Personal Stories

A Letter To My Nearest And Dearest

Blog

  From the Mummying and M.E. Blog.   To my wonderful friends and family (you know who you are), I want to attempt to say thank you to you all but also sorry at the same time by writing this open letter. I’m not entirely sure I’ll manage but here goes. For those who haven’t […]

‘Amazing Friend’ Raising Money To Highlight ME

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  By Alexandra Bánfi in Cambrian News.   Two old school friends are on a mission to raise awareness and money for a “forgotten disease”. Mair Squire and Melissa Davies met at school in Newcastle Emlyn at the age of 11. Melissa now lives in Aberystwyth with her son Edwyn Bywood who, at the age of 15, […]

Fatigue And ME

Fatigue

Fatigue And ME I have a worry on my mind That spins my head around It causes grief, it’s beyond belief And an answer must be found It’s about a word that’s used a lot A word filled with intrigue Not beat, not weary, not tired or wired But that bleedin’ word fatigue ! It’s […]

16 Things People Don’t Realize You’re Doing Because Your Pain Is Constant

ChronicPainManagement

  By Veronica Vivona in The Mighty.   Living with constant pain can be extremely frustrating. When you don’t feel comfortable, you might develop some habits designed to make things more manageable. You might have back pain that makes it hard to sit in certain chairs. You could potentially have widespread pain that makes it difficult to […]

Do You Ever Feel Like Giving Up ?

Lost

    By Jo Moss in A Journey Through The Fog.   Do you ever feel like giving up? Do you ever feel like you don’t have the strength to keep going? Do you ever feel like screaming; “I didn’t sign up for this”? Do you ever feel like the world is against you? Do […]

Protecting Yourself From Coronavirus Is Proving Harder For Disabled People Like Me

Disability

  By Chloe Tear in Huffpost.   It feels like every headline you read now is about coronavirus. With the virus causing concern and costing lives worldwide, it isn’t surprising. But it’s important that we talk about what that concern looks like if you’re disabled. We already know those with pre-existing conditions, like me, are more […]

Inside I’m Dancing

Dancing in the Rain

By Chloe Leanne Brooks in M.E. Support.   I used to live by the motto “Don’t wait for the storm to pass, learn to dance in the rain” – but unfortunately, in my life this is no longer the case. My life is stormy. I can’t dance through this pain and heartache any more because my body […]

I Want To Work Out But Most Gyms Don’t Cater For People Like Me

Samantha Renke

By Samantha Renke in the Metro.   I remember sitting in the cafeteria of my first ever job in London. I’d moved down from a quintessentially Northern, rural town to pursue the bright lights and see what the capital had to offer. As I sat nibbling on my peanut butter sandwich, I asked the lady opposite […]

My M.E. MOT

Doctor

    My M.E. MOT   Woke up today It’s not gone away This beast, it’s here for good Thought maybe a dream But a nightmare it seems I’d sleep through it all if I could.   As another day dawns There’s something more going on The pain’s a bit harder to stand It’s tougher […]

M.E Myths Debunked: Part 1

myths

  By Lorna McFindlow in the Cream Crakered Blog.   Two years ago, when I was diagnosed with M.E, I knew a little about it because a friend of mine had it, but other than that I was clueless. From what I was told at the time of my diagnosis, I understood that I was […]

What It’s Like Living With Chronic Pain In Your Twenties

Chronic Pain

  By Kate Harveston in Thought Catalog.   I’ve always looked at posters showing the impact of cigarette smoking on the inside of the lungs and thought that if I could figure out a way to illustrate how I feel on the inside when I look fine on the outside, the image likely would turn […]

To Sleep At Last: A Good-bye To Darden Burns

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  By Cort Johnson in Health Rising.   “It comes down to the simple fact that I do not have enough energy to sustain my recovery. I am not sure that everyone in the CFS is like me, maybe I’m an outlier or just have a unique presentation of the condition. In any case I […]

Coming To Terms With Sleep Disturbance

Sleep

  By Pippa Stacey in CareCo Mobility News. With March being National Bed Month, I thought I’d use today’s piece to discuss my experiences with a natural human function that continues to evade me… sleep. Y’know what’s really fun? Having a long-term condition that causes chronic fatigue, and yet simultaneously impacts your ability to achieve restorative […]

To The People Who Assume I’ve ‘Stolen’ My Disability Parking Permit

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  By Bree Hogan in The Mighty.   I can walk, but I can’t walk very far, and it’s always with pain and fatigue. I can stand, just not for very long. I use a mobility scooter — a small version of an electric wheelchair — and walking sticks.  Limited as my mobility is, I’m still made […]

My Story – Living With Severe M.E.

