Gatherings.....hard to deal

[UpstateLady]

Hi Everyone:

 

I went to a friend's wedding today - first time since I had the stroke 10 months ago. I have aphasia and some problems with comprehension. Anyway - there was so much background noise from the music and voices, etc. that I could not comprehension anything that was being said at the table. This has happened to me before in restaurants and that type of thing, but tonight it hit me that this is the way it will be....and it made me very sad. Gatherings like this have always been something I have looked forward to, now I find I am on the sidelines looking in.

I just put this out there - knowing that you will all understand!

Thanks for listening

Sarah

[dstraugh]

Sarah,

 

It does get better with time generally. My normal days consists of me, my cats, my computer, and my 15 y.o. daughter (when she's home lol). I've gotten so used to the quiet except for my radio going that when I'm at a gathering, I'm totally overwhelmed. Many times I will need to find a quiet place to chill out for a bit to get my wits about me and to regroup. Before stroke, I too never gave it any thought nor did I have difficulties when I was out in a noisy place.

 

hope it gets better for you.

[AllanWilliams]

Hi Sarah.

 

I had my stroke just under one year now and I still get the same feeling, I live in a flat next to my daughter and husband and two teenage grandsons was over there last night for dinner TV going in the background everybody talking over each other and i still cant just quite fit in, meaning it was just like sitting on the outside listening to all the noise. I love my daughter and family but had to go home to the peace and tranquility have been this way since my stroke and can fully understand were you are coming from . I can not stand large groups meaning 3 or 4 more people in one place and that is quite the opposite to what i was prior to my stroke. even in the chat room when it gets more than 3 or so people in it i have to leave, but i have to admit i enjoy my own company or just one on one as i have said in previous blogs when i get on my feet should say when I'm well enough to do it i have my home computer repair business all setup to go so i can meet other people on a one or two basis i realize you have to meet other people you cant just hide in the security of your home. I do not know if it will improve but so many things change after you have a stroke and it affects people in different ways.

Just wanted to tell you i fully understand you and how you feel

 

Best wishes

 

Allan

[lliu]

hi sarah,

 

your stroke was not that long ago so give yourself time to get better. can you ask for more speech therapy to help you with relearning some communication skills? when i had my stroke, my speech therapist had me do various repetitive verbal exercises and they helped me tremendously. i also found games online to help with word recognition. by using different strategies, i learned to focus on one activity at a time; one person at a time. it's been almost 2 years since my stroke and i have no problem being among large groups of people. take things slow and you'll notice things do get better!

[ksaul]

hi sarah,

yes, you are right we do understand! my days are very quiet and when i go out in the world it is a challenge. i feel safe at home and enjoy the familar. it would be very easy to just stay home. give yourself a big pat on the back for going to that wedding - i believe that as time goes on you will get better at adapting to social gatherings - but you are right in that you have changed. i have found that as i try new things i am often confronted painfully with the losses of stroke - such as the joy and pleasure in social events and the ability to participate as i did pre-stroke. part of recovery, at least for me, is dealing with losses, accepting them and re-adjusting my expectations in certain situations. for example, when i attend a social event i stay for a shorter time and take a break from the noise and commotion when i need too. i also know that i will need a day or two to recover from the activity.

things do get better with time, we become stronger, more confident and we learn adjust. this is a great place to share your feelings on your recovery journey. take care...kathy

[jjohnson]

 

Hi Sarah: Gosh, while reading your post, I sat here and thought, this is me talking. In fact, reading the replies, it hit me yet once again, we are not alone in this journey, we all basically share a common thread, likeness. Strokes are a ugly thing that has happened to us. How many of us have been through major stress? When I look back on my life, I questioned myself and I can see how the path was set up. I love people and loved being around them, however, now, being in a place other than my home. I can't take. I love my five grandchildren, however, if they are all here at the same time, it gets to loud and I just can't take that anymore. I feel awful, but, I need to excuse myself and go into my own lil space and chill out. I am grateful I have a scooter where I can take myself a half mile by myself and sit by the Bay. There I find peace and calmness. I used to love to go to Dover and play slots, I went once after my ordeal and I had to leave, could not take the loudness. I have never been back. Went to a concert, same thing, had to leave, could not take the noise. I have to be in a controlled environment. I need one on one time with others, my Monday am Bible Studies are great, just me and two friends and God. I have had to reinvent my life. It is no longer as it once was, that left me four years ago. But, there is plenty of life out there and I will explore it. Yesterday, I was looking out our kitchen window and I saw two beautiful red robins on the fence. I just sat there and thought, you know someting so simple but so awesome. I so enjoyed that. Looking at the flowers in the garden, same thing, simple but it brings me such joy. I can't sit indoors with people like at a cafe or restuarant, too loud, too may loud noises, can't converse with whoever I am with, my mind goes blank, can't get the words out, etc.

Plus, I find if I am tired or stressed out, I do bad.

I am so happy I have found this group of people who can openly share their experience, strength, and all they share from their heart.

There is no time table for us, in my case, the specialists all said whatever I get back within six months is how my life will be. I refuse to accept that. They only have a license to practice. My Heavenly Physician, God, is who I listen to.

