ME Awareness Hour

ME/CFS Awareness, 10 Jan 2018

Sandwiched between 2 hot water bottles, under layers of clothes and blankets, medicated – multiple times, in the dark with sunglasses on, my phone’s screen dimmed and the blue light filter on so that I can bear looking at it for a few minutes at a time. This was me yesterday after I had a nap on the sofa where I toppled over after lunch, in a bundle of pain and tears as the previous night’s insomnia caught up with…

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First outing in 5 months BLOG

My First Outing in 5 Months

I am so happy to have visited the beautiful Lake District this holiday! As anybody with a chronic illness can tell you, holidays are a stressful time that we often dread. With many more people around, an increase in noise, activity and an abundant selection of unhealthy food choices, it is inevitable that we will experience an increase in unpleasant symptoms and will at some point need to isolate ourselves in order to rest and recover. I am fortunate to…

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Christmas lights and baubles in some branches. Title reads: How I survived Christmas despite Severe M.E. My tips for coping during the festive season

How I Survived Christmas Despite Chronic Illness – How To Cope During The Festive Season

One thing that can really cause a lot of stress for people with Chronic illness is coping with Christmas and all that it entails. For me personally, Christmas has changed so much over the years. It’s ​changed from huge family get-togethers when I still lived with my parents, to multinational bring-and-share gatherings of friends once I moved to London, and then small meals with just my sister and I in my bedroom after I fell ill, ​and every combination in…

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Stalked and denied benefits BLOG

Chronically ill being stalked and denied benefits

On this day last year something very wrong and so unfair came to my attention: People with disabilities, who are deemed unfit for work by doctors and occupational health assessors, are being denied benefits because of their Internet activity. They’re being stalked, not only online, but in real life too! In this post I will elaborate on some of my thoughts I’d shared online at the time. My heart goes out to anybody who has suffered unnecessarily due to such…

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A career woman sits in a corridor with her head in her hands

Outcome: Unfit For Work

I love Facebook memories. Each day you wake up to find a lovely look back at how much things have changed over the past year. Some people find this depressing or sad, but I love looking back. I don’t find it sad, I find it interesting and I enjoy being reminded of all I’ve made it through and how far I’ve come. Even if I am still very ill and inactive, much has changed through the years, but it’s only…

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Feet in a bath tub, water moving. Title reads Shakes and Tremors with ME/CFS. Myalgic Encephalomyeitis causes visible body tremors.

Shaking And Trembling With ME/CFS

One of the most frustrating and debilitating symptoms of ME/CFS is the shaking and trembling after minimal exertion. Something that healthy people might get after a strenuous exercise. I was lying in the bath relaxing last night when I felt the shakes coming on. This is what I get for walking just a few steps to the bathroom and getting undressed. I started feeling a bit of the internal tremors at that point, I imagined it might come to the…

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Join the MAIMES campaign, Chronically Hopeful #MEcfs #pwME #ChronicIllness

MAIMES: Medical Abuse in ME Sufferers

As anybody with ME/CFS and their carers will know, many doctors and health care practitioners still treat ME as a psychological disorder, when in fact it has been proven to be physiological. Patients have been dismissed for decades, disbelieved, misunderstood and symptoms ignored. The current treatment recommended for ME/CFS patients is CBT (Cognitive Behaviour Therapy, a type of psychologically based talk therapy) and GET (Graded Exercise Therapy, a controlled exercise program). This came about due to findings that came out…

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ME Awareness Hour

ME/CFS Awareness, 15 Nov 2017

As you might know by now, I spend every Wednesday evening on Twitter, along with many other ME/CFS warriors, taking part in ME Awareness Hour. It runs from 8-9pm (London time) every Wednesday evening. We tweet about what life is like with this life draining illness. We tweet and retweet for an hour, hoping to to make our hashtags trend on the front page of Twitter so we can get the most attention possible. I hope you will join us, even…

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ME Awareness Hour

ME/CFS Awareness, 8 Nov 2017

I have a date tonight – with Twitter! Every Wednesday evening I spend an hour on Twitter, along with a bunch of other ME/CFS warriors, taking part in ME Awareness Hour. It runs from 8-9pm (London time) every Wednesday evening. You can join in the fun too, we’d love to have more advocates taking part! We post memes, links to research or media coverage, personal experience, all sorts of things that will help shed some light on what life is like…

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Update: current ME/CFS flare is slowing me down

It’s hard to deal with these unexpected flares or relapses that seem to come out of the blue. You end up asking yourself a million questions. What did I do wrong? Did I eat the wrong thing? What did I do yesterday or the day before to cause this much pain? Why am I so weak today, did I overdo it this week? Was the TV too loud? Did I miss the signs and push too hard? Did I get…

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