Tag Archives for " Raising Awareness "

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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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

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

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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ME/CFS flares: what do they feel like and how to cope

ME/CFS Flare

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

ME/CFS Awareness, 1 Nov 2017

ME Awareness Hour

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

Do you feel like giving up?

Giving up?

In the chronic illness community, you will find some of the strongest people you will ever come across. They are warriors who fight many battles daily, often against their own bodies or minds, just to get through each day. As much as there is hope and strength, there is also a lot of neglect and isolation.

I often come across people who are losing all hope. They feel so alone in the world, disbelieved or misunderstood, but in reality there is so much support and love available to them if they just reach out or know where to look.Continue reading