There is a reason I am going through this.

I keep you all in my thoughts and prayers, It's hard for me to go in the chats as well Sarah, I tried for the first time last week, the one chat had so many people and it was going way to fast for me, can't take that. But, I am going to try to get my feet wet and tread water, as I need to be with other individuals going through what I am.

Sarah, please keep the hope in your heart. Don't ever loose that. When in doubt, look up and see God reaching down to you. If I didn't have my faith, I don't know what I would have done.

We are here for you.

 

Look to this day!

For it is life, the very life of life.

In its brief course

Lie all the verities and realities of your existence:

The bliss of growth;

The glory of action;

The splendor of achievement;

For yesterday is but a dream,

And tomorrow is only a vision;

But today, well lived, makes every yesterday

a dream of happiness,

And every tomorrow a vision of hope.

 

Sarah, Believe in Miracles and SOAR.

 

Remember, we are here for you.

~Peace~ Jan

[PVINSON5]

ITS HARD. I'VE BEEN ALMOST 6 YEARS POST STROKE. I HAVE APHASIA. I HAD A THERAPIST--SPEECH, OCCUPATIONAL AND PHYSICAL, 5 YRS. AND 6 MOS. AND I DON'T ANY KNOW. I AROEBIC SWIMMING (3 YRS.) AND PILATES (2 YRS.) I HAVE A TRI-CYCLE AND SCOOTER. JUST DO WHAT YOU CAN. PV

[jjohnson]

:yukyukyuk:

 

oops.... they weren't red robbins, they were red cardinals. There I went with memory freeze, couldn't get the thought process down to my fingers when I was typing. I shared with my hubby and he said, honey, they weren't robins, they were cardinals. Just wanted to set the record straight. oh well, they were beautiful and I loved watching them.

 

thanks,

Jan

[Guest DianneD]

Sarah, I totally understand where you are coming from. Before stroke, no problem with large crowds of noisy people. I worked for a MAJOR airline, a 48,000+ student university, a LARGE senior center, and the Air Force.......so there were LOTS of people in each job, and I had no problem with any of those jobs. But now it is exhausting for me to spend much time with even one other person. I am 3 months past my stroke, so I am told that the exhaustion is simply part of the recovery. But crowds of people sound like a cacophony of sounds to me......jumbled, discordant sounds without any rhyme or reason to them.......and places like shopping malls disorient me completely. I find in the physical crowds of people, even if there is little or no noise, I get disoriented easily. In crowds of people, like waiting rooms in the doctor's office, I find it helps me a lot to put earplugs in. I can still hear faintly, and I just face the door where the receptionist comes to call my name, so I see her say it. Once in the doctor's office, where I will speak first to just the nurse, then to just the doctor, I am okay without the earplugs. But it truly helps muffle the din of the crowds of people (and those stupid TV sets in the waiting rooms). Just thought it might help, if I told you what I do.

 

I am told it will get better, that with practice and with time, you get to the place where you can do longer and longer times before you feel the need to retreat. But that's not been my experience yet. I am hopeful it will come, as I enjoy being a social person. I realized that this stroke, in a back-handed sort of way, was probably a blessing for me. Not only did it stop me on a path of real destruction (by working as my folks' live-in caregiver around the clock and without vacations for 8 years), but it forced me to live in the now. What happened 60 seconds ago is already gone for me, and though I can make lists until the cows come home, tomorrow often doesn't follow any of my to-do lists. It is haphazard at best, like a honey bee going from one flower to the next, without pattern or direction. But what I DO have is now. Beautiful in its simplicity, wonderful in its gifts of the moment, and the best gift I can give myself and others. When I am with someone now, I am totally with them, not planning tonight's dinner or wondering when I can cram in time to do 3 loads of laundry. The gift of now is enjoying the exact moment I am in. Right now my little tuxedo kitty is snoring softly at my feet, laying on my toes ~ my very own toe warmer ~ and my sister who came down to help me is asleep in her bed after a difficult night of less-than-stellar sleep. I am surrounded by creatures who love me, and it doesn't get much better than that. So, while there is much I might wish to be different (and there IS!!! make no mistake about that), what I have for this moment is lovely, and a gift all its own.

 

And there is one thing I believe beyond a shadow of a doubt. While the doctors can give us their best guess in parameters of recovery ("what you get in the first 6 months/year is all you will get" as SedonaHeart said), NO ONE can predict the wonder of the human spirit. My father was diagnosed with a hideous disease 2.5 YEARS ago and was given 2 weeks to live. He is still with us today, and not because of medical intervention. He has been on hospice, so no intervention has been made. But he stays out of love, in a desire (I suspect) to take care of "his girls" (his wife of 64 years and his two daughters), and his spirit sustains him. We ALL have that spirit in us somewhere. It may be momentarily buried by discouragement, exhaustion, fear, tearfulness, or illness, but it's there. It's what gets us on this website to talk with others, what motivates us to do something kind for someone else (offering a phone contact, or sending a note of encouragement), and what makes us feel good about ourselves. THAT spirit is greater than any doctor's parameter, and will take you farther than you can imagine.

