This Blogsite is a good venue for displaying emotions. Every time I come to this site I read about The Struggle to Cope with PD. I see people trying to be brave about a thing that has been brutal to them. I read postings from people who weep [people like me] over being stricken with PD. It might sound like self pity but what has happened is a resignation to reality. Humans tend to think that they are invincible. After being diagnosed with PD The Hard Exterior buckles, so we try to establish defenses. We try to put on a happy face. We talk about what might have been and what we can no longer do. We thought that we were invincible but in reality we are fragile. PD readjusted reality in a way that makes a person call out for help. We all need to talk about our experiences, good or bad. What sounds like self pity might actually be DOUBT over what we thought we were as opposed to what we have become.
[a few days later...]
People. There's nothing wrong with feeling bad over bad fortune. It's all part of The Healing of the Soul. I think that when people are diagnosed with Parkinson's Disease a revelation occures. Our conscience does battle with our egos. We seek healing. We become humble. We look inward. Some people might be uncomfortable with these feelings because they are not Super Hero Traits, but Nature has already knocked some of that out of us. Self Pity is an attempt to create compassion in a world that has gone awry.
If Self Pity helps find The Cure for Parkinson's bring it on!
Written by
Joealt
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11 Replies
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I agree. It is sooooooooo hard to ask for help.
Being the wife and mother (and teacher) I was so use to "being in charge" of everything [(not my husband just running the home ].
joealt,
Your a good man , and a great person keep with your blog post .
you are an insparation to all,
the designer disease that we have is un like any thing any one out with our community, has to deal with, the miss understanding the down right roud ness we have to deal with on a daily basis make us all stronger,
the one thing that brigns us all to gether is PD ,
let 2012 be our year to shout to the world that we need to get this sorted now
With the high rates of depression linked to Dystonia-Parkisonism we all can find that rut. I have good and bad days. But we must soldier on.
How we deal with stuff is individual. No one says one way is better than another. Glumness may actually be a healthy state of mind to have, like a good cry you feel better afterward usually. I am annoyingly cheerful, I always have been. Just whatever you do, don't think let it suck the spirit out of you. C
I put on a brave face. Do not want to upset my family. Feel they just forget what i am dealing with. In truth how can they know when I am to proud to ask for help. Hide my tremor as much as I can I am my own worst enemy. Do not want sympathy just empathy. Seep is just a night mare
I cry when I need/have to. I also throw myself pity parties every now and then. I plan them for when my husband is out of town and can send my son to my mothers. I cry for what I have lost, fears of the future, and the frustration of living like this. Then I think about all I still have (family, friends, support group, life) and I am usually good for another 3-4 months. Plus, it gives me alone time to not have to worry about a happy face.
I remember when I was diagnosed 6 yrs ago next month--I was ANGRY AS HELL for about 2 weeks, at the time was living alone, had just started a new job, thinking the neurologist I saw was a bozo telling me it DID NOT run in families---I got up 1 morning looked myself in the mirror and said 'self get a grip, you can;t give this PD back so you better start learning how to live with it!!!', it would be another 5 yrs before my living arrangements would change and it was my choice to leave the 'new' job after 17 months to return to my former employer where I worked another 4.5 yrs until I retired and I took perverse pleasure in educating that neurologist that PD does run in families---my maternal grandfather and uncle had it, my mom had many symptoms but only actual dx was lewy-bodies dementia in her final yrs. I learned to laugh at myself and allowed others to join me, developed a thicker skin with the ignoramuses of this world------cried in private when I was overly fatigued and frustrated----but came back vowing to keep fighting and not give in to the PD. Truthfully though I have had to admit that I have to pace myself on good days so the bad days are fewer and I have ti take meds routinely on time if I want to keep moving...../but all in all I am here, laughing, living. and loving and I'll take that over the alternative any day of the week!!!!
i felt as if someone were writng my very thoughts as I read your post!
I am learning to laugh at myself...hard for me to imagine that I could ever do that. I was at work late the other evening and very tired from a long day.I inadvertantly lost my balance and fell to the floor with an extreme crash. This in front of several people. Everyone rushed to my aid, I was embarrassed. I knew it must have looked funny . somehow it always does when people do such things ,i don;t know why.
As i was helped to my feet , answering everyone that I was ok, I announced that there was no charge for the entertainment. It seemed to ease the moment, at least for me ,when all started to laugh., including me.
I know what it is to need to develop a thicker skin, again another tough thing for me to do as I am very sensitive. I am trying hard to know myself, my abilties, and not push myself in an effort to prove something to others.
It was helpful to me to be reminded that I need to pace myself on the good days, something easy to forget when you are feeling well,. And as you also stated taking meds on schedule is very important!
Thankyou for your interesting and helpful post!
I find it is not so much the feeling sad or sorry for myself. One thing I will not do is wallow in self pity. A thing I learned from being a nurse for many years is how many patients cope with all sorts of complaints some very well, some not so good.
What I find frustrating is getting information, which it seems is so contradictory
no matter how you try. The so called experts it seems dismiss so much.
Yet they are not suffering the effects of a disease. They may have knowledge of treatments, etc. but they as hell as do not know what it can be like living with it day after day.
It only makes me more determined and sometimes angry, and I do get so bloody minded at times, I feel like throwing the medication in the fire and let nature take its course.
Feelings of all kinds are part of our human makeup. Happiness,sorrow, frustration, anger,pity, empathy, all of these characteristics, complete our humanity. They are all part of living.. Where we get the idea that when we are being human and utilize these feelings we are wrong, we missed the boat. Using our emotions is healthy. They are there and we use them., to what extent is the issue.
How freeing it would be to allow ourselves to be human. Isn't it great to have this place to go to share our feelings with people who understand.?
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This post is by Antonia Kotsiros, posted on FaceBook in the Parkinson's Alternative Healing group.
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