to share my love of 'all things puppet', and stayed in touch with many via social media. 

Grateful to all! Thank you.

During this time of valued (almost) hibernation, I was handed brilliant, amazing opportunities to be part of the real world in months to come.

The absolute, complete contradictions were and are, not lost on me.

Back in November, I received an invitation to speak at the UK Nottingham Trent University on my work on puppetry and disability, during the Nottingham Puppet Festival. 

"Sure! Love to!" 

I was so excited that I nearly packed my bag that very moment. The real moment I was actually recovering on the couch from an hour on my scooter doing some shopping. 

And yet. And yet, I could see, and feel, the absolute possibility of this. That this is a perfect and logical next step in my life lived with illness/disability. My almost 20 year adventure has brought me to this, and I was not going to say no!

When I talked with Sean Myett, I started with "I do come with baggage. I can't travel alone, and I need to travel two days before the talk, and need to stay at least a day after."

"No problem!" 

I figured there was no point in talking in detail about this opportunity and then tell them my needs.

As it happened, this was only the start of it.

Since that day in November, I have also been invited as one of the Keynote speaker at the Broken Puppet 2: A Symposium on Puppetry and Disability Performance in Bath (UK) A  2-day symposium exploring the ways puppetry and disability intersect to produce innovative art forms.

As they are three weeks apart, I looked at the possibility of staying in the UK, and making this a research opportunity. To meet with many other puppeteers. To share experienced with others in the field of puppetry and disability. To visit Puppet Place in Bristol, as Rachel Mc Nally called it, for a knowledge and skills exchange.  Bath Spa University Bath Spa University offered me a guest lecture for their Arts and Social Change Research Group, as well as conducting a workshop with Level 5 Drama undergraduates.

I can not say that I don't worry about this incredible beautiful adventure ahead of me. 

Daily, my mind goes from 'absolutely!', to 'what am I thinking?'.

But I know it is right. 

I know I can do it. With meticulous planning, and having support with me throughout these almost 4 weeks.

How lucky and grateful I am to be invited by these individuals and organisations. To be welcomed into their world. To be taken out of my creative solitude and be among people who speak my other language. The language of puppetry. And filtering in my two decades of life with illness/disability.  To share my creative journey. To higlight the challenges of living with M.E. To bring my previous experience as nurse and social care worker into the package. To share my new puppet designs which are more suited to my ability, not disability.

Life can be strangely beautiful, if not totally confusing!

I know when something is right. My body tells me. My legs tingle.

Also I know when all is well, is when all practical considerations are falling into place. With help, my accessible accommodation has been booked, so are flights and trains. Friends Jane and Marga are spending time with me to 'get me fed, watered, and around the place'. I only have few more support days to fill. Even (most) hotels were helpful in their communications with me. I have been brought shopping to add to my wardrobe. I am thinking and planning ahead, to make this dream come true.

It will. 

Thank you ALL who are making this possible,

and for the support I have alread received. 

(... legs are tingling as I wrote these last few words... )

If you like to support me in this adventure, please buy this pack of ten bookmarks of the Life Outside the Box puppet project, with quotes from their makers. €10 including postage. Every little bit helps! Thank you.

Of course, any purchase from my webshop, will also goes toward my UK - Puppet- trip.