Personal Stories

Developing Chronic Fatigue Taught Me To Live In The Moment

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  By Chloe Cooper in Voices.   In early January 2019, I was doing what I do every year – reviewing my achievements of the past 12 months and setting my goals for the year to come. Like countless others who go through the same process, this felt like an essential step to becoming the […]

30 Years Beyond Comprehension

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  From A Life Hidden.   Today is the 30th anniversary of the day I became ill.  How surreal those words sound, even after three decades spent adjusting to them.  My illness now accounts for three quarters of my life: a span of time so vast that it defies comprehension. When I fell ill as […]

M.E. Just Cut And Paste….

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  M.E. – JUST CUT AND PASTE….. Hair’s a mess, can’t get dressed Can I shower, that’s the test Done ok, the shoes are on Now where the hell’s my energy gone? Another day has been a waste Another day just cut and paste. Can’t get the hang of doing nowt Want to do, wanna […]

The Hollow Man

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  By Andrew O’Connor in ABC News.   The catastrophic collapse of Tony Wallace’s life began slowly and silently. An episode of flu. A persistent illness. A feeling of fatigue. A sense something was not so much wrong, as not quite right. Over time, his ambiguous symptoms have morphed into a condition that defies medical […]

Stop Assuming I’m Not Disabled Just Because I Don’t “Look Disabled”

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  By Rachel Carrington in Rooted in Rights.   I park my car in a parking space reserved for those with disabilities. My door is barely open before I’m confronted by a woman who demands to see my handicap parking placard. Her mother is disabled, and she needs the space. I point her toward my […]

When The Triggers For Your Illness Are Constantly Changing

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    By Lisa Alioto in The Mighty.   For the past six years I have lived with myalgic encephalomyelitis (ME). It’s a multi-system disease that affects the neurological, endocrine, immune and energy metabolism systems. Its hallmark symptom is post-exertional malaise (PEM). PEM is a reduction in functioning and a severe worsening of symptoms after even minimal exertion. […]

How I know ME/CFS* Is A Physical Illness

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    By Una Hearne.   Introduction I am writing this to put a final nail in the coffin of the idea that ME/CFS is a psychosomatic issue; that it is ‘all in the mind’. Having both the physical illness ME/CFS (from age 16) and the mental illness Depression (since birth), I am in a […]

We Celebrate The Life And Legacy Of A Warrior For ME

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  From #MEAction.   It is with heavy hearts that we share the passing of ME community advocate, Cindy Siegel Shepler. Cindy lived with myalgic encephalomyelitis (ME) and multiple other health issues. She dedicated much of her increasingly limited time and energy to advocacy, increased awareness, and increasing research funds for ME. She had a […]

A Blue Badge And Invisible ME

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    Gone from being life and soul Health gone down a huge black hole Rarely getting out too far Too much pain is the bar A blue badge now has rescued me When strength allows, it sets me free It gets me to a needed door Which was out of my aching reach before […]

Living With An Unsociable Illness

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  From the Not Just Tired Blog.   As I’m writing this post, I’m sat in bed, having to take time out to rest, whilst we have a family member staying with us for the weekend. Enjoying listening from afar to the lively chatter, yet not a part of it. Would I not rather be downstairs, […]

Tips On How To Survive The Festive Season

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  By Jo Moss in A Journey Through The Fog.   Christmas can be a particularly hard time of year for people living with chronic ill-health. It can be a mental and physical strain, filled with potential pitfalls. I have to admit I’ve never been a Christmassy person. We (my family) didn’t celebrate Christmas when […]

Resting When Tired Isn’t Lazy – It’s Self Care

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    By Jo Moss in A Journey Through The Fog.   Since my heart procedure 2 weeks ago, it feels like I’ve done nothing but sleep. I know I should be thankful my poor, exhausted body is finally letting me rest, but I’m struggling with the notion that I’m just “being lazy” and the […]

Trial By Error: Fiona Godlee Doubles Down On Lightning Process Study

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      By David Tuller, DrPH. Earlier this week, Dr Fiona Godlee, editorial director of BMJ, e-mailed me in response to concerns expressed about the study of the Lightning Process published in Archives of Disease in Childhood, one of the journals under her purview. Those concerns were expressed in an open letter to her […]

Christchurch Chronic Fatigue Syndrome Sufferer Told It Was All In Her Head

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  By Oliver Lewis in stuff.co.nz.   An estimated 16,000 to 20,000 people in New Zealand have chronic fatigue syndrome. Despite this, the debilitating condition remains poorly understood. OLIVER LEWIS reports. Gillian Watson calls it the year she forgot. The Christchurch woman was struck down with flu in the latter half of 2015 and never really […]

7 Ways To Tackle Low Self-Esteem With Chronic Fatigue Syndrome And Fibromyalgia

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  By Colleen Downey in The Mighty.   Self-esteem is generally described as the degree of regard or respect individuals have for themselves and is a subjective measure of worth that we place on our abilities and judgments; it is an understanding we create of our worth based on emotions and beliefs about how we […]

International Day of People with Disabilities: Hannah Dines – Why I’m sick of ‘inspiration porn’

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    By Hannah Dines in BBC Sport.   It happens time and time again in Paralympic sport that the story is chosen for us. Our disability is the negative comparison that makes our positive sporting performance legitimate. We cannot have one without the other. The irony here is that for many Paralympians, their disability […]

You Don’t Look Sick: ‘People Think I’m Too Young To Be Disabled’

