pink and orange coloured image
April 5, 2023

Navigating Time and Energy as an Autistic and Chronically Ill Person

From chronic fatigue to sensory needs, overstimulation to pain, there is a lot to navigate.

Charli Clement

Guest Writer

No items found.

Being both autistic and chronically ill can come with an abundance of contradictions and clashing traits and symptoms, meaning you deal with a balancing act every single day. From chronic fatigue to sensory needs, overstimulation to pain, there is a lot to navigate.

Often when you have time, you need rest; and when you have energy, you have to work out what’s best to use that energy on. This post will explore some of what I experience and how I navigate my needs.

Scheduling for sensory needs

Sensory needs are probably the part of being autistic that I have to navigate most throughout the day - and they are also affected by my chronic illnesses. They are complex, can change within seconds, and are something I have to plan for when I leave the house. It’s impossible to cover every sensory need in this piece, but I want to share a few of my sensory needs and how I meet them.

I am primarily hypersensitive to external senses but experience hyposensitivity when it comes to my internal senses. My hypersensitivity to external senses, like noise or light,  increases when my chronic pain and fatigue are higher. Because of this, I am more likely to experience meltdowns or shutdowns when I am in a chronic illness flare-up.

I carry around a variety of sensory tools when I go out to help with overstimulation, like earplugs, ear defenders, and fidget/stim toys. I also like to make sure I have “decompression time” after going out or after work meetings. Sometimes this is just ten minutes, sometimes it’s an hour or more - however long it is, scheduling it in Tiimo can be helpful.

Whilst I am extremely hypersensitive to noise, I also sometimes experience hyposensitivity to it which causes understimulation. That sounds like a contradiction, but it just means a need for noises that I have chosen and that hit the senses in a different, more preferable way - for me, this is mostly music. I like to make sure that I incorporate this into my routine, as it reduces that understimulation and can often regulate both my sensory and emotional needs.

When it comes to my interoception sense or the ways in which I feel sensations in my body, I am very hyposensitive and don’t feel them in the ways others do. I don’t feel hunger or thirst until I am severely dizzy - which isn’t convenient when you have a condition with a treatment plan of lots of water and additional salt. Scheduling mealtimes and reminders for snacks and hydration help me decrease the chances of having a flare-up of tachycardia and dizziness.

I also struggle to process and discuss pain. I have chronic pain as part of my chronic illnesses, so it is something I am constantly dealing with - and yet, due to my interoceptive hyposensitivity, I find it very hard to differentiate between types of pain or work out how to alleviate it.

The rest-stimulation cycle

One of the main things I often have to navigate as an autistic and chronically ill person - alongside having ADHD - is what I refer to as the “rest-stimulation cycle”.

The cycle looks like this:

  • Resting
  • Becoming understimulated
  • Engaging in stimming
  • That causing more pain, fatigue and physical crash

One of the ways I’m trying to reduce this is by engaging in methods of stimming that are lower energy or more accessible to me, and doing so before the understimulation occurs.

Some of these include:

  • Apps for stimming, like Antistress or Heat Pad
  • Chewing gum, sucking sour sweets or eating crunchy snacks
  • Low-energy fidget/stim toys like tangles and pop-its
  • Using a weighted lap pad rather than a weighted blanket if those are too heavy
  • Wearing blue light glasses or sunglasses which can help with looking at a screen or book

Pacing

Pacing refers to a method that chronically ill people follow where one takes more breaks, alternates activities with resting, and does tasks more slowly. This is to avoid what is known as “boom-bust” cycling, where you do lots of activity because you feel good, which in turn causes a crash and increases chronic illness symptoms.

Pacing isn’t so simple for those of us who are neurodivergent and chronically ill. Sometimes we find it harder to plan our lives, make more impulsive decisions, or might experience executive functioning differences. I tend to have great intentions of doing a task in one time slot and resting in another but find myself in task freeze, sitting at my desk for longer than preferable, unable to begin and complete the task.

This might mean that pacing feels out of reach, and that’s completely valid. Sometimes it’s about just doing what you need in the moment. It can help to set tasks or small routines that you know you want to get done, without putting pressure on when exactly you’ll do them or how long they will take. I use Tiimo’s “anytime during the day” feature to do this.

