Managing Ehlers-Danlos
Wrap Yourself in a Blanket of Love: How to Foster Self-Compassion
Self-compassion (and self-care) are sometimes misunderstood as selfish, self-cherishing, or self-indulgent, but this couldn’t be further from the truth, especially when you live with chronic illness or chronic pain such as Ehlers-Danlos syndrome (EDS). Self-compassion is the act of offering ourselves the same care and compassion we would give to others. It is simply the […]
Surviving the Rollercoaster of EDS and Chronic Fatigue: Tips and Tricks for Managing the Boom-and-Bust Cycle
When you’re doing okay, it can feel like a high, a return to normalcy even. It is hard to figure out the level of functioning that is going to allow you to get things done without making your symptoms send you into another flare. It’s a tiny little fine line between doing too much and […]
The Six Steps of Proper Pacing
Pacing techniques, such as the “spoon theory,” can be incredibly helpful for managing energy levels and preventing overexertion. This involves breaking activities into smaller chunks and taking breaks as needed to allow for rest and recovery. Sounds easy enough, right? UGH- NO!! You kinda need to plan to do this successfully to know which spoons […]
The Road to Recovery Was Paved By Me and My Wheelchair: Q&A With Ryann Mason
Many people with chronic illnesses, like Ehlers-Danlos syndrome (EDS) or other disabling or deteriorating conditions, are often afraid of the possibility of “ending up in a wheelchair.” It is a real fear. But what if we changed our thinking? Wheelchairs provide freedom; they aren’t the end, but empowering and enabling for the user. And sometimes, […]
Para climber Anoushé Husain on “believing in the impossible”, her cancer diagnosis, EDS journey, and the sports she loves
For our December newsletter, journalist Karina Sturm interviewed Anoushé Husain. Husain is a civil servant and paraclimber who broke the Guinness Book of World Records for climbing the greatest distance on a climbing wall in one hour, as a female climber with only one hand. She was born with half an arm, has beaten cancer, […]
The 12 Gifts of Blissmas: This Holiday Season’s Gift Guide for the EDS Warrior
Let’s be blunt: chronic illness and pain sucks. Many of us don’t only live with Ehlers-Danlos Syndrome (EDS), but also have a variety of comorbid conditions such as postural orthostatic tachycardia syndrome (POTS) and mast cell activation syndrome (MCAS), affectionately known as the EDS trifecta. Living with all of these takes ‘chronic illness and pain’ […]
EDS Holiday Hacks: Twelve Tips for Setting Yourself Up for Success by Realigning Your Expectations
This time of year, it can be hard for anyone, especially those with a chronic illness like Ehlers-Danlos syndrome (EDS), to gear up for the holiday madness. The pressure to shop, cook, wine, dine and be fine is too much! You might not be able to travel or gather with loved ones for various reasons, […]
The Truth is that I will Always be Tired. It’s Part of my EDS.
Tiffany wakes up exhausted with her Ehlers-Danlos Syndrome issues. Life with Ehlers Danlos: Surviving Exhaustion While Still “Adulting” By Tiffany Early I’m tired. That’s not exactly a news flash. I’m forever and always tired. One thing that I have in common with the majority of the chronic illness and rare disease community is my chronic […]
