A positive pain management experience
Earlier this year I was referred to the Pain Management Clinic at my local hospital, and last month I had my very first appointment with the Pain Management Consultant. The reason my doctor [...]
In Adults, Chronic Illness, Emotional Impacts, Marfan Syndrome, Medical Experiences, Psychology & Counselling, Thought Management
Posted My First CBT Session
BEFORE: Tomorrow morning I will be attending my first CBT session which will be a new experience for me. I saw a counsellor for basic talking therapy last year, but I’m aware that this will [...]
In Adapting, Chronic Illness, Disability, Emotional Impacts, Grief, Identity, Independence, Mental Health, Pacing
Posted Hypermobility: The condition that takes away…
Hypermobility is a stealer. It steals so much from those who live with it, making it feel like the label should more appropriately be “Hypermobility: The condition that takes away more than [...]
Are your clothes out to get you?
First of all – you’re valid, and you’re awesome. No matter how you dress or whether you even care about fashion or not. But sometimes part of our self-care might be allowing [...]
The reality of a flare-up: Living with EDS & Dysautonomia
Recently I had a terrible flare up, and someone asked me “what exactly does that feel like? How was a flare-up different from the usual pain of my Ehlers-Danlos Syndrome & [...]
Dear Ehlers-Danlos Syndrome
Dear Ehlers-Danlos Syndrome, I thought you had me. I really did. You gradually crept uninvited into my life, OUR lives. You took up my time, my energy, and hid from all my doctors. You made them [...]
Finding my voice through Marfan Syndrome
My life with Marfan Syndrome has been incredibly challenging, to say the least. But do you know has been one the amazing things for me? I’m finding my voice through Marfan Syndrome. [...]
Making the most of time indoors (when you have a chronic condition)
If you’re living with a chronic condition like Marfan Syndrome, Ehlers-Danlos Syndrome or any hypermobility condition, and you’re anything like me, you’ll spend most of your [...]
In Adapting, Adults, Disability, Emotional Impacts, Management Skills, Mental Health, Pacing, Pain Management
Posted All I want for Christmas is for you to read this post
Following on from last weeks post about What we need at Christmas, we recognise that it’s extremely difficult for people to understand what it feels like to have a hypermobility condition, [...]
When It Is News You Are Not Expecting
It’s been two weeks & three days now since my last appointment with the Cardiologist, one of those “news you are not expecting” appointments. I have to see him regularly [...]