Bed Life and Beyond

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.

I have a teenage child who lives with her dad. She stays with me one weekend a month and half each holiday. She’s my happiness.

I live mostly in bed, and have done so since April 17, 2018 when I was discharged from hospital and went home to bed.

I’ve been diagnosed with Functional Neurological Disorder. I also have trauma based disorders like Complex Post Traumatic Stress Disorder from extensive childhood trauma I experienced. With Functional Neurological Disorder (FND), my most obvious symptoms are paralysis and severe limb weakness. I also get slurred speech, difficulty swallowing, cognitive difficulties, and severe fatigue. These are somewhat episodic, getting worse when I’m overloaded with stress or loud sounds (sometimes even talking hurts my skin and ears), or when I’m tired, or when people ask me a lot of questions. But I’ve always got a baseline of functioning now of not being able to walk at all, and of significant fatigue.

These days I lay in bed all the time unless I get into my manual wheelchair to take myself to the bathroom to use the toilet and wash my hands, then I feed my cat on my way there or my way back to bed while I’m up. When I’m doing better I can transfer into the motorised wheelchair and can go out in wheelchair taxis and out to shopping centres which are wheelchair accessible, or for walks in that wheelchair, with other people.

I hope in this blog to let people living in bed for any length of time, know you aren’t alone, and to talk openly about what exactly life for me is like, in bed like this. I hope to talk about getting out of bed too when I’m doing better.

Sometimes I feel as isolated as an astronaut in space. If you feel that way too, you might relate to some of what I wrote about here.

Image courtesy of Pinterest.