Category Archives for "Spoonie Life"

posts about life with a chronic illness

How You Can Help The Millions Missing Worldwide

Photo of thousands of empty shoes filling a town square, foreground text says ME Awareness, How you can help the Millions Missing

May 12 is ME Awareness Day. A global day of "Millions Missing" protests and demonstrations by people with ME, their carers, family and friends. Many patients are too ill to leave their beds, so rely on these supportive individuals in their lives to do the footwork for them.

We would be lost and hopeless if not for the able bodied supporters who take our place at these rallies and make some noise for those of us too ill to do it ourselves.

I have recently been asked by a few people how they could practically help our cause. I will attempt to list some ideas and links to other initiatives that would greatly benefit from any support you can give.

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A Community of ME/CFS Bloggers

ME Directory, Join on Facebook BLOG

When I was first diagnosed with ME/CFS, I felt lost. Chronic Fatigue Syndrome was a condition I had never heard of before and my doctor didn't seem to know much about it either. What got me through was the support of other patients I found online. And they continue to be my support as the years go by!

For this reason I have created some groups on social media where bloggers, vloggers and other content creators with ME/cfs (and their carers) can share their posts to help support the ME/cfs community better.

My hope is that newly diagnosed patients, or anybody struggling to manage life with ME, would not struggle as much as some of us have to find the support and resources available to them. 

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Update: When Intention, Creativity and Chronic Illness Collide

When intention, creativity and chronic illness collide, BLOG

This month has been quite productive! I can't believe it's almost gone already. I'm once again taking part in this thought-provoking monthly link-up with Sheryl from A Chronic Voice. I love the prompts she comes up with each month - they really force me to consider things I might not otherwise think about and perhaps, in a way, that helps to keep me focused and accountable too. This month's prompts are:

  1. Adapting - to intentional rest and fasting
  2. Practicing - watercolour blending
  3. Realising - it's hard to stick to a schedule
  4. Celebrating - a year since my parents moved to the UK
  5. Inviting - other chronic illness warriors to share their story
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How I overcome insomnia

How I overcame insomnia BLOG

When I first got ME/CFS, I was so utterly exhausted, I slept many hours a day and I slept at night too.

Later I was introduced to one of ME's most horrible symptoms: insomnia. It's quite ironic that people think we sleep all day when really we're just utterly exhausted, mentally and physically drained, but unable to sleep, especially at night.

I found myself nodding off in the day, trying hard to stay awake, and then at night when it's finally okay to go to sleep, my body and mind are wide awake and in no mood for rest, buzzing and restless, despite still feeling utterly wrecked.

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