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…
Category: EDS
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…
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…
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…
30 Things About My Invisible Illness You May Not Know
It’s nearing the end of Invisible Illness Awareness Week 2015 and when I saw that Rachel over at Happy Little Syllables had posted this meme about living with an invisible illness, I had to share my story too. Invisible Illness Awareness week started on the 28th September and ends October 4th.Many of you know that…
What I Learnt at RNOH Pain Management and Rehabilitation Programme
‘They tried to make me go to rehab’…and I went. I’m on my fourth week home from spending three weeks in Stanmore, on the amazing, life-changing Pain Management Programme. I intend on writing more in-depth posts about various things I learnt during my time in hospital but thought I’d give you a little inside scoop of what…
Chronic Illness Sufferers Be Heard: #SufferingTheSilence
Suffering the Silence is an online community for people living with chronic illnesses to share their stories. They are an amazing movement that are breaking the silence by giving sufferers a voice and a platform to tell others what it is like to live with their condition/s.As soon as I read about #SufferingTheSilence here, I…
Spoonie Struggle: Explaining my Disability to Others
How do you do it? How do you tell someone that you’re disabled? Is it as easy as just blurting it out?Do you not bother?Do you go into detail? I used to avoid it, I never said I was disabled, I didn’t identify as a disabled person; I was (and am) disabled but if I…
It’s Almost Time: Stanmore Pain Management and Rehabilitation Programme, Part Five
I can’t quite believe how fast this has come around. Three more sleeps and I’m off into hospital for my three week in-patient stay for Pain Management. I’m so anxious just writing this. It’s such a good job that I booked a hotel for the night before because I know on Monday morning the last…