Suddenly Disabled: One Year On

A year ago today, I woke up disabled. I didn't know it at the time; I thought that I had a stomach bug or had somehow caught a flu in the summertime.I woke up feeling fine. I was working the 11:30am to 8pm shift at work, so I had plenty of time to relax in …

Hidradenitis Suppurativa: What is that anyway?

Let's talk about Hidradenitis Suppurativa (HS), or "Why I'm crying on the kitchen floor after only four hours sleep" Let's start at the beginning. What is it? HS is an incredibly painful, chronic, incurable "skin disease", although more widely now it's coming to be thought of as an autoimmune disorder, which is fancy talk for …

[TW: Child Abuse] And the Memory Fades (Poem)

I don't remember whyBut I'm runningRunning from HimTripping up the stairs as I goPalms stingingWrists jarredSprinting for my bedroomSlamming the doorHe's already up the stairsI leap on to the bed for safetyBut it's not safeI'm crying and He's shoutingA fistful of hair and I'm thrown to the groundScreamingI sit up but I'm thrown againHe's screaming …

My Body and Me (Poem)

We have a dealMy body and meIf I treat her as kindly as I canShe will return the favour I give her warmth and restI make sure she is fed and comfortableAnd when I've taken good care of herShe says, "it's time" and for a short window, I'm me We can't dance like we used …

I’m Not Trying to Get Better (and That’s Okay)

When you're chronically ill, there is undeniable pressure from friends, family, the media, and even strangers on the internet, to be seen to be doing something to get better. It feels like if you're not actively trying to improve your health, that you must want or deserve to continue feeling unwell, which is absolutely not …

Am I Allowed to Call Myself Disabled?

I have referred to myself as disabled twice in my life. Both within the last two weeks. Both left me with a bad taste in my mouth. I think this comes primarily from still being in an adjustment period from my condition going haywire. In part it feels like it may be temporary; there's a …

The Self Care Conundrum

Today I am exhausted. I've been so ill with the HS, that I've been walking (alright, waddling), sitting, and laying in ways to accommodate that pain, and now I ache all over. I feel like I've been hit by a bus.My back, neck, and shoulders are on fire, my legs ache, my feet are sore; …

Technical Glitch

Yesterday I spent an hour writing a post about my appalling treatment by a doctor. WordPress crashed and lost it...At some point I will re-write it and back date it, but today was my third doctors appointment in three days and I am just exhausted.My single plan for today is to have a bath, and …

Limits and Frustrations

Recently a friend pointed out that, in her words, "it's like you've just had your leg amputated, and yet you're still trying to run a marathon" and gave me the advice of trying to focus on what I *can* do rather than what I can't. I am trying, and I'll get there, but at the …

Bravery Meets “I Just Don’t Care Anymore”

Today I shared pictures on my instagram page of how my illness affects me.It's partially the bravest thing I've ever done, and partially that I just don't care about the embarrassment anymore, and I just want people to have a basic understanding of what I have to deal with every day.It's agonisingly painful; like razor …