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

How a thoughtless act can ruin a trip out

Yet again it's been a long time between blog posts, yet again I feel I have to apologise. I've been getting a lot of writers block recently and my mental health has taken a bit of a nose dive, these two things have clubbed together to make me feel very disillusioned with blogging. I've felt … Continue reading How a thoughtless act can ruin a trip out

Medical overload and operation stress!

Having a chronic illness or long term condition usually comes with the need to have many hospital and doctors appointments. You can sometimes get to know the staff so well that they know its you on the phone before you identify yourself, and treat you like a friend when you walk into the surgery etc. … Continue reading Medical overload and operation stress!

A plea for all

I today made a telephone call! Ok so to a lot of people this is not a big deal but to me these cause a huge panic. It starts when I decide I need to make the call, usually this is a last minute decision because if I have time to think about it for … Continue reading A plea for all

Catheter woes and what is a supra-pubic catheter??!!

No one said that having a catheter was easy, and I've been under no illusion that this was the case. However my bendy body doesn't seem to think that having a catheter is bad enough on it's own, and so this past week and a bit I have had to call the nurses out four … Continue reading Catheter woes and what is a supra-pubic catheter??!!

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!!