Why Is Music So Hard for People With ME/CFS?

Why Is Music So Hard for People With ME/CFS?

by Jody Smith
Oh, how I love music! This magic can lift our spirits and calm our weary minds. Maybe it can even help us heal. Goodness knows, we who live with ME/CFS need these things. We're probably not getting much of this elsewhere. So if music is so good for us, why is it so hard to have it in our lives? Why, for many of us, is music so exhausting?

violinist-400x262.jpg
Sorry, I have no real answers to these questions. Just more stories.

I think I was a fairly typical adolescent of the 1970s. I spent as much time attached to my little transistor radio as I could. Like many teenagers, I didn't have a great deal of control over my life. I didn't like school and I immersed myself as much as possible in a world of music.

I spent time with friends who were musicians. I lived with a musician for five years starting in University. We often had piano keyboards and drums in our living room. People would just pick up an instrument and break into song at the drop of a hat. And harmonize.

My happiest times were spent in folk musician coffee houses and University pubs where my favorite musicians were playing.

Over the decades I've listened to 45s, to albums, then tapes, then CDs. Music of a variety of styles created the soundtrack to my life. As an adult I listened to music in my living room, in my bedroom, and in the car. I sang in my church's worship team. I played my piano at home. I sang as I worked and when I went out for walks.

Music was uplifting. It was soothing.

But when I got very very ill the music stopped. Now, it wore me out too much to listen to it. I certainly wasn't singing or playing an instrument. In the days when the ticking of a clock was enough to chase me out of a room, even beautiful music seemed more damaging than revitalizing.

It left me overwhelmed with dizziness and nausea. Vertigo tipped my world. Mental chaos and fragmentation caused my thoughts to fly like shards in all directions.

Even when I improved a bit years later, and could listen to some music once again, I would pay for it for hours afterward. I had to be prepared to sacrifice the rest of the day, rendered incapable of coherent thought or getting anything done.

It was a tragic, heartbreaking loss. Not only was it a loss of beauty and transcendence it was a loss of a piece of myself. Music had been a part of me. And now I had to shield myself from it. Music now fell in the same category as static, a blaring television, sirens or yelling kids.

I was so vulnerable to sensory overload that music anywhere in the house had to be turned off. Not turned down. Off. Completely. Silence reigned. I needed to wrap myself in it and protect myself from sound and mental effort.

The music system in the living room went unused. The one in my bedroom gathered dust. My electronic keyboard hunkered down in a closet. CDs and tapes were piled, neglected, in a box in my linen closet.

The endorphins, the uplift, being transported into higher realms of restoration and rejuvenation ... the magic of these tools were lost to me now. Instead of bringing rest and invigoration it left me drained and vibrating.

I asked some friends who are part of our chronically ill community about their experience with music. Names have been shortened to initials for privacy considerations. Here are some of their observations:

K. is not able to listen to music very much because it causes sensory overload. She said, though, that this is improving now after many years and she is hopeful. And K. encourages those who can include music in their lives to do so because it certainly can be good for those who can tolerate it.

D. has no luck with music anymore because it overloads her sensory system. She used to love to sing in the car. If D. is in a remission or on a adrenaline high she can manage to sing loud, happy songs and find joy, but then she has the crash.

R. finds that some music may be emotionally draining due to its associations with certain memories or people. She likes to sing along to her favorite songs but unfortunately, this can require energy that R. really can't afford.

C. has often played the piano as a form of emotional therapy. But, she finds that it usually takes a lot of playing before she gets the therapeutic benefit from it.

V. rarely listens to music anymore. She finds that most of her Latin American taste is too jarring now to her senses. V. does sometimes listen to beautiful Celtic music in the mornings as she do housework or chores. She find this to be immensely soothing.

This is obviously a small pool of opinions but I find it to be a useful one. Each person has a slightly different situation. Seems suitable for the ME/CFS community.

I also know a couple of people who are so severely ill that they were not typing statements for my mini-poll. Their extreme symptoms are such that they can tolerate no sound, let alone music. And they'd best not be using up their tiny energies talking or typing with me or anyone else about it. But since I do know about their situations I want them to be represented here.

Then there's me. I have worked my way up from needing complete silence a decade or so ago, to being able to carefully determine when and how much music I can handle. I don't listen to it, sing it or play it myself on my piano very often. Small doses and strategically timed.

