a woman on a sliding scale on the self care side looking at her friends on the other side

The Other Side of Self-Care: Feeling Worn Out

Put yourself at the top of your to-do list every single day and the rest will fall into place. -Unknown

I met with my movement disorders specialist recently, and she asked me if I thought that we, people with Parkinson's (PwPs), are spending too much time on self-care at the expense of everything else. It is a valid question that I admit I have also thought about. Many PwPs will say that they are not defined by our Parkinson's disease (PD). However, these same people spend an awful lot of time just taking care of themselves to help manage their disease. And I am one of them. I often say that since my PD diagnosis, I spend more time taking care of myself than anything else. And I often feel worn out.

Another blogger, Sam Moss, calls it Chronic Illness Overload in one of her blog posts. We are so busy taking care of ourselves, being immersed in our chronic illness that we are worn out by it. We forget what normal was like. She suggests that you take a break and remember who you are beneath the layers of symptoms.

I could not have said it better. I would love to have a day or two when can just be with family or friends and I don't have to think about taking my meds, how much exercise I must do, or what doctor's appointment I have to go to. A day when I can do the things I want to do without difficulty, naturally. Most of all, not being reminded by my very full appointment calendar that I have a progressive neurological disorder.

What is self-care?

According to Raphailia Michael, MA from PsychCentral.com, self-care is any activity that we do deliberately in order to take care of our mental, emotional, and physical health.

Good self-care is key to improved mood and reduced anxiety. It’s also key to a good relationship with oneself and others.

Ok, all of this makes sense for someone not battling a chronic neurologic disease. Instead, it seems to me that for us this does not improve mood or reduced anxiety. In many cases it is quite the opposite, causing more stress.

As PwPs we must exercise daily and see many different health care professionals to fight the effects of PD. And it takes a toll on us. How many of us sacrifice time with family and friends to go to endless appointments and therapy sessions? Do we have the time to do the things that we want to do?

So am I really spending too much time just taking care of myself?

A quick look at my calendar shows that I am spending a minimum of 24 hours a week just taking care of myself. Yes, this seems to be way too much time spent just taking care of ME. It seems to be rather narcissistic, doesn't it? In addition, when I figure in the daytime fatigue factor that comes with not getting enough sleep, how can I have enough time or energy for my family and friends. I often say that it takes more time than a full-time job just to manage my condition.

What can you do about it?

First, look at your calendar and see how you are spending your time. What activities do you do to just to take care of yourself? Start with the obvious: doctor's appointments, physical therapy, occupational therapy, exercise, especially in PD specific classes, support groups. Looking further, what about those “brain games” you are playing? Do you meditate? Get massages? Do you have any hobbies that are good for your brain? The list is endless.

How much time do you spend working? With family? Leisure activities and hobbies? Have you had to reduce any of these because of self-care? How can you reclaim some of those hours every week?

Start by setting some boundaries for yourself. Eliminate what you can, but make sure you replace it with something that you enjoy if possible. What things do you really miss and want to do again? Some of them may be really good for your brain, like playing the piano, painting, and singing. Playing Bridge, chess, or Mah Jongg with others is also great for you. Physical activity that you can do with friends like hiking, golf, and tennis can take the place of some of your exercise routine. Even if you struggle to do them, try to make them a priority.

The key is to do something with family or friends instead of just going to appointments. It is said that people who get out with friends do much better than those who isolate themselves.

So get out there and have some fun!  And just be you!

Almost everything will work again if you unplug it for a few minutes, including you. - Anne Lamott

What has been your experience with self-care in the midst of managing Parkinson's disease?

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