Category Archives for "Spoonie Life"

posts about life with a chronic illness

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

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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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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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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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