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    By Laura Abernethy in The Metro. ‘But you don’t look sick’ is something that people with chronic illnesses often hear. Others judge them based on their idea of what disability looks like. Our series speaks to a different person each week about their experiences of living with a long term condition and how […]

Disabled People Like Me Are Being Forced To Battle Daily For Our Most Basic Needs

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  By Susan McKinstery in Huffpost.   I was born in 1981, the year declared “International Year of Persons with Disabilities” by the UN. It heralded the beginning of the “Decade for Persons with Disabilities”, which saw the beginning of what would go on to become landmark equalities legislation and political policy making. The intention for […]

York Disability Forum

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  Today I’ll be attending a meeting to see if creating a York Disability Forum will be helpful in giving us more of a voice in the area.  I’ll report back on here as to how it goes. If you’re in York and want to let me know of any good, bad or indifferent stories on […]

Ask About My Disability If You’re Curious, But Don’t Patronise Me

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    By Samantha Renke in the Metro.   As a disabled woman, I’ve sadly become somewhat immune to overt forms of aggression and discrimination. I almost expect the lift to be out of service whilst shopping. I also acknowledge that my work prospects are diminished in comparison to my non-disabled peers, and that it’s highly […]

‘They Think Disability Is Almost Worse Than Being Dead’

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By Kate Scotter in BBC News.   “I won’t let you make me feel bad for the things I cannot do, I am tired of being talked over by people like you.” To watch Tilly Moses perform her folk music on stage, there are no visual clues she’s disabled – although the message is there […]

What An M.E. Crash Feels Like

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    From the Mummying And M.E. Blog.   NB: This is just my experience of an M.E. crash. This description is not going to be the same for everyone. My daughter is talking to me this morning, but I don’t understand what she’s saying. My husband has been doing the washing up downstairs, opening […]

Don’t Fight The Quicksand

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From Lorem Ipsum Life   When I was a kid I thought quicksand was going to be a much bigger problem.* Weirdly, as inaccurate as the movie depictions were of quicksand, they make an excellent analogy for activity and ME. TV and movies taught me that if I fall into quicksand, the worst thing I could […]

A Trial Of ME – Elizabeth’s Story

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  By Elizabeth Thorne in #MEAction. This is me, my story, I am one of the millions missing. I may not look ill to you, but if you see me, it will be because I am having a ‘good’ day because I am well enough to be able to get dressed and leave the house. […]

5 Things Councils Can Do To Make Areas More Accessible

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    By Heather Lacey in AccessAble.   As the world becomes more and more connected, we are increasingly fortunate to have the potential to explore more of what the UK’s towns and cities have to offer. Getting out and about to enjoy the activities and attractions that our Towns and Cities have can be […]

Trial By Error: “Bristol, It Is Time To Withdraw Your Complaints To Berkeley”

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    By David Tuller, DrPH I have sent the following letter to Jane Bridgwater, Bristol University’s director of legal services and deputy university secretary. ********** Jane Bridgwater Director of Legal Services and Deputy University Secretary University of Bristol Bristol, UK Dear Ms Bridgwater: I have raised multiple concerns in recent years about research conducted […]

My Typical Day As A Chronic Fatigue Blogger

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  From the Mummying And Me Blog.   Want to know what a day in the life of a chronic fatigue blogger looks like? Here I will try to sum up what my days look like during the week. Why did I choose to write this article? When I’ve spoken to friends and family about […]

Breaking Through The Stigma Of Chronic Fatigue Syndrome

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  On Mornings with Kia Handley.   It’s more than just being tired. It’s got nothing to do with being lazy or making things up or being a hypochondriac. Life with Chronic Fatigue Syndrome is full of stigma and frustration. So what is it like? Nelly Thomas, comedian and author, is a mother to a […]

The 20 Best Supplements For Pain & Fatigue

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    By Jo Moss in A Journey Through The Fog.   Pain and fatigue are probably the two most common symptoms across a whole host of medical conditions. It is estimated that around 43% of people in the UK experience chronic pain – this equates to 28 million in the UK alone. In the […]

Hello, Is It Me You’re Looking For ?

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    HELLO, IS IT ME YOU’RE LOOKING FOR ? I’m sure you know the feeling I’m sure you know the score Hit with ME, you soon get to see How things are not as before I hoped my friends would stay with me I seriously thought they would I thought that they’d care And […]

Dr Byron Hyde ME Expert

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By Wendy Boutilier in Global Advocates 4 Myalgic Encephalomyelitis.   Dr. Byron Marshall Hyde studied pre-medicine in the Faculty of Medicine, University of Toronto followed by a degree in Chemistry and Nutrition in 1961. His first medical employment was as an immunological research chemist at the Roscoe B. Jackson Laboratory, Bar Harbor, Maine – a leading […]

Chronic Fatigue Syndrome: Gradually Figuring Out What’s Wrong

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  By Anthony Komaroff, MD in Harvard Health Publishing.   In 1983, a health professional in her 30s walked into my office and said, “I’ve been healthy all of my life. A year ago, I came down with some kind of virus — sore throat, aching muscles, swollen lymph glands, fever. My fatigue was so bad […]

Challenging Insensitive Comments And “Who Has It Worse” Competitions

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  By Jo Moss in A Journey Through The Fog.   “Life is not a competition. Life is about helping and inspiring others so we can each reach our potential.” Does anyone else feel like they have to bite their tongue a lot? Do you hide a lot of what you are feeling because confrontations […]

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