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.
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.
May is ME Awareness Month and once again I am participating in the virtual campaigns online to help raise awareness of this life-destroying illness called Myalgic Encephalomyelitis. Today I'm sharing my story. How did I become so terribly ill and housebound? When did it happen? And how long did I have to wait for a diagnosis? Here's my ME story:
Today I am sharing a guest post by Shona Smith. I must admit, I have mixed feelings about this topic, but it is an important issue and needs to be addressed. It is not just a few isolated cases, pastoral care in the church is something that is in desperate need of an overhaul. This shouldn't be an issue, but sadly it is and Shona is working hard to find solutions.
I hope you do not relate to our shared experience, but if you do or know of somebody who might, please participate in the surveys and help us move towards better pastoral care in the church.
So many of us with chronic illness were leading such busy active lives full of people and places and we were church members, regularly enjoying spending time and energy with like minded friends and often serving and caring for each other in the crises of life. BUT when we have been absent for a while it seems like we are easily forgotten. Do you recognise your experience in the musings below?