Yesterday I watched a video interview with Kristen Kish, whom I discovered via Iron Chef. Apparently her mentor put her up to compete in Top Chef – she was reluctant to, but her mentor said that there needs to be representation of women chefs on tv. I found myself nodding vehemently along with that remark,...| Winnie Lim
It’s common advice to drink more water for energy, appetite control and clearer skin – but researchers have now demonstrated that hydration plays an even deeper role in health. It influences how our bodies react, hormonally, to stress, keeping cortisol in check and in turn lowering the risk of many…| New Atlas
The initial results of the Decode ME DNA study have been released. And it feels like our birthdays and Christmases have come early! I think I’m still shaking after reading the results last night, but have given all I’ve got to throw together a post to mark this, surely, historic occasion. The DecodeME team is […]| 'M.E. myself and I' by Anna Redshaw
Content note: childlessness, pregnancy, weight gain, diet, menstruation, surgery The good luck card I received from some excellent friends Before I had my surgery, I struggled to find anyone (…| 'M.E. myself and I' by Anna Redshaw
When we talk about long-term health conditions, the focus is often on the physical symptoms such as what the body can no longer do, what treatments are needed, how to manage flare-ups or fatigue. These are very real and very visible struggles. But there’s another side to long-term illness that often goes unspoken: the emotional […]| Mind & Body Works
Three new books examine care not in terms of rights-based independence models but rather new modes of caring. The post Will “Care” Save Us? appeared first on Public Books.| Public Books
Three months later, I wearily pulled into a motor lodge somewhere in Pennsylvania. I don’t remember the name of the…| Legacy Book Press LLC
2003 The warm Colorado sun kissed my cheeks as my boyfriend Jim and I loaded onto a chairlift. I raised…| Legacy Book Press LLC
1997 My sandals squeaked in the soft sand as I made my way across the beach toward the water-skiing cove.…| Legacy Book Press LLC
Living with chronic illness means managing symptoms that vary day to day. Eating a colorful diet may offer real support.| Emily Suess
CW: childlessness, mental health I have seen a private counsellor, on and off, since early 2019. Until then, I would honestly say I coped magnificently with having to live life in the restricted way I do. I let myself feel my feelings, but always somehow came back to gratitude and contentment. That changed in late […]| 'M.E. myself and I' by Anna Redshaw
[tw warning: suicide ideation] Yesterday I had another episode where I spent hours crying. This actually feels embarrassing to write, but intellectually I think it is society that conditions us to think that crying is embarrassing. I also feel like it seems wrong to keep writing posts about my sadness, but why is this so?...| Winnie Lim
I’ve been trying to figure out what it all means. I mean my life these days. What does it mean to be ill, to be mostly fatigued, to be compelled to rest most of the hours of my days? I wasn’t sure what photo could go with this question, and then I happened to see […]| Finding Our Way Home
Mom! Dad! Something keeps biting me!” one of our children yelled. We ran into the family room to investigate what was happening. As soon as I realized the cause, I froze. Fleas! Nope, no way, …| Set Apart
In my 5+ decades of living with rheumatoid arthritis (RA), I’ve learned that setbacks are inevitable, whether caused by flares, difficulty finding effective treatment, overdoing it, or injuries. Once the flare ends or an injury improves, you need to build back your strength and stamina, but sometimes exercise can be complicated by the state of…| The Seated View
Motivation is your get up and go, determination, the drive and interest in doing something. Whether it’s exercise, brushing your teeth, writing (or reading) a book, painting a picture or wall, making that call to your insurance company, or simply getting out of bed on a high-pain day. All of it takes motivation. One of…| The Seated View
In a new monthly feature for HealthCentral, I provide snackable summaries of all the information that impacts your chronic life. This is November’s edition: “Grab yourself a hot beverage and get ready to click through some news you can really use. HealthCentral rheumatoid arthritis (RA) columnist Lene Andersen offers her monthly roundup of must-read news…| The Seated View
Going to yet another medical appointment, waiting for hours, andall the rest that comes with chronic illness can make you feel like a number. In this column for HealthCentral, I share tips for person-first care at the doctor’s office: ““See how the vocal cords are stiff? This is common in people with rheumatoid arthritis or…| The Seated View
Chronic illness treatments, chemo, and radiation can leave the body in a constant state of tension causing stress and alignment issues.| Emily Suess
The JKP Writing Prize for 2025 has just been announced with a theme of disability. JKP are the publishers of the books that we write together with Alex. They recently published Alex’s edited collection – Trans and Disabled – which including a chapter by us on plurality. The JKP Writing Prize is a competition for aspiring […]| Rewriting The Rules
10 items that weren't on any college packing list that my friends and I used frequently when I lived in a dorm and still use today. Nine items are under $50| Veroniiiica
