August 8 is Severe M.E. Awareness Day. A day to give a voice to the millions of people around the world who are living in isolation and torment due to the harsh effects of Myalgic Encephalomyelitis.
25% of people with M.E. are housebound or bedridden. The most severe living in darkness and silence for years... decades even. Neglected, misunderstood, vulnerable and severely disabled, yet they carry on fighting, waiting, hoping. Moment by moment. One day their breakthrough will come. One day they will be believed and helped.
This day is for them, we speak for them, we shine a light into that darkness and show the world what Severe M.E. is really like.
I'm so honoured and grateful to be nominated once again for the WEGO Health Awards. Last year I was nominated for the Best In Show: Blog category, this year it's for the Best In Show: Facebook category for all my ME/CFS advocacy.
Being an advocate is hard work, especially when you have a severe chronic illness like Myalgic Encephalomyelitis. Patients are putting their own health on the line during advocacy campaigns, pushing their limits, trying to be consistent, to be heard, to be seen. They often pay for months afterwards in the form of deterioration and much pain.
Of course we do not raise awareness for personal recognition, but for the good of the community as a whole. Being recognised is still a great joy and reward. It lets patient leaders and advocates know that their efforts were seen and appreciated, especially if they have been isolated by their worsened condition in the aftermath of a busy awareness campaign. Things like this can lighten the load and lift our spirits.
Look at that beautiful Lily! Everyday there seems to be something new in the garden. It's constantly changing. I try to take a walk through the house daily, so I can look out the windows and see the different parts of our garden, it doesn't always happen, but it's a goal. And I've been careful to stay out of direct sunlight, shading my eyes better this week, after my sun-induced crash recently.
I've spent much of this week in the dark after some unforseen circumstances at the end of last week caused a flare. Ma brought some beautiful flowers in while I was not doing so well. Having fresh flowers from our own garden in my room is such a treat, especially when I can't get out of the house regularly. I did however finally get out into the garden later in the week. So much colour, such a joy!
I'm Brittany. I have suffered with ME since September 2013. It started 2 weeks before my 19th birthday. I was a University student studying psychology and linguistics, working a part time job at a restaurant and had a booming social life.
One morning I woke up and felt that something was very wrong, I blamed it on exhaustion and not taking care of myself... I thought it would go away in a day or two, 6 years later it’s still here.
In this new series I will be sharing stories from our beautifully resilient ME community. These chronic illness warriors are not only battling crippling symptoms everyday as they adjust to life with Myalgic Encephalomyelitis, but are also finding ways to continue dreaming, creating beauty and supporting each other, despite their debilitating illness. I hope their stories will help you better understand this life-altering condition, raise awareness and eliminate the stigma that still surrounds ME.
I started becoming ill with multiple infections in 2014 and no one knew what was causing it. An ENT told me I’d have to just live with the symptoms. Then in 2015 I had a head injury and it all spiralled downwards from there.