At times heartbreaking, overwhelming, humbling, my husband and I made it through, but not without a lot of tears. Tears for the years we ourselves had lost to this cruel illness, and tears of frustration and fury at how ME Patients continue to be mistreated, ignored, patronised, disbelieved is shameful, shocking and scandalous.
We met so many mothers, fathers, sisters, brothers, husbands, wives, daughters, sons, friends who were there, representing their loved ones, trapped at home, in pain, many unable to talk, walk or even feed themselves, seemingly invisible to those Medical Professionals whose duty it is to care for them.
But the fight and determination of all those there on May 12th was palpable. Our movement is growing. And I firmly believe that change is a coming, largely thanks to Jen Brea for her film Unrest, and Ron Davis for his quest for answers.
But many others in our community are doing whatever they can to raise awareness too, one of whom I heard about in Manchester: Jamie Conner. (jamieconner.co.uk)
I was passed a poem written by Jamie, and once more, I was in tears. Entitled 'A letter to My Friends & Family - About ME' it is a honest and heartfelt message that I think should be shouted from the rooftops. Some of it might not relate directly to Very Severe ME Patients, but I still think it is a wonderful message that many ME Patients could share with their loved ones to help them understand what they are going through.
So here it is, in its full glory. Plus a video link, if that is easier for you.
https://youtu.be/hDJcJ3MbY28
A letter to My Friends and Family - About ME
Dear Friends and Family,
I guess we've lost touch.
It's not because I don't want you in my life anymore. It's not because I've given up on our friendship.
I'm just struggling.
I can't go out much now. I'm weak and in pain most of the time.
Some days are better than others, but even on a rare 'good' day, I have to pace myself. A couple of hours out in the supermarket or visiting family means pain, exhaustion and usually a crippling migraine later.
Along with the pain and fatigue, I am also affected by heightened senses. So bright lights, loud noises and crowded places have a huge negative impact on me.
Brain fog makes me feel confused and disorientated. I have to really concentrate to follow conversations.
I sometimes stutter and can't form a sentence. I struggle to find the right words. This is one of the reasons I don't call you.
The other, is that my anxiety has reached a level where just the thought of talking on the phone makes me feel physically sick and anxious.
I also don't want to talk about how my life has changed. I don't want to explain over and over that I can't do most things anymore. I don't want to have to explain this illness. I don't want to try to convince you that I'm ill because 'I don't look ill'. I don't want to go through a list of pills or home remedies that you think will help. Believe me I've tried everything.
I see pictures of you all, my friends and family, out having fun, or busy working and living your lives. But I'm left behind. I don't interest you anymore. I can't go out and have fun, so therefore, I can't be part of your life.
I'm now one of the forgotten ones. One of the #MillionsMissing.
That's fine, I do understand. Just know that I'm still here.
Watching you live your lives. Cheering you on when you're doing well. Feeling for you when you're going through something hard. Laughing at your antics when you're being your usual crazy self.
I'm still here and I'm still your friend.
Keep laughing and keep living and I'll catch up when I can, because I know I will beat this Myalgic Encephalomyelits - this ME.
I will beat it....
One day.
www.jamieconner.co.uk
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