Recently, I had the opportunity to give a talk at the Inclusive Design 24 Conference (ID24) called "Why Everyone Should Design For Chiari Malformation," in| Veroniiiica
How do blind people use the bathroom? How do visually impaired people take a shower? With assistive technology and strategies for accessibility like these!| Veroniiiica
A rice wine native to the Philippines has grabbed the attention of researchers looking into new, natural ways to slow biological aging. But it's not the wine itself – sorry – in the spotlight, but what's left over after the liquid is ready to bottled.| New Atlas
This article was first published in German: Citizen Sleeper: Chronische Erkrankungen als Glücksspiel Explaining chronic illness in a game without sounding boring, annoying, or at worst both, can be extremely difficult. Citizen Sleeper and... Der Beitrag Citizen Sleeper: Chronic Illness as Game of Chance erschien zuerst auf Language at Play.| Language at Play
It’s been another whammy of a week. I had been feeling better from the ulcerative colitis, and the several days of rest really seemed to help. The new strain of marijuana really helps with my…| Leah's Books
A holistic patient advocate looks at the root causes of illnesses. They support adjustments to nutrition, movement, and mindset. Independent health advocate| Emily Roach Health Coach
“No matter how well you prepare you can’t guarantee that every doctor’s visit will go smoothly, but you can promise yourself not to suffer in silence. Advocate for yourself and for those that feel they can’t.” The post The Future of Vaccine Research: How It’s Shaping Your Health appeared first on GHLF.org.| GHLF.org
The Up-End Migraine Project reveals key gaps in episodic migraine care, aiming to drive change and improve treatment options for patients through insights from both providers and patients. The post New GHLF Survey Aims to Identify Areas for Improvement in the Treatment of Migraine appeared first on GHLF.org.| GHLF.org
“I couldn’t just ‘bounce back’ because my condition wouldn’t allow it. Living with chronic illness goes beyond what my usual coping strategies and support network can handle.” The post How Mental Health Support Changed My Journey appeared first on GHLF.org.| GHLF.org
University is challenging, especially for students with chronic illness. Get advice from students who balance academics and health issues.| GHLF.org
Get the facts about common vaccine myths so you can make more informed and confident health decisions. Learn more.| GHLF.org
Our house isn’t best situated for seeing the beauty of sunrise or sunset. Too many trees and buildings. But the other morning, when I opened the blinds in my room, I saw this outside my windo…| Finding Our Way Home
When I was in high school, I sometimes had difficulty explaining how common technology behaviors or other technology in the classroom would hurt my brain,| Veroniiiica
Learn how social isolation affects men’s mental and physical health and what can be done to build stronger, healthier connections.| Male Health Review
The myth of alkaline diet for cancer persists despite the evidence. Here's the full story and synopsis of the data.| Heather Cooan
Let's discuss the mental side of chronic illness running, from motivation strategies to the double-edged sword that can be resilience.| The San Francisco Marathon
Learn how vaccine policies safeguard public health, protect those with chronic illnesses, and why patient advocacy is essential for driving meaningful change. The post Advocating for Better Vaccine Access and Education appeared first on GHLF.org.| GHLF.org
I couldn't sleep last night. Had insomnia the last two nights, really, but it was severe last night. I was awake at 3:00 a.m.| Emily Suess
My favorite tips for choosing new devices with Chiari Malformation and similar conditions, and how to find devices that are comfortable to use| Veroniiiica
I have a neurological condition that's triggered by strobe and flashing lights. Here is how my teachers and I handled photosensitivity in the classroom| Veroniiiica
My favorite bedding hacks that make it easier to make the bed and keep it clean and comfortable with Chiari Malformation and other chronic pain conditions| Veroniiiica
Learn how to have meaningful conversations with your provider about vaccines, so you can make informed choices for your health.| GHLF.org
Unwinding Anxiety in practice is something I have to do when the opportunity presents itself. There's no cramming for this life test.| Emily Suess
Tips for choosing a tutoring service for students with low vision or other print disabilities, and how my tutors helped me deal with IEP violations| Veroniiiica
Here are my favorite tips for keeping a dorm room clean with chronic illness and disability, based on my own experiences with Chiari Malformation| Veroniiiica
Aside from aggressively pursuing overpayments, the DWP has also been harassing Carer's Allowance claimants via text message| Canary
Ex-DWP boss Iain Duncan Smith's Centre for Social Justice (CSJ) has launched two new reports & seems set to appear at the Labour conference| Canary
Believe it or not, Paralympics GB has made one of its own campaigns inaccessible to over four million disabled people| Canary
How to create a disability services file for receiving disability accommodations in college, since IEPs do not transfer to college and 504 plans need additional documentation| Veroniiiica
Tips for managing chronic migraines in college and my experience as a college student who had a migraine every day.| Veroniiiica
I'm not wearing my sunglasses at night! Here is how tinted glasses help my light sensitivity and photophobia with non-polarized colored lenses| Veroniiiica
