I wanted to get my story out there. Not many people even know what Stiff Person Syndrome is, not many doctors or nurses even know what Stiff Person Syndrome is. So, I wrote a book.
This is a very personal book. Here is a list of the chapters:
Prologue
The Hurting Heart
How It All Began
Going Home
A New Diagnosis
IVIG
My Personal Life and Getting Married
What My Version of Stiff Person Is Life
A Day in the Life With Stiff Person Syndrome
What is Stiff Person Syndrome
How I cope with Stiff Person Syndrome
My Lowest Day
What Have I Achieved Since Getting Sick?
Diary – Before and After IVIG
Covid 19 And Stiff Person Syndrome
Future Thoughts and Feelings
Driving
Chronically Ill Forever
The Problems the Chronically Ill Face
But At Least You Don’t Have Cancer
If You Know Someone with a Chronic Illnes
Is It Any Different If You Are Famous: My Thoughts on Celine
Dion
My Personal Story
Although I spend a lot of time explaining what Stiff Person Syndrome is, this is my personal story. Not everyone with SPS will have the same experiences or symptoms. I think after having the condition for eight years I am well experienced in talking about this rare condition. It’s not the most riveting of stories, it is mostly autobiographical. But, my story is very unique and if you want to know more about what my life is like with this condition then you may find it interesting.
I do talk a little about my background and family, but I don’t want to feature them very much, they are in the background. I have five children that still live me despite only one of them being a child. I have an ex who caused a lot of issues in writing this book because when I started it we were still together and now we are not. The editing of this was a real pain, so forgive me if I’ve made errors.
My experience of writing this book was both cathartic as it helped me to let people know what it’s really like. But it was also very demanding and to be honest, I’m sick to death of reading it through.
I have self published the book and even with spell and grammar checking it’s been a tough slog. There are some terms that are just not accepted but necessary. I do think writing fiction would be easier.
Where Can You get my Book?
It’s available on Amazon in most Countries. You can get it free if on kindle if you have Amazon Kindle Unlimited. You can also pay for it on kindle or get a paperback copy. It’s not a massive read, the paperback is just 172 pages. I’m not looking to make a lot of money from this book, but I do wish to get my story out there and hopefully raise some more awareness.
Here’s the book cover:
It’s a generic cover that didn’t take much work. I spent a whole day designing my own cover only to find it wouldn’t fit. I spent hours formatting the paperback edition and when I received my author’s copy I cried because it was all wrong. Fingers tightly crossed that it’s better now. This has been an arduous process, I guess prolific writers get all this hard work done for them by other people. *sigh*
It’s not put me off though. I’m working on my first work of fiction. Give me a year or two 🙂
My Life With Stiff Person Syndrome Continues
This week I had a meeting with my consultant and I’m at that stage now where nothing more can be done for me. I just have to continue getting on with life as it is. Daily pain is my life and will be for the rest of my days. Getting worse is to be expected and I’ll probably end up bedridden, but I’ll fight that as long as possible. I have a lot I want to achieve before I get to that bad. I have been quite low since the appointment, but que sera. Life is for living not feeling sorry for yourself.
And, I wrote a book…it’s not going to be a best seller but I’m pleased with myself.
