Coping with brain fatigue (neurofatigue)

Brain fatigue is debilitating. Everything requires effort. Your daily energy often runs out after a few hours, or even sooner.
In science, the term "neurofatigue" or "fatigue" is sometimes used to indicate that it is different from "normal" fatigue. In Dutch it is sometimes called brain fatigue or organic fatigue. The brain is literally tired.
On another page, we explain what brain fatigue/neurofatigue is and what it entails.

Below we discuss how you and those around you can cope with this. We offer various tips and strategies. Incidentally, many of these tips also apply to dealing with cognitive overstimulation. Sensory overstimulation involves the most common sensory stimuli, such as sunlight, normal sounds, heat, cold, or normal crowds, that are no longer tolerated. We have a dedicated page on coping with this.

There are various strategies, all of which boil down to the fact that a brain injury is permanent and that you should always schedule your rest and take it after exertion. Not only should rest be planned, but also recovery time. People with brain injuries recover more slowly from fatigue. A night's sleep isn't enough.
It's almost incomprehensible for others that their overall functioning (including physical) can fluctuate so much. What went well one day may not work the next day.

Brain fatigue, neurofatigue, fatigue, or organic fatigue are the terms for the enormous, intense tiredness that may accompany brain injury.

1. Build in relaxation and recovery time

It is important for someone with brain injury not to place excessive demands on oneself when the energy is limited.

Gradually, you will learn roughly what you can handle in a day. This is also called daily energy.
This also applies to what you can handle in a week. You could call this weekly energy.

Try to schedule your activity level and recovery time so that you're sufficiently stimulated, but not exhausted. Also, be careful not to do too little. This is called underloading.
Try to find a balance between underloading and overloading. Remember that the upper limit is truly the limit. It's all about finding the right balance.

One person's daily energy is two hours a day, while another might have four. It's important that if you know your daily energy is two hours, you don't schedule energy-consuming activities (or stimuli) around it, if you can even plan them. So, it's important to figure out what your personal daily energy is.

2. Guard your own boundaries

Try to communicate your boundaries to others. You can do this by saying "no" clearly, kindly, and assertively.

Those who cannot communicate boundaries well can often still communicate their wishes. So instead of "No, I can't tomorrow," you can say, "I wish we could..." "I'd like it if we..."

Setting boundaries can be difficult. But it's very rewarding. You're doing yourself a favor.

Those who overstep their boundaries too often and allow themselves to be exhausted may develop chronic fatigue.

Maintaining boundaries can also come at a price in your family, work, and social life.
Sometimes your partner or friends and family members may not understand. They might label it negatively and think you don't feel like doing anything.

You may also not be able to make time for everyone anymore. This can lead to losing people. This can lead to loneliness. It also means you might struggle with your new self-image.

Living such a measured life means people have to compromise in many aspects of life. It also means that unexpected worries, setbacks, renovations at the neighbors', or unexpected visits immediately drain your energy.
It means grieving or having to accept...

3. Carefully identify your abilities

What you can and cannot handle is unclear at first. People often overestimate their abilities initially. They believe they can still function at their "pre-brain injury" level or slightly below. They accelerate vigorously and...then have to slam on the brakes.

By carefully exploring what you are able to do and not able to do, you will learn:

• how sick you may feel when you reached your limit
• how you can relax or unwind
• how long your recovery time is from exertion/activity
• when you will return to your level of reasonable functioning and how you can stay there

Therfore, it is important to carefully experiment with what you are able to do. Some days you may be able to do more than other days. Because of this, it may take a while before you know what you can and cannot do.

Sometimes you have to accept the consequences if you insist on doing something that's actually beyond your limits.

If possible, see if you can start moving and exercising again. Sometimes you can even seek professional help with this, for example, from a physiotherapist.

Above all, it's important to remember to choose things you enjoy. And not just expend all your energy on things you feel you "have to."

Regularly choosing things you enjoy may also boost your energy.

4. Discuss the fatigue with your doctor or your general practitioner

If fatigue limits your daily life, it's a good idea to discuss it with your general practitioner or rehabilitation specialist. The doctor can also use a physical examination or a blood test to determine whether other conditions besides the brain injury are present.

For example: thyroid problems or other hormonal imbalances, vitamin deficiencies, or anemia.

(See also 7 below for a comprehensive list of other possible organic causes.)

5. Explain to family and friends what the fatigue means to you

We recommend that people share information about their fatigue using a card or a "family and friends letter."

You can also involve your employer and colleagues. Explain what the fatigue means to you. Indicate what they can do for you or what they should pay attention to. It will be helpful if those around you (friends, family, neighbors, employers, etc.) can gain some understanding of this.

Your neurofatigue will also have a huge impact on them and they may struggle with it.

Some families benefit from a family meeting.

A checklist and the tips on this page may be helpful in this process. Using the brain injury checklist,

everyone can express how difficult they find it. Perhaps agreements can be made and/or out-of-the-box solutions devised.

6. Connect with people in a similar situation

It may be helpful to connect with others who have experienced the same thing.

Besides finding common ground and sharing experiences, you can learn from each other how to cope with fatigue. There are various forums and Facebook groups where people can connect.

7. Have other organic causes for the fatigue been ruled out? (ask your doctor).

It's a good idea to check for:

• a sleep disorder caused by the brain injury
• damage to the brainstem (including the medulla oblongata or the pons)
• a disturbance of the sleep-wake rhythm
• damage to the pineal gland
• OSAS (sleep apnea)
• CSAS (brain insufficiently controlling breathing during sleep)

in case a carbon dioxide measurement has been performed: is there hypercapnia or hypoventilation?