Scleroderma is an autoimmune disease that consumes a portion of your energy. Among other factors, the fatigue you may experience can be linked to the inflammatory process, organ dysfunction, sleep disturbances, side effects of medication, nutritional deficiencies, mental and
emotional stress, or reduced physical activity. It is therefore normal for fatigue to be one of the common symptoms of this condition. However, there are strategies to manage your energy levels.

 

---

The Battery Analogy

First, it is essential to understand energy use, which can be compared to a smartphone battery.

Often, we start the day with our phone charged at 100%. Naturally, the battery drains with use. Some activities, like watching videos, consume more battery. Regardless of the type of activity, the battery inevitably drains and needs recharging. However, we often wait until the battery is at 5% or even 0% before plugging it in. In this digital age, we may also be impatient for it to fully recharge. This can lead to the need for frequent recharging, operating with a low battery, and a disruption in productivity, particularly when the phone is needed for urgent tasks.

This analogy applies to you. If you only take breaks when you are completely exhausted, it takes time to recover. Additionally, if you don’t allow enough time for recharging, you will constantly feel tired, as your energy level will remain low. It is, therefore, important to recharge your battery before it runs empty.

 

The Basics of Energy Management: The 5PS

For effective energy management, it is beneficial to explore the application of the 5Ps:

1. Pacing
2. Prioritizing tasks and activities
3. Planning your time
4. Positioning and posture
5. Problem-solving

 

1. Pacing

• Get to know and respect your capacities and limits.
• Break an activity into several steps and include rest periods (relaxation, meaningful activities, etc.) between them.
• Alternate between light and heavy tasks.
• Take breaks in the morning, noon, and evening; or, if possible, about 10 minutes every hour to prevent excessive fatigue (which facilitates recovery).
• In your activities, adopt a calm rhythm, with a steady, moderate pace rather than a fast one.
• Work in a pleasant, temperate, and relaxing environment.

2. Prioritizing Tasks & Activities

• Analyze your daily activities and rank them by importance in your schedule.
• Is this task essential?
• Does this task need to be done TODAY?
• Do I need to do this task myself? (ask for help or delegate)
• How can I simplify this activity?
• Evaluate the possibility of eliminating or delegating some tasks to allow you to accomplish more meaningful tasks.

3. Planning your Time

• Organization is key to planning. Creating a typical weekly schedule is a good way to start.
• Have a flexible and realistic schedule with regards to the time allocated for each activity (i.e., considering your capacities and limits).
• Spread your activities and heavy tasks over an entire week.
• Plan your essential activities for when you have the most energy.
• Plan your outings.
  Example: If you go shopping, make a list, prioritized by the places you need to visit and items to buy.
  Example: Prepare everything you need before starting an activity (recipe, study materials, gardening tools, etc.)
• Schedule personal time and leisure activities.
• Use what is available to conserve energy, such as elevators, food processors, frozen vegetables, etc.

4. Positioning and Posture

• Adopt a good posture to prevent fatigue and physical stress. Frequently change your posture to keep your joints moving.
• Sit down for certain activities, such as meal preparation, ironing, folding laundry, or talking on the phone (saving about 25% of your energy compared to standing).
• Organize your workspace according to ergonomic principles.
• Adjust the height and organization of work surfaces (surface should be level with your elbows).
• Arrange storage areas in a functional way (place items you frequently use between shoulder and hip height).
• Use postural aids and technical aids as needed.
• Use tools to facilitate each task, such as longer handles or larger, cushioned grips.

5. Problem-Solving

• Be creative, resilient, and patient in finding solutions.
• Be open to changing your habits and doing things differently.
• Try new activities.
• Consider restructuring your schedule.

 

Other Strategies to Remember

Negative attitudes can affect your quality of life. Learn to communicate your needs.
Here are some attitudes to adopt:

• Remind yourself that it’s normal not to be able to do everything.
• Remember that results are not always visible while you are taking action.
• Focus on the positives.

Allow yourself to say “no” to some requests from others and to some of your own demands. Understand that stress can stem from how you interpret events, situations, etc. Remind yourself that any new situation/condition can lead to somewhat exaggerated reactions. Allow yourself to step back when faced with new challenges.

When you need to communicate your needs effectively to better manage your energy, ask yourself the following questions: To whom should I speak? When? Where? How?

Change certain habits: reduce those that drain you and increase those that give you energy.

For example :

• Engage in physical exercise appropriate for your condition.
• Improve your sleep quality.
• Manage your stress, practice relaxation, and identify sources of anxiety and stress.
• Adopt a balanced diet (follow the food guide).