I found when I was doing traditional pacing that I was constantly understimulated and hitting the issue of the rest-understimulation cycle. I also found that, if I stopped an activity to rest, I would struggle starting another one later. One of the ways I navigate this is through a pacing method called energy switching, which I learned from Natasha Lipman.

Energy switching is where, instead of blocks of cognitive rest after an activity, you break them down into different categories, like physical, mental or rest tasks. These categories use different types of energy, so you are still pacing yourself and preventing that burnout or boom-bust cycle.

Another method of pacing is ranking your tasks or activities with the amount of energy they might take - many people do this through a traffic light or low-high rating. In Tiimo, you could do this by adding your tasks and assigning them the traffic light colours alongside the icons.

Finally, another method of pacing is the Pomodoro method where you do something for a specific amount of time (traditionally 25 minutes, but you could adjust this to work for you) and then rest for another (traditionally 5 minutes, but again, you may need longer to make it right for your pacing needs). This can help you be conscious of how long you have been working and make sure you take breaks - for those of us who hyperfocus, this is especially important.

Routines & predictability

Like a lot of autistic people, I love routines and predictability. Unfortunately, chronic illnesses tend to be unpredictable, with flare-ups coming up without warning, new symptoms to navigate, and plans getting moved or cancelled.

Some of the ways I navigate interruptions to my routines include:

  • Having the same routines, but not placing a time on them (like a “morning” routine that might not happen until the afternoon)
  • Coming up with specific routines for before and after appointments to help me settle
  • Having habits and routines for periods of flare-up

Overall…

Navigating being both autistic and chronically ill is complicated and this article has only covered a few aspects of the clashes and combinations that can occur. Much of the advice given to you by those focusing on neurodiversity or chronic illness often doesn’t apply to those of us who are both autistic and chronically ill, and that can be really frustrating and difficult to process.

Hopefully, this article has given you an idea or two about ways to better navigate your time and energy as an autistic and chronically ill person. It’s something I’m still working on, because my needs change quite often. And sometimes, even when I know better, I end up in a boom-bust period or do too much because life gets busy or I just hope it won’t affect me.

Remember: you’re not a failure if you struggle to balance your needs as an autistic and chronically ill person. If you find it hard to work out how best to navigate, or if you have a flare-up even when you’ve put new things in place - that’s okay! You’re allowed to be emotional about it, get annoyed at your body, or wish things were simpler. Even with all the self-help advice in the world - it’s just not that simple.

For more information on life as an autistic and chronically ill person, my debut book is coming soon with Jessica Kingsley Publishers.

Daily planning designed to change your life.

Visualize time. Build focus. Make life happen. Tiimo is designed for people with ADHD, Autism, and everyone who thinks, works, and plans differently.

Get started with our free trial. Cancel anytime.

April 5, 2023

Navigating Time and Energy as an Autistic and Chronically Ill Person

From chronic fatigue to sensory needs, overstimulation to pain, there is a lot to navigate.

Charli Clement

Guest Writer

No items found.

Being both autistic and chronically ill can come with an abundance of contradictions and clashing traits and symptoms, meaning you deal with a balancing act every single day. From chronic fatigue to sensory needs, overstimulation to pain, there is a lot to navigate.

Often when you have time, you need rest; and when you have energy, you have to work out what’s best to use that energy on. This post will explore some of what I experience and how I navigate my needs.

Scheduling for sensory needs

Sensory needs are probably the part of being autistic that I have to navigate most throughout the day - and they are also affected by my chronic illnesses. They are complex, can change within seconds, and are something I have to plan for when I leave the house. It’s impossible to cover every sensory need in this piece, but I want to share a few of my sensory needs and how I meet them.

I am primarily hypersensitive to external senses but experience hyposensitivity when it comes to my internal senses. My hypersensitivity to external senses, like noise or light,  increases when my chronic pain and fatigue are higher. Because of this, I am more likely to experience meltdowns or shutdowns when I am in a chronic illness flare-up.

I carry around a variety of sensory tools when I go out to help with overstimulation, like earplugs, ear defenders, and fidget/stim toys. I also like to make sure I have “decompression time” after going out or after work meetings. Sometimes this is just ten minutes, sometimes it’s an hour or more - however long it is, scheduling it in Tiimo can be helpful.

