Blogs

An Apology To My Wheelchair

Wheelchair

    From the Creamcrackered.me Blog, dated 11 March 2019.   Around two weeks ago it was International Wheelchair Day and this got me thinking about my relationship with my own wheelchair and the journey we’ve been on together. So, I decided to write a little something about my new identity as part-time (ambulatory if […]

Please Stop Trying To ‘Fix’ My ME/CFS

Mighty

  By Simone DM in The Mighty.   When you become ill, all you want is for others to be compassionate and understanding. Yet when you come down with something like ME (myalgic encephalomyelitis), that not even your doctor comprehends, it’s a different story. Others are quick to pass judgement, believing you are somehow causing your […]

But Make It Accessible: Wax Poetic Clothing

Natasha Lipman

  By Natasha Lipman.   Hello and welcome to my new blog series “But Make It Accessible”, where I speak to brands that are working to create beautiful and stylish clothes that are also accessible. Rediscovering my love for fashion since becoming a wheelchair user has brought a lot of joy into my life, but […]

Practical Solutions To Everyday Spoonie Problems

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  By Jo Moss in A Journey Through The Fog.   Having a chronic illness means everyday tasks can be challenging, exhausting and painful. But there are steps we can take to make life easier, to limit the stress caused and to conserve our energy for more enjoyable activities. Here are some practical solutions to […]

Stress, PTSD And Parents Of Kids With Disabilities

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    By Dr. Liz Matheis  in The Mighty.   As a Psychologist, I am in the business of receiving phone calls from parents worried about their kids with disabilities. During that initial phone call, parents give me a quick run-down of their child’s symptoms, the struggles the family at large is facing, and the specific goals […]

The Secret Of Change: Spend Your Energy Wisely With Chronic Illness

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    From A Chronic Voice.   Chronic illness is a monster consumer of energy, leaving little to spare. Why waste it on unnecessary thoughts and unchangeable circumstances? So I ask myself, “what can I do to make things better? Is there something I’d like to create for myself today? How can I become a […]

The Challenge Of Explaining How I Feel As Someone With CFS/ME

Lonely

      By Emma England in The Mighty.   One of the most frustrating things about living with CFS/ME (Chronic Fatigue Syndrome/Myalgic Encephalomyelitis) is that most of the time, I don’t “look” ill, and so people may not understand the fact that there’s anything wrong with me. CFS/ME falls into the category described as […]

20 ‘Comebacks’ To Use When A Doctor Isn’t Taking You Seriously

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  By Erin Migdol in The Mighty.   When you have an illness that is invisible, complex and/or difficult to treat, that sometimes translates into challenging experiences with doctors. While there are many kind, compassionate doctors out there who are willing to put in the time to figure out your health issues, unfortunately many in […]

Post Twenty Seven. No, I’m Not Tired.

ME

  From the puffins&penguins&me blog.   The ME Association was recently asked by the media to compile a piece describing the difference between having ME and just feeling tired all the time. Given the frustratingly common misconception that ME is ‘feeling tired’, this of course resulted in a lively discussion on their Facebook page, and it prompted […]

Chronic Illness & Boredom – The Real Groundhog Day

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    By Jo Moss in A Journey Through The Fog.   Each month a fellow blogger (A Chronic Voice) hosts a ‘Link-up party’. It is a monthly get-together for anyone with a chronic illness. An opportunity to share, to listen, and to learn from one another. It’s a great way to provide insight into life […]

9 Relatable Comics That Nail What It’s Like To Have Chronic Illness

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      By Michelle Levy in The Mighty.   Getting sick is no laughing matter, but it often takes humor to be able to get through the ups and downs of chronic illness. While some of these comics make us laugh out loud in pained affirmation, mostly they raise awareness of chronic illness, and […]