I have an eye and brain condition triggered by flashing lights. Here is how I talk to professors about photosensitivity and photophobia in the classroom| Veroniiiica
I had an undiagnosed chronic illness for four years in high school that eventually turned out to be Chiari Malformation. Here's how I answered questions that people often asked me about my illness and symptoms.| Veroniiiica
I have Postural Orthostatic Tachycardia Syndrome. Here are the disability and classroom accommodations for POTS that I used in college| Veroniiiica
The Department for Work and Pensions (DWP) is reviewing PIP claimants who it could owe thousands in backdated payments to.| Canary
Apparently, Mpox is a) a plandemic, b) coz of the vaccines, or c) punishment by God. Ergo, don't be Black, Queer, or disabled.| Canary
Daily Mail just fired the starting gun for the new DWP war on disabled people from Canary on 15 August 2024| Canary
August is Gastroparesis Awareness Month. However, two conditions gastroparesis is often found in are also often overlooked: EDS and ME/CFS.| Canary
The coroner in Maeve's case has made the situation for everyone living with this devastating and potentially deadly illness| Canary
Serco has swooped in on another DWP contract worth hundreds of millions - the Restart Scheme that actually harms claimants| Canary
Thursday 8 August was Severe ME Day. After eleven years of annual events marking it, advocacy only reinforced just how little has changed.| Canary
Today is Shades for Migraine Day! It’s part of Migraine and Headache Awareness Month (#MHAM2020) to raise awareness about living with migraine. Post your photo on social media with the hashtag #shadesformigraune and challenge 3 friends!| Chronic Migraine Ellie
It's been a while since I've written a blog here. In the past year, I wrote a thesis that got high honors, graduated college, moved to a new city and started a full-time job, all while navigating my life with migraine disease. I've joined Migraine.com as a writer and Lyfebulb as a patient ambassador. This past week, I co-hosted #MigraineChat with Beth Morton (My Counterfactual Brain) and talked about migraine advocacy. Since Headache on the Hill (HOH) is next week, I wanted to take some time...| Chronic Migraine Ellie
Yesterday, I tweeted about how writing a thesis with chronic migraine has been one of the most difficult things that I've done. It got an outpouring of love and it just so happened to be on a day that I finished the first draft of my body chapters. I was already feeling good, and I'm a month out from my final deadline. But it hasn't been like this for the whole process. I feel like I don't read enough about young adults with chronic illness going through school/university, so I thought that I...| Chronic Migraine Ellie
In June of 2018, I took my first dose of Aimovig, one of the new CGRP medications. I livestreamed on facebook about taking my first dose, posted about how excited I was to try it and then haven't talked about it since. I've always been one of those unlucky people with medications where it either has terrible side effects or it works for a bit and then isn't effective anymore. I was excited to try Aimovig, but also completely terrified. What would happen if it didn't work? Even more terrifyin...| Chronic Migraine Ellie
There's a state that migraineurs know that's an in-between of being functional and non-functional, where you're alive, but not completely there. You're able to complete small tasks and make small talk, but still are forgetful and can't fully focus. It's almost like there's a haze of brain fog surrounding you and no matter how much you rest and sleep and do everything that you're supposed to do, you don't get better.| Chronic Migraine Ellie
It's been a while since I've sat down and written a blog. 2017 was a monumental year for me in so many ways. To start off, I am a lot healthier and more active than I have been in the last 6 years. I participated in Headache on the Hill 2017, which was one of the most exciting and fulfilling experiences that I could have attended. I'll be back this February for HOH 2018! This summer, I lived in Washington D.C. working full-time at a start-up healthcare company named Aledade Inc. at which ...| Chronic Migraine Ellie
Hello hello!| Chronic Migraine Ellie
This week, I interviewed Courtney Kilian, founder of Om & Ink! I am excited to share her story with you all, because she is such a wonderful, positive soul. Her story and her work is also inspiring- and you will see why in her interview! | Chronic Migraine Ellie
Welcome to #MHAM2017, Migraine and Headache Awareness Month! Last year was the first year that I participated in #MHAM. It was an amazing experience, albeit a difficult one, so I'm excited to do it again this year! A couple general announcements: every week I will be compiling the facts, pictures, and infographics and putting them into a blog every Friday. Secondly, there is a new event during MHAM this year that I am a part of that I would love to share with all of you! Shades for Migraine...| Chronic Migraine Ellie
A lot of people ask me how I can be so happy when my life always feels like such a mess medically. Something is always wrong, I always seem to be fighting for something and on top of that my personal life feels like it is always changing, for better or for worse. My mom jokingly calls me Pollyanna because I seem to have such an optimistic view of life for most things. I always say that if I got stuck on the negative parts of my life, I would be constantly depressed. That's not to say that I d...| Chronic Migraine Ellie