I can't listen to music and focus on anything else at the same time. For me there is no such thing as background music. So there's no soft music on while I'm reading a book. Maybe I can knit if it's a simple pattern. Or maybe I can put an album on the record player while I'm making dinner.

But I always know that I am spending energy and mental sharpness that is in short supply. I know that my muscles will get clunky and shaky if I have estimated wrongly. I might lose my train of thought for the whole evening. I may suddenly realize I am completely done for the day.

A year or so ago I discovered that I could drive with the radio on. Cranked it up. Sang along. Realized I was flooring it with a lead foot responding viscerally to the bass, and had to slow down. Felt normal. Felt great. Words can't adequately express how awesome this was for me. I just know it feels like having crawled through the desert to an oasis.

Are you able to include music in your life?

Photo: Pixabay
 
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Comments

I have a yearning desire to compose music digitally. I constantly get music "in my head" and because I can't sing any more I whistle it and can imagine the orchestration. I do enjoy that and it does actually help bring some better energy into me.
My only problem is I would need a whole new laptop (money!) with LOTS of gigabytes RAM. Then I would need a DAWS (digital audio workstation)which also means money, as the cheap ones have a really synthetic sound. I'd want top of the range.
So that's not possible yet....:(
Wolfcub,

Big dreams are good! Frustrating:) but good. You don't have those things now but who knows what may be in your future ...
 
I have a yearning desire to compose music digitally. I constantly get music "in my head" and because I can't sing any more I whistle it and can imagine the orchestration. I do enjoy that and it does actually help bring some better energy into me.
My only problem is I would need a whole new laptop (money!) with LOTS of gigabytes RAM. Then I would need a DAWS (digital audio workstation)which also means money, as the cheap ones have a really synthetic sound. I'd want top of the range.
So that's not possible yet....:(
Definitely a worthwhile pursuit. It is an amazing way to almost transfer out of your body and temporarily forget about pains and misery. The sounds of some of those soft synths are incredible and you can just get lost in the sound. Technology has improved tremendously even from 5 years ago. Second hand there is lots of high quality gear available.
 
Three years ago music was impossible for me. I was experiencing just about every sensitivity imaginable, sound, light, tactile sensation issues... But I've been slowly and ever so gradually working my way back.

As of right now, I can listen to music at night time for up to an hours time in a darkened room. Basically, if the overall background stimulation is kept slow and low I can handle it.

And the level of complexity that I can withstand has increased as well. A year-and-a-half ago it was binaural beats and minimalist drone music. Now I'm back listening to some moderately complex jazz and a few types of metal.

As long as the music is mostly uniform in volume, not too many squeaks, squawks or squeals and within a certain peak range, I can tolerate it fairly well.

More importantly, in the past six months I've been able to compose and create my own music once again. It's been a slow tedious process, but I've been able to complete several songs within that time frame utilizing my $50 Kindle Fire tablet.

Sure, I can no longer play guitar, keyboards or percussion, but I can manipulate the smaller simulated piano keys on my tablet, and rearrange previously recorded bits and pieces within a specific recording app.

So if any of you out there can still at least move your fingers reasonably well, there are a number of apps out there, a number of free apps that encourage creative throughput.

It's not the same as playing in my home music studio, but despite being bed bound all day long, I've begun to feel somewhat productive, somewhat human, being able to share something homemade.

If anybody is interested in giving this a shot, making their own music in this manner, please let me know. I'd be happy to share a list of the recording apps I've been utilizing and / or possibly offer helpful tips.

Hang in there everybody!
H
 
I am very grateful not to have any negative effects with music. Well, with the music I love best anyway.
The only music that brings me any comfort, joy, sometimes sweet tears, peacefulness or help at all is my favourite classical, and my taste is for mainly gentle music.

But as time goes by there are some composers I used to like and can no longer stand! I can no longer tolerate tenors or sopranos singing opera! It is the most awful din to me now, and unbearable.

I can tolerate very few singing voices any more unless they have a spot-on pitch and a pure light sound.
So I like orchestral, or piano music more nowadays and for some strange reason have developed a fondness for the Oboe.

I used to quite like some Rock music. But the energy of that is way too much for me nowadays.
Other "pop" songs....well rarely now, but now and again I hear one I like. But rarely listen to that channel on radio now.

