Tag Archives for " Unchargeable "

A Day in The Life of ME

A day in the life of ME BLOG

It might surprise you how often people with chronic illness are asked what they do with all the free time they have at home. I think many healthy people have no idea how difficult it is to deal with unrelenting symptoms on a daily basis. I hope to shed some light on this by sharing with you what a day in the life of severe ME is like.

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ME/CFS Awareness, 24 Jan 2018

ME Awareness Hour Recap BLOG

Every Wednesday the ME community comes together on Twitter to raise awareness of this debilitating chronic illness. We share recent media coverage, research news, our personal experiences and more. Making new connections and supporting each other. 

I will post the graphics I shared during the last ME Awareness Hour below. I hope this will help you understand what life is like with ME/CFS. If you have learned something new or find this post might be helpful in any way, please share it or download the images to share on social media and help raise awareness.

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ME/CFS Awareness, 10 Jan 2018

ME Awareness Hour

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 me and my body was flooded with pain in every muscle and every bone.

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Gift guide: what to buy for your chronically ill friends, part 3

I'm so excited to share this third part of my spoonie gift guide, I hope you are enjoying this series as much as I am! I only planned on 3 parts, but if I think of enough cool gift ideas, I might make more. I know it's Christmas season now, but these gifts would be great for birthdays or house warming too.

If you missed the previous gift guides, click here for part 1 and to catch up on part 2, click here. Happy shopping!

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Gift guide: what to buy for your chronically ill friends, part 2

Gift guide, what to buy for spoonies, BLOG

I know many people find such joy in shopping for gifts. They start shopping months in advance and they buy the most thoughtful, personalised gifts anybody would love, that's not me. I'm so unorganised! 

If you're anything like me, you've waited till the last minute to do your gift shopping. Whether it's for a birthday, Christmas or a house warming gift, I just cannot get it done unless it's right around the corner and then I might just give up altogether because I'm useless at choosing gifts, it actually stresses me out.

I hope that this series will help any other hopeless gifters out there, I know these are things that I could use and would love to receive, and I know that other chronically ill people will love them too. Happy shopping!

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Gift guide: what to buy for your chronically ill friends

Gift guide, what to buy for spoonies, Christmas BLOG

It can be quite tricky deciding what to buy your friends with chronic illness because of all the limitations and intolerances we often have. What would be useful and not harmful in their condition?

There are many lists out there, and they're all slightly different depending on the condition they're tailored for, so I'm making a list of the things I would have loved to receive over the years of being housebound.

I have chronic fatigue and chronic pain as my main symptoms and I struggle with sensory over-stimulation and occasionally anxiety, so anybody with ME/CFS or Fibromyalgia and even those with Migraines and Arthritis might appreciate these items. 

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ME/CFS Awareness, 15 Nov 2017

ME Awareness Hour

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 if you only retweet other people’s tweets, every bit helps!

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ME/CFS Awareness, 8 Nov 2017

ME Awareness Hour
This entry is part 2 of 2 in the series ME/CFS Awareness

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 with this debilitating illness. We tweet and retweet for an hour, our hope to to make #MECFS trend on the front page to get the most attention we can. I hope you will join us, even if you only retweet other people’s tweets. Come find me on Twitter at: chronic_hopeful

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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 over excited about something?

It can be a bit worrying when you are sure you’ve done everything right, but your body fails you anyway. The key is to not get distressed, because that just makes things worse. Stress absolutely is your enemy. Continue reading

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ME/CFS Awareness, 1 Nov 2017

ME Awareness Hour
This entry is part 1 of 2 in the series ME/CFS Awareness

Every Wednesday evening I take part in an online event called ME Awareness Hour. The event takes place on Twitter and it’s goal is to raise awareness for ME/CFS by tweeting and retweeting posts about life with ME/CFS and any recent scientific publications or media coverage on the illness.

I love being a part of something like this because it gets people’s attention when we work together and make some virtual noise all at the same time. Continue reading

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