24 Hours in the Life of Someone with Chronic Fatigue / Charley Lucy



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24 Hours in the Life of Someone with Chronic Fatigue

Sleep Tight, Lightbox, Tumblr, ME, Chronic Fatigue, Spoonie

Surprise, I have Chronic Fatigue. It's been five years and I haven't quite developed a good way of telling people. Weird, right? I tend to just blurt it out in, what I judge as, appropriate situations. Spoiler: they are often not. It usually makes the other person more awkward than I intended. Apologies if this has every been you.

Having Chronic Fatigue something I sprinkle into my blog, most often calling it ME due to the negative stigma attached to this "made up" condition that affects me every minute of every day. I've even got a few posts from that brief time I thought I was losing the plot because my student GP was unequipped to deal with it: "Young women sometimes just get this way". But, as I really have no choice in the matter, I have had to learn to live with it. The only reason I decided to dedicate a full blog post to it is the incredible 24 hours in the life of someone with OCD article Thrifty Vintage Fashion wrote that really opened my eyes to what it's like to walk in another person's shoes. I know I'll never truly understand, just like, even if I told you I never, ever wake up refreshed and am always tired you, if you've never experienced it before, wouldn't be able to fathom it. I know this because I couldn't have fathomed it. It's an incomprehensible feeling.

Everyone experiences Chronic Fatigue differently. However much I wish it was a label given to lazy people and one day I'll wake up just fine and dandy, I know it's not true because I can feel it's not true. I don't want to say I'm lucky, because, I contracted Chronic Fatigue and that's pretty shit as far as things go. I likely won't every get better. Which is hard to grasp right? For-ever. I'll be this way throughout my life. On my wedding day, at parents evenings and during retirement. I'm not sure that'll ever sink in. But, after four years of pushing my boundaries and learning what I can and can't do, I am able to hold down a relatively normal life and I know that's not always possible for those suffering from Chronic Fatige. So please don't use my experience to judge that of your friend, relative or coworker. Each to their ME-riddled own.

Disclaimer done, here's what twenty-four hours of my life with Chronic Fatigue looks like. No pity parties please.

6:40 am - First alarm goes off. You don't register it.

6:45 am - Second. Nope, nothing.

6:50 am - Third. You keep your eyes open for long enough to hit the home button but as soon as your hand returns to the duvet you're already asleep, exhausted before the day has even begun.

6:55 am - Forth. Your boyfriend nudges you awake. You find this deeply annoying instead of cute. Everything's fuzzy inside your head. Why move. Go away. Sleep.

7:00 am - With the fifth alarm, you manage to move again and keep your eyes open. The slight shift has just made you realise just how much pain you're in - usually your back, neck and legs. You don't want to have to move.

7:05 am - Sixth alarm. Owy. Owy. Owy. But slightly more awake. You drag yourself out of bed to your pre-prepared bag and clothes you had to put together the night before because you knew your brain fog would make it take three times longer in the morning and you don't have time to spare.

7:15 am - It's taken you ten minutes to get downstairs, use the bathroom and dress. Not bad considering you're feeling only half-zombie today.

7:20 am - Time for makeup whilst listening to your audiobook. You're losing your lead here but skip the eyeliner and have it done in 15 minutes whilst you brain awakes to the worries of work. Your heart rate spikes, as it always does, and your Apple Watch buzzes reminding you to take a deep breath.

7:45 am - You leave the house 5 minutes late because your fatigued brain couldn't remember if it shut off the phone charger, tap or shut the fridge door. You check the door three times on your way out and make a mental note that today is Tuesday and the door is locked. Look, you're wearing that skirt, which is different from Monday so you'll remember this. Right? You get into your car and, whilst driving in the dark realise that you couldn't tell whether it was 8 am or 10 pm without a watch. Your body and mind feel the same.

8:04 am - You arrive into work late and more than likely blame it on the traffic. You vow to work four minutes late to make up for it. Computer on. E-mails up. Oh god, you have that many. Go get some caffeine, it'll help you think.