 

Blessings on you, Sarah, and may you know you are not alone. While it may feel like you are on the outside, looking in, at social gatherings, maybe you have the real secret. Your body demands quiet and peacefulness now, and requires you to seek it when gatherings get too large and too noisy. Maybe the quiet moments are what matter most, not the clamoring noise of gossip, the judgments of others, or the siding with others against someone else. Maybe the one on the outside has the advantage, eh? And yet I know you miss the social contact, the physical closeness of those you love, and the laughter. But those will come, I truly believe that. It may just take time. But rather than look at what you don't have yet, look at what you are discovering and achieving every day. You are a WONDER, girl. You survived something that has killed others. You are not made of wimpy stuff, Sarah. You're champion material.......and I bet you'll be part of the group you love so much one day, because you want it SO much. For now, you have something GREATER to offer those on the inside from the perspective of being outside, looking in. You have your courage and your grace under fire which inspire others. Though you may never know it, your stone ripples outward, far beyond your sight. You are a gift to the world, your life a treasure simply because you exist.

 

Dianne

[memaw]

Sarah, since it's only been ten months since your stroke please don't assume things won't get better. Keep a positive attitude. I meet once a month with friends for lunch and they have all been warned that I may say something stupid or throw a fork,etc. or have a stroke moment. Laughter is the best medicine. Keep taking small steps but don't be afraid to get out there. I never would have believed I could come so far but in the five years since my stroke I am constantly amazed. Take care. Nancy

[achapman]

I truly do understand. For years I have had trouble hearing in situations where is background noise. I knew many others who were older who had the same problem. I thought: "Just getting older. Runs in the family." Then the stroke in November 2005 and it got worse with not much hope for recovery. If I can convince folks to look directly at me while speaking, I do better, but they pretty much ignore me. I,too, miss being cut out of conversations. Anyone know whether aids or surgery can at least help? My thoughts are with you all. Anne

[Farrell]

Sarah ~

 

I will say Amen to your message on gatherings are hard to deal with... :head_hurts:

!3 years past my bleed & stroke I still have a hard time to any type of noise. That's why I

spend alot of time down in my basement where my exercise equipment is. The new me is

hard to face at times. My husband has been my rock & help all the way! I feel for my family as I feel a burden at times but we are all getting use to it. My daughter who's now 22,

9 at the time of my stroke is growing up & more mature. She understands more, just thankful to have her. I have 3 other kids. The last 2 are adopted. The youngest 15 now, is hardest to handle. She plays alot of games with me. God is our help and refuge. He knows our thoughts & He gives strength! So we all go forward with the battles at hand & search for His peace that passes all understanding in the midst. Sarah I will keep you in my prayers. "Be who you are and say what you feel, because those who mind don't matter and those who matter don't mind." Dr. Suess You are not alone in this, know there are all these beautiful folks on this site for you any time of the day or night!

My family is truly a blessing to me!!!!

Take care my new friend ~ Nancy

[UpstateLady]

Good Evening Everyone:

 

Today was a much better day!! Thank you all for the wonderful words of support...I can't begin to tell you how much it bolstered me. This is the first time I have posted on the board about things that I have had problems with.......what a response!!! You all are truly awesome....thank you from the bottom of my heart.

 

A new day tomorrow - a new positive attitude

Sarah

 

 

[bstockman]

I agree, It is better for me.. somtimes I have to go someplace quiet at a gatherng.. and some days.. are better than others.

 

It takes a lot of focus and practice.. a little at time. I had some younger grandchildren and niece and nephew when stroke found me.. my husband also has the TV a bit louder than I would... and we have dogs .. that bark.

 

some noises are worse than others.. and sometimes it depends on how much is goin on at one time....

 

We went to an Air Show with son, daughter in law and 3 grandkids today.. I think we were there close to 2 hours.. and I was getting pretty tired.

 

I would come on line, but I muted or turned off my computer speakers, I would have the TV on .. low volume, and increased it a bit at a time. It is hard and I can't always do it for very long.. but you teach yourself to tune out ... like we used to do... only start slowly..

 

I also had an anti anxiety med.. I would take 1/2 a tablet (dose) before noisy functions. I try to realy focus on one thing.... the person talking to me.. or one conversation.

watching and "listening ad following " a TV program or computer game also helps..

 

If you can talk to your Dr or neurologist.. maybe you could get some therapy .... puzzles.. and figuering things out.. sequencing helps to train the brain to track

 

I cannot multi-task..

[hgmenocal]

I was just reading everyone replies to Sarah. Gatherings are hard. I am 12 years post stroke, and certain gatherings I still avoid or dread. It now is mostly if there are going to be many strangers because I can not stand for any length of time. I find that when I sit down I disappear. It used to be depressing. Now I just people watch. But it can be alienating. When I am at gathering where there are friends or family present, someone while try to make sure I am not sitting alone.

Life is different after a stroke. I am thankful each day that I have, as I know how close I came to not having them. It has been hard to accept the changes, and I have gone through my bouts of depression. BUT life does go on and it does get easier.

Heidi[/siz e]