Posts Tagged ‘Managing Ehlers-Danlos’
Posted on January 23, 2023
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 […]
Posted on December 26, 2022
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 […]
Posted on December 26, 2022
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 […]
Posted on December 23, 2022
For our January newsletter, journalist Karina Sturm spoke with rare disease advocate Nthabeleng Ramoeli. Ramoeli was born in Lesotho, a country encircled by South Africa, and lives with Ehlers-Danlos syndromes and many other comorbid conditions. The young woman relentlessly fights for improved access to health care for rare disease patients in her home country and […]
Posted on December 22, 2022
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, […]
Posted on November 22, 2022
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’ […]
Posted on November 21, 2022
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, […]
Posted on March 30, 2022
Join us on Tuesday, May 10th at 12 pm EDT on a live Zoom call to learn ways to help improve the quality of your life if you face EDS. As we know, there is no cure, but these suggestions might help you have better control of your out-of-control disorder. My special guest speaker is […]
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