9:00 am - You spend the next hour checking and double checking your responses to e-mails because 1) you're already a terribly fast typer and 2) you don't want your brain fog to replace any words for phonetically similar words or homophones. If the pain is still there, sometimes it goes, you'll have to pop down to the shop to purchase breakfast so you can take a prescribed painkiller. You never have time to eat in a morning because it takes you twenty minutes just to move. Occasionally, you'll stink the office out with Deep Heat.

10:00 am - You're doing a kickass job and are feeling as awake as you'll ever be. To an outsider, you're functioning at one hundred percent. But you know that by now you've at least slipped up with your words once in casual office conversation. You struggle to get the right word out, say the wrong one or stutter.

2:00 pm - Due to a last-minute crisis you're late eating again. The added pressure makes it feel like a silent alarm is going off in your brain. Everything is silently screaming. Your muscles begin to complain as your heart beats faster. Think. Deep breath. Type faster. Crisis averted. Breathe. Outwardly you haven't batted an eyelid.

3:00 pm - You're on your third cup of coffee as you try and combat the 3 pm melatonin dip your ancestors used to sleep. Not long to go now.

4:04 pm - You start packing up, pleased that you're making an effort to cut down your lieu time, it's good for your health and means you won't need to nap as much after work this week. Good for you.

4:30 pm - Home. You take either one of three roads:

1) Nap because even though you tried your fatigue has just overwhelmed you and all you can manage to do is crawl up the stairs  - sometimes literally - and hide under the duvet. Sometimes you sleep for 20 minutes, sometimes for 3 hours, sometimes you're too tired to sleep at all which leaves you frustrated and fuzzy. You move out from the duvet feeling, more often than not, less refreshed. But at least you didn't have to waste energy functioning. Thinking is sometimes too hard.

2) You've got a bit more energy and just need some recovery time. Hello, coffee machine and Netflix. An hour later you feel sufficiently recharged and mooch around reading or writing a blog post. Sometimes you get really into it and write for hours. Other times you just jot down ideas.

3) You seize the day. Now, this doesn't happen very often but sometimes you come home and refuse to sleep, you muster what energy you have and you power through the next two-hour writing copy, checking e-mails and batch editing photos. Though, you wear yourself out and spend the rest of the night between beanbag and bed.

9:30 pm - Almost bedtime. You're making a real effort to start winding down before bed now, turning off the bright lights and just chilling in bed with a cup of sleepy tea, your Twitter feed and a good TV show or book. Not ideal, but it's a start. You might even have just got out of a relaxing bubble bath which makes you ready to drop. You once read that the dip in temperature mimics that of the boy as you fall asleep so you managed to get to sleep faster. Anything to avoid the fatigue related insomnia that keeps you up for hours.

10:00 pm - Lights out. Audiobook on. Find out what I'm listening to here.

10:30 pm - You're grumpy again as your boyfriend joins you. You're running on empty and all you want in the world is to fall quickly into a restful sleep. Which, spoiler, doesn't happen, ever. You vow to try and be a nicer person tomorrow but, usually, the tiredness wins out. Occasionally you get horrible fatigue-driven down periods of days at a time but today's not one of them so you don't don't dwell on your tendency to be a horrible girlfriend who does nothing tonight.

11:00 pm - With any luck, you're now sleeping like the dead. If not, you keep your audiobook on as you mentally countdown the hours until you're awake again.

12:30 am - Congrats, you've finally fallen asleep and completely lost your place in your audiobook.

3:30 am - Pee break! Darn, that sleepy tea. You rush downstairs but it takes you a good long while to fall back to sleep again. You wonder how much concealer you'll have to apply to your bags.

6:30 am - It might as well be 11 pm. You don't even hear your boyfriend's alarm as he wakes up.

Obviously not every day is the same, some days I feel better and other days I feel much, much worse. But, after holding a steady graduate job for a year and a half now I've only ever had one fatigue-related absence. Apparently, I haven't quite made it to a place where I can do a seven-minute workout just yet.

Want to find out more about my experience of Chronic Fatigue? Or ask an awkward question? Feel free. The comment below, send me a tweet or drop me a DM. I'll be happy to help. That is, if I remember to check my DMs!

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