Today is Rare Disease Day. I’ve written lots on my rare condition and also Star’s condition, but today I wanted to write about getting help when you are rare. Star Way back in 2013, Star woke up one day with a wonky neck. I took her to the GP who said to take her to…
stiff person syndrome
What it is like Living with a Chronic Illness
I can’t speak for everyone because we are all different. But living with a chronic illness is often misunderstood. Imagine that the next time you get one of those horrid colds that knock you off your feet, disturb your sleep and make you feel like crap for a few days. Then you get better and…
10 Facts About My Condition Stiff Person Syndrome
I have Stiff Person Syndrome, I am one in a million I missed this years Stiff Person Syndrome Awareness Day. I’m currently in a very bad position regarding my condition but I have decided to share this post anyway. Here are 10 facts about Stiff Person Syndrome. I have this stupid Stiff Person Syndrome which…
It’s a Week of New Things
Last week my word of the week was School as we had found a new school for the Little Man. We went out on Saturday to buy his new uniform and although we got everything we need the day didn’t end well. More about that in a little while. First I want to tell you…
The Little Things That Help
Being faced suddenly with a disability can be a daunting experience but there are things that can help. Nearly three years ago now I was admitted to hospital after becoming suddenly paralysed for apparently no reason. Over the two weeks in hospital with treatment and physio I regained some senses and learned to walk a…