Music doesn't drain me when I listen to what I most like. Or give me pem. I find it uplifting and it is soothing and a comfort to me.
But one most horrible thing can happen sometimes, when I can't "find my Soul" in it, and the music is just a series of pleasant sounds. But that often passes off in a few days. I hate it when it happens, and it seems to be related to extreme exhaustion during a relapse.
 
I listen to music all day long too. And I am also grateful. Like you I listen to classical music and I have become extremely sensitive to anything out of tune. I only enjoy classical music without too much vibrato which grates on my nerves and sounds out of tune. Fortunately there are many new musicians who have trained in historically informed performance who don't overdo vibrato. otoh I cannot bear most other music. Pop music today is intolerable to me. I start crashing and have to get away from it. Music is my main source of joy during the day. I would hate to lose my ability to enjoy it. It's a terrifying thought.
 
Yesterday evening I tried singing higher than the notes which only produced intermittent singing with croaks, and it worked quite well!
 
Three years ago music was impossible for me. I was experiencing just about every sensitivity imaginable, sound, light, tactile sensation issues... But I've been slowly and ever so gradually working my way back.

As of right now, I can listen to music at night time for up to an hours time in a darkened room. Basically, if the overall background stimulation is kept slow and low I can handle it.

And the level of complexity that I can withstand has increased as well. A year-and-a-half ago it was binaural beats and minimalist drone music. Now I'm back listening to some moderately complex jazz and a few types of metal.

As long as the music is mostly uniform in volume, not too many squeaks, squawks or squeals and within a certain peak range, I can tolerate it fairly well.

More importantly, in the past six months I've been able to compose and create my own music once again. It's been a slow tedious process, but I've been able to complete several songs within that time frame utilizing my $50 Kindle Fire tablet.

Sure, I can no longer play guitar, keyboards or percussion, but I can manipulate the smaller simulated piano keys on my tablet, and rearrange previously recorded bits and pieces within a specific recording app.

So if any of you out there can still at least move your fingers reasonably well, there are a number of apps out there, a number of free apps that encourage creative throughput.

It's not the same as playing in my home music studio, but despite being bed bound all day long, I've begun to feel somewhat productive, somewhat human, being able to share something homemade.

If anybody is interested in giving this a shot, making their own music in this manner, please let me know. I'd be happy to share a list of the recording apps I've been utilizing and / or possibly offer helpful tips.

Hang in there everybody!
H
Howard,

Sounds like you're making some progress. The slow kind, which of course is our kind. Your post is upbeat (yeah, a little music play on words .. oops, did I do it again?:) and hopefully it can offer some reassurance and some ideas to some folks. Thanks for sharing your experience in this.
 
Yesterday evening I tried singing higher than the notes which only produced intermittent singing with croaks, and it worked quite well!
That reminds me of my initial experience. After the shock of having nothing but raucous off-key noise coming out of my mouth I tried majoring on my best notes. I do best with low and high, mid-range not so much. So I went high and things got cleaner quickly. And eventually the mid-range began to get better too.
 
If you think of your singing voice as a muscle, lack of use causes it to waste. BUT you have a 'Muscle Memory' and that memory does not go away. So your voice will come back with use. @Wolfcub if you can play keyboard even just a bit you dont need all the gear you list to do composition. Suggest you check out 'Arranger Keyboards' Yamaha, Roland and most of the well known brands make them. Easy to use and the sound quality is good. Use one myself in combination with a digital multi-track recorder. Oh and my guitars of course.
 
Some music, not very much. Too much sensory input. Also overstimulates and thus, exhausts the right ear. Dr. Alfred Tomatis, who passed on some years ago, did wonderful research on hearing, use of hearing, and helped many people with balancing their hearing and how they listened. His work helped me tremendously. I am careful about sound.

A little music goes a long way now. :)
 
Some music, not very much. Too much sensory input. Also overstimulates and thus, exhausts the right ear. Dr. Alfred Tomatis, who passed on some years ago, did wonderful research on hearing, use of hearing, and helped many people with balancing their hearing and how they listened. His work helped me tremendously. I am careful about sound.

A little music goes a long way now. :)
Hope4,

I'm glad to hear you've found ways to be able to have some music in your life.

