Activities of Daily Living

by | Mar 27, 2023 | BHC News, Long COVID, ME/CFS, Patient Education, Provider Education

This blog post covers the ninth chapter of the ME/CFS Crash Survival Guide. The information provided can also apply to individuals with Long COVID and other multi-system chronic complex illnesses that have post-exertional malaise (PEM) symptoms. 

Click here to download the entire guidebook.

Chapter 9: Activities of Daily Living

Activities of daily living, known as ADLs, are tasks that involve self-care. Common ADLs include personal hygiene, bathing, toileting, dressing, eating, sleeping, and moving around in our environments. These tasks are often carried out without awareness of the energy demand that can be placed on our bodies while performing the task.

People with ME/CFS may experience movement challenges due to a number of factors such as how much, what way, sensory overload, energy utilization, orthostatic intolerance, neuroinflammation, etc. When performing ADLs, it is important to move in an intentional way that allows your body to function, while accommodating symptoms that are specific to you. This resource outlines ways to approach self-care while conserving energy during a crash and as a part of living with ME/CFS.

For more on energy conservation, please refer to the guidebook’s section on person, environment, and occupation (PEO).

Adaptive devices

Adapted devices can be helpful with energy conservation, but it is also important to be strategic in their utilization. Those which require more energy and steps to use are counterproductive to your efforts.

Adapting your technique, approach, and position may be more beneficial in some instances rather than using an assistive device. Be strategic and only utilize what will truly assist and make your life easier and more functional.

There are some items that your medical provider could deem necessary to maintain your health and independence. Consider asking him/her to write a letter of medical necessity (LMN) and see how much your insurance may cover.

Note: purchasing items can become expensive. This list is only intended to serve as a reference guide and requires you to work within your means.

Slowly accumulate what you need over time. Many of these items can be found in thrift or second-hand medical equipment stores. Others may be easier and more cost effective to acquire online.

Crash Considerations

When in a severe crash, you may be unable to maintain even basic hygiene. Be kind to yourself wherever you are in the crash recovery process. Prioritize how important the self-care task is and whether assistance is needed.

Bathing

  • Body
    • No-rinse bathing wipes
    • No-rinse body wash
    • No-rinse peri wash (for sensitive areas)
  • Hair
    • Pre-moistened shampoo wash gloves
    • No-rinse shampoo or shampoo caps
    • No-rinse conditioner
  • Teeth
    • Spitless/rinseless toothpaste
    • Oral care swabs

Toileting

  • Bedside commode
    • Adjustable handle rails will help you lower yourself while transferring directly from the bed’s surface or on and off the commode.
    • Consider using commode liners which are absorbent hygienic bags that eliminate cleaning soiled commode pails.
  • Bedpan
    • When using a bedpan in severe instances, be mindful of pressure points or skin breakdown while lying on a bedpan.
    • Practice post-bedpan hygiene by ensuring the body and bed are both dry.
  • Tongs and other long-handled toileting aids
  • Personal cleaning/toileting wipes
  • Raised toilet seat
  • For men’s urinals, consider disposable urinal bags.
  • Bed pads or Chux pads for leaks, or as an aid during in-bed toileting
    • These can also be used under your fitted sheet to absorb body sweat (be sure to change frequently).

Eating

  • Bedside snacks and hydration that are premade and easy to consume
  • Reference the nutrition and hydration section of the guidebook for more details.
  • Adaptive eating utensils

Dressing

  • Dressing should be a low priority concern when in a crash, however, keep in mind:
    • Clothing should be loose fitting, breathable, and changed every 2 days.
    • If clothing is constricting (compression clothing) be mindful of skin indents and blood pooling on either side of a fold or elastic band.
    • Placing easy to put on/take off clothing next to your bed can be helpful.

Movement aids

  • Bedrail (help with rolling and getting in and out of bed) * Walker or cane when moving around
  • Grab bars in bathroom and throughout house
  • Wheelchair (manual or power)
  • Transfer or pivot disc to help when transferring between surfaces

Living with ME/CFS

Remember, some adaptive equipment may not be conducive to energy conservation as a whole. Implement items that aid you in your daily functioning. Note: some items may be repeated from the previous section.

Self-care

  • Time of day
    • Consider taking a shower in the evening so you have the night to replenish your energy stores.
  • Minimize drying effort
    • Terry cloth bathrobe to be used instead of a bath towel
    • High absorbency microfiber turban for use after washing hair
  • Minimize need for hair washing
    • Shorter hairstyles
    • Dry shampoo
    • Shampoo caps
  • Teeth
    • Spitless/rinseless toothpaste
    • Oral care swabs
    • Electric toothbrush (if noise/vibration are not an issue)
  • Possible adaptive aids
    • Long-handled sponge
    • Adjustable shower head
    • Shower chair with handles (especially if orthostatic intolerance is present)

Toileting

  • Orthostatic intolerance and positioning considerations
    • Minimize bending and positional changes
      • Long-handled toilet aid or toilet tongs
      • Bidet
    • Toilet riser to help get on/off more easily
    • Be mindful of leaving your legs hanging against gravity for too long. A footstool may be helpful.

Dressing

  • Consider clothing that is easier to put on and take off.
  • Have clothing items laid out the night before and keep close to the bed for ease of access.
  • Loose clothing
  • Compression clothing if OI is present
  • Adaptive equipment considerations
    • Reacher
    • Shoehorn
    • Slip-in shoes
    • Sock aid
    • Dressing stick
    • Leg lifter
    • Elastic shoelaces
    • Button or zipper assist devices

Mobility and assistive devices

  • Bed assist ladder or bedrail to help with rolling/positioning and getting out of bed
  • Rollator with seat and capacity to carry small objects
  • Wheelchair
  • Grab bars in bathroom and throughout house (as needed)
  • Stand assist bars for couch or sofa chair
  • Walker or cane for stability
  • Reacher/grabber
  • Home modifications for improved accessibility, such as a ramp, stairlift, walk-in shower

This blog post covers the ninth chapter of the ME/CFS Crash Survival Guide.
Click here to download the entire guidebook.

The information provided can also apply to individuals with Long COVID and other multi-system chronic complex illnesses that have post-exertional malaise (PEM) symptoms. 


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