No colon, still rollin’ – My new wheels – Sunrise Medical Quickie Carbon Q50R
2024 has not been a good year for me health wise. Putting aside the usual ups and downs of Ehlers-Danlos Syndrome, having a perforated bowel, sepsis, major abdominal surgery, followed by an arthritis diagnosis and then an acute kidney injury thanks to Norovirus – it’s a safe to say I don’t have the physical stamina […]
Working With Chronic Illness: Navigating a World That Wasn’t Made For Us
This post was inspired by a recent conversation with a dear friend. We were discussing the pressures of work and health, and I realised I wasn’t only one feeling trapped between the expectation to work and a body that often refuses to cooperate. When society labels you as lazy In today’s world, productivity and the […]
My Mucus Fistula Journey: Day-to-day life
After my emergency stoma and ileostomy surgery in March 2024, I woke up with not one bag, but two. One is for my ileostomy and the other is for my mucus fistula. I’ve discovered that there is little information out there about mucus fistulas, and while not everyone with who has stoma surgery will need […]
A new diagnosis – inflammatory enteropathic arthritis
Just as I had hoped things were going to settle down a little with my health after the turbulent year that has been 2024, I have picked up another unexpected diagnosis of inflammatory enteropathic arthritis —one that ties closely into my IBD. I have officially been diagnosed with arthritis—something I suspect I’ve had for many […]
What should I expect when coming around from Stoma Surgery?
Whether your surgery is planned, or taking place as an emergency, there’s a million questions churning around in your mind about what to expect. Each person’s experience will be different, however, these are some of the things that I wish I’d known before my colectomy surgery. Disclaimer: I am not a medical professional, all views […]
Diet and food after stoma surgery
Something I get asked about a lot by others is how I have found food after stoma surgery. Everyones experience with diet and eating is different after such a major surgery, but this post rounds up what I’ve found and things I wish I’d known going into life with a bag! Trigger warning – talk […]
Cooking with a Chronic Illness
I have to be honest, I find putting together and cooking food to be one of my biggest day-to-day challenges when it comes to having a concoction of Chronic Illnesses. Not only am I contending with food allergies and a diet that is slightly altered due to my stoma, but I also find that my […]
#GUTSelfie Day 2024 with Guts UK
The 30th June each year marks #GUTSelfie Day with Gut’s UK. This brilliant initiative brings much-needed awareness to gut diseases of all types – while being great fun and helping you to meet more people in the community! This was my first year taking part, but I’ve been looking forward to it on the build up! […]
13 Things You Might Be Able To Claim For As A Disabled Person In The UK
I know how exhausting it can be to know where to start when working out what you can claim for as a disabled person. I’ve created my own handy guide of things I’ve learnt, from someone who’s had chronic illness for over 22 years. Each of these entitlements are ever changing, so please verify your […]
Wheelchair Accessible Concert Review: Newton Faulkner at The 1865, Southampton
A few weeks back, I had the pleasure of going to one of Newton Faulkner’s concerts, as part of the ‘feels like home’ tour at The 1865, Southampton. This was my third time seeing him in concert and as always got very excited as the date drew nearer. A treat for my Hubby, this was […]
Navigating a PIP claim: Should you apply? My tips and experience as someone with chronic illness
A question I get asked all the time as someone with chronic health issues is ‘is it worth making a claim for PIP?’. Let me flip that question around – do YOU have a disability that impacts your daily life? If you nodded, then my answer is a resounding “YES”. Let’s start by making something […]
Getting Diagnosed With Pancolitis In The UK – My Experience With Ulcerative Colitis
The story of my Pancolitis diagnosis via the NHS as a 22-year old who has had ongoing stomach issues for years…