Managing Severe Illness
People with more severe illness often have significant sensitivities, are often bedbound, may have trouble eating well (or at all), and may struggle to communicate.
There are no universal tips for people with severe or very severe ME/CFS or Long COVID. You may need full-time care and may have specific medical needs for basic living.
You should work with your doctor and family members to make sure you are properly supported. Here, we only touch on a few items to consider with a more severe form of these illnesses.
Bateman Horne has developed a set of communication cards some people find very helpful.
Etsy has several options you might want to take a look at (you can go to Etsy and search for “adult non-verbal communication cards”).
Some people make their own.
Care and Communications
Self-care
For people with severe ME or Long-COVID,, all cleaning, bathroom, eating and other self-care may require partial or full caregiver or other assistance.
Communications
Some severe patients may have periods during which they struggle to speak. For some, typing is an option. For others, a set of custom cards with basic needs (hungry, thirsty, cold, hot, bathroom, help move, pain, pillow, etc.) to point at may work.
Environment and Comfort
Adaptive Tools
Use ergonomic tools designed to reduce strain, such as lightweight cameras for photography or padded handles for gardening tools.
Quiet, Darkened Rooms
Creating a restful environment can help reduce sensory overload and promote relaxation.
Air Filters
There is no definitive research, but some people feel that air filters can help ensure clean air, which may help those with sensitivities.
Heat Pads or Cold Packs
These may provide relief from muscle and joint pains, as well as uncomfortable temperature swings (common among some patients).
Beds and Pillows
Adjustable beds and wedge or other “propping” pillows can minimize discomfort and may improve sleep quality. These may also allow a patient who cannot tolerate an upright position to sit up partially to facilitate eating and other tasks. Some also find bed rails to help (for changing position or getting up).
Massage
Gentle massage may help alleviate pain and improve circulation for some. But be cautious: for some people, even the lightest of touch is not tolerated and massage can cause worsening of pain.
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