Getting out of bed is the hardest part of my day

A cat asleep in a Japanese cat cafe.

I have a difficult relationship with sleep, not because I’m not getting enough, but because I enjoy it too much. It is by far the thing I look forward to most each day. I don’t enjoy being unconscious per se, but I do enjoy having a period of time where I drop the pretence of ignoring pain, and can just relax, and embrace rest.

This post may seem a little defeatist than I intended. I just wanted to deconstruct the weird myriad of issues that sleep poses.

I want to talk about why leaving that state is the hardest thing I have to do each day and why it’s different and more complicated than just being tired.

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How to get a good nights sleep

My two cats Ada and Curie having a nice nap together.

My two cats Ada and Curie having a nice nap together.

Before I got sick I battled with insomnia for many years. It started with living with several extremely noisy housemates at uni that meant what little sleep I did get had to be managed around what quiet time they’d let me have.

Over time this led to such anxiety with getting to sleep that my mind whirred as I tried to rest, so although I’d regularly be exhausted I couldn’t get any rest at all.

I felt powerless about something that should be effortless, and when I became ill with endometriosis (and started full time work) it was one of the first things I had to sort out to get some quality of life back.

Happily I’ve lived with near perfect sleep since becoming ill, it’s one of the few areas that I don’t have much difficulty with anymore. Although much of my sleep can still be unrestful (and I have wider chronic fatigue problems).

That said, I didn’t quite appreciate how restorative my sleep was until I got a new set of neighbours that caused me several days of restless nights and I got flashbacks to a time that I’d all but forgotten about.

I know some of you must still be in the worst throws of insomnia, and I know how utterly miserable it can be so I’ll do my best to share what has helped me get over that particularly horrible hurdle.

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Working with chronic fatigue

Working while fatigued is real dichotomy. There’s plenty of information about living with chronic fatigue out there, which proposes using phases of pacing and rest to get activity done – however that’s easier said than done for those to us who work (particularly full-time) who do not have adequate options to rest in the day.

Yes, we’re meant to rest wherever possible, but being realistic, we have bills to pay and people to look after. So fatigue management is a even bigger balancing act when you work, it’s impossibly hard some days and it’s the element of my life that I find the hardest. Chronic fatigue of course is totally different from tiredness and needs to be treated differently.

Work by definition often means pushing yourself, and even a healthy person feels tired and worn down after a work day, so trying to work with the limited amount of energy afforded by a chronic illness, while trying to maintain professionalism at work remains a massive challenge for many of us. There’s no hard and fast rules that will solve this problem, but I hope to pass on some of the tricks and coping mechanisms that help me each day.

The key is to find something that helps a little – to help you find a way through the day. Once you find a study foothold with chronic fatigue, then you can continue to climb.

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Memory loss – the embarrassing side effect of chronic fatigue

When they diagnose you with a chronic illness there’s a whole heap of things they don’t mention.

The long-term effects on your relationships and friendships don’t come up, neither does the complex issue of you looking normal when you’re really rather unwell.

One thing that I certainly did not predict was endometriosis’ effect on my mind – more specifically how years of chronic fatigue would start to affect my cognitive abilities.

I’m finding my memory loss is causing more and more problems and getting people to take in how scary and bewildering it is surprisingly difficult.

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What does chronic fatigue feel like?

A short time ago I suffered the worst patch of chronic fatigue that I have experienced for the longest while. I couldn’t have written this update when it was at it’s worst. Even lifting my head from the sofa was too much like hard work. Trying to eat with the lightest of forks felt like I was trying to lift a bag of sugar.

My limbs felt like dead weights, they shaked and flailed as I tried to perform even the simplest of movements. They trembled like they were sacks of water when I asked them to be still. Every request for my body to move left me panting.

Of all the things that I experience with endometriosis, it is the fatigue that I dread the most. For me it the worst sort of body betrayal. It makes me feel like I am trapped in my own body, weighed down by my own skin and fighting against a perpetual feeling of slipping into unconsciousness.

I have spoken at length about what endometriosis pain feels like. Today I want to talk to you about my chronic illness nightmare. The thing I dread the most. The heavy burden that is chronic fatigue.

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Endometriosis & making friends with chronic fatigue

One of endometriosis’ worst symptoms sort of sneaks up on you. When you’re diagnosed, you’re generally aware of the biggest problem you’re likely to have to get used to (the pain). As that’s the problem that’s led you to the doctor or consultant.

Months after you’ve started to get used to chronic pains effect on your body, another handicap rolls in. The exhausting shadow that is chronic fatigue.

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My name is Michelle and I've been living and working with endometriosis since diagnosis in 2010.

I hope to provide some hope for this illness through practical advice and discussion of this awful disease.

My other sites

Pioneer Project - Video games, UX and sustainability