Monday, April 8, 2013

HAWMC Day 9: On caregiving

Today's post is about caregiving. We are being asked to discuss what advice or tip we have for caregivers.

This is troublesome because other than my trustee cleaning ladies, I have no caregiver, and no one that looks after me. I am alone.

See I have always been the independent one. I left home for college at 18, and made do. I took on solo trips around the world with my bicycle and everything but the kitchen sink. I worked hard as a nurse, at first in labor and delivery and then with cancer patients, including bone marrow transplant. I enjoyed the one to one kind of nursing, building a rapport with my patients and giving all that I had.

And when illness hit at age 39, I was excited about my new goals, I still wanted to travel and bike, and on top of my nursing career I wanted to be a photographer. But then I got sick.

So here I am facing a chronic illness, a beast if you will, alone. Speaking of convenience, well, the fact that this illness is mostly worsened with all kinds of stimuli including light and sound, being alone is indeed convenient. I control the noise level, most of the time it is silent, no TV and no radio and my bedroom is as dark as a moonless night. I get by with my self care by carefully pacing and planning my activity and energy. When I feel terrible, I take the electric cart at the grocery store, and shower less often. I cook just a few times a week, and live off leftovers or frozen meals, or salads quickly put together. Should I get sicker, I can get my grocery delivered.

So caregiving from my point of view as a sick person with one of the most neglected diseases, is coming from my phyisicans. There has been some very good and some very bad. There is still some very good and some very bad.

Here are a few pointers for health care professionals dealing with a patient with myalgic encephalomyelitis. These very simple measures will help you connecting with your patient. You will do some good.

- Respect what your patient is saying. Believe him/her. If they say they need a wheelchair and cannot walk 20 feet, believe it's true. And if they even could, they are saving energy so they can talk to you.

- Listen to what your patient is saying. By listening, you are allowing healing to happen, and you can also get important clues as of what needs to happen next.

- Learn about myalgic encephalomyelitis (or to an extent, any disease that you are not familiar with). You'd be surprised to find out it is a complex and neglected disease and that the symptoms go beyond being tired.

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