Thoughts about Parkinson's, Fatigue and Life in General

[mleec]

Good morning World,

(*This is not meant to be negative, just sharing my thoughts.)

Every day, every minute, every second of the day we are making decisions, good, bad, or ugly. There is so much I want to accomplish and so many satisfying opportunities. Maybe that is the problem, the world does have too many options. Analysis paralysis is a real thing. I can’t make a decision without thinking of all of the other things that I want to do, or need to do. At this point in my life I should be living to do whatever I want, and I think I do for the most part. However, doing for others has always been my nature and provides me with contentment and satisfaction. For example, I would like to have a small job, maybe two days a week or volunteer. Sounds like a great idea. However, I begin to stress myself thinking about how I am going to exercise, picking up my grandkids, housework, events with friends and time for myself. I hesitate to make a commitment if I cannot follow through. So let’s go through another analysis. (snicker)

First, I am tired, not dead, but tired. I am not being dramatic, but I was diagnosed with Parkinson’s in 2017, not the end of the world, but it’s no picnic either. Exhaustion with any neurological disease is very real, so how I time my activities is extremely important. On any given day, there are a variety of essential appointments, picking up grandkids, maintenance of my living space and my own time. Being retired you would think it is not a problem. It is a problem, because I still expect to get everything accomplished as I did in my 30’s to 50’s! I was a whirlwind of accomplishment, very type A. I felt good about doing for other people, that gave me satisfaction, or so I thought. And yes, it did, but it was at the expense of losing myself.

Enters Parkinson’s with its mighty sword, ah ha! Talk about being knocked down a peg. I have had to say “NO” to a lot of things. “No" was not in my vocabulary, but guilt was certainly there if I didn’t say “YES”. Dare I say that Parkinson’s is a blessing? Maybe, because I am finally forced to say “No”. Setting boundaries without feeling guilty is extremely difficult. It is taking time to adjust. Some days I can slay the dragon, other days the dragon is torching my back. Balance…how do I get there?

Over the past couple of months, I have been a little preoccupied with death. My preoccupation is not just about Parkinson's, but includes everything else happening in the world. I have been working on my grandkids journals, crocheting like crazy, giving the items to people I love or not love, writing letters to people I want to thank for giving me such a wonderful life and making amends with others. In fact, I have run into people that I haven’t seen in years. I feel like the universe is trying to tell me something. And though I eat a relatively healthy diet, I have eaten copious amounts of ice cream lately. As much as I love kale salad, I don’t want it to be my last meal.

So, after this little synopsis of my current life, I suppose I feel a little less guilt about saying “no”. Because I know that I could be gone on any given day. Eat the ice cream, tell someone you love them, forgive others and yourself!

Sometimes writing thing down makes things a little more clear.Thank you for letting me share. Have an awesome day!

[PDFree]

Love this! There are pieces of me throughout your post. Thanks for writing this!

[Brown-dog]

Ditto with areas of your post for me also and I'm sure many of us with PD. I will also try writing things down to "clear the head". All the best to everyone on their journeys on this and other health issues.

[Agate_17]

I define PD “tiredness” as cellular fatigue. Many times, I’m well rested but when I’m trying to maintain activity level all I want to do is to lay down. Seems as there is no reason for feeling that way. So, I make a cup of tea, lay down and usually within the hour I feel better. It’s hard for my husband to understand as he is the original Energizer Bunny/McGiver!

BTW: I was diagnosed in 2010

[PalmSprings]

I can really relate to your post. I was diagnosed in 2015. I am 65. I work everyday on being the best version of me but oh my, since the diagnosis that has been hard and getting harder as time goes on. Parkinson’s being a blessing in some ways is so true. Like you said the perspective you get makes somethings so clear. Saying “no” is easier. But knowing you’re missing out on things, life, family, friendships and relationships, is extremely hard. Also, missing who you used to be, is crazy difficult. Anyway cheers.

[gomelgo]

yes yes and yes! Thank you for saying all the things. I needed to hear this validation so much today. I have been dreaming of a road trip in a van for over 10 years since I took a few short ones. I got my van today!!! Not letting the tremors stop me, and definitely saying no with a lot less guilt to my mother who would have me dedicate whole life to her instead.

[PD-Golfer]

I enjoyed reading your post; I agree with many of your thoughts. Parkinson's comes with a burden to pay because we slowly get ill, yet the disorder is relentless and never stops for a break, not once. It definitely can be exhausting to have Parkinson's; muscle fatigue alone can weigh one down, leading to just being tired. There are what>40 symptoms of Parkinson's, so it is likely we share some of the same clinical features, but not necessarily all. Some of us will accelerate quickly from mild to moderate to advanced stages of Parkinson's, while others will only slowly tip-toe through these stages of progression. Keep writing your thoughts; they are meaningful and insightful.

[Gioc]

hi  mleec ,

It was a pleasure to read your thoughts.

I believe that one should never stop creating their life so that it is beautiful and interesting like a work of art.

This could be interpreted as enjoying life at the level of physical sensations, but it is only a lower parody of how wonderful it is to be active in a grand game like helping others, as you have described is your life.

Your life is a great work of art; never stop creating it, even with the PD.

Greetings from Italy

Gio

Florence

[mleec]

Thank you everyone. It is comforting to know there are people out there that can relate Family and friends try so hard to help, but it's impossible to communicate if you never experienced something similar to it. And I am sure that goes for any person with a disease, disorder or condition. Have a happy weekend people! 😎