The illusion You Will Be Forever Able Bodied And The Limits Of Empathy

Coyne

      By James C Coyne.   This is an edit of something I wrote in 2016, which I return to read every now and then. Sometimes I tinker with it, like now. I wrote it soon after I first became a professional advocating for patients with chronic fatigue syndrome and myalgic encephalomyelitis, a set […]

Theresa May’s Disability Announcements ‘Are Just Cynical Leftovers’

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    By John Pring in Disability News Service.   Disabled people’s organisations have reacted with suspicion and some hostility to the outgoing prime minister’s attempt to shore up her “legacy” with a series of disability-related announcements. Although some of the measures announced by Theresa May (pictured) were welcomed, many user-led organisations questioned why she had left […]

Accessible Transport From Disneyland Paris To Paris Gare Du Nord

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  By Pippa  in her Life of Pippa Blog.   Whilst this may be a bit of a niche post, I wanted to share my eventful first experience of public transport abroad as a wheelchair user, travelling from Disneyland Paris to Paris Gare Du Nord. It was a lack of clear information online that prompted […]

How My Life Has Changed Since I Developed ME/CFS

Life Changing Event

  By Lisa Alioto in The Mighty.   When I was me… I always greeted you with a smile. I may have tried to say something funny to put a smile on your face and I was always excited about whatever plans we had for the day. When I was me… I worked out. Sweaty, […]

Why Having ME/CFS Makes Me Dread The Summer

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  By Jo Moss in Journey Through The Fog.   After I read the news that the temperatures in the UK were going to reach 27 degrees this week, my anxiety levels rose dramatically and panic set in. I hoped I would having longer to adjust to the summer – what happened to spring? – […]

ME/CFS Patients Worldwide Face Scepticism And Ignorance From Doctors

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  By Jo Moss in A Journey through the fog.   I would like to take the opportunity, for ME awareness month, to talk about the problems ME/CFS patients like myself face getting a diagnosis, and also the general ignorance surrounding ME/CFS within the medical profession. I know not all doctors are bad, but sadly […]

The Struggle To Balance Between Resting And Using Energy When You’re Chronically Sick

Chronic

  By Chelsea Morris in The Mighty.   Balance! How do we achieve it? I think for any human being balance is very difficult. But for those of us with chronic pain and disease it seems to be even harder. I wake up one day and feel actually pretty good. So I want to accomplish more than […]

The Severe ME Bedbound Activity Masterlist: Part 1

Severe ME

  By Sarah Stanton in Medium.   Living with conditions like severe ME is hard. Gold standard health recommendations like sunshine and exercise simply don’t apply to us. And most of the articles out there suggesting activities for bedbound people assume a higher level of functionality than we generally have. With that in mind, here […]

Disney Made Me Question My Disability

Life of Pippa

  From the Life Of Pippa Blog.   This piece was originally written for Scope’s online community, but I never got around to sharing it on my blog. It was this time last year that we were in Disneyland Paris living our very best lives, so here’s something of a throwback… Something I often consider is […]

Trial by Error: A Letter To Bristol about My Recent FOI Request; Update Added

David Tuller

    By David Tuller, DrPH   UPDATE: Within an hour or two of writing to Bristol, I received a response from the university’s director of legal services. Here’s what she wrote: Dear Dr Tuller Thank you for your email. The Information Rights team is making good progress on clearing the back log, your FOI […]

18 Songs That Were Written About Chronic Illness

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    By Paige Wyant in The Mighty.   Music is often a source of comfort and emotional healing. Many people with chronic illness in particular find that certain songs or genres can be powerful in helping distract them from symptoms and cope with all the stresses and frustrations of life with a health condition. For Mighty […]

The Crash That Follows The Push Of ME/CFS And FM Awareness Day

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  By Jodie Smith in Phoenix Rising.   It’s been about a month since the ME/CFS community pulled out all the stops for our May 12 International ME/CFS and FM Awareness Day. I think we have a great deal to be proud of, and encouraged by. With each passing year this bunch of chronically ill […]

