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!!

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!!

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

My insomnia and sleep kit!!

As my post on my emergency kit was so popular I thought I'd share with you another "kit" of sorts - my insomnia and sleep kit.  I've suffered with insomnia now for many years. I started with one or two nights a month, then it became a week. That then crept up until it was … Continue reading My insomnia and sleep kit!!

Brain Fog strikes again!!

I've had a long week again. 2 hospital appointments and getting ready for my mum to go away (my sister and my niece will be staying with me to help me), and so I've been struggling again in more ways than one. The problem has been my brain fog again which has been awful. I've … Continue reading Brain Fog strikes again!!

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 

Realisations 

I have been cooking up a post which seems to be taking me forever to write!! I thought that while I was doing that though I'd still write a post as while we were out yesterday I came to a few realisations, well ok not so much realisations more recollections of these thoughts but whatever … Continue reading Realisations 

Phew, that wasn’t as bad as expected!! But has anyone seen my knuckle??

Today was D-Day, my first appointment with my new doctor.  I can't say that I was looking forward to it.  My brain was in total overdrive and the two nightmares I had last night definitely didn't help.  I had written my list, an essential piece of my doctors appointment equipment for without it I am … Continue reading Phew, that wasn’t as bad as expected!! But has anyone seen my knuckle??

My first ever disabled dream.

So the other night I had my first ever (or that I can remember) disabled dream.  I think that having been able bodied before and having not used a wheelchair for a lot of my life I have always dreamt that I was still able to walk about.  My dreams seemed to be an escape … Continue reading My first ever disabled dream.