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A Fatigue Flare

A fatigue flare is debilitating.
Its life changing.
It comes at a time when you are already struggling with chronic life.
It’ll replace the insomnia.
Four hours of sleep a night will be replaced by twelve.
And even then you could sleep more.
Naps last four hours.
You are horizontal on the sofa when you’re awake.
You’ll lose your appetite.
You’ll feel persistently sick.
You’ll have to drink with a straw.
Noises are too loud, smells too strong, lights too bright.
Showers are impossible, and don’t even think about washing your hair.
Cleaning your teeth becomes a dreaded chore.
And work, oh work, how your body will cope you will never know.
But you’ll make it, just.
It’s about asking for lifts home from work.
Then getting into bed without removing your make-up.
It’s about asking for help with dressing and putting on pyjamas.
It’s about your favourite company becoming your cat.
Because you can’t hold a conversation.
Or string a sentence together.
You can’t find the right words.
Questions are unbearable.
Thinking hurts.
You’ll watch re-runs of your favourite shows.
Because you can’t handle new themes or stories.
YouTube becomes too busy.
Twitter and Instagram overwhelming.
Just at a time when you need your online chronic illness community most.
You’ll become to unwell to communicate with them.
Everything hurts from your fingers to your toes.
It’ll hurt to sit, and hurt to lie down.
You’ll take more medications, you’ll feel even more sick.
You’ll be too exhausted to feel sorry for yourself.
But never too exhausted to feel afraid.
You’ll have no choice but to wait it out.
Eventually it’ll pass.
You’ll go back to your normal exhaustion, the normal fatigue.
Insomnia will return.
Naps will be two hours.
And you’ll be able to hold a conversation again.
Until the next time it returns, like a rug being gently pulled from beneath you.
You’ll fall back into bed, and begin the process all over again.

 

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Living the Best Life with Fibromyalgia – A Book Review

Last summer I was contacted by Alisha Nurse. She’d written a short handbook based upon here experiences of living with fibromyalgia and asked if I’d have a read to see what I thought. Well, the months ran away with me in a blur of flare ups, hospital appointments and a few stressful events, and I never got round to reading the book. I never forgot about it though, infact I thought about it quite often. I made it one of my New Years resolutions to read the book, and last night I finished it.

The book isn’t too long, 78 pages on my Kindle Fire, and it’s clear from the beginning it’s written by a fellow sufferer. I instantly found I could relate to the author and this made me want to keep on reading and not put my Kindle down until I was finished. Many books I read on health subjects tend to be patronising, use positive thinking and distraction to make it go away kind of books, but not this one.

Alisha is honest about the ups and downs of life with both fibromyalgia and clinical depression. She begins by telling us about her childhood, family remedies and about her battle in both getting diagnosed and getting the help she really needs. The fact this books touches on her ongoing fight with depression is a good move in my view, lots of people with fibromyalgia have depression or know someone who has it, so it makes it even more informative to read, leaving you feeling closer to Alisha and like you really know her.

My favourite part was the recipe section for her healthy, clean diet, and the fact that it includes so many recipes based on her family history in Trinidad. Ginger tea, garlic tea, fish, burgers, soup, there’s something there for everyone, even fussy old me.

She also details the supplements she takes, some of which I take too, so it’s great to know we have quite a lot in common and I’m heading for the right track. She talks about pacing, getting back to work and meaningful living, all of which is not necessarily new to us, but combined in a great little handbook together like this, is just the thing I personally have needed to re-evaluate where I am with my health and what I can do to improve things without waiting for the help of the NHS on my months long waiting lists.

Ultimately the book details how Alisha has learned to live her life as full as possible, whilst managing the symptoms of her illnesses as best she can. And I think she’s cracked it. It sounds like after much trial, error and a little help from her friends, she back on track, and she knows exactly what she needs to do to keep it that way.

I personally have found the book empowering and, as I said above, it’s made me step back and take a look at how I am dealing with my health, what I can do to improve it and how I can keep it that way.

If you suffer from fibromyalgia I would strongly recommend this book to you. It took me just a couple of short evenings to read, was fibro fog friendly, and is something you can constantly refer back to if needed, if not just for the yummy recipes.

You can find Alisha’s website here and it’s also worth giving her a follow on Twitter if you’re a Twitter gal, or guy, and of course there’s Facebook.

I really hope you all find the book as interesting and useful as I have.

Happy reading!

Karen xx

 

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Driving Home for Christmas – Travelling with Fibro and Anxiety

Well, travelling by train. I travel the longest part of my journey on Virgin Trains. Sounds relaxing doesn’t it? And it used to be for me. But travelling when you have chronic illnesses isn’t quite so simple.

There’s three things that travel with me wherever, my fibromyalgia, my chronic fatigue and my old enemy, anxiety. They’re at their most evil when taking the four to five hour journey home to visit my parents in Birmingham.

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There’s also lots of walking and buses involved at either end.

The pain of dragging suitcases and heavy bags around, the exhaustion that hits when trying to lift bags onto trains. It can’t be put into words. The anxiety is most likely to hit in the high speed tilting trains so I book well in advance for a cheap first class ticket. This gives me time to relax in a first class lounge first, and a relatively empty carriage with space and room to relax and breathe, as opposed to being wedged onto standing room only carriages further down. First class also means less walking along the platform and staff on board to take care of you if needsbe. Anxiety undoubtedly will rear it’s ugly head at some point in the journey but it’s always for much less time this way.

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It can take days, or even a week to recover from such a journey, by which point it’ll be time to return home.

And so it begins again.

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Listening to music helps keep anxiety at bay

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Let me know how you cope with travelling. Its be great to share help and ideas with fellow chronic illness spoonies here.

Karen xx