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cypher

New. Wished I had not survived

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On 12/31/2017 at 12:03 PM, cypher said:

THANKS ED, I HATE BEING AS I AM!!! PLEASE EXCUSE THE USE OF CAPS BUT IT MEANS THAT I DON'T HAVE TO STOP TYPING TO PLACE THE DAMAGED HAND ON THE KEY THE SHIFT KEY-OMFG,

 

Hi again Cypher, just back from my end of year holiday. You don't have to type all in capitals when one hand doesn't work. For Windows you need to turn on an accessibility feature called "StickyKeys" (sorry I'm not Mac literate so I don't know what they call it but I bet it exists) hitting shift 5 times in succession will bring it up short term but you can also configure the setting to be always on.  With Stickykeys enabled the shift, alt, ctrl and windows keys become "sticky" you hit them once and they stay on for the next key press so to type capital C you press "shift" and then "c" rather than holding down shift while you press" c"  I do it now without thinking.

 

I find that the more well known movement patterns from pre stroke are the easiest to get back even though they are not as elegant or controlled as they once were. It seems to help that my brain knows what it wants my body to do even though the connections are not really there any more.  In particular basic dance moves ( e.g. grape vine) and weight lifting moves e.g. dead lifts, lunges have pretty much come back with a lot of practice and persistence.  So don't give up on dancing and don't be too hard on yourself about it no longer being the fluid movement you used to have.  Keep working at it and it should come back. remember "dance as if no one is watching"  let you body feel the rhythms and boogie away.

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On ‎12‎/‎9‎/‎2017 at 4:49 PM, cypher said:

Merry Meet to all

I  must constantly focus intently on balance, lifting my foot, & limb placement. The mechanics of  movement are nothing like pre-stroke movement

I understand this for when I walk I often say " lift..lift...lift" to my right foot. When I get tired or any emotions cloud my mind, my foot droops ( not enough for a AFO) and I trip a lot or my leg feels like it weights 500lbs and I walk like Image result for The Ministry of Funny Walks  I tell people even after a shower, I must lay down and rest for the simple task of many do with ease,  I have to focus on every movement. Sometimes it takes me so long to decide how to do something as basic as reaching for a cup for I must get my feet right, my balance and my arms right. Then I have days that it seems I never have to put thought to what I do..... until the end of the day or the next day when I'm mentally exhausted. 

This is the phrase that so many survivors of anything hate to hear;' It takes time' but it's true. I know :( 

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6 hours ago, ksmith said:

I understand this for when I walk I often say " lift..lift...lift" to my right foot. When I get tired or any emotions cloud my mind, my foot droops ( not enough for a AFO) and I trip a lot or my leg feels like it weights 500lbs and I walk like Image result for The Ministry of Funny Walks  I tell people even after a shower, I must lay down and rest for the simple task of many do with ease,  I have to focus on every movement. Sometimes it takes me so long to decide how to do something as basic as reaching for a cup for I must get my feet right, my balance and my arms right. Then I have days that it seems I never have to put thought to what I do..... until the end of the day or the next day when I'm mentally exhausted. 

This is the phrase that so many survivors of anything hate to hear;' It takes time' but it's true. I know :( 

Hi Kelly,

 

I know what you mean.  I take a shower then rest for a bit after that.  Later in the day I usually get so exhausted that I can't think clearly.  This is late and kind of difficult to type in.  And if I have a busy day, which can just be trying to focus on conversations because we had friends or family over.... I am often totally wasted the next day.  Nothing happens then.  I don't try to do anything but the minimum.  Family doesn't fully understand.  Sometimes they just think I am being lazy.  Which is weird since I did a lot before stroke.

 

Anyway, to end on the upside.

 

Happy new year to all of you reading this.  Have a great year of progress.  And just a a great day tomorrow!  Focus on your wins, what you did do.  Not what you can't do.  And I will try to do the same....

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Cypher, As I read the most recent replies, I thought of something I wanted to add: If someone were to ask me how I felt about my stroke,my answer would sound much like you feel: I'm angry, hurt, despairing, surprised, etc. But dwelling on these emotions, for me, is so damn tiring that I can't do anything else. For me, then, the question, the bottom line becomes which would I rather do,take a nap because I'm just exhausted, or take a nap because I'm exhausted from therapy today? Like Kelli, I have to focus so completely on every movement that I make, that there isn't room or energy to focus both movement and negative emotion. I've chosen to focus on movement. So,I acknowledge my negative emotions, but try not to focus on them.  I don't give them the time or the energy that they need in order to survive. Every now and then, one of  my negative emotions will grab me from behind,and I will have a "stroke moment" or 2, but I try not to let it control me for long because I have things to do,and I don't have time for this, damn it!  Hope this makes sense.   Best, Becky

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Cypher I had a lacunar too.

words cant hold the sorrow loss grief, but we lived, hope holds us for new journey....make art in a new way now is what we all do here.

