I live with several chronic illnesses that have a significant impact on my health. The most debilitating are Myalgic Encephalomyelitis aka Chronic Fatigue Syndrome (ME/CFS) and Postural Orthostatic Tachycardia Syndrome (POTS). I’ve had these conditions since my late 20s, and they have gotten progressively worse over time. I also have Fibromyalgia, and more recently have developed Mast Cell Activation Syndrome (MCAS) in the last five years or so. MCAS, while relatively mild for me, is also creating quite a number of challenges. I have been primarily housebound since early 2018.
There are tons of tools, blogs and websites out there with useful information on the chronic illnesses I live with. I’ve compiled a list of some of the ones I refer to most often, or have found especially useful.
Approaches to shopping, information management, communications, dealing with “The System”
Fundamentals, knowing how sick you are, heart rate pacing, patient-driven resources, advocacy and information, research
Organizations and support
Information, food list, support