This is just one facet of my troubled life.Some may understand,others may think ridiculous.
I posted this on another site,but wanted to share it here also.
So here it is,apologies for the jumbled format.It is just an outpouring I have posted,soz about the grammar.
I have to disagree i'm afraid.Everyone judges.They may not show it.To sensitive people this is audible.Tuned into an alternative frequency even before pd.When social phobia amongst other things taps out a rhythm of control over ones life.
A full room ,is like a Thousand spiders thrown over some people.A thousand rats released under their feet.A Thousand whispers,pointing,talking,saying how ugly he is.Laughing,sniggering,talking behind their hands.They may not continually stare.You know they are there,they know you are there.Please don,t talk to me,what are you doing?,everyone is looking.Now I can,t breathe,i'm sweating,get me out of here.
Walk-run to the bathroom,sink,cool down.F***!!!!,why?Stare in the mirror.See the ugliness,the horrible person looking back at you.Mop brow.No good,splash cold water.Calm down.Got to walk back in there.Wife's with me,she knows,she chats no trouble,fills in the empty space.
The empty space is still in the bathroom,pacing,wondering who's laughing.It's worse now,any facade lies in rubble now at his feet.Bad things,thoughts,they race through a racing mind,heart slows down,calming,must calm.If someone comes in they will wonder what's wrong.Stare at me,go back out and tell everybody I am there.They can laugh more.My Wife will laugh too,she is enjoying herself.If I don,t go out she will be in a mood.I will have ruined another night.
Limbs don,t function right when stressed,forced,robotic,jaunty.This is without pd.Walk back out that's it.Don,t look at anybody.Where's Jan?,awkward steps,eyes looking desperate now.Where the F*** is she?!!!The table is there,everyone is looking,laughing.She is over there they think at me.
I sit back in my place,I seem aloof,because i'm rigid,tense,I want to go.What time is it?I look like a Clown,I walked back like a Clown.Laughter,talking all around me.Him there,look how silly he looks?Waiting for his Wife to come back.Sad git!!.Why does he look so unhappy.His Wife is over there dancing,enjoying herself.He can,t,no,he is hollow inside,empty.Insecure little F***** up piece of nothing.Bet he doesen,t like his Wife dancing with that out going,handsome,confident man over there.
Has he visited the bar?No,watch when she comes back to him.She will go to the bar,he can,t,he's SHY!!!!!,EMBARRASSED!!!!!WIERD!!!!!!!She will make him feel better.Squeeze his hand.Reassure him everything is okay."You don,t mind me dancing do you","No"he lies.She knows though.He knows that she deserves a good time,deserves better than him.Watch as he looks around the room now she has gone again.Everyone can see he is strange.Why does she stay with him?They have been married 26 years.She's either stupid or a saint.
I hear every word,feel ever vibe.Focus on my feet now,Clowns feet in Clowns shoes.Awkward like me.Jan laughs at the bar.She is laughing off my embarrassment for me.She smiles at me,shows she cares.Knows how to get me through.A limpit she cares for.
"There babe",she says.Told you I woulden,t be long.We talk,it takes my mind off all the faces,people,chatter around me.I hate myself,it will never change.Hang on in,not long now.We don,t stay too long,but don,t leave early enough to be too short.Chat nicely,pleasantly,to all who say hello.
We nod a few goodbyes,Jan hugs a few people,exchange kisses,I move back.They sense,stop short on approach.I don,t do hugs and kisses.Can,t,I hate this bit the most.
Fresh air."There,it's over now babe"she says."Lets go home,the kids are out tonight and you know what that means."She smiles that sexy,dirty smile I love.She will show me that she loves me.Make everything go away.
Hi Titan . Well done for continuing to socialise , you sound very much like my husband and I ..
I encourage him to keep going out with me , it would be so much easier for him to say NO but like you he to continues
, as much for my sake as his .
It's not easy for either of us is it . but we bravely battle on .
