“My unchanging view – 8 years in bed”

By Jane

About:

14 years – of regular visits to the doctor to finally get a diagnosis and that diagnosis was ME/CFS – during that time I gradually became more and more sick, as not knowing what was wrong,I didn’t know that dramatically reducing any activity was the only thing to help manage this disease.

8 years – When I was diagnosed I had no idea that this disease could be so debilitating it would leave me bedbound 24/7 every single day of the year – for over 6 years – and most of the 2 years before that. I am still too sick to leave my bedroom.

Simple minor everyday things – that most of us take for granted – simply eating in bed or talking for ten minutes, can trigger intense severe symptoms that leave me struggling to even sit up in my bed.

Isolated and Dependent – I can’t leave my bedroom, or talk to family or carers who come in (for more than 2-3 minutes), because I am so unwell. The disease forces me to be extremely isolated, against my every wish not to be. I am dependent on others for my care.

“Imagine the worst flu you’ve ever had and it never goes away” Linda Tannenbaum – CEO and Founder – Open Medicine Foundation: ME/CFS research centre