After meeting so many amazing and inspiring people from Headache on the Hill and other people| Chronic Migraine Ellie
Every morning, I wake up and assess how I'm feeling. Some days, I can't move from my bed. Other times, I can pull myself up and somehow can get to class. My clothes and my makeup provide a mask that helps me get through the day. I don't know what it is about makeup, but it just helps me to feel like I'm a bit functional. Eyeshadow brightens up my tired eyes. Foundation balances my skin tone, hiding the redness of my skin. Concealer covers up the bags under my eyes, hiding my lack of sleep. Bo...| Chronic Migraine Ellie
A year ago today, I was hospitalized for a blood clot (Deep Vein Thrombosis) in my right upper arm. I wrote about it a week later for my blog, and dealt with the emotions for months after. A year later, I'm still dealing with the emotions and problems associated with having a traumatic medical experience.| Chronic Migraine Ellie
Examples of disability accommodations for graduation and other commencement events for graduates of all ages| Veroniiiica
The Lord is good to all, and His tender mercies are over all His works. Psalm 145:9| Ordinary People Extraordinary God
Tomorrow it will be ten years since the death of my close friend, Emily Collingridge. Can it really be so long? Attaching time to loss often feels strange: it implies distance from an e…| A Life Hidden
This summer I touched the sea for the first time in over thirty years. I sat on the shore and saw waves lap around my wheelchair. I felt the rush of sea air against my face and tasted s…| A Life Hidden
From heart disease to diabetes, arthritis to skin issues, the consequences of chronic inflammation can be life-threatening. However, there is a way to constantly ensure you are protected—to a large extent—from the consequences of inflammation in the body. The use of an anti-inflammatory diet in combating inflammation has been a trend for some years now. […]| Nurse Loves Essentials
Dealing with a chronic illness diagnosis is life-changing, especially when dealing with multiple chronic conditions like autoimmune diseases and mental health disorders. Autoimmune diseases have far-reaching effects on the human body. This might be because of the compromised immune system or the effects of a chronic disease. While autoimmune diseases primarily involve the immune system, […]| Nurse Loves Essentials
Conditions like rheumatoid arthritis, lupus, multiple sclerosis, and Crohn’s disease can disrupt the daily life of anyone. While medical treatments play a crucial role in managing these conditions, there is a growing recognition of mindfulness-based therapy, especially in the treatment/management of autoimmune diseases. It is a holistic and evidence-based approach that has been gaining attention […]| Nurse Loves Essentials
Emerging studies have shown a likely relationship between autoimmune disease and trauma. Trauma can affect an individual’s health and well-being, whether physical, emotional, or psychological. While the link between traumatic life events and mental health challenges is well-established, recent studies have started unraveling the connection between non-life-threatening traumas and the onset or amplification of autoimmune […]| Nurse Loves Essentials
It can be challenging to balance your personal life, career, and caregiving responsibilities as a caregiver. The weight of your responsibilities as a caregiver can sometimes overshadow your needs, leading to neglect of your physical and emotional well-being. This is just one of the many caregiving challenges that plague every caregiver in any part of […]| Nurse Loves Essentials
Learning how to improve medication adherence is a crucial aspect of healthcare for the doctor and the patient. Although its impact on your overall well-being cannot be over-emphasized, sadly, medication adherence is still an underestimated aspect of healthcare. Whether managing a chronic illness, recovering from surgery, or dealing with a short-term ailment, adhering to your […]| Nurse Loves Essentials
One of the best decisions you can ever make when dealing with the impact of a chronic disease diagnosis is getting as much mental health support as possible. If you have ever been diagnosed before, you will understand how important and far-reaching this can be in helping you manage your condition. It is challenging to […]| Nurse Loves Essentials
Are you or someone you care about dealing with the challenges of chronic diseases? The daily battle against symptoms, the rounds of medication, and the relentless doctor visits are a constant struggle. But what if there were a different approach, one that not only addressed your symptoms but considered the entirety of your well-being? Welcome […]| Nurse Loves Essentials
Living with a chronic illness can be a challenging journey with its fair share of hurdles, uncertainties, and disruptions to your daily life. With these disruptions, you are expected to have some low chronic illness productivity days, while others will be better. The struggle to maintain control over your time and tasks while dealing with […]| Nurse Loves Essentials
Finding the right support is key to maintaining your well-being and ensuring the best care for the person you look after. This post will guide you through finding the best support for caregivers like yourself.| Nurse Loves Essentials
Just for my DWP diary, I will quickly note that I had another PIP Assessment two or three weeks ago. The actual appointment was far less awful than I was expecting (though whether or not the report they make from … Continue reading →| yetanotherlefty