We belong to a club which we have been members of for 45 years and have made many friends as well as aquaintancy'.
They mostly all want to help us which can sometimes mean GETTING IN THE WAY LOL. but I tell them how it is and ask for their help if needed . For instance now if he needs the loo a discreet path is cleared and doors suddenly open .
He sits and worries that he will be unable to get out of the chairwhen we leave , which had already been put in place with his cushion when we enter the room .
I believe you should give other people the opportunity to assist IF NEEDED it pleases them and helps US . They are also learning a little of what it is like for someone to have Parkinsons
When we have left I am sure they say Poor things but also how brave we are , it's only because they care
We are showing the way for others who come after us .
Hope you are going out tonight "WE ARE 78 & 76 , WE ARE GOING OUT . Not sure how we will get home .lol
But thanks to our taxi firm we will ..
Thanks for the reply.I think you may have slightly misunderstood.However,I applaud your positive attitude in continuing to socialise.
I don,t continue to socialise,never have,never can.Any functions I attend are those that are a must.The one my Wife insists on each year,is her xmas party.That is probably the location of the theme that was running through my head when I posted.
My Wife and I got married at Gretna Green over 26 years ago.We were 22,I had social phobia even back then and even further back to childhood.My Wife wanted a big White wedding.She sacrificed that for me,because of my problems.Parkinsons is a walk in the park for me.I was only diagnosed 3 years ago.My other issues have been going on forever.Parkinsons just complicates things even more.
However,it is an additional excuse to retreat inside my shell,my dug out.From here I can occasionally pop my head over and release intermittant volleys of annoyance.When I should be turning the gun on myself.
It appears that amongst the pd community,social phobia before pd or even more surprisingly post pd diagnosis,must be a rarity.Or is the psycho dude just rattling away again.The clash of the Titan.In his own troubled little world.
No ,your not alone I feel similar to you,I've been unlucky or have I ,I've gott most symptoms of pd,dragging foot,starring look,frozen red flaky face,who chokes on his food, but I don't go out and when I have to I dont talk much.which brings on other issues.the wife goes out with her friends and goes on trips to London etc with her friends.she doesn't want to know about me and my pd.she doesnt want the rest of her life ruined.needless to say I'm depressed most of the time but even that I have to be quite about or another argument starts.im sure I'm not on my own in this situation.but it seems most pd suffers have a loving wife helping them.i feel alone in the family.sorry if I've made you feel worse that's not the intention.all the beest john
By sharing your true feelings,you have in no way made me feel worse.I feel like coming to your house and giving your Wife a piece of my mind.You are still an articulate person John.You still have feelings.This is the place to air your grievances,the things that get you down.
My Wife walked out on me earlier this year for a few days,I never went running after her.Just stayed here at home.She wanted me to leave."It's my house too" I said"You go".She had had enough(long story).We ended up having the deepest of deep conversations,EVERYTHING !!!,because other problems,well crisis had turned up within the family.So we had to rally together.It was then that we realised what we were good at.FAMILY.We have been married 26 years.
I have a myriad of problems other than pd,not physical,but psychological.My Wife is not perfect herself.We have been together this long because,no matter what happens,the spark is still there,no matter how small it becomes.
I think your Wife,by her actions.Is undermining what little and diminishing confidence you have.That is wrong,cruel.You deserve better than to be treated as an inconvenience.Have that big important conversation with her John.Tell her how you really feel.Let her tell you how she really feels.Let it and get it all out.Do not let things hover over you like this.
There again,we ourselves are the only ones who know the true depth of the dynamics within our relationships.So any thoughts I share are just my personal view.But what I will say is this.I see a sensitive person,a caring person who deserves the same in return.You will find understanding here on the forum,I understand.
Next week I could be feeling just like youself because of something off hand my Wife said,insensitive,perhaps unintentional.With this condition we have however,the slightest off hand comment can cut us to the quick.We start mulling it over,thinking about the future,letting it drag us down.
You are not alone John and I will be thinking of you.