Whilst I am extremely hypersensitive to noise, I also sometimes experience hyposensitivity to it which causes understimulation. That sounds like a contradiction, but it just means a need for noises that I have chosen and that hit the senses in a different, more preferable way - for me, this is mostly music. I like to make sure that I incorporate this into my routine, as it reduces that understimulation and can often regulate both my sensory and emotional needs.

When it comes to my interoception sense or the ways in which I feel sensations in my body, I am very hyposensitive and don’t feel them in the ways others do. I don’t feel hunger or thirst until I am severely dizzy - which isn’t convenient when you have a condition with a treatment plan of lots of water and additional salt. Scheduling mealtimes and reminders for snacks and hydration help me decrease the chances of having a flare-up of tachycardia and dizziness.

I also struggle to process and discuss pain. I have chronic pain as part of my chronic illnesses, so it is something I am constantly dealing with - and yet, due to my interoceptive hyposensitivity, I find it very hard to differentiate between types of pain or work out how to alleviate it.

The rest-stimulation cycle

One of the main things I often have to navigate as an autistic and chronically ill person - alongside having ADHD - is what I refer to as the “rest-stimulation cycle”.

The cycle looks like this:

  • Resting
  • Becoming understimulated
  • Engaging in stimming
  • That causing more pain, fatigue and physical crash

One of the ways I’m trying to reduce this is by engaging in methods of stimming that are lower energy or more accessible to me, and doing so before the understimulation occurs.

Some of these include:

  • Apps for stimming, like Antistress or Heat Pad
  • Chewing gum, sucking sour sweets or eating crunchy snacks
  • Low-energy fidget/stim toys like tangles and pop-its
  • Using a weighted lap pad rather than a weighted blanket if those are too heavy
  • Wearing blue light glasses or sunglasses which can help with looking at a screen or book

Pacing

Pacing refers to a method that chronically ill people follow where one takes more breaks, alternates activities with resting, and does tasks more slowly. This is to avoid what is known as “boom-bust” cycling, where you do lots of activity because you feel good, which in turn causes a crash and increases chronic illness symptoms.

Pacing isn’t so simple for those of us who are neurodivergent and chronically ill. Sometimes we find it harder to plan our lives, make more impulsive decisions, or might experience executive functioning differences. I tend to have great intentions of doing a task in one time slot and resting in another but find myself in task freeze, sitting at my desk for longer than preferable, unable to begin and complete the task.

This might mean that pacing feels out of reach, and that’s completely valid. Sometimes it’s about just doing what you need in the moment. It can help to set tasks or small routines that you know you want to get done, without putting pressure on when exactly you’ll do them or how long they will take. I use Tiimo’s “anytime during the day” feature to do this.

I found when I was doing traditional pacing that I was constantly understimulated and hitting the issue of the rest-understimulation cycle. I also found that, if I stopped an activity to rest, I would struggle starting another one later. One of the ways I navigate this is through a pacing method called energy switching, which I learned from Natasha Lipman.

Energy switching is where, instead of blocks of cognitive rest after an activity, you break them down into different categories, like physical, mental or rest tasks. These categories use different types of energy, so you are still pacing yourself and preventing that burnout or boom-bust cycle.

Another method of pacing is ranking your tasks or activities with the amount of energy they might take - many people do this through a traffic light or low-high rating. In Tiimo, you could do this by adding your tasks and assigning them the traffic light colours alongside the icons.

Finally, another method of pacing is the Pomodoro method where you do something for a specific amount of time (traditionally 25 minutes, but you could adjust this to work for you) and then rest for another (traditionally 5 minutes, but again, you may need longer to make it right for your pacing needs). This can help you be conscious of how long you have been working and make sure you take breaks - for those of us who hyperfocus, this is especially important.

Routines & predictability

Like a lot of autistic people, I love routines and predictability. Unfortunately, chronic illnesses tend to be unpredictable, with flare-ups coming up without warning, new symptoms to navigate, and plans getting moved or cancelled.

