So your stuck in bed or at home dealing with a dehabilirating disability? Me too! For 15 years now I've been having flairs that left me housebound if not bedbound. I'll go through periods where I'm symptom free, but then I'll have years where I can't even get out of bed to use the restroom.
It's depressing place to be, to be sure. However, there's hope. We don't have to hide ourselves within our depression. We don't have to let the world forget about us. I'm on a mission to make life easier for those of us who are stuck in bed or stuck in the house.
This blog's purpose is to collect and magnify the things that we can do to make our lives better. That could be a job that you can do for bed on days that you're feeling up to it. That could look like equipment to make life easier. That could even look like awareness and support group recognition. Whatever the disability or illness you have, we can lead absolutely fulfilling lives.
Fifteen years ago I was taken to the hospital with a violent arm tremor that kept me from breathing. After a miriad of tests, they still didn't know what to do with me let alone what I had. I got worse. The left side of my body became severely weakened almost paralyzed as violent tremors rocked my body constantly. I was having non-epeleptic seizures multiple times a day. I lost the ability to read, or watch anything that moved (including movies and tv shows). It took 2 years to figure out I had Functional Neurological Disorder.
I have to tell you, living my day to day was awful. I was stuck in bed staring at my ceiling all day. Nothing to do, and no one to talk to (because most of the time I had speech paralysis.
Three years later I started to improve with the help of my doctors and my faith in my ability to be able to live my life no matter where it took me (thanks antidepressants!). Although I never fully kicked my symptoms, I did indeed improve.
Since then I've had two major flairs of my condition. The first didn't last a long time. It was at the begining of COVID. The stress of being a teacher during that time made me have to quit my job and take something that paid less, but was less stressful. It tooke more than a year to be able to work as a teacher again.
Then COVID restrictions lifted. I got a teaching job again. I was so happy! In July 2022 I actually got COVID. It triggered my condition again leaving me absolutely incopacitated. I again needed help to even shower and use the restroom.
Two weeks ago the new pills I was taking started kicking in. I still can't work, but I am much better.
I want to share my experience with you, explore new tricks, and help us all not only surivive, but thrive. That is what my mission is: to show you, you can live a better life from bed, from home, wherever you exsist.
Come with me as I lay out my experience, exploration, and exsistance