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

Putting the Able in Disabled

It’s 6am and my alarm clock goes off, I open my eyes and feel the pain flood my body. I lift my head off my pillow and feel my heart rate start to climb rapidly. I give up, hit snooze and put my head back on my pillow for 10 minutes. My alarm goes off… Continue reading Putting the Able in Disabled

Chronic Pain, Disability, Ehlers-Danlos Syndrome, health

Health Update

Happy New Year gang (can I still say that in the middle of February? No, I can't can I...) Well then, Happy February gang. I've sort of neglected this blog so far this year, as my brain has been filled with a ridiculous amount of other things, but I thought it was about time I… Continue reading Health Update

Chronic Pain, Disability, Ehlers-Danlos Syndrome, Lifestyle

2020 Round Up

2020… what a year!  I think I speak for us all when I say that at midnight on 31st December 2019, none of us could have even imagined how the year would turn out. Despite the country being in lockdown for the majority of 2020, my year has actually been surprisingly hectic, so I thought I… Continue reading 2020 Round Up

Bereavement, Grief, Loss of a Parent

13 years on the grief rollercoaster

As this post goes live, it will have been exactly 4,750 days since my world was turned upside down and I was placed onto the grief rollercoaster, when my Dad passed away with no warning.  I wanted to take a moment to just sit and reflect on the time that has passed as a lot… Continue reading 13 years on the grief rollercoaster

Chronic Pain, Disability, Ehlers-Danlos Syndrome, health

Major Knee Surgery? Been there, done that…

A few weeks ago, I was talking to my very good friend (and knee twin) Deb, who is about to also undergo a Tibial Tubercle Transfer (along with other procedures) on her right knee, and she suggested that I should write a blog post with all my tips for surviving major knee surgery, so, here… Continue reading Major Knee Surgery? Been there, done that…

Chronic Pain, Disability, Ehlers-Danlos Syndrome, health

8 Week’s Post-Op; Is My Knee Healed?

To make up for the fact I never wrote a blog post about week 8 of recovery, I thought I would quickly write one to update everyone on how my 8-week X-Rays and follow up went this morning. Yes, you read that right… I am actually writing a blog post on the same day everything… Continue reading 8 Week’s Post-Op; Is My Knee Healed?

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

Week 7 Post-Op

Sunday 1st November (Day 43) to Saturday 7th November (Day 49) This week has been absolutely mental, so much has happened and unfortunately, towards the end of this week I have had to focus all of my energy on reliving a lot of medical trauma, rather than my knee recovery. Safe to say, I am… Continue reading Week 7 Post-Op

Chronic Pain, Disability, Ehlers-Danlos Syndrome, health

Weeks 4-6 Post-Op

Disclaimer: This post is part of a Surgery Recovery Diary and therefore there are some graphic photos included (including photos of needles). This week’s post is a 3 for 1, which means I am officially up to date with my recovery diary (no, I never thought it would happen either…). The last 3 weeks have… Continue reading Weeks 4-6 Post-Op

Chronic Pain, Disability, Ehlers-Danlos Syndrome, health

Weeks 2 and 3 Post-Op

Disclaimer: This post is part of a Surgery Recovery Diary and therefore there are some graphic photos included. Week 2 Post-Op Sunday 27th September (Day 8) to Saturday 3rd October (Day 14) Week 2 of recovery was spent becoming a little bit more self-sufficient (I managed to shower with minimal help, sit at my dressing… Continue reading Weeks 2 and 3 Post-Op

Chronic Pain, Ehlers-Danlos Syndrome, health

Week 1 Post-Op

Disclaimer: This post is part of a Surgery Recovery Diary and therefore there are some graphic photos included. As I am writing this post, I am actually 4 weeks post-op but let’s rewind time and go back to week 1 of recovery, shall we? Week 1 went by pretty quickly, mainly due to the fact… Continue reading Week 1 Post-Op

Chronic Pain, Disability, Ehlers-Danlos Syndrome, health

Day 1 Post-Op

Before I start this post I do need to warn you that is a graphic photo, so please keep scrolling past the first lot of photos if you are squeamish. After a night of dozing on and off I woke up around 6am to my lovely night-shift nurse Caroline bringing me my cocktail of pain… Continue reading Day 1 Post-Op