Some of the ways I navigate interruptions to my routines include:

  • Having the same routines, but not placing a time on them (like a “morning” routine that might not happen until the afternoon)
  • Coming up with specific routines for before and after appointments to help me settle
  • Having habits and routines for periods of flare-up

Overall…

Navigating being both autistic and chronically ill is complicated and this article has only covered a few aspects of the clashes and combinations that can occur. Much of the advice given to you by those focusing on neurodiversity or chronic illness often doesn’t apply to those of us who are both autistic and chronically ill, and that can be really frustrating and difficult to process.

Hopefully, this article has given you an idea or two about ways to better navigate your time and energy as an autistic and chronically ill person. It’s something I’m still working on, because my needs change quite often. And sometimes, even when I know better, I end up in a boom-bust period or do too much because life gets busy or I just hope it won’t affect me.

Remember: you’re not a failure if you struggle to balance your needs as an autistic and chronically ill person. If you find it hard to work out how best to navigate, or if you have a flare-up even when you’ve put new things in place - that’s okay! You’re allowed to be emotional about it, get annoyed at your body, or wish things were simpler. Even with all the self-help advice in the world - it’s just not that simple.

For more information on life as an autistic and chronically ill person, my debut book is coming soon with Jessica Kingsley Publishers.

Daily planning designed to change your life.

Visualize time. Build focus. Make life happen. Tiimo is designed for people with ADHD, Autism, and everyone who thinks, works, and plans differently.

Get started with our free trial. Cancel anytime.

Navigating Time and Energy as an Autistic and Chronically Ill Person
April 5, 2023

Navigating Time and Energy as an Autistic and Chronically Ill Person

From chronic fatigue to sensory needs, overstimulation to pain, there is a lot to navigate.

Georgina Shute

Georgina is an ADHD coach and digital leader. She set up KindTwo to empower as many people as possible to work with Neurodiversity - not against it.

No items found.

Being both autistic and chronically ill can come with an abundance of contradictions and clashing traits and symptoms, meaning you deal with a balancing act every single day. From chronic fatigue to sensory needs, overstimulation to pain, there is a lot to navigate.

Often when you have time, you need rest; and when you have energy, you have to work out what’s best to use that energy on. This post will explore some of what I experience and how I navigate my needs.

Scheduling for sensory needs

Sensory needs are probably the part of being autistic that I have to navigate most throughout the day - and they are also affected by my chronic illnesses. They are complex, can change within seconds, and are something I have to plan for when I leave the house. It’s impossible to cover every sensory need in this piece, but I want to share a few of my sensory needs and how I meet them.

I am primarily hypersensitive to external senses but experience hyposensitivity when it comes to my internal senses. My hypersensitivity to external senses, like noise or light,  increases when my chronic pain and fatigue are higher. Because of this, I am more likely to experience meltdowns or shutdowns when I am in a chronic illness flare-up.

I carry around a variety of sensory tools when I go out to help with overstimulation, like earplugs, ear defenders, and fidget/stim toys. I also like to make sure I have “decompression time” after going out or after work meetings. Sometimes this is just ten minutes, sometimes it’s an hour or more - however long it is, scheduling it in Tiimo can be helpful.

Whilst I am extremely hypersensitive to noise, I also sometimes experience hyposensitivity to it which causes understimulation. That sounds like a contradiction, but it just means a need for noises that I have chosen and that hit the senses in a different, more preferable way - for me, this is mostly music. I like to make sure that I incorporate this into my routine, as it reduces that understimulation and can often regulate both my sensory and emotional needs.

When it comes to my interoception sense or the ways in which I feel sensations in my body, I am very hyposensitive and don’t feel them in the ways others do. I don’t feel hunger or thirst until I am severely dizzy - which isn’t convenient when you have a condition with a treatment plan of lots of water and additional salt. Scheduling mealtimes and reminders for snacks and hydration help me decrease the chances of having a flare-up of tachycardia and dizziness.

I also struggle to process and discuss pain. I have chronic pain as part of my chronic illnesses, so it is something I am constantly dealing with - and yet, due to my interoceptive hyposensitivity, I find it very hard to differentiate between types of pain or work out how to alleviate it.

