I often wonder what it would be like to not be in pain. Every day is exhausting. Every day different. Every day a question mark. I don’t know if I’ll wake up and be in agony and have to cancel plans. I don’t know what kind of mood I’ll be in. I can’t guarantee that…
Category: chronic condition
Mental Health: Depression and Anxiety
I’ve never spoken about this on here; I’ve literally posted so much about every other aspect of my health but hardly anything regarding my mental health. I’ve touched on it but never gone into detail because it’s something I’ve been struggling with and find difficult to talk about. But here we go.Please respect my candour,…
Letter To Myself on the Day of Diagnosis
As it’s EDS Awareness Month, I thought I’d write a letter to my nineteen year old self on the day I was diagnosed. It’s been almost 10 years since it was confirmed that I have Ehlers-Danlos Syndrome type III, but I’d suffered all of my childhood when I think back; it just got a lot…
I Told A Stranger That I’m Disabled
May to me is all about EDS Awareness Month. I was diagnosed with Ehlers Danlos Syndrome when I was 19, (10 years ago now, that makes me feel old) it took over six years before I received a diagnosis and there is still not enough knowledge about EDS.I’m really awkward when it comes to talking…
Putting Yourself First – Self Care
Self care is so important for everyone, whether you’re a Spoonie or not. But if you are chronically ill, it’s even more important to put yourself and your needs first. It’s not selfish, it’s being kind to yourself. Taking care of yourself is not a new thing but it is something we need to be…
Brain Fog #2
I wrote a post on brain fog back in January and received an overwhelming response from people who also tackle their foggy brains; they could empathise but also chuckled at the hilarity that comes out of my mouth, (my fellow Spoonies know all too well as they experience it too). In my opinion laughter is…
My Relationship isn’t 50/50
This doesn’t bother me in a way that I’m fixated upon it, but it is something in the back of my mind; especially with regards to how outsiders view things. My relationship with my boyfriend, Ian, isn’t 50/50, it’s not equal. What I mean is, he does absolutely everything. It seems like his whole being is consumed…
The Positives of Having a Chronic Illness
Last week I wrote about Why Having a Chronic Illness Sucks, so this week I thought I’d put a more positive spin on things and list (yes, I love a list) a few things that aren’t so bad about living with a chronic condition. Made me strongerI’m in pain every single day, sometimes to the…
Why Having a Chronic Illness Sucks
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…
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…