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!

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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!!

Having a break!!

I haven't managed to write a blog post for a bit now and thought I better give you an explanation. There are two reasons, firstly it's the Easter holidays so I've not got the space or time to concentrate on writing. Secondly I had planned to have a number of finished posts ready so that … Continue reading Having a break!!

Moving my legs!!

One thing that a lot of non-disabled people don't understand is the sheer panic, annoyance, anger, inconvenience and, or upset moving a disabled person's mobility aid can cause. It's almost difficult to explain just how we feel when it happens because you have very little to compare it to, but what it pretty much equates … Continue reading Moving my legs!!

Boring weeks and Sensory Overload part 2!!

This week has yet again been a very boring week. My dad has been off ill which has meant that mum and I have been stuck in a lot of the time as she didn't want to leave him for too long. However this has had two rather annoying consequences for me, one I'm bored … Continue reading Boring weeks and Sensory Overload part 2!!

January Blues!

January is always a blue month, I guess for most people, but I really do find that it is for me. For others it might be the reality of the resolutions kicking in and the resolve diminishing or completely going, or it might just be that pay day for those who work is a longer … Continue reading January Blues!

Another year, same old problems!!

As predicted because I have now stopped and we have got back to normality, I have crashed.  My fatigue levels are so unbelievably high, made worse by the weather (I think) because it is so dark and grey all the time and so all I want to do is fall asleep.  The catheter continues to … Continue reading Another year, same old problems!!

New year’s eve

I've never enjoyed new years celebrations, it's all about looking back and reminiscing about what's happened in the year and looking forward to the next and all that will bring. Unfortunately for me it's always been a long list of things to remind me of all that I don't have and a look forward to … Continue reading New year’s eve

Floored!!

This last week I have been finding very hard to cope with. It's partly been the 3 different appointments I've had, it's partly been the weather but what has totally floored me has been the cold my gorgeous niece shared with me!! You'd have thought that with all the conditions I have and the fact … Continue reading Floored!!

Doctors second appointment 

Schools back but for me it's now a long road back to normality after the holiday!! I haven't really been able to (or ever been any good at) pacing, so my body is definitely rebelling. I'm aching all over with the exhaustion and my brain fog is so bad I'm not actually sure how I'm … Continue reading Doctors second appointment