When People Judge Me For Not Working Because Of My Chronic Pain

ChronicPainManagement

  By Lauren in The Mighty.   A “friend” recently said to me, “I may have a guy for you.” She knows I’m single and have been looking for someone special for a while now. We spoke over the phone and she asked, “What do you do? What do you keep busy with? I just […]

Running On Empty – Do Not Pass “Go”

Empty

  By Sam in the My Medical Musings Blog.     We all have moments in life when we hit a brick wall physically and perhaps mentally. It happens to the healthy and chronically ill alike. I remember in my “healthier” life, I’d get to the end of my working week and I’d be exhausted. […]

Why I Think ‘Chronic Fatigue Syndrome’ Is The Worst Name Ever

Fatigue

    By Adele Paul in The Mighty.   Imagine the following conversation… Friend: Heard you weren’t feeling well lately? Me: You could say that. Friend: So you’re just tired all the time? Me: Yeah, and a few other things… Friend: Girl, I hear ya. When I got back from Hawaii in January, it took me […]

Why Are We So Quick To Judge ME/CFS Recovery Stories ?

Recovery

  From A Journey Through The Fog By Jo Moss.   As a community we are very good at supporting each other especially when one of our own is having a particularly bad time with their health. But one thing I’ve noticed, that I find disheartening, is that we don’t give people a safe platform […]

21 People Describe What Sensory Overload Feels Like

Sensory

  By Melissa McGlensey in The Mighty.   Sensory overload happens when too much sensory stimulus is occurring at once — it can be triggered by a crowded room, a TV turned up too loud, strong aromas, fluorescent lighting — or a hundred other things. It’s often associated with certain diagnoses like autism, sensory processing disorder, chronic fatigue syndrome, fibromyalgia, post-traumatic […]

Struggling To Accept The Days When Illness Keeps Me From Doing Anything

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  By Sally Doherty in The Mighty. I’ve had some of those awful days recently (they happen now and then, and more often than I’d like). You know the type: days when instead of your bed being somewhere that you go to rest, your bed becomes a prison that you can barely get out of. […]

My Favourite Chronically Ill Entrepreneurs

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    By Pippa in her Life Of Pippa blog.   I once saw a quote reading “when you buy from a small business, an actual person does a little happy dance”, and it really stuck with me. I absolutely love the sentiment of supporting independent creators, all the more so when I know they’re […]

Older And Poorer Communities Are Left Behind By The Decline Of Cash

Money

  By Daniel  Tischer, Jamie Evan’s and Sara Davies in The Conversation.   A future without cash seems almost inevitable. Recent statistics paint a damning picture: while cash accounted for 62% of all payments by volume in 2006, this dropped to 40% in just a decade and is predicted to fall yet further to 21% by 2026. […]

Trial By Error: A Plea To Fiona Godlee On A Familiar Topic

David Tuller

  By David Tuller, DrPH On Wednesday, I sent the following to Dr Fiona Godlee, editorial director of BMJ. The topic, once again, was the ethically and methodologically challenged Lightning Process study, which was published two years ago in Archives of Disease in Childhood, a BMJ journal. My letter was prompted by the recent appearance […]

Severe ME: I Had To Fight The People Supposed To Help Me

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    by Sam* In ME Australia.    Sam (*not her real name) is a teenager living in Australia’s largest city without access to treatment to help her. Sam was prescribed graded exercise therapy (GET) and cognitive behavioural therapy (CBT) repeatedly. After doing GET, Sam became housebound. Sam now has very severe ME and says […]

Better Treatment Needed For 77,000 British Columbians With ME

Lonely-man

  By Sue Khazaie in The Province.   Imagine you are living the life of your dreams. You have a great job, a happy marriage and love traveling. And then you get sick. Really sick. Soon you can’t work, go out, or perform basic household chores. Within weeks, you are bedridden and totally dependent on […]

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