Everything is exhausting.

Let me get that out there first. Everything - and I do mean everything - is exhausting. Showering, eating, standing up, getting out of bed - you know, the things people don’t think about taking energy? Yeah, they are all exhausting. And that is the thing that most effects my day to day life with CFS. Every step of my day, every move I make has to be considered. I’m constantly asking myself “Am I able to do this? Is it necessary? Is it worth it?”

But what does that look like? What does that actually mean for me, living with CFS? Well, follow along with me as I give you a run down of a day in my life.

Note: This is just my life. CFS affects different people differently, some people have higher thresholds of activity to me. Others have lower thresholds. If you know someone with CFS, don’t assume my experiences and theirs will match. However, I do get the impression that mine are generally relatable to people with CFS.

Mornings

Morning are hard. They are probably the time of day with the greatest variability, making them difficult to predict, as well as it just being hard to get going with fatigue.

Generally, I wake up at about 8, but it will usually take me a couple of hours to get up. 10 is usually the earliest I can expect to be able to get up, and even then it’s only for short periods of time, often driven by physical needs like food, water and full bladders. If I need to get up earlier, I usually can with the help of my trusty anxiety, but that typically means I’m more fatigued later in the day, and it’s not sustainable.

Sometimes, though, I wake up early and, as a result, am able to get out of bed earlier. Again, though, this is compensated for by being more fatigued later in the day.

The worst, and one of the most alarming signs of slipping health, are when I miss the morning entirely and don’t wake up until 11 or later. I have been known not to wake up until mid afternoon during severe flares, and have even slept for 24 hours straight on more than one occasion.

And here is the cat, curled stretched out against my back.

Afternoons

Typically my most active time of day. This is the time of day I am most able to be up and moving about. There are a few things I like to do during this time. These include, but are not limited to:

Crafting - typically knitting or crocheting
Reading
Writing
Cooking/baking
Exercising - typically walking around the back garden, sometimes dancing, when I have the energy

If I have chores to do, this is the time I am most likely to be able to do them. These usually include light things like vacuuming my room and doing my laundry. If I am experiencing more severe fatigue, I will probably watch TV or YouTube.

I feel like it’s important for me to say, at this point, that I can in no way do all these things in one day. Sometimes I can do more things, but I’m generally limited to maybe three things. And TV. Because TV doesn’t require much from me.

Evening

Honestly, this time of the day varies from day to day, depending on how much fatigue I’m experiencing and how much I’ve done during the day. I can typically do dinner with my family, but how engaged I am and how much I stick around after I finish eating differs each day. But it’s typically not very long. Sometimes, I am able to go out with a friend for an hour, which is usually nice and often much needed. Sometimes, I play card games with my family. Although, again, an hour tends to be my upper limit.

Still, I am most likely to watch TV during this time. I generally enjoy having something I can focus on, without having to be very mentally or physically active.

Night

Nights are also a difficult time of day for me. I like to have a drink of tea in the evenings, and I don’t like drinking anything after I’ve brushed my teeth. Unfortunately, by the time I’ve had my tea, I am exhausted as well as fatigued, and getting up from my bed or my chair to get ready for bed is frequently an overwhelmingly difficult task for me.

As well as this, I struggle with falling asleep, and it can take me half an hour or more each night - not something that’s pleasant when you’re exhausted or fatigued. Sure, sleep won’t cure my CFS, but it’s still awfully needed to keep me functioning. Sleep deprivation on top of CFS is absolutely horrid.

Fortunately for me, I am generally a deep sleeper, and typically won’t wake up until morning. I like that. The nights when I dream are difficult to manage. Anxiety related dreams can be… interesting…

And, this is a day in my life. Other people with CFS are more limited with what they can do, and yet others are more able than I am. This is in no way representative of day to day life with CFS as a whole. But I hope it’s given you some insight into how difficult living with CFS can be.