Tag Archives for " Chronic Illness "

December 2017 Chronic Voice Blog Link-up

Blog Link-up Dec

As this year draws to an end, I have decided to start something new here on the blog.  One of my favourite parts of blogging is taking part in link-ups or blog parties.

If you’ve never heard of them, they are basically the virtual equivalent of a meet-up in a coffee shop with other bloggers online. Usually hosted by one or more bloggers, it is a collection of links, which are really invitations, to come visit other blogs who all have something in common; it could be a hobby, the focus or niche of their blogs, or the fact that they are parents that connects these blogs.

It’s a great way to find new blogs to follow and make new connections with other bloggers as well as possibly gaining a few new readers yourself.  There are usually questions, prompts or a theme to help guide the participants.

The link-up or blog party is usually run on a regularly recurring basis, either every week or month and sometimes there will even be seasonal ones! The prompts for this month’s one aimed at bloggers with chronic illness are:

  1. Recovering
  2. Shopping
  3. Enjoying
  4. Reminiscing
  5. Preparing

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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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Chronically ill being stalked and denied benefits

Stalked and denied benefits BLOG

On this day last year something very wrong and so unfair came to my attention: People with disabilities, who are deemed unfit for work by doctors and occupational health assessors, are being denied benefits because of their Internet activity. They’re being stalked, not only online, but in real life too!

In this post I will elaborate on some of my thoughts I’d shared online at the time. My heart goes out to anybody who has suffered unnecessarily due to such corruption in the benefits systems, not only here in the UK, but abroad too. I have spent some time in various international support groups online over the years since the onset of my ME/CFS and was shocked to read about people’s experiences of surveillance through windows and being followed.

This means that if the chronically ill applicant dares venture out and is spotted, it could seriously affect their applications for benefits. This is simply wrong on so many levels.

Does this mean that since we are unable to work due to illness, we also no longer have the right to live? No longer have the right to enjoy a rare occasion out or join social media so we can connect with the outside world without the negative consequences of going out and exerting too much? Despite the discomfort and pain we will endure during and after the activity anyway.Continue reading

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Being declared unfit for work

The day I lost my job BLOG

I love Facebook memories. Each day you wake up to find a lovely look back at how much things have changed over the past year. Some people find this depressing or sad, but I love looking back. I don’t find it sad, I find it interesting and I enjoy being reminded of all I’ve made it through and how far I’ve come.

Even if I am still very ill and inactive, much has changed through the years, but it’s only with these reminders that I remember what I’ve gone through, what I’ve tried, what has worked and what hasn’t. It’s a great way to re-evaluate and keep track of things.Continue reading

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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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Life is like a twisting roller-coaster ride

It’s easy to get caught up in all the negatives that happen in life. Things don’t go your way, you fall ill, you lose people or your job, you feel sick, there are just so many things that can bring us down, but this is just part of life.

The minute we stop expecting life to be a fairytale and accept reality, that’s the moment we open ourselves up to the truth and the freedom that comes with it. It’s hard to expect perfection at all times. It’s hard on ourselves and on those around us. Nobody can live up to that expectation. Life doesn’t work that way.Continue reading

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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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