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  By Jo Moss in A Journey Through The Fog. Foreword: Myalgic Encephalomyelitis (M.E.) is an incredibly isolating and debilitating condition but I don’t want your sympathy, that’s not why I’m writing this piece. All we (the M.E. community) ask is for understanding and education. We want to be taken seriously by medical professionals and […]

My Disability Is Dynamic

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  By Brianne Benness in Medium. Maybe the media has led you to believe that all disabilities are visible and static. Disabilities caused by chronic illness can be anything but. The relationship between chronic illness and disability can be a complicated one. Not everyone who is disabled is chronically ill, and vice versa. And when I […]

Chronic Fatigue Syndrome: Living With An Invisible Illness

BBC News

  From BBCNews.   Lorna Bryson, 25, suffers from Myalgic Encephalomyelitis (ME) also known as chronic fatigue syndrome. The illness means she has a low immune system, gets headaches, sore muscles and joints, and needs at least 12 hours sleep every night. Doctors didn’t believe there was anything wrong with Lorna growing up as she […]

It’s OK You Admit Your Chronic Illness Sucks

Frustration Chronic Illness

  By Kalee Oravec  in The Mighty. I’ve been sick my whole life. I’ve never been able to keep up with my friends because of fatigue, and my pain interfered with all of my past hobbies. You might think I’m used to it by now, but I’m not. No, it still sucks. A lot. It sucks because I […]

Mum Launches Petition To Reopen Historic York Shop

YorkMix

  From YorkMix. A mum whose dream of reopening an historic York shop could be dashed by planners has launched a petition to support her cause. Last August Sara Winlow bought the property which used to house South Bank Stores on Balmoral Terrace, close to the racecourse. The shop had long since closed, and she […]

ME Awareness On BBC Radio York – Update

Radio

The deed has been done. Recording was done earlier today. I didn’t manage to cover everything, but hopefully enough to raise a bit of ME Awareness.  Confirmed it will be on after 9pm on Friday 21 Feb; probably too late for some unfortunately. BBC Radio York 103.7 FM.#MEAwareness

ME Awareness On BBC Radio York

Radio

I’m hoping to be on BBC Radio York on 103.7 FM on Fri between 7 and 10 pm.  As my head doesn’t always work properly at that time of the day, they’ve kindly arranged for a pre-record on Thur afternoon.  I just hope I manage to put some sensible words together about ME ! #MEAwareness.

It Can Be Hard For Men Of My Generation To Talk About Their Feelings

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By Mandy Appleyard in The Telegraph.   Older people face a crisis of loneliness but even a quick chat can make a big, big difference. Here’s how JJ and Steve formed a connection through Age UK Bromley and Greenwich JJ, 80, is a retired construction worker from Eltham in London When my wife Madeleine died, […]

The Identity Crisis: Am I Defined By Chronic Illness ?

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      By Rhiann Johns in Brain Lesion And Me.   Often chronic illness sneaks into your life, like a thief in the night. It takes everything that once defined us; stealing our identity and imagined futures. For those, like me who have suffered from symptoms associated with illness for most of their life, […]

Changes Promised To Cut Stress Of PIP Assessments

Benefits

  By Lauren Harte in the Belfast Telegraph.   Communities Minister Deirdre Hargey has vowed to improve the process for those applying for Personal Independence Payments (PIP) following a call to make the troubled system “fair and accessible for those who genuinely need it”. When PIP was introduced in Northern Ireland in 2016, replacing Disability […]

To Those Who Find My Illness ‘Hard To Understand’ When They See Me Smiling

Chronic

    By Tiffany Early in The Mighty.   My husband and I had a conversation about how others perceive my illness the other day. It wasn’t a confrontational conversation — it was more the random musings that happen when you’re waiting for dinner to come out of the oven. Joe mentioned that a mutual friend had once […]

You Don’t Look Sick: What It’s Like Living With An Invisible Illness

Invisible Illness

By Laura Abernethy in Metro.   A year ago, we launched the You Don’t Look Series. Over the last 12 months, we’ve chatted to people from across the UK about their experiences of living with an invisible illness. Most people have symptoms almost every day but because their condition is hard to see, they are […]

Whatever You Do Today, Let It Be Enough

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    By Jo Moss in A Journey Through The Fog.   I wrote this post especially for ProHealth Inspirational Corner and it first appeared there on the 11th March 2019. “Your worth is not measured by your productivity” We live in a society that teaches us that unless we are pushing ourselves outside our comfort zone, […]

Support For ‘Amazing’ Campaigner Whose Vital Legal Case Could Help Thousands

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By John Pring in Disability News.   Disabled campaigners travelled from across the country this week to show support for a fellow activist as she took on justice ministers in the high court over the ruinous costs disabled people can face when they take disability discrimination cases. If she wins, Esther Leighton could give hope to thousands […]

What No One Tells You About Being Housebound

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    By Hannah Radenkova in Super Pooped: Adventures for the Exhausted.   Whether you’re housebound some or all of the time, here are some things you might come across. 1. Time loses all meaning. The five years I’ve been housebound feels simultaneously like no time at all, and an eternity. I regularly get my own […]

You Don’t Look Sick: ‘You Might Think I Look Better But I Still Feel Horrible Every Day’

Frustration Chronic Illness

By Laura Abernethy in The Metro. Amy Norris, 23, from Southampton has postural orthostatic tachycardia syndrome (PoTS) and chronic fatigue syndrome (also known as myalgic encephalomyelitis) (CFS/ME). As part of our, You Don’t Look Sick series about invisible illnesses, Amy chatted to Metro.co.uk about living with both conditions and how most people still don’t understand chronic […]

“The Tompkins Effect” at Harvard University: More Than Just An ME/CFS Research Center

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  By Cort Johnson in Health Rising.   The Ron Tompkins Effect Ron Tompkins had recently come back from a meeting with over a dozen MD’s and specialists from Mass General Hospital who’d evinced a strong interest in ME/CFS. Dr. Bateman has said it’s easy to get researchers, at least, interested in this disease but […]

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 […]

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