I stumbled across JBOT and immediately knew it was a gold mine of EDS information. JBOT is a website and blog run by Jo Southall, EDSer & Occupational Therapist. The website is packed with strategies for how to improve function and quality of life with Ehlers-Danlos syndrome. Jo’s welcome message, simple, practical advice for managing a variety of long-term health conditions” is constant and clear across the site.
Everything is logically organized and easy to navigate by topic. Jo’s skills as a trained clinician help her navigate the medical system. Her combination of knowledge and creativity allow her to sort through the complexities of living with a chronic, multi systemic, disorder in a unique way.
Although much of the site focuses around Jo’s EDS, she always discusses the broader implications so that anyone with chronic illness can benefit. Jo’s tips and tricks include, “a variety of self-management skills for people living with pain, fatigue and poor mobility.” The posts are written in a way that both patients and practitioners can benefit from. Some posts incorporates Jo’s personal health updates and interests in a way that’s insightful and inspiring for the reader.
The site is broken down into four main sections
Health Conditions This section presents post organized by specific conditions. The section on EDS summarizes the main ways to manage EDS by focusing on pacing, joint protection, and sleep hygiene. Embrace The Brace totally aligns with Jo’s choice to focus on these strategies.
Occupational Therapy This section represents an overview of the role occupational therapy has in managing EDS and related chronic illness. There’s a splinting guide and information on bracing with EDS. There’s also a guide to wheelchairs, adaptive sports, and coping strategies. My favorite post was a review of The Abel Label. I’ve been working on putting together a post on functional clothing and am looking forward to trying out some of these garments!
OT Services This sections is where Jo uses her expert OT skills to work with clients one on one. Unfortunately I couldn’t have a consult with Jo since her current insurance doesn’t provide coverage for working with patients in America. I believe this type of independent consultant is one of the most important pieces missing in our medical system. Jo’s sessions sound fantastically useful! The sidebar is filled with enthusiastic testimonials about Jo’s help.
I’m especially interested in the Joint Protection session which includes tips for, “respecting your pain, avoiding deforming positions, sticking to stable positions, spreading the load, pacing activities, splinting and more.”
Druidry Druid is Jo’s faith. She describes it as a nature based spirituality. I think it’s wonderful that she has this section up on her OT site. Personally I believe having a connection to something greater than oneself is important for maintaining a positive outlook during illness. Whether it’s religion, spirituality, or a general universal outlook, seeing the larger context of life beyond our own personal struggles can help bring peace of mind even in the greatest times of struggle. Jo uses this section to discuss wildlife, nature, arts and crafts.
Self-Care isn’t Self-Indulgent: “Finding time for activities you love is not selfish or self-indulgent”
An alternative approach to Physiotherapy: “Physiotherapy, for me, has become a series of habits. It’s almost second nature to do calf raises when I reach for my tooth-brush. I’m beginning to think about my body more and more, it’s becoming natural to do simple tasks with poise and precision as a way to help further my control over my wonky joints.”
Therapeutic Relationships – Getting the most from Healthcare: “A good therapeutic relationship is a partnership between patient and healthcare provider, there is trust and honesty from both sides and everyone communicates perfectly. In reality this doesn’t always happen.”