Chronic Pain, Disability, Ehlers-Danlos Syndrome, health

Surgery Day – TTT, MPFL Reconstruction and Lateral Release

Two weeks post surgery and I am finally lucid enough (and now able to keep both eyes open) to concentrate on something other than watching Grey’s Anatomy so I figured I should probably update my blog with how surgery went and how recovery is going. I’ll work through the whole thing chronologically, post by post… Continue reading Surgery Day – TTT, MPFL Reconstruction and Lateral Release

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

Ehlers Danlos Syndrome From an Outsider’s Perspective – My Granny

Today marks 4 weeks since the start of this blog series and today’s post is written by someone extremely special to me, my Grandmother. I have always had an extremely close bond with my Granny. When I was little, I loved being treated to a meal out with my Granny because she would always let… Continue reading Ehlers Danlos Syndrome From an Outsider’s Perspective – My Granny

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

Ehlers Danlos Syndrome From an Outsider’s Perspective – Akua

This week’s guest post is from one of my closest friends, Akua. Akua and I went to school together from the age of 15, and at 18 we were both boarders at school, so we spent a year living 2 bedrooms apart. This means that she has been around since the very beginning of my… Continue reading Ehlers Danlos Syndrome From an Outsider’s Perspective – Akua

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

Ehlers Danlos Syndrome From an Outsider’s Perspective – Hannah

Today’s guest post is written by someone who means the absolute world to me, so allow me to introduce you to my best friend, Hannah. Hannah and I met almost 7 years ago when we moved into the same halls of residence at University and she has been by my side ever since. When I… Continue reading Ehlers Danlos Syndrome From an Outsider’s Perspective – Hannah

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

Ehlers Danlos Syndrome From an Outsider’s Perspective – Ian

Today’s guest post is one I never thought would actually happen but I am going to preface it with a warning that if you read the last instalment that my mum wrote, the answers you are about to read are nothing that you are expecting but that’s brothers for you… Ian and I don’t really… Continue reading Ehlers Danlos Syndrome From an Outsider’s Perspective – Ian

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

Ehlers Danlos Syndrome From an Outsider’s Perspective – A Series

There’s a common misconception that EDS only affects those who are actually suffering from it but that isn’t true. Because EDS is all encompassing, it has an impact on everyone around us. I decided to start a new series on my blog, exploring the different perspectives from people in my life. In this series, you… Continue reading Ehlers Danlos Syndrome From an Outsider’s Perspective – A Series

Uncategorized

Dear Doctors, Please Don’t Take Our Pain Medication Away…

You may have seen in the news this week (if you live in the UK and have Chronic Pain then you most probably would have) that new NICE guidelines have been introduced with regards to managing chronic pain. GPs are now being advised not to prescribe pain medication to those of us with conditions that… Continue reading Dear Doctors, Please Don’t Take Our Pain Medication Away…

Chronic Pain, Disability, Ehlers-Danlos Syndrome, health

𝙺𝚗𝚎𝚎 𝚂𝚞𝚛𝚐𝚎𝚛𝚢 𝙳𝚒𝚊𝚛𝚢 – 𝚂𝚞𝚛𝚐𝚎𝚛𝚢 𝙸𝚜 𝙱𝚘𝚘𝚔𝚎𝚍!

Well, I wasn’t expecting to start a diary of my knee surgery quite so soon… Originally, I was only going to start this blog series once I was out of surgery but so much has happened since I was first told I needed an operation that I figured I may as well start this series… Continue reading 𝙺𝚗𝚎𝚎 𝚂𝚞𝚛𝚐𝚎𝚛𝚢 𝙳𝚒𝚊𝚛𝚢 – 𝚂𝚞𝚛𝚐𝚎𝚛𝚢 𝙸𝚜 𝙱𝚘𝚘𝚔𝚎𝚍!

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

Behind The Smile…

One of the most common questions those of us with invisible illnesses get asked is,” What is the worst part of your condition?”. For me personally, I think a lot of people expect my answer to be the pain I am in all the time, and yes, the pain is honestly horrible and I wish… Continue reading Behind The Smile…

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

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