When Even Low Energy Hobbies Are Too Much: Living With ME/CFS Fatigue and Sensory Overload
There are days when I want nothing more than to curl up on the sofa, put something on the television and switch off from everything for a while.
It sounds simple enough, doesn't it?
For most people, watching television, listening to an audiobook or scrolling through their phone are things they do when they're tired. They're the activities we associate with relaxing, taking a break or passing the time.
But living with ME/CFS has taught me that even the gentlest activities can sometimes be too much.
There are days when I can't manage television because the screen is too bright. I struggle to follow what people are saying, and by the time I've processed one conversation, the story has already moved on.
Audiobooks can be just as difficult. I might hear the words, but I can't make sense of them or follow what's happening.
Even looking at my phone can feel overwhelming.
It's incredibly frustrating because I still want to do these things.
I haven't suddenly lost interest in watching a programme, listening to a story or catching up with something online.
I simply don't always have the capacity to manage them.
And that's something I don't think people always understand about living with ME/CFS.
When Restful Activities Stop Feeling Restful
Before becoming chronically ill in late 2020, I never really considered how much energy everyday entertainment could require.
Watching television was just watching television.
Reading was reading.
Listening to somebody speak didn't feel like something I needed to prepare myself for.
Now, those activities can demand far more from me than people might expect.
When my symptoms are particularly difficult, even sitting quietly and following a television programme can feel like hard work.
There's the brightness of the screen, the movement, the background music, the conversations and everything else happening at once.
My brain is trying to take it all in, but it can't always keep up.
Something that should be enjoyable becomes exhausting.
And sometimes I have to switch everything off because it's simply too much.
I've written before about low energy hobbies you can do without leaving bed, because finding enjoyable activities that work around chronic illness has become important to me.
But there is another side to that.
What happens when even those gentle hobbies are beyond what you can manage?
Why Watching Television Can Become Overwhelming With ME/CFS
Television is probably one of the clearest examples of how ME/CFS affects my everyday life.
There are times when the brightness alone feels unbearable.
Even with the television turned down, the combination of movement, sound and changing scenes can become overwhelming.
Then there's trying to follow what people are saying.
I can hear the conversation, but processing it is another matter entirely.
By the time I've worked out what's happening, the characters have moved on to something else.
I lose track of the storyline.
I forget what somebody has just said.
Sometimes I find myself watching the screen without really understanding what's going on.
It's not because the programme is particularly complicated.
My brain simply isn't managing the information.
And when certain scenes involve violence, fear or intense emotions, things can become even more difficult.
I can feel completely overwhelmed by what I'm watching.
The sensory input can leave me dysregulated and slightly distressed, even when I know perfectly well that what I'm seeing isn't real.
I've written about this in more detail in Watching Scary Films When You're an Empath and Chronically Ill.
It's one of those changes that has been particularly difficult to explain.
People might suggest watching something to take my mind off my symptoms, without realising that the television itself can become another thing my brain is struggling to cope with.
Sometimes the most comfortable option is simply turning it off.
When Audiobooks Are Too Much to Process
Audiobooks are often recommended as a gentle alternative to reading.
And I can understand why.
You don't have to hold a book, concentrate on printed words or keep your eyes focused on a page.
For somebody dealing with physical fatigue, that might sound ideal.
But listening still requires concentration.
You have to follow the words, remember what has happened and make sense of the story as it develops.
On difficult ME/CFS days, I simply can't do that.
I might listen to a few sentences and realise I haven't taken any of them in.
Or I'll hear the narrator speaking but struggle to connect the words to what is happening in the story.
Before long, I've completely lost track.
Rewinding doesn't necessarily help because I still can't process the information properly.
And eventually, something that was supposed to be relaxing becomes frustrating.
I want to enjoy the book.
I want to know what happens next.
But I can't make my brain cooperate.
That's the difficult part.
It isn't always about finding a more accessible way to enjoy something.
Sometimes even the alternative requires more energy than I have available.
Even Scrolling Through My Phone Can Be Exhausting
Using my phone is another activity that can become too much.
It's something most of us do without giving it much thought.
We pick up our phones, check messages, read something online or scroll through social media.
