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.
Chronic Illness Lifehacks
Approaches to shopping, information management, communications, dealing with “The System”
From food to disability resources to support groups
Fundamentals, knowing how sick you are, heart rate pacing, patient-driven resources, advocacy and information, research
Postural Orthostatic Tachycardia Syndrome
Organizations and support
Mast Cell Activation Syndrome
Information, food list, support