Nice screen name by the way:)
 
Why Is Music So Hard for People With ME/CFS?
Are you able to include music in your life?
After doing antiviral therapy and an effective antibiotic I was able to regain about 30% of my energy and reduce photophobia and noise sensitivity by about 70%. People stop listening to music because it is painful and drains energy.

Music is hard because the nerves are infected and inflammed. Just as if you had a broken foot, it hurts when stimulated. Inflammed tissue becomes supersensitive to pain.

Also, the worse you get with SEIDS (ie. CFS), the less energy you have. Listening to music takes energy so in conservation mode it is stopped.
 
Jody this is so true for so many apparently and me included. My flute, in the closet. Talk about: exertion intolerance.

I briefly experienced LIFT :angel:by obtaining a new turntable and brought up some of my old records. I was so excited.:)

I played Inna Godda Davida, loud. :lol: I have no problem usually listening to something I really like: loud(ish). But if that sound was my husband putting dishes away and slamming cupboards.....:sluggish::pem::yuck:

so after three songs I was rather collapsed on the floor. A month later- dust covers the turn table.
 
Music is difficult for me though I loved music before I was sick. I need to spend much of my day in silence or it's all too much for my brain. If I do have music playing, it makes it hard for me to be able to concentrate on anything else eg if someone is trying to me.
 
Why Is Music So Hard for People With ME/CFS?

by Jody Smith
Oh, how I love music! This magic can lift our spirits and calm our weary minds. Maybe it can even help us heal. Goodness knows, we who live with ME/CFS need these things. We're probably not getting much of this elsewhere. So if music is so good for us, why is it so hard to have it in our lives? Why, for many of us, is music so exhausting?


Sorry, I have no real answers to these questions. Just more stories.

I think I was a fairly typical adolescent of the 1970s. I spent as much time attached to my little transistor radio as I could. Like many teenagers, I didn't have a great deal of control over my life. I didn't like school and I immersed myself as much as possible in a world of music.

I spent time with friends who were musicians. I lived with a musician for five years starting in University. We often had piano keyboards and drums in our living room. People would just pick up an instrument and break into song at the drop of a hat. And harmonize.

My happiest times were spent in folk musician coffee houses and University pubs where my favorite musicians were playing.

Over the decades I've listened to 45s, to albums, then tapes, then CDs. Music of a variety of styles created the soundtrack to my life. As an adult I listened to music in my living room, in my bedroom, and in the car. I sang in my church's worship team. I played my piano at home. I sang as I worked and when I went out for walks.

Music was uplifting. It was soothing.

But when I got very very ill the music stopped. Now, it wore me out too much to listen to it. I certainly wasn't singing or playing an instrument. In the days when the ticking of a clock was enough to chase me out of a room, even beautiful music seemed more damaging than revitalizing.

It left me overwhelmed with dizziness and nausea. Vertigo tipped my world. Mental chaos and fragmentation caused my thoughts to fly like shards in all directions.

Even when I improved a bit years later, and could listen to some music once again, I would pay for it for hours afterward. I had to be prepared to sacrifice the rest of the day, rendered incapable of coherent thought or getting anything done.

It was a tragic, heartbreaking loss. Not only was it a loss of beauty and transcendence it was a loss of a piece of myself. Music had been a part of me. And now I had to shield myself from it. Music now fell in the same category as static, a blaring television, sirens or yelling kids.

I was so vulnerable to sensory overload that music anywhere in the house had to be turned off. Not turned down. Off. Completely. Silence reigned. I needed to wrap myself in it and protect myself from sound and mental effort.

The music system in the living room went unused. The one in my bedroom gathered dust. My electronic keyboard hunkered down in a closet. CDs and tapes were piled, neglected, in a box in my linen closet.

The endorphins, the uplift, being transported into higher realms of restoration and rejuvenation ... the magic of these tools were lost to me now. Instead of bringing rest and invigoration it left me drained and vibrating.

I asked some friends who are part of our chronically ill community about their experience with music. Names have been shortened to initials for privacy considerations. Here are some of their observations:

K. is not able to listen to music very much because it causes sensory overload. She said, though, that this is improving now after many years and she is hopeful. And K. encourages those who can include music in their lives to do so because it certainly can be good for those who can tolerate it.