The rest-stimulation cycle

One of the main things I often have to navigate as an autistic and chronically ill person - alongside having ADHD - is what I refer to as the “rest-stimulation cycle”.

The cycle looks like this:

  • Resting
  • Becoming understimulated
  • Engaging in stimming
  • That causing more pain, fatigue and physical crash

One of the ways I’m trying to reduce this is by engaging in methods of stimming that are lower energy or more accessible to me, and doing so before the understimulation occurs.

Some of these include:

  • Apps for stimming, like Antistress or Heat Pad
  • Chewing gum, sucking sour sweets or eating crunchy snacks
  • Low-energy fidget/stim toys like tangles and pop-its
  • Using a weighted lap pad rather than a weighted blanket if those are too heavy
  • Wearing blue light glasses or sunglasses which can help with looking at a screen or book

Pacing

Pacing refers to a method that chronically ill people follow where one takes more breaks, alternates activities with resting, and does tasks more slowly. This is to avoid what is known as “boom-bust” cycling, where you do lots of activity because you feel good, which in turn causes a crash and increases chronic illness symptoms.

Pacing isn’t so simple for those of us who are neurodivergent and chronically ill. Sometimes we find it harder to plan our lives, make more impulsive decisions, or might experience executive functioning differences. I tend to have great intentions of doing a task in one time slot and resting in another but find myself in task freeze, sitting at my desk for longer than preferable, unable to begin and complete the task.

This might mean that pacing feels out of reach, and that’s completely valid. Sometimes it’s about just doing what you need in the moment. It can help to set tasks or small routines that you know you want to get done, without putting pressure on when exactly you’ll do them or how long they will take. I use Tiimo’s “anytime during the day” feature to do this.

I found when I was doing traditional pacing that I was constantly understimulated and hitting the issue of the rest-understimulation cycle. I also found that, if I stopped an activity to rest, I would struggle starting another one later. One of the ways I navigate this is through a pacing method called energy switching, which I learned from Natasha Lipman.

Energy switching is where, instead of blocks of cognitive rest after an activity, you break them down into different categories, like physical, mental or rest tasks. These categories use different types of energy, so you are still pacing yourself and preventing that burnout or boom-bust cycle.

Another method of pacing is ranking your tasks or activities with the amount of energy they might take - many people do this through a traffic light or low-high rating. In Tiimo, you could do this by adding your tasks and assigning them the traffic light colours alongside the icons.

Finally, another method of pacing is the Pomodoro method where you do something for a specific amount of time (traditionally 25 minutes, but you could adjust this to work for you) and then rest for another (traditionally 5 minutes, but again, you may need longer to make it right for your pacing needs). This can help you be conscious of how long you have been working and make sure you take breaks - for those of us who hyperfocus, this is especially important.

Routines & predictability

Like a lot of autistic people, I love routines and predictability. Unfortunately, chronic illnesses tend to be unpredictable, with flare-ups coming up without warning, new symptoms to navigate, and plans getting moved or cancelled.

Some of the ways I navigate interruptions to my routines include:

  • Having the same routines, but not placing a time on them (like a “morning” routine that might not happen until the afternoon)
  • Coming up with specific routines for before and after appointments to help me settle
  • Having habits and routines for periods of flare-up

Overall…

Navigating being both autistic and chronically ill is complicated and this article has only covered a few aspects of the clashes and combinations that can occur. Much of the advice given to you by those focusing on neurodiversity or chronic illness often doesn’t apply to those of us who are both autistic and chronically ill, and that can be really frustrating and difficult to process.

Hopefully, this article has given you an idea or two about ways to better navigate your time and energy as an autistic and chronically ill person. It’s something I’m still working on, because my needs change quite often. And sometimes, even when I know better, I end up in a boom-bust period or do too much because life gets busy or I just hope it won’t affect me.

Remember: you’re not a failure if you struggle to balance your needs as an autistic and chronically ill person. If you find it hard to work out how best to navigate, or if you have a flare-up even when you’ve put new things in place - that’s okay! You’re allowed to be emotional about it, get annoyed at your body, or wish things were simpler. Even with all the self-help advice in the world - it’s just not that simple.

For more information on life as an autistic and chronically ill person, my debut book is coming soon with Jessica Kingsley Publishers.

Read more

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