Bed Life and Beyond

Reducing things which overload my brain definitely helps my Functional Neurological Disorder (FND). The things I’ve worked out which overload my brain are: stress; physical and mental tiredness; being asked lots of questions in a row, especially being asked verbally; repetitive movement of limbs especially (physio 3x caused almost immediate paralysis which I’m still dealing…

People will be reading this blog for all different reasons. My initial aims were to reach out to others also living predominantly in bed to help them know they aren’t alone, and to help those with no experience of this develop some insight of what it’s like. I’ve realised there are a lot more things…

Functional Neurological Disorder (FND) is complex and poorly understood, even among most doctors. There’s no quick fix for it. Sometimes a multidisciplinary team and rehab can be beneficial. Routine medical testing is usually normal, though there are particular signs of FND which experts look for to help confirm the diagnosis. Symptoms can include limb weakness,…

Support workers come to my home every day, sometimes twice a day, depending on my level of mobility, to help me with my functioning. They’re essential to keep me alive. They’re by far the main people I ever see in real life. It’s taken years to build up our team of support workers to where…

So it’s after 11pm now. I’m still wide awake. I take medication to help me sleep at night. Sometimes it helps. Sometimes it doesn’t. Sometimes it helps me sleep briefly then I’m wide awake again for the rest of the night. Due to my childhood trauma I sleep easier during daylight. I like the silence…

It’s 7:30pm and I’ve been thinking for a while about starting a blog to share my journey of what it’s like living how I do, so I’ve jumped straight in this evening and I’m giving it a go. I’m 47 years old. I’m young at heart. I used to teach art and I’m an artist.…