Tag Archives for " Chronic Fatigue Syndrome "

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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Shaking and trembling with ME/CFS

Shaking and Trembling with MECFS BLOG

I was lying in the bath relaxing last night when I felt the shakes coming on... This is what I get for walking to the bathroom and getting undressed. I started feeling a bit of the internal tremors at this point, I imagined it might come to the shakes, and then as I lay in the tub to rest, before washing, they suddenly started up. (see the video clip below)

This is just the start, it then takes over my whole body and that's when holding my phone, or anything else for that matter, becomes very hard.

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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 of the PACE Trial which has been reviewed recently and found to be based on flawed principles. The whole trial was unscientific and skewed, not at all a sound basis for deciding how to treat ME/CFS.Continue reading

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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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