Category Archives for "Practical Help"

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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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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Coping with Christmas 2017

Christmas 2017 BLOG

Christmas has changed so much over the years. From huge family get-togethers, to multinational bring-and-share gatherings of friends, to small meals with just my sister and I in my bedroom, to every combination in between! I think it’s safe to say that we don’t really have a typical Christmas tradition in our family.

This year we had a lovely quiet day at home, just the 4 of us. I was doing okay despite having had a bath the night before, I actually managed to spend most of Christmas upright with my family in the living room!

This post will be a recount of our celebration, but will also include tips on how I coped with the holiday chaos.Continue reading

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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 flares: what do they feel like and how to cope

ME CFS Flares, How to cope BLOG

People with ME all suffer at varying degrees, we cannot compare our flares to somebody else’s. What one considers an ME/CFS flare another considers just another regular day with ME. What one person with ME considers a normal day, might be somebody else’s idea of torture. Once thing they all have in common is that everybody’s battle is devastating.

We learn to acknowledge and respect everybody’s pain and everybody’s victories, because despite not fully understanding each other’s experiences, we can all agree on a few things: ME/CFS is life draining, heavy, isolating, painful, lonely, misunderstood and just plain horrible to deal with. And none of us would ever choose to have it or wish it upon our worst enemy.Continue reading

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