Personal Stories

17 Things People With Chronic Illness Mean When They Say ‘I’m Tired’

chronic-illness

  By Erin Migdol in The Mighty.   Everyone has said “I’m tired” at one point or another. But those deceptively simple words can have so many meanings. Without knowing the extent of the exhaustion someone with chronic illness is feeling when they say they’re tired, people may think your “tiredness” can be cured by a nap or early night, like theirs, not […]

Almost Half Of Disabled People Fear Being Stripped Of Benefits For Being ‘Too Active’

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    By Rachel Wearmouth in The Huffington Post . ‘You feel that whatever you say may be taken out of context,’ says former Paralympian. Disabled people avoid exercise as they fear being stripped of much-relied on benefits for appearing “too independent”, campaigners say. New research, published by Activity Alliance, says that almost half (47%) […]

The Struggle To Gain Adequate Care While Living With Myalgic Encephalomyelitis (ME)

Disability

    By Corina Duyn in ME Advocates Ireland.   I have been ill with Myalgic Encephalomyelitis (ME) for twenty years. But it is only in the past year, and more so in the past six months that my most basic needs are not being met, at a time when my illness has become more severe again […]

What You Would See If You Looked Under The Blanket Of ME/CFS

Lonely

  By Ali in The Mighty. Sometimes I feel like I am lost, not as in aimlessly wandering and off the track, but as in missing and can’t be found. But I am here, under blankets. Much of the time I can usually be found under an actual blanket on the couch or in my […]

‘Invisible’ Disabilities: Car Park Confrontation Prompts Call For Greater Recognition

Invisible Illness

By Laura Collins and Lucy Robinson in ABC.Net Australia.   Fed up with judgemental looks, comments and confrontations, a young South Australian woman living with a debilitating disease is calling for more recognition of ‘invisible’ disabilities. Key points: Sarah Larcombe has undergone seven major surgeries in nine years She has a disability permit and is […]

This Is Personal: BHC’s Patient-First Perspective

Bateman Horne Center

  By Rachel Black in The Batema Horne Center.   Bateman Horne Center is guided by a board of directors that is intimately connected to ME/CFS and FM. Many have sons, daughters or are themselves managing an illness that has taken much of their life away. The Horne in Bateman Horne Most of you know that our […]

When I Can’t Hide My Chronic Fatigue Syndrome Anymore

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    By Kirsty Hird in The Mighty.   I remember in the late 1990s watching a film about a group of teenagers who dabble in witchcraft, with disastrous consequences. They use a form of magic called a “glamour,” which allows the witches to create an illusion, concealing the true form of something. In the film, glamours are used […]

Woman In A Wheelchair Reveals Ordeal Of Simple Tasks Like Buying New Clothes

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  By Tanveer Mann in Metro.   Today is Purple Tuesday – and no, it’s not yet another day for crazy shoppers trying to bag a bargain. It’s actually pretty serious and is the first of its kind aimed at highlighting some of the challenges disabled people face while shopping. The national day was founded […]

Mother Of Disabled Girl Is Asking Shops To Stop Banning Single Use Plastic Straws

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  By Lucy Middleton in the Metro.   A mother with a disabled daughter is fighting for stores and restaurants to not ‘jump the gun’ when it comes to banning single use plastic straws. Karen Grimwade’s daughter Lucy, 15, was diagnosed with severe Myalgic Encephalomyelitis (ME) in 2015 and cannot drink without a straw. But […]

Shining A Light On Chronic Fatigue Syndrome, A Little Understood Disease Among Doctors

Chronic

  By Jennie Spotila, For the Inquirer.   I recently went to a new doctor. He looked over my chart: “Chronic fatigue syndrome,” he read, and then he glanced up at me. “You don’t look tired,” he quipped. “There, I made it go away.” I’ve been sick for 24 years, and I get comments like […]

Dear Bug… When The Nights Are Long…

Jessica

    By Jessica Taylor-Bearman. My escapades with the change of drugs reached fever pitch three weeks ago, when I rang up the doctors with a blood pressure of 80/50….The dearest junior doctor had told me or more like made me promise that if my blood pressure went under 90/60, that I’d ring for an […]

