Pacing Life with Chronic Illness

Changing the Pace hw at homePeople with a variety of chronic illnesses struggle to maintain enough energy to make it through each day. In fact, twenty-five percent of people diagnosed with postural orthostatic tachycardia syndrome (POTS) are so highly symptomatic that they can’t work or go to school. Even short, local trips to the library, a restaurant, or the grocery store are taxing. Riding in the car can be exhausting. As a result, many people with chronic illness can become largely homebound and socially isolated.

There is a calculation of benefit versus cost in all activities for someone with debilitating illness – is it worth the energy and rebound illness to participate in the activity? My daughter falls into that unlucky 25%, so it is rare that she decides there is enough benefit to participate in any activity. When she decides to participate, I fully support her. We both know that she will pay in rebound fatigue and increase in symptoms for several days or weeks afterward, but she deserves to make some memories in spite of her long illness.

Friends and family: Celebrate those times when your chronically ill friend or family member makes the effort to be with you, even if it is only for a short time. It takes extraordinary resolve to get up and moving, let alone to put a smile on our faces!

Here are some tricks to make your outing more tolerable.

Stay hydrated. Carry a water bottle with you and continue drinking water, Gatorade, etc. to maintain your blood volume. Avoid drinking energy drinks and alcohol as these lead to dehydration and decreased blood volume.

Consider wearing compression devices, like abdominal binders or compression stockings, if you will have to stand or sit upright for an extended period of time. If compression stockings won’t do, try wearing control top pantyhose that are a size too small to give some leg compression while looking a bit fancier.

Sit when possible. In people with POTS, the heart rate is higher when standing still than when laying, sitting, or walking. If my daughter is in a group where everyone is standing, she stands too. But if someone sits down, she will also sit. Sitting in a low chair can help to decrease symptoms. Subtle signals of understanding like sitting down first can be meaningful.

Use counter-maneuvers when you have to stand. Crossing your legs when you are standing can prevent gravity from causing blood to pool in your feet and lower legs. In addition, tightening the muscles of your legs and buttocks can help push blood back toward heart.

Take breaks frequently. If you are physically active – walking, dancing, playing games – allow yourself a five minute break to sit and drink some fluid for every 15 minutes of activity.

Avoid over-stimulating environments. Bright lights, loud noises, and crowds can cause excessive fatigue for a person with POTS and cause their symptoms to flare.

Stay cool. Many people with POTS will have their symptoms flare when they are in a warm and/or humid environment.  Use a small fan, spray bottle, cooling vest, ice water, or whatever means necessary to avoid getting overheated.

Schedule events in the afternoon, when possible. Many people with POTS report higher symptom severity in the morning and feel somewhat better in the afternoon.

The Spoon Theory for living with chronic illness

It is over difficult for healthy people to understand the struggles that chronically ill people make to pace themselves through your day.  Most people have enough energy to do everything that they want to do - shower, get dressed, make meals, play, go for a walk, socialize, exercise, and work.  For many people with POTS and a variety of other chronic illnesses, this is simply not the case.  Menial tasks may take considerable energy for those with chronic illness.  The Spoon Theory is a great explanation of what it feels like to suffer from a debilititating chronic illness.

For more information, check out Lindsay's blog related to decisions people with POTS and other chronic illnesses need to make when considering social situations at the holidays, but it really applies to pace of life in general.