Sunday, May 7, 2017

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. 

a pair of ballet shoes posted in for the  Millions Missing Event in Dublin
some of the shoes posted in for the
Millions Missing Event in Dublin
a pair of runners 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:

1 comment:

Anonymous said...

Just reading Camilla's post now, a year later, very well written piece and it is so true, its nigh on impossible to describe or convey the magnitude of M.E, how it changes everything, turns your world upside down. I am too weak to stand at the school gates to collect my kids, I must sit in my car. Chatting and standing wipe me out and I end up in a crash in bed again for hours. M.E punishes us for trying to live. It is a cruel and devastating disease.