Posts Tagged ‘Patient Voice’
For the Missing
I went missing years ago Some don’t even know That I spend most days away, inside And then my illness doesn’t show I can’t show all the pain I feel Or fogginess or dread No one sees my energy gone Or the tears I often shed It’s not that I’m just tired Or need to…
Read MoreEmpowerment Through Preparation
Living with ME/CFS or fibromyalgia, important, energy consuming events can be absolutely overwhelming and impossible. In September’s education meeting, Linda Milne – a longtime patient and community member of the Bateman Horne Center – shares her knowledge about preparing for natural disasters, travel, and volunteering while living with chronic illness. Empowerment through Preparation Medical complications…
Read More“Normal Town”
One morning three years ago, I woke up early determined to do something “that normal, healthy” people do. I donned a t-shirt and sweats, went to the gym, and jogged on the treadmill for 20 minutes. No big deal, right? Think again. The aftermath of my 20 minute stay in “Normal Town” earned me a…
Read MorePass or Fail? A Young Patient’s Perspective
Written by Brooklyn Ingram, a young person with ME/CFS, this blog post describes her refusal to be defined by a disease. Read more of her blog Future Dead Person here. We live in a culture that demands clearly defined roles for every individual. I see these roles in my own life, and I hope you see them…
Read MorePatient Voice – Meditate to Find Peace
Three years ago, Megan Hastings began most mornings with a quick run and some meditation. Today, the effects of her illness make running impossible, but she finds she can meditate to bring comfort and peace. The practice helps her to reduce stress, increase self-awareness, happiness and acceptance. Megan, mother to three and devotee to her best friend, has a…
Read MoreMay 12 ME/CFS FM Awareness Day Celebrates 25 Years
On May 12th, individuals around the globe will be celebrating International ME/CFS and Fibromyalgia Awareness Day and 2017 marks the 25th anniversary. The May 12th date was chosen because it is Florence Nightingale’s birthday and she was believed to have suffered from ME/CFS. Every year a number of events are held to celebrate and highlight May 12th…
Read MorePatient Voice – Look For Surprises
Still reeling from her diagnosis, Nicole shares how three surprises took her down a path that led her to help, hope and BHC. Nicole Paolucci Rabanal is a wife, mother, friend and physical therapists from Steamboat Springs CO. Upon returning to health she looks forward to living her life fully again as a wife, mother,…
Read MoreLiving With a Partner Who Has ME/CFS or FM
Chronic illness and marriage is a complicated combination. It’s rare to see or hear a healthy spouse’s perspective on their partner’s disease because it is a topic that can be very difficult – as much for the one speaking as for the one hearing it. With an estimated divorce rate as high as 75% among…
Read MoreTips for Carepartners
When Someone You Love has ME/CFS or FM There are many diseases that can be considered invisible, but there are substantial differences in how individuals are viewed culturally and socially, depending on their diagnoses. Diabetes, lupus, MS, and others can be invisible illnesses, but few would ever question the limitations of someone with one of…
Read MoreHelp Improve the CFSAC FAQ
The Chronic Fatigue Syndrome Advisory Committee (CFSAC) provides advice and recommendations to the Secretary of Health and Human Services (HHS) through the Assistant Secretary for Health on issues related to myalgic encephalomyelitis and chronic fatigue syndrome (ME/CFS). You can learn more about CFSAC by reading the committee charter and reviewing past recommendations the committee has sent to the…
Read More