ME Awareness Week 2019

seeing me in reality

Well, it’s that time of year again and I’m excited for the content on social media and my gorgeous blog I have spent hours creating. It is from the 6th of May until the 12th with the 12th being the official M.E Awareness Day. I found last year really difficult to write about.
I hope you find it to be something you can connect with. Part of M.E Awareness week for me is telling my story and listening to the hundreds I read on social media and conventional media outlets. I want to highlight the challenges we face and the things that we all want and most people would think they were automatically applied when they aren’t a lot of the time.

I also want to talk about not just what has been taken from me because let’s face it, it’s a long and sad list. I was only twelve when I started this diversion in life. The person I thought I would grow to be is not the person sat here typing away in bed with the worst pain in her legs. In some ways, the person is better, more patient and aware of the diversions we have in life. Many get ill or have a disability it’s just not spoken about or in the mainstream of awareness for many.

It is a sad fact that we are still talking about recognition and respect and common decency when talking about a scary and complex and relatively unknown condition. We talk every year and some of us share weekly and yet it feels like it never gets to come to fruition. I deal with people who just don’t get it every time I go into meetings. I count myself lucky my GP is amazing and deals with it to the best of her ability. I am lucky to be heard even if it isn’t always taken in as one would have hoped. Some don’t even get someone there trying to understand what is happening to them, they are easily dismissed or forgotten because we aren’t visible. We are hidden in hospital wards and beds or sofas, we are from all backgrounds and yet we are ignored and faced with prejudice and the label of ‘lazy’ or ‘complacent.’

People can die of this condition and all of us have had scares and found the future impossible to comprehend. We have worries when we should be focused on health, not finances and being listened to or basic rights as to what happens in our ‘treatment’.

I want to keep banging the metaphorical drum for those of us who can’t shout about it because they are unwell but I’m weary in this battle. We need research, we need recognition and we need to be treated. But mostly we need to be heard and respected for the fact we live with one of the last big medical mysteries. The medical and science world’s don’t know how M.E/CFS happens, they don’t know how to treat it and diagnosis is just ruling out everything else. The prejudice we face from the wider society is defeating and deafening.

I know that changes in views, policies and protocols take time but people are dying or getting worse because we don’t know what this is and how to handle it. We need to be listened to and be taken seriously.

In the UK our government and the Scottish government had debates on M.E/CFS in January 2019 and the community went wild. It gave recognition to the fact more needed to be done, it gave us hope that soon CBT and GET might not be the only treatments offered. It promised more research funding and better understanding in general for our condition. The test of time will see if those promises will be kept.

It’s a glimmer of hope for many in the dark but talking about change isn’t enough. Talking about funding isn’t enough. Most people with M.E/CFS would like to be able to have the financial help we qualify for and a doctor who believes in their condition and the understanding of how serious and complex having ME is.

Stay tuned for some bonus blog posts this week and I’m trying to be more active on social media too. Find me on Instagram here or for Facebook here.

 

Of course this could go horribly wrong but I have the best of intentions!

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