D. has no luck with music anymore because it overloads her sensory system. She used to love to sing in the car. If D. is in a remission or on a adrenaline high she can manage to sing loud, happy songs and find joy, but then she has the crash.

R. finds that some music may be emotionally draining due to its associations with certain memories or people. She likes to sing along to her favorite songs but unfortunately, this can require energy that R. really can't afford.

C. has often played the piano as a form of emotional therapy. But, she finds that it usually takes a lot of playing before she gets the therapeutic benefit from it.

V. rarely listens to music anymore. She finds that most of her Latin American taste is too jarring now to her senses. V. does sometimes listen to beautiful Celtic music in the mornings as she do housework or chores. She find this to be immensely soothing.

This is obviously a small pool of opinions but I find it to be a useful one. Each person has a slightly different situation. Seems suitable for the ME/CFS community.

I also know a couple of people who are so severely ill that they were not typing statements for my mini-poll. Their extreme symptoms are such that they can tolerate no sound, let alone music. And they'd best not be using up their tiny energies talking or typing with me or anyone else about it. But since I do know about their situations I want them to be represented here.

Then there's me. I have worked my way up from needing complete silence a decade or so ago, to being able to carefully determine when and how much music I can handle. I don't listen to it, sing it or play it myself on my piano very often. Small doses and strategically timed.

I can't listen to music and focus on anything else at the same time. For me there is no such thing as background music. So there's no soft music on while I'm reading a book. Maybe I can knit if it's a simple pattern. Or maybe I can put an album on the record player while I'm making dinner.

But I always know that I am spending energy and mental sharpness that is in short supply. I know that my muscles will get clunky and shaky if I have estimated wrongly. I might lose my train of thought for the whole evening. I may suddenly realize I am completely done for the day.

A year or so ago I discovered that I could drive with the radio on. Cranked it up. Sang along. Realized I was flooring it with a lead foot responding viscerally to the bass, and had to slow down. Felt normal. Felt great. Words can't adequately express how awesome this was for me. I just know it feels like having crawled through the desert to an oasis.

Are you able to include music in your life?

Photo: Pixabay
 
Why Is Music So Hard for People With ME/CFS?

by Jody Smith
Oh, how I love music! This magic can lift our spirits and calm our weary minds. Maybe it can even help us heal. Goodness knows, we who live with ME/CFS need these things. We're probably not getting much of this elsewhere. So if music is so good for us, why is it so hard to have it in our lives? Why, for many of us, is music so exhausting?


Sorry, I have no real answers to these questions. Just more stories.

I think I was a fairly typical adolescent of the 1970s. I spent as much time attached to my little transistor radio as I could. Like many teenagers, I didn't have a great deal of control over my life. I didn't like school and I immersed myself as much as possible in a world of music.

I spent time with friends who were musicians. I lived with a musician for five years starting in University. We often had piano keyboards and drums in our living room. People would just pick up an instrument and break into song at the drop of a hat. And harmonize.

My happiest times were spent in folk musician coffee houses and University pubs where my favorite musicians were playing.

Over the decades I've listened to 45s, to albums, then tapes, then CDs. Music of a variety of styles created the soundtrack to my life. As an adult I listened to music in my living room, in my bedroom, and in the car. I sang in my church's worship team. I played my piano at home. I sang as I worked and when I went out for walks.

Music was uplifting. It was soothing.

But when I got very very ill the music stopped. Now, it wore me out too much to listen to it. I certainly wasn't singing or playing an instrument. In the days when the ticking of a clock was enough to chase me out of a room, even beautiful music seemed more damaging than revitalizing.

It left me overwhelmed with dizziness and nausea. Vertigo tipped my world. Mental chaos and fragmentation caused my thoughts to fly like shards in all directions.

Even when I improved a bit years later, and could listen to some music once again, I would pay for it for hours afterward. I had to be prepared to sacrifice the rest of the day, rendered incapable of coherent thought or getting anything done.

It was a tragic, heartbreaking loss. Not only was it a loss of beauty and transcendence it was a loss of a piece of myself. Music had been a part of me. And now I had to shield myself from it. Music now fell in the same category as static, a blaring television, sirens or yelling kids.

I was so vulnerable to sensory overload that music anywhere in the house had to be turned off. Not turned down. Off. Completely. Silence reigned. I needed to wrap myself in it and protect myself from sound and mental effort.

