Throwback to the day I got my wheelchair

Using a wheelchair is liberating BLOG

A year ago today I got my wheelchair! I was almost completely bedridden at the time. Walking just a few steps every hour or two just to keep circulation and muscles alive was a chore.

As a family we were house-sitting in the Lake District at the time. It was a long term arrangement, so was kind of our home away from home, but I had been confined to an upstairs bedroom and was unable to get out to see the countryside around me.

I would enjoy, for a few minutes, watching the birds at the feeders outside my window and the gorgeous orchids that adorned every windowsill. Although it was a freezing cold winter, I longed to go out and explore.

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ME/CFS Awareness, 10 Jan 2018

ME Awareness Hour

Sandwiched between 2 hot water bottles, under layers of clothes and blankets, medicated - multiple times, in the dark with sunglasses on, my phone's screen dimmed and the blue light filter on so that I can bear looking at it for a few minutes at a time.

This was me yesterday after I had a nap on the sofa where I toppled over after lunch, in a bundle of pain and tears as the previous night's insomnia caught up with me and my body was flooded with pain in every muscle and every bone.

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My First Outing in 5 Months

First outing in 5 months BLOG

As anybody with a chronic illness can tell you, holidays are a stressful time that we often dread. With many more people around, an increase in noise, activity and an abundant selection of unhealthy food choices, it is inevitable that we will experience an increase in unpleasant symptoms and will at some point need to isolate ourselves in order to rest and recover.

I am fortunate to have a very considerate and understanding family who keep noise levels low, TV off most of the time and serve me like royalty so that I don’t have to exert the little energy I have. It is frustrating when you want to join in and help others, but are bound by your condition to sit still and rest for much of your day.

Since May last year, I have experienced some great improvements in my health and am no longer bedridden, but in August, after a day out with the family, I had a massive flare up which lasted months. I don’t think it was just the outing that caused the flare up though, I was also going through a horrible histamine reaction which was exhausting my body. I ended up staying indoors for 5 months before venturing out, just after Christmas.

Prioritising rest and sticking to my low histamine keto diet and supplements seems to be paying off, I had minimal payback from Christmas Eve and Christmas Day festivities, so a couple of days later was able to enjoy a whole afternoon out with my parents! Continue reading

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

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

Blogmas 2017 Christmas Tag!

Blogmas 2017 Christmas Tag

One of the things I love about blogging are all the community events. Things like monthly challenges, link-ups and interviews. Holiday link-ups are always fun!

I stumbled upon this fun Christmas link-up on the first of December after I'd already started writing my gift guide and my brain was thoroughly fried, so I have decided to take my time with it and just post it whenever I'm done.

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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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Summertime Christmas in Africa

Christmas in Africa BLOG

When people think of Christmas, they think of snow, father Christmas or Santa Claus, Pine trees and funky Christmas sweaters. We also think about the birth of Jesus and the whole reason for the season. What many people don’t realise is that people on the other half of the planet celebrate Christmas during Summer!

I was one of these people. I was born and raised in South Africa where it’s Summer in December and Winter in July. Our school year started in January and ended the following December. I found it very strange to arrive in Italy as an adult to see that the other half of the world works very differently, but that’s for another blog post. Today I will focus on my Summertime Christmases in Africa.Continue reading

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