ME: What You And Your School Need To Know

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By ME Foggy Dog in Innovate My School.   Founder of ME Foggy Dog, ME advocate and ME sufferer. I have raised over £10k for ME research since 2014, and am now in the process of setting up a social enterprise that will offer ME training to healthcare, business and education professionals. I don’t ‘do’ […]

Yorkshireman Achieves His Round-The-World Cycle Dream

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  From The Yorkshire Times.   A former Ripon Grammar School student has achieved his dream of circumnavigating the globe by bicycle after arriving back home in Yorkshire, where his epic 17,134-mile journey began 15 months ago. Iain Johnston successfully completed his monumental challenge when he cycled into his home town of Ripon after pedalling […]

Humans of ME/CFS – Camille C.

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  From Solve ME/CFS Initiative.   I was an elementary school music teacher, community volunteer, church pianist, wife, and young mother when I became ill in March, 2000. My doctor said I had mono and I was totally bed bound. The sickness wiped away my memory and I lost memories of my children as babies, […]

When I Can’t Hide My Chronic Fatigue Syndrome Anymore

Lost

      By Kirsty Hire in The Mighty. I remember in the late 1990s watching a film about a group of teenagers who dabble in witchcraft, with disastrous consequences. They use a form of magic called a “glamour,” which allows the witches to create an illusion, concealing the true form of something. In the film, glamours are used […]

I Can Walk, But That Doesn’t Mean I Don’t Need A Wheelchair

Wheelchair

By Rebecca Giddings in The Mighty. Everyone knows when you are ill, you are in bed and can’t do anything. Obviously this example is great for someone with the flu, but what if you have a chronic illness, an illness that is going to last your lifetime? Are you supposed to just hide away in […]

On Autism & Chronic Fatigue Syndrome

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From Syndrome A.   When I was in second grade, a little girl started calling me Weird One. I was elated. I felt that I had been knighted with some sort of public identity and it felt wonderful. I felt as though I belonged in some way and I hardly ever felt as though I […]

The illness People Can’t See: Living With Chronic Fatigue Syndrome

Lost

  By Hannah Gibson in The Spinoff.   What is it like to have a disease that nobody can ‘see’ and which society can shame you for talking about? To mark International ME/CFS Awareness Day, Hannah Gibson writes about her experience with ME/CFS, and the struggle to have her condition legitimised in Western medicine. When […]

Woman’s Fight To Stop Disabled People Travelling For Benefit Assessments

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  By Emily Hennings in This Is Local London.   Claudette Lawrence, 49, is an activist and campaigner who also suffers with myalgic encephalomyelitis (ME), which can cause extreme mental and physical exhaustion. She has set up the petition because she has recently come into contact with a lot of people who are having problems when it […]

Millions Suffer From An Invisible Disease: My ME/CFS Story

Ryan Prior

  By Ryan Prior in CNN Health.   yan Prior visited 16 doctors with various specialties to identify his illness. Ryan Prior is a cross-platform associate producer at CNN. He has suffered from chronic fatigue syndrome for 11 years. The views expressed in this article are solely his. Atlanta (CNN)Every morning, I shave, brush my […]

Grandma With Severe Chronic Fatigue Syndrome Misses Daughter’s Wedding And Grandchildren’s Childhoods

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  By John Siddle in Surrey Live. The cruel condition affects 250,000 people in the UK. An 80-year-old from Farnham has had to skip every family gathering, birthday and Christmas over the past 20 years after a shock diagnosis of a devastating ‘living death’ illness. Nancy Collins a former NHS nurse was struck down with Myalgic Encephalomyelitis (ME) 20 […]

Playing Nice With NICE

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  From Dizzy Girl Writes.   In view of my last blog post, I have decided to email NICE to talk about my experiences of having ME under the current guidelines and to raise my concerns about their panel. The latest tweets I’ve seen suggest that their panel for the review of guidelines for treating […]