But there are days when even that feels overwhelming.
The brightness, movement, photographs, videos and constant stream of information can be difficult to process.
Sometimes I struggle to concentrate on what I'm reading.
Other times, I find myself looking at the screen without really taking anything in.
And if there are lots of notifications, messages or things demanding my attention, it can become even harder.
The frustrating thing is that my phone is also one of the ways I stay connected to people.
When I'm unable to do very much physically, being able to send a message or read something online can help me feel a little less isolated.
So when I can't even manage that, it can feel as though another small part of everyday life has become inaccessible.
There are times when I have to put the phone down and leave everything unanswered.
Not because I don't care.
Not because I don't want to talk to anybody.
But because I simply cannot manage any more information.
The Difference Between Physical Fatigue and Cognitive Fatigue
One of the things I've learnt about living with ME/CFS is that exhaustion isn't always just physical.
There are days when my body feels completely drained, but my mind still wants to do things.
I might want to write a blog post, read something interesting, watch a programme or spend time looking at ideas for something I'd like to make.
The interest is still there.
The motivation can be there too.
But the ability to concentrate, process information or manage sensory input isn't.
That's a particularly frustrating combination.
Because from the outside, it might look as though I'm simply resting.
I'm sitting down.
I'm not doing anything physically demanding.
Surely watching television or listening to a book shouldn't be too much?
But cognitive activity can still be demanding when you're living with ME/CFS.
Thinking, concentrating, following conversations and processing information can all contribute to my exhaustion.
And sometimes the effects aren't immediate.
I might manage an activity for a little while, only to realise later that I've done more than my body and brain could comfortably tolerate.
This is why pacing isn't only about physical activity for me.
It's also about recognising when my brain needs a break.
The Frustration of Wanting to Do Something but Being Unable To
There is a particular kind of frustration that comes with wanting to do something enjoyable and being unable to manage it.
I'm not talking about having a long list of jobs that need doing.
I'm talking about the little things that make life enjoyable.
Watching a favourite programme.
Listening to a story.
Reading something interesting.
Catching up with somebody online.
They're not huge ambitions.
They're ordinary pleasures.
And yet there are days when they're completely beyond me.
Sometimes that leaves me feeling restless because I want something to occupy my mind, but everything I consider feels too demanding.
Other times, I'm simply too exhausted to care about doing anything at all.
Neither is particularly easy.
I've had to accept that being interested in something doesn't automatically mean I have the energy to enjoy it.
That's been one of the harder adjustments to living with chronic illness.
I can still love an activity while recognising that I can't always participate in it.
And I can miss those little pleasures without feeling that I need to force myself to do them.
When Low Energy Hobbies Still Require Too Much Energy
I've shared quite a few ideas for gentle activities in my article about low energy hobbies for chronic illness and flare days.
There are some lovely options for people who have a little energy available but need something that doesn't involve too much physical effort.
But low energy is relative.
An activity that feels gentle to one person might be exhausting for somebody else.
And even for the same person, what feels manageable one day might be impossible the next.
Reading, colouring, crafts, puzzles and listening to music can all require different levels of concentration, movement or sensory processing.
Sometimes I can manage one of those activities.
Sometimes I can't.
I've learnt that there isn't much point in calling something a low energy hobby if doing it leaves me feeling worse.
The purpose is supposed to be enjoyment.
If I'm pushing myself to complete an activity simply because it's considered gentle, I've rather missed the point.
And there are days when the best thing I can do is stop trying to find something to occupy myself.
Learning That Rest Doesn't Need to Be Productive
This is something I'm still learning.
I used to associate rest with doing something relaxing.
Watching television.
Reading a book.
Listening to music.
Something that allowed me to feel I was taking a break while still enjoying myself.
But living with ME/CFS has changed that.
Sometimes rest means no television.
No audiobook.
No phone.
No conversation.
No activity to keep my mind occupied.
Just giving myself permission to stop.
And that can be surprisingly difficult.
When you're used to being busy, doing absolutely nothing can feel uncomfortable.
There's always something I could be doing, something I want to catch up on or something I feel I've missed.
But I've had to learn that rest doesn't need to come with entertainment.
