Chronic Pain, Disability, Ehlers-Danlos Syndrome, health

Why I’m excited to have major knee surgery

When someone gets told that they need major surgery, requiring months/years of recovery, the last emotion you would expect them to have is excitement right?! But that is the exact emotion I feel when I think about the major knee surgery I am currently waiting for. I know it might sound really strange, I mean why would… Continue reading Why I’m excited to have major knee surgery

Chronic Pain, Disability, Disability Awareness, Ehlers-Danlos Syndrome, health

Ehlers Danlos – More Than Just Bendy

Ehlers-Danlos Syndrome Type 3/Hypermobility EDS (hEDS) is a life-long genetic disorder, which is caused by an abnormal mutation of an unknown gene. It causes a fault in the collagen, which is the glue that holds our bodies and organs together causing it to become weak and fragile affecting the whole body. Collagen is found in… Continue reading Ehlers Danlos – More Than Just Bendy

Chronic Pain, Disability, Ehlers-Danlos Syndrome, health

Types of Pain EDS Causes Me

One of the most challenging things about having chronic pain is attempting to articulate exactly what hurts and what type of pain it is as there’s so much often at the same time. As I struggle to properly explain this out loud, I thought I would have a go at putting it all down in… Continue reading Types of Pain EDS Causes Me

Chronic Pain, Disability, Ehlers-Danlos Syndrome, health

My EDS Story

I haven’t written a blog post in over a year, I can’t really explain why as I’m not entirely sure myself but it’s 2020 now and I finally have the motivation to start blogging again.  Over the last few months I have been thinking about my life with EDS so far and thinking about how… Continue reading My EDS Story

Bereavement, Grief, Loss of a Parent, Uncategorized

Losing a Parent As a Child – 11 Years On, 11 Lessons Learnt

It’s been 11 years’ since I lost my dad aged 13 and I can honestly say that the journey of grief is one hell of a rollercoaster. When you lose a parent at any age you learn some pretty tough life lessons but when you lose a parent as a child/teenager, you learn things that… Continue reading Losing a Parent As a Child – 11 Years On, 11 Lessons Learnt

Chronic Pain, Disability, Ehlers-Danlos Syndrome, health, Travel

Travelling with Ehlers-Danlos

Ehlers-Danlos… the travel companion no one ever asked for or wanted, but as with all Chronic Pain conditions we’re all in this for the long haul and so even when we go holiday, EDS comes along too. I have recently returned from two weeks of travelling around the West Coast of America (with a 9… Continue reading Travelling with Ehlers-Danlos

Diet, Ehlers-Danlos Syndrome, health

Diet and EDS – Is there a link?

In recent years, there have been numerous articles around the link between diet and pain. Now, I was always one of those people who disregarded this and thought it was a load of nonsense. “How could what I eat possibly affect my pain levels?” However, a few months ago after a period of feeling ill… Continue reading Diet and EDS – Is there a link?

Disability Awareness, Ehlers-Danlos Syndrome, health

Not Every Disability is Visible…

All too often in the media nowadays you see articles about people who have been vilified for parking in a disabled bay when they don’t look “disabled”.  Sometimes this is done by a note left on someone’s car windscreen, sometimes it’s verbal abuse upon getting out of the car and other times it is silent… Continue reading Not Every Disability is Visible…

Ehlers-Danlos Syndrome, health

20 things I have learnt from my disability

When I was first diagnosed with EDS, I never really thought that the very thing causing me so much pain could teach me some of the most important lessons I’ve learnt but nevertheless it has. After having EDS for 24 years now (you’re born with it, even if symptoms don’t show until later in life)… Continue reading 20 things I have learnt from my disability

Ehlers-Danlos Syndrome, health

EDS Awareness Month – An Open Letter

Since May is EDS awareness month, I thought I would write an open letter to those who don’t know or understand much about it. Dear friends, family and even strangers, below are some things that I want you to know and understand… I am scared, terrified in fact as I have no idea what the… Continue reading EDS Awareness Month – An Open Letter