I have no idea why I do the above. I get so excited when I receive "planned visitors". I chat and enjoy the company totally distracted forgetting the PD. They leave and then my husband sees me wiped out, moving slowly etc.
If you called in on me unannounced it would be another story but I do not allow this to happen.
I think it would make relationships with friends easier if they could actually see me struggle instead of wondering what I am on about when I say I was awake all night with leg pain. Or I have to cancel our catch up and a coffee at the last minute as I cannot safely get to the destination.
At work I simply could not hide it as I could not control who saw me, when, where and what time.
I am sure I am not the only one that does this. Why do we do this?
It worries me a little as I am very independent and was very outgoing. I find that I plan everything and lately anything out of the ordinary completely throws me and I get stressed out \ anxious very easily for silly reasons. Which of course exasperates the PD.
This is causing me to plan everything around my home \ my comfort zone!
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Yogibear
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I believe it is in our nature to make others feel comfortable when in our company. FOr me, I simply do not want to explain over and over again how I can look so good and "still"be sick. I cannot make them understand that Parkinson's Disease is a progressive disease that has taken over my "good looking body"and turned it into a total wreck, muscle pain, anxiety, balance issues, walking, talking, memory and swollowing problems, and lets not forget the tremors inside and out. No wonder you were worn out after a day of visiting and pushing yourself to act normally for the comfort of your friends and family. We have more than enough to deal with so why can't our friends and family make us feel more comfortable and understood when they come to visit?
Since my diagnosis I have tried to keep doing what I have always done. But I can't. I keep a smile on my face when people ask how I am, make small concessions, and try to keep going. But this last visit to my neuro I stopped with the positive attitude and had a meltdown. Made me feel weak. I think that is why I keep a smile on my face when around friends and family. I am to young to feel this old.
No. What they see is what they get. Most know I take a nap about every afternoon but I am not too shy to remind them or announce it is my nap time if someone happened to forget. My tremors don't embarrass me, but if I happen to have some really explosive ones while I am in public, I just go on with my business.
I do it all the time! But it is getting harder to do! I can go for a couple days and then the third or fourth day I will spend two or three days in bed recovering! But I will sacrifice to be with friends and family!
Yes I do "put on a Happy Face" but that is for me as well as for my visitors. If everyone knew about my pain and suffering they may start hovering over me and over doing the assistance giving. I don't want that quite yet. I try to not plan more that one event per day. I take my meds on time and try to get a nap in that day. Some days I may have lunch with the girls and a fundraiser that evening, that would be two events and a gamble. I have been known to leave someones home early and disappoint the hosts but my husband knows if I say we must leave we must. I want to laugh when they tell me I am looking good. I think :"If you only knew." I don't like being asked how I am doing because "FINE" isn't true. but the class on PArkinson can't start in the middle of a dinner :). Follow your heart and your needs. THat helps your caregiver too. GOod luck!
Read "When the Body Says No", by Gabor Mate, MD. I'm halfway through it where he describes patients with terrible ills with one factor in common...repressing their feelings to protect someone else's feelings. This info is the result of childhood experience that was told to Dr. Mate by another person who knew the patient as a child. Maybe it was the child hearing mom talk about her labor pains or a father who worked all the time, etc.
I don't mean we should bore everyone with symptoms and descriptions of pain but to act as though nothing is wrong is too hard on a person. They don't believe you anyway. When my sister calls me and asks how I feel, if I say "fine" she says, "If you felt fine, you'd be back to work."
Funny - When I first felt the weakness, one of my friends who I used to work out with for years told me that maybe I should run up and down the stairs to get stronger.
Sometimes it's good to receive a little pity wrapped in a hug.
It's strange to allow yourself to receive but you've probably given all your life, so cash in your chips at your leisure.
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