ME/CFS, Naviaux’s Cell Danger Response And A Nervous System Under Threat

Nervous system

    By Veronique Mead M.D. in Health Rising.   Thanks again to Veronique for providing her intriguing take on chronic fatigue syndrome (ME/CFS). This is one of a series of articles from Health Rising which feature hypotheses created by health care professionals with ME/CFS or who are associated with ME/CFS. (It is a long post – you […]

When You’re Stuck In The Middle Of ‘Sick’ And ‘Well’

Lonely

  By Cherilyn Schutze in The Mighty.   Stuck in the middle of sick and well. That’s how I feel. Chronic illness is never easy, whether you are the person who’s sick, or the caretaker or family member of a person with a protracted illness. Before I became ill, I was very busy multi-tasking, care-taking, mothering, wife-ing, and […]

Finding Accessibe Work With A Chronic Illness

Pippa

From The Life of Pippa Blog.   So, let’s talk about working with a chronic illness. Since I started blogging, there’s one question I’ve consistently been asked more than any other: how I got my flexible, work from home job. If you don’t already know, I split my time between employment with a well-known UK […]

The Differences Between Temporary And Chronic Pain

Chronic Pain

By Krista Germanis in The Mighty. Pain and sickness are really difficult things to write about. Trying to describe things you’re feeling, but many people have never dealt with before, is essentially attempting to put pen to paper about the way butterflies feel in the beginning of a relationship to someone who still has yet […]

‘Insight’ On Chronic Fatigue Syndrome: Andrew’s Experience

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From ME News Australia.   Andrew Bretherton was working as a personal trainer, kung fu and basketball coach and finishing a psychology and sports science degree when he became ill. He is now mostly housebound due to ME. He tried graded exercise therapy at a Melbourne clinic where he was blamed for his illness, told […]

10 Things Chronic Fatigue Is Not

chronic-illness

  By Rachel Kassulke in The Mighty.   Being another one of those “invisible” symptoms, chronic fatigue is a tricky little thing to explain and an (almost) impossible feeling for the healthy and energetic to comprehend. I’ve tried to explain how it ‘feels’ here, but much like trying to decipher the difference between pain and chronic pain, trying to explain the difference […]

Mike’s EU Marathons For Invest In ME Research – Bulgaria Report

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By Mike Harley.   Just 5 weeks after Tallinn, I travelled to Sofia in Bulgaria to run their city marathon for number 19 of 28.  With Cat 38 weeks pregnant I had expected to be going solo but one of my good mates, Mike Ward, volunteered to come with me.  I tried hard to find a […]

Why People With Chronic Illness Can’t Simply ‘Push Through’

Chronic

By Alicia Thompon in The Mighty.   It never ceases to frustrate me to realize how pervasive the “Just Do It” culture is. Whenever I discuss my physical limitations with others, I’m often met with the suggestion that I simply need to “push through.” Which leaves me wondering, what does this phrase really mean to […]

‘I’m 33 And Have Been Living In Aged Care For Eight Years’

The Age

  By Ketra Wooding in The Age.   I’m 33 and I live in a dementia ward, which is exactly as bad as you imagine. But I’m not here because I have dementia. I’m here because it is the quietest (except when the residents are yelling), least perfume-saturated ward. I need my environment to be quiet and chemical […]

Blairgowrie Holiday Park: The Perfect Wheelchair Accessible Caravan Holiday

Wheelchair

  ·By  @SIMPLYEMMA2. If you’re looking for an affordable caravan holiday in the beautiful Perthshire area of Scotland, then I know just the place for you. If you want a comfortable and accessible base with peaceful surroundings but close to restaurants, shops and things to do then Blairgowrie Holiday Park could be the perfect wheelchair accessible caravan holiday […]

Living Deeply In Tiny Rooms

Lonely

  By Zeraph Dylan Moore in #MEAction.   Here is a question for you:  Is your life small or large? How do you know? Is it possible to have a big life in a single, small room? Or to lead a small life that is lived in many places? Questions like these have become more pertinent to […]

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