The music system in the living room went unused. The one in my bedroom gathered dust. My electronic keyboard hunkered down in a closet. CDs and tapes were piled, neglected, in a box in my linen closet.

The endorphins, the uplift, being transported into higher realms of restoration and rejuvenation ... the magic of these tools were lost to me now. Instead of bringing rest and invigoration it left me drained and vibrating.

I asked some friends who are part of our chronically ill community about their experience with music. Names have been shortened to initials for privacy considerations. Here are some of their observations:

K. is not able to listen to music very much because it causes sensory overload. She said, though, that this is improving now after many years and she is hopeful. And K. encourages those who can include music in their lives to do so because it certainly can be good for those who can tolerate it.

D. has no luck with music anymore because it overloads her sensory system. She used to love to sing in the car. If D. is in a remission or on a adrenaline high she can manage to sing loud, happy songs and find joy, but then she has the crash.

R. finds that some music may be emotionally draining due to its associations with certain memories or people. She likes to sing along to her favorite songs but unfortunately, this can require energy that R. really can't afford.

C. has often played the piano as a form of emotional therapy. But, she finds that it usually takes a lot of playing before she gets the therapeutic benefit from it.

V. rarely listens to music anymore. She finds that most of her Latin American taste is too jarring now to her senses. V. does sometimes listen to beautiful Celtic music in the mornings as she do housework or chores. She find this to be immensely soothing.

This is obviously a small pool of opinions but I find it to be a useful one. Each person has a slightly different situation. Seems suitable for the ME/CFS community.

I also know a couple of people who are so severely ill that they were not typing statements for my mini-poll. Their extreme symptoms are such that they can tolerate no sound, let alone music. And they'd best not be using up their tiny energies talking or typing with me or anyone else about it. But since I do know about their situations I want them to be represented here.

Then there's me. I have worked my way up from needing complete silence a decade or so ago, to being able to carefully determine when and how much music I can handle. I don't listen to it, sing it or play it myself on my piano very often. Small doses and strategically timed.

I can't listen to music and focus on anything else at the same time. For me there is no such thing as background music. So there's no soft music on while I'm reading a book. Maybe I can knit if it's a simple pattern. Or maybe I can put an album on the record player while I'm making dinner.

But I always know that I am spending energy and mental sharpness that is in short supply. I know that my muscles will get clunky and shaky if I have estimated wrongly. I might lose my train of thought for the whole evening. I may suddenly realize I am completely done for the day.

A year or so ago I discovered that I could drive with the radio on. Cranked it up. Sang along. Realized I was flooring it with a lead foot responding viscerally to the bass, and had to slow down. Felt normal. Felt great. Words can't adequately express how awesome this was for me. I just know it feels like having crawled through the desert to an oasis.

Are you able to include music in your life?

Photo: Pixabay
 
For me,there there are times I need quiet. It also strongly deepends on the music. I cannot tolerate frantic noise. I cannot tolerate loud commercials on tv. Why are they yelling at me. Commercials easy to mute. I can feel drums. My ears rebel to many sounds. The pitch and frantic whinig of certain vehicles. The neighbor's screaming vacuum. Yes it is exhausting physically. I tend to listen to gentle music, but today is turning out to be a no noise day. I can hear and feel the dryer from my bed. The Windows are open so I can hear a few birds. Sometimes I feel like someone is playing a kettle drum on my ear drum.
When I make these statements to others, they don't get it. The understanding of this forum is "music to my ears".
 
1gooddog i just stopped watching tv the last few years. Problem solved :)
 
The pitch and frantic whinig of certain vehicles.
One of my last field trips was to a construction site where I met four consultants. We had this conversation while the backup bells went off on this nearby giant truck. And the other equipment. And they just keep talking and standing there and I am: going to just whig out and DIE HERE AND RIGHT NOW. I look at all of them with a type in incredulity. How can you tolerate this noise ? How are you not: just totally Ill: like I feel.

(and then I had PEM For the next week).
 
My ears rebel to many sounds.
For me: its the unexpected noises that are the worst. So I can put on Inna Godda Davida and play Iron Butterfly loud. But my husband crashing the glass bottles or dishes or slamming the cupbooard causes me to just jump out of my body and scream.

so something related to startle and abrupt..happens here. Shot nervous system.