Posts in the fatigue network
Being kind to yourself when experiencing fatigue

Do you find yourself struggling with fatigue? Feeling tired ALL the time, no matter how much rest you do (or don’t!) get? Trying to work out how on earth to manage fatigue and life?

There are different types of fatigue. There’s that tiredness you feel when you’ve stayed up too late watching Netflix and your alarm goes off way too early so it feels like you’ve barely been to bed. Or after work drinks turns into one too many and you’ve no idea what time you got to bed and suddenly its time to get up and go to work! Easy in you early 20s, but suddenly feels like the hardest thing in the world once you hit 30!

Then there’s the sleep deprivation of life with a newborn baby, the wandering round in a fog and doing crazy stuff like trying to put the kettle in the fridge when you make a cup of tea (please tell me that wasn’t just me?!?).

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Sleep and Fatigue

Sleep – the thing I seem to need more of than pretty much anyone I’ve ever met. I’ve always been one of those people who need lots of sleep. Sleep deprived me cannot function. Simple.

But then I got diagnosed with Chronic Fatigue Syndrome. Sleep – at least good quality sleep – became something I could only hope for. That’s the funny(?!?) thing about CFS. You’re always exhausted – like bone deep exhausted. But sleep doesn’t really happen. Not proper sleep. It’s a half sleep where to everyone else you look like you’re sleeping. Your body is stuck. Your mind is switched off. But you feel pain. You hear every sound. Then there’s the nights where there’s no sleep at all. Where the pain is so much that just breathing feels like too much effort. And now and again there’s those miracle nights. The ones where you sleep all night long, hours and hours of real sleep. And then you wake up, feeling just as rubbish as if you’d not even been to bed. Arghhhh!!!!

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Can you manage fatigue and still work?

A big part of my “day job” is helping raise awareness within the organisation of the issues facing people with chronic fatigue as a result of a disability or long term health condition. I’ve spent a long time myself trying to find a working pattern that meant I could work as much as possible (the mortgage won’t pay itself!) but didn’t result in me doing nothing but sleeping when I wasn’t there, or worse still, continually triggered crashes that left me unable to work for extended periods of time.  Chronic Fatigue Syndrome is so temperamental – you can never be completely sure what might trigger a crash, and something that was fine in the past might suddenly be the thing that tips you over the edge. No wonder people who don’t live with it struggle to understand – no two patients are the same, and the variety of symptoms and experiences is huge! I’ve created an infographic to help explain some of the things that make working a little easier for people managing fatigue.


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What not to say

As part of my “day job” I’ve been working with fatigue network members on creating an information pack to support them, their colleagues and their managers understand chronic fatigue and how to support them work whilst managing their condition.

One of the members volunteered to create an infographic covering some of the things not to say to someone with fatigue and this is what he produced - it’s fab! I can honestly say I’ve had all of these at some point or other which is really disheartening, but so comforting to know I’m not the only one to face these issues!

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What is chronic fatigue?

I was diagnosed with Chronic Fatigue Syndrome (CFS)/ Myalgic Encephalomyeltis (ME) in 2015 after 18 months of tests with no answer. I fought it for a long time, if I’m honest, but nowadays it feels normal to have to think about the amount of energy I have on any given day versus the things I might want or need to do. CFS/ME is just one of the many disabilities or long term health condition where fatigue is a major issue, if not the main issue.

But what is fatigue really? Doesn’t everyone get tired? Well, yes, everyone does get tired. At times everyone can feel exhausted. But there are some fundamental differences between real fatigue and tiredness.

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