Today is Rare Disease Day and I thought I’d share some things I hate about having a chronic illness. I’ve suffered with chronic pain for sixteen years, and here’s a few things that are shitty about it. The actual illness and comorbidities are crap, painful, stressful etc. Constantly cancelling/rearranging plans Inability to be spontaneous Never…
Category: chronic
A Day In The Life: Ehlers-Danlos Syndrome
This week it’s Hypermobility Syndromes Awareness Week #HMSAware and obviously it’s really important to me as I have Ehlers-Danlos Syndrome Type 3. What many people don’t realise is that the HMSA (a bloody amazing charity) take all hypermobility syndromes into account, not just EDS, and it’s vital that the other hypermobility syndromes get enough attention…
Open Letter to Train Passengers
I don’t use public transport that often. I have a car and I don’t mind driving but if I have to do a lot of driving in one day, I’m absolutely screwed, I have a flare-up that can last days, if not weeks and then I’m an irritable bitch. Unfortunately, Ian can’t drive so I…
Dating Websites/Apps for the Disabled
Last week I entered into a Twitter debate regarding dating apps/websites specifically designed for disabled people. I’m not one to hold back with my opinion (as you well know), and since I found a number of issues with the websites/apps, I thought I’d share why I find it all so problematic.1. It highlights that disabled…
Chronic Illness and Brain Fog
For as long as I’ve been living the Spoonie life (16 years), I’ve had these weird little bouts of fogginess. The combination of chronic pain, fatigue and lack of sleep take a huge toll on the brain and sometimes it’s really difficult to say words, let alone form sentences.When it comes to brain fog, I’m…
When The One Thing You Want = The One Thing You Can’t Have
I’ve read many a blog post on resolutions and things people want to change/do better since January rolled in, and as positive and/or inspiring they have been, it’s made me focus on the one thing that I want but can’t have. Yes, I’m here to be a little moody cow and put a dampener on 2016…
Chronic Illness and Feeling Like a Burden
I’ve been thinking about this a lot lately, about my life, my contribution, the burden my chronic illness has on my loved ones. I know I’m not the only person suffering from a chronic condition that feels this way but since it’s been on my mind, I thought I’d discuss it. Of course my partner…
20 Things Not to Say/Do to Someone in a Wheelchair
As a wheelchair user I’ve experienced quite a varied reaction from the able-bodied public, so I thought I’d share a few things that you shouldn’t say or do to those of us that use wheels.1. ‘I’m only parking here for five minutes.’– No, you’re really not, it’s a disabled bay, you don’t have a permit,…
BBC News: “Too Pretty To Be In A Wheelchair”
“Too pretty to be in a wheelchair.” I woke up to so many tweets and texts this morning because my interview with BBC’s Lucy Townsend had been published. I didn’t think it would get half as much attention as it has and it’s made my heart smile. Lucy emailed me after reading my post on…
Flare-Up Plan: Chronic Illness Strategies
Are you ever in so much pain that you can’t even begin to comprehend what to do to help yourself? I know I get to the point where the pain is so consuming that my brain simply won’t work and I have no answers to pull out of my bag. Where do I start? What do…