Blog,  Chronic Illness,  Mental Health

Chronic Fatigue Syndrome: What does it really feel like?

Have you ever had a week that feels like it’s been non-stop, where you’ve struggled to come up for air? You get to Friday and your body and mind are so overwhelmed that you feel like you need to sleep the entire weekend just to be able to face Monday morning? Well, every day feels like that when you have chronic fatigue syndrome. 

Except that sleeping for a weekend isn’t going to help. In fact, sleeping for a year won’t even make a difference.

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Life with Chronic fatigue syndrome

What does Chronic Fatigue Syndrome really feel like?

The best way I’ve ever been able to describe it is like living with a permanent hangover.

Put aside the symptoms like nausea, CFS/ME luckily doesn’t come with that, but all the other symptoms. You feel like you’re in a daze. Your eyes are blurry and struggle with day light. Your muscles and joints ache and you feel very heavy, sluggish. Your brain is slow. Sometimes you forget words, sometimes while sentences or even chunks of your memory altogether.

You may have a headache. And your whole body is tired from the lack of sleep. But you haven’t actually gone out, you might not have done anything the day before.

The hangover persists

Christmas 2016 Chronic Fatigue
Christmas 2016 completely wore me out

Some days it is better than others. Some days it’s only as if you went out for a couple of drinks, so you’re just a bit weary the next day. Some days it’s like you’ve been on an all-night rager. But for the most part it is impossible to predict which one it’s going to be from one day to the next.

There are some things, for me anyway, that I know make it worse.

Certain types of exercise (intense cardio for example), or days that are not paced properly often result in a worse day. I try to stagger cleaning, and work, and other chores, throughout the week and month so I don’t end up having a day that is packed and will wipe me out.

If I have got a full-on day coming up I try to schedule enough rest before and after it so it doesn’t have a knock on effect on the next few days.

Bunny Onesie
Sometimes I hide in my bunny onesie to make myself feel better!

You can’t predict it

That’s not enough though. It’s unpredictable and inconsistent.

I’ve had whole weeks where I constantly feel like I’ve been on a huge bender no matter how much I rest. I prioritise rest wherever I can, yet I am still tired.

I have also experienced the other side, where I’ve had an extremely busy day and then I feel surprisingly okay the next day – I end up just not knowing what to do with myself because I’ve planned time to rest. I get agitated, because I want to be doing something. But I’m worried in case I end up having a bad day tomorrow.

It’s hard to explain

It’s probably the most frustrating thing I’ve experienced, because it’s hard to understand.

People can’t see how difficult doing simple things like showering, or even eating, are for someone like me. Just the mere act of being alive is exhausting, let alone all the other things that come with it.

We are often seen to be lazy, because we are not able to do simple things, and are expected to still live life normally when every day is a strain.

Memory Walk 2018
Mentally preparing myself to take on the Memory Walk 2017 – I did need to rest for a week after that one!

Spoon Theory

If you’re not familiar with spoon theory, I suggest you do read about it, because it’s useful for understanding all kinds of chronic illnesses, not just CFS/ME.

The insanely limited number of spoons I have some days is just ridiculous, when all I’ve done is get out of bed and they’re all gone. Yet I still have to shower, and get dressed, get to work, and do the washing, then wash up after dinner.

They tell you to be careful, and to not use all of your spoons, but sometimes it’s impossible not to. I find I am constantly borrowing spoons from the next day, and the day after, for months until my body just gives up and forces me to rest.

But what can I do? There’s cleaning that needs to be done, I need to work, there’s chores that need to be done to keep our household running, and I need to try and get out of the house to keep my sanity (which often doesn’t happen).

This isn’t a sob story

I know it’s pretty negative, but I just wanted to truly get across the hard truth of living with Chronic Fatigue Sydrome. When you suffer from something like this, life is hard. But we just get on with it. Because complaining about it won’t make the exhaustion go away.

The best thing is to take it one day at a time and prioritise rest. I have a number of things I can do while I’m resting now, so I’m not bored – writing being one of them – which is really important. My brain is still active, it wants to get up and do things, my body just can’t keep up.

Nevertheless, I will keep on keeping on.548DE73D-6AED-4900-8400-95A8E8888FDC

If you are struggling with CFS.ME please know that it isn’t all bad, and there are ways to get through it. You are also not alone! So many of us are going through the same thing, and we are carrying on! I also know of many people who have fully recovered, which is nuts but it is a possibility. 

 

If you ever need someone to talk to or share with though, I am here. 

For more posts on Chronic Fatigue and what it really feels like, feel free to take a look at all my posts about it here.

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