Christmas Day: It is forever full of surprises
Christmas Day is forever full of surprises. When you’re little, it’s the right kind of surprises – “What has Santa brought?” “What presents will I get from family?” “How much fun are we going to [...]
In Adapting, Carers, Disability, Ehlers-Danlos Syndrome, Emotional Impacts, Hypermobility Spectrum Disorders, Joint Hypermobility Syndrome, Loeys-Dietz Syndrome, Marfan Syndrome, Self-Care
Posted You, me & my connective tissues
Oh, the things I never thought I would have to explain. I’m 28, and I hobble into the physio rooms using a walking stick and the wall, trying for the life of me to pretend that everything is [...]
In Chronic Illness, Distraction, Ehlers-Danlos Syndrome, Hypermobility Spectrum Disorders, Joint Hypermobility Syndrome, Loeys-Dietz Syndrome, Marfan Syndrome, Pacing, Pain Management
Posted Distract from the pain
Pain management is a personal experience. With chronic pain finding the right way to manage the pain takes time and the right combination of treatments. Finding a way to distract from the pain is [...]
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, Disability Awareness, Ehlers-Danlos Syndrome, Hypermobility Spectrum Disorders, Joint Hypermobility Syndrome, Loeys-Dietz Syndrome, Marfan Syndrome, Pain Management
Posted Top 10 most challenging symptoms of hypermobility conditions
I recently did a survey of our online community about their biggest struggles relating to living with their hypermobility condition. These people have a variety of diagnoses including Generalised [...]
In Adults, Ehlers-Danlos Syndrome, Hypermobility Information, Hypermobility Spectrum Disorders, Joint Hypermobility Syndrome, Loeys-Dietz Syndrome, Marfan Syndrome
Posted The Burger Joint
Ever been to a burger joint? Ever hear of joint hypermobility? What on earth do the two have in common? Joint hypermobility is the presence of a larger than expected range of movement at a given [...]
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 [...]
In Adapting, Adults, Disability, Emotional Impacts, Mindfulness, Pacing, Pain Management, Psychology & Counselling, Therapy Options
Posted 4 keys to hypermobility pain management
I’m sorry to hear that you, or your child, are experiencing so much pain. Pain is a big problem for a lot of people with hypermobility conditions, so please know that you are not alone in this [...]
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 & [...]