Why being called a medical “enigma” or “puzzle” is not helpful

A few days ago I was talking to a friend of mine (who also blogs and can be found at https://danonwheels.wordpress.com/) and we got onto the subject of doctors, I had had a particularly unhelpful doctors appointment where 95% of my issues and concerns had been dismissed as something that she couldn't do anything about, … Continue reading Why being called a medical “enigma” or “puzzle” is not helpful

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Why we need to change our perception of Autism

As you may have noticed I've been absent for a few months again now.  I've been struggling with both what to write, and with my own health and mental health.  I'm hoping that I can start again fresh now it's the new year, I will rewrite some of the posts I've had sitting waiting and … Continue reading Why we need to change our perception of Autism

Meet my new mascot & the life of a grown up fiddler!!

Firstly this post has been written for a few weeks now, just waiting for photos which I took the other day.  Unfortunately my brain fog, summer holidays and severe writers block has left me with no posts to update you with!!  I'm hoping that I might be able to remedy this over the next few … Continue reading Meet my new mascot & the life of a grown up fiddler!!

EDS Awareness Month……….and what you need to know about my condition!

May in my EDS world is awareness month. As I've explained to you before I have got a bit of awareness month fatigue, there are so many of them and so many different days. However for me awareness month is how I found out about EDS and how I finally got some of my answers. … Continue reading EDS Awareness Month……….and what you need to know about my condition!

Awareness month and What you need to know about my EDS part 2!!

I decided about half way through my previous post that not only was the post getting incredibly long, but it was also going to make everyone switch off!! 31 questions would be fine if they were really short answers, but they aren't! So I apologise for what might be two really long and tedious posts, … Continue reading Awareness month and What you need to know about my EDS part 2!!

Why I Still Send Christmas Cards!!

Being disabled becomes isolating, sometimes the only people I have contact with are my mum, dad and carers for sometimes days at a time.  My only other contact can be through a screen with either people I've never met, or rarely meet.  It has become even worse with the unspeakable problem because it is harder … Continue reading Why I Still Send Christmas Cards!!

Why my not accepting the label “disabled” doesn’t mean I’m on a crusade. 

Now while I know that I am in fact disabled and live everyday with my disabilities I still don't necessarily consider myself to be "disabled". I'm not deluding myself I know I am not able bodied, but having been a fairly "normal" abled bodied person until I was in my late 20's I still struggle … Continue reading Why my not accepting the label “disabled” doesn’t mean I’m on a crusade.