I don't have to turn every quiet moment into an opportunity to read, learn, create or achieve something.
Sometimes my body and brain simply need less.
Less noise.
Less light.
Less information.
Less pressure.
And that's enough.
What Helps When Everything Feels Too Much
I wish there were a simple answer to managing these difficult days.
Something that worked every time and made the sensory overload or cognitive fatigue disappear.
Unfortunately, it isn't that straightforward.
What I can do is pay attention to the signs that I'm becoming overwhelmed.
If the television feels too bright or I can't follow what's happening, I don't need to keep watching.
If an audiobook becomes impossible to process, I can stop listening.
If my phone is making me feel worse, the messages can wait.
Sometimes reducing the amount of light, noise and information around me is more comfortable than trying to find another activity.
Other times, I simply need to leave everything alone for a while.
I'm still learning to recognise when something has become too demanding before I reach the point of feeling completely overwhelmed.
And I don't always get it right.
There are times when I keep trying because I want to finish watching something or because I don't want to give up on an activity.
But I've become more aware that pushing through isn't always worth the consequences.
Resting before things become unbearable is something I'm trying to get better at.
You Can Miss Your Hobbies Without Forcing Yourself to Do Them
One of the things chronic illness has taught me is that it's possible to miss something deeply while also knowing you can't manage it.
I miss being able to enjoy ordinary activities without having to consider how much energy they'll require.
I miss being able to follow a story without struggling to process what I'm hearing.
I miss switching on the television without worrying whether the brightness, noise or emotional intensity will become too much.
And I miss being able to pick up my phone without wondering whether I'll actually manage to read what's on the screen.
They're small things, perhaps.
But when enough small things become difficult, they add up.
I don't want to spend my life constantly measuring everything against what I used to be able to do.
At the same time, pretending I don't miss those things wouldn't be particularly honest either.
There are days when I feel sad about it.
There are days when it frustrates me.
And there are days when I can accept it a little more easily.
I'm learning that all of those feelings can exist without needing to fix them immediately.
A Final Thought
When people talk about low energy hobbies, the suggestions are often well intentioned.
Read a book.
Watch a film.
Listen to an audiobook.
Try something creative.
And for some people, those ideas can be genuinely helpful.
But there are days when living with ME/CFS means even those activities are too much.
The television is too bright.
The story is too difficult to follow.
The sounds and images become overwhelming.
Even a few minutes on my phone can leave me struggling.
It's not a lack of interest or motivation.
It's simply the reality of what my body and brain can manage at that moment.
I've learnt that I don't always need to find another activity.
Sometimes I need to stop looking for something to do and accept that rest is enough.
That doesn't mean I've stopped enjoying life or given up on the things I love.
It means I'm learning to recognise my limits.
And on the days when even the gentlest hobbies are beyond me, I don't need to turn rest into another thing I'm supposed to achieve.
Sometimes doing nothing really is enough.
Frequently Asked Questions About ME/CFS Fatigue and Sensory Overload:
-
Yes. Some people with ME/CFS experience cognitive difficulties and sensitivity to light, sound or other sensory input. For me, television can become overwhelming because of the brightness, movement, conversations and difficulty following the storyline.
-
Cognitive fatigue can make it difficult to process spoken information, remember details and follow a story. Even though listening to an audiobook doesn't require physical effort, it still involves concentration and mental processing.
-
For some people, screen brightness, movement, notifications and the mental effort of reading or responding to information can be difficult to tolerate. I sometimes find that even scrolling through my phone becomes too much when my symptoms are worse.
-
There isn't one answer that works for everybody. Sometimes adapting an activity or reducing sensory input may help. On more difficult days, choosing to rest without trying to occupy yourself may be more appropriate. The important thing is respecting your own limits rather than pushing through symptoms.
-
Sensory sensitivities can occur in people living with ME/CFS, although experiences vary. Some people find bright lights, noise, movement or busy environments particularly difficult to tolerate. It's important not to assume everyone experiences the condition in the same way.
-
Cognitive fatigue affects mental activities such as concentrating, processing information, remembering details and following conversations. Physical fatigue affects bodily activity. People with ME/CFS may experience both, and the effects can vary from day to day.
