May Momentum and World MECFS Day – My story with MECFS and some information from experts who have found that COVID19 and MECFS intersect as viral illnesses.
Category: MECFS – Myalgic Encephalomyelitis / Chronic Fatigue Syndrome
About MECFS – Myalgic Encephalomyelitis – Chronic Fatigue Syndrome
MECFS is a poorly understood neurological disease that millions of people suffer from. It is known as Myalgic encephalomyelitis or Chronic Fatigue Syndrome. We use MECFS as an acronym.
ME is a disabling neurological condition that affects the central nervous system, brain, blood, muscles, joints, GI tract, and lymphatic system.
World ME Awareness Day is on May 12.
This day is shared with Fibromyalgia Awareness Day. Both diseases are connected.
ME is a life-altering disease that comes with a massive array of symptoms. The most common symptoms of ME are:
- post-exertional malaise
- un-refreshing sleep
- profound fatigue
- cognitive impairment
- hypersensitivity to noise and light
- orthostatic intolerance
- pain
Around 25% of ME patients are affected severely by this disease. This means they are housebound, bedbound, or they might require a wheelchair IF they can mobilize during various stages of this illness.
No matter where you fall on the spectrum with ME, it WILL disrupt your life.
Most of my readers are likely aware that I’ve been mostly housebound for a few years.
ME is one of the most common chronic illnesses. Campaigns will be ongoing throughout May as organizations and advocates around the world speak up to raise more awareness about ME. This disease does not discriminate. ME affects all social classes and ethnic groups. It is the most common cause of long-term absence from school, and it can affect more than one family member, which suggests that genetic factors are involved.
This is why we say Millions Missing.
Please help us find a cure. Leave no one behind.
Coping With Stress And Chronic Illness – Life During a Global Pandemic
Coping with stress and chronic illness during a global pandemic is rough. But is it much different from how chronically ill patients were already living?
Learning to Love Your Chronically Ill Body
Written in honor of World Mental Health Awareness Day and World Arthritis Day 2019 – Learning to love your chronically ill body is possible. Here are some things to remember.
Let’s Talk About Pain – Chronic Pain Awareness Month
Let’s talk about pain for chronic pain awareness month. This is my chronic pain story. I hope it helps others understand what it is like to live with in pain. You are not alone.
Failing, Succeeding, Pausing, Deciding and Thriving with Chronic Illness
Failing, Succeeding, Pausing, Deciding and Thriving with Chronic Illness – Read about how I’m managing my chronic life and learning from it every day.
Surviving the Holidays with Chronic Illness
The holiday season for chronic illness warriors is stressful and hard. Here are some tips on surviving the holidays with chronic illness without flaring.
Chronic Illness Prompts: Meeting, Advocating, Tweaking, Working, Curating
Chronic Illness Prompts: Meeting, Advocating, Tweaking, Working, Curating – What chronic illness bloggers write about when given writing prompts to write about their chronic lives.
Invisible in Taiwan: Living in Taipei with Chronic Illness
Invisible in Taiwan: Living in Taipei with Chronic Illness – What it’s like to live in Taipei and New Taipei with chronic illness and mobility challenges.
Figuring, Completing, Boring, Cuddling, Chatting – August 2018 Linkup Party for People with Chronic Illnesses
A Chronic Voice hosts a link-up party each month for those of us who are chronically ill. Sheryl’s writing prompts for August are: Figuring, Completing, Boring, Cuddling, and Chatting.
Mobility Challenges and What An Exoskeleton Can Do For You
The day I got a call about testing a robotic exoskeleton designed for assisting people with mobility issues was life-changing. We knew things would be difficult for us when I got sick, but we didn’t know I’d lose the use of my legs. My life changed with KEEOGO.