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Mel :

 

I so understand your venting, I know I felt same way when I suffered my stroke 13 years ago which left me paralyzed on my left side & retired me from the job I loved. I thought I will never find joy in living again. I struggled big time with who am I question, since I never knew I put so much importance to my self worth to who I was prestroke. If I am not Asha Software Engineer who made big bucks then who am I. but after being on this post stroke journey for 13 plus years I have realized post stroke life is just different not good or bad just different. I feel as long as work gets done it does not matter how long it takes. keep on doing more for yourself. more independent you get better you will feel about your life. you can do lot of other activities with just one hand. I think you can almost do everything with one hand & good attitude. Ifound blogging & chatting with other survivors quite therapeutic for my soul. we do have organized chats every day from 3-4 EST & evening on M,W,F from 8-9 EST

 

hope to see you around more.

Asha

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19 hours ago, cypher said:

Hi Alan, Did your wife have a stroke as well? Did she lose all muscle coordination on all parts of the left side of HER BODY? Poor dear, well tell her to "go face it & move[if she's even able to walk] on..." Easy for some azzholes to say; let's see Them actually practice what they preach. Frock your wife;! Makes me happy to be single, lol!

Hi Cypher, I think Alan's wife is talking metaphorically when she says "this is where we are now, let's face it and move on"  It is important to your long term happiness to get to a level of acceptance that there are things you can change and things you can't. One of those things you can't change is that you had a stroke and it's stuffed up a whole lot of things in your life not just your body.  I'm not trying to minimise what has happened to you and how it makes you feel. But learning to channel your anger and frustration into your recovery and rehab will make you feel a lot better.  Beating this thing requires long term effort. There is a lot you can do without a formal rehab setting.  Early on in my journey I was abandoned by the health care system here but I refused to let that stop me and educated myself and then created a support team of personal trainers (who I also had to teach some things), massage therapists etc. I also found a private neuro physio who still works with me and provides guidance to the non specialist people as required.  Partly because of my persistence I am now also working with a private hospital that has a good post stroke program.

 

As I've said on this board before " What's done is done, now take a deep breath and move forward."  Dwelling in the negative emotions is no fun and bad for your health. Don't let this thing get to you for long periods of time, it can be a self fulfilling prophecy.

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20 minutes ago, heathber said:

Hi Cypher, I think Alan's wife is talking metaphorically when she says "this is where we are now, let's face it and move on"  It is important to your long term happiness to get to a level of acceptance that there are things you can change and things you can't. One of those things you can't change is that you had a stroke and it's stuffed up a whole lot of things in your life not just your body.  I'm not trying to minimise what has happened to you and how it makes you feel. But learning to channel your anger and frustration into your recovery and rehab will make you feel a lot better.  Beating this thing requires long term effort. 

this is true. Heather makes a great point. We all understand stroke but we all don't understand how that impacts everyone mentally. I was stuck in the 'right here and now' with my recovery and refused to accept that my life would get easier despite how many people told me that. I thought this for a long time. No one knows how long we will feel the way we do Luckily, there are people who have felt similarly to you that have come to learn it does. It may not be what we hoped for but it does become easier.  

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Hi Cypher,

 

I hope in some form this message makes a positive difference in your life. My wife... 22 days of being married had a ruptured aneurysm. 11% survival rate. Suffered several strokes including the thalamus. Left side completely affected and cognitively still impaired. However, it's been a year and a couple months and she's working so hard. Her left hand [claw] was significantly improved with constant bi-valves at night while I watched her cry as the therapist attempted to put it on so that it would one day be of some kind of use. She can now at least grab a tissue, lift it towards her nose, catch whatever it it may be, potentially even miss majority of the snot but that's alright...

 

I look forward to the day she can remind me of what she had for breakfast or recall any of the events we did that day. Her memory equals whatever we repetitively do and 99% that becomes the automatic response. 

 

You are doing incredible and just know there are others struggling hoping that you continue to improve and that their love ones continue to prosper as well.

 

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On ‎1‎/‎2‎/‎2018 at 11:06 PM, cypher said:

Hi Alan, Did your wife have a stroke as well? Did she lose all muscle coordination on all parts of the left side of HER BODY? Poor dear, (edited by Management for language)

 

On ‎1‎/‎4‎/‎2018 at 10:34 PM, Husband said:

Hi Cypher,

 

I hope in some form this message makes a positive difference in your life. My wife... 22 days of being married had a ruptured aneurysm. 11% survival rate. Suffered several strokes including the thalamus. Left side completely affected and cognitively still impaired. However, it's been a year and a couple months and she's working so hard. Her left hand [claw] was significantly improved with constant bi-valves at night while I watched her cry as the therapist attempted to put it on so that it would one day be of some kind of use. She can now at least grab a tissue, lift it towards her nose, catch whatever it it may be, potentially even miss majority of the snot but that's alright...

 

I look forward to the day she can remind me of what she had for breakfast or recall any of the events we did that day. Her memory equals whatever we repetitively do and 99% that becomes the automatic response. 

 

You are doing incredible and just know there are others struggling hoping that you continue to improve and that their love ones continue to prosper as well.

 

Not good thinking there...my wife is a very strong person who takes what life dishes out head on and with a smile.she is my rock and thank hGod she has not had a stroke.very poor choice of words stated there!!!cypher..you obviously are living in a negative world. That will hold you back and make you miserable..which you already seem to be.

Edited by ksmith
Crude Language

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5 hours ago, alansd said:

 

Not good thinking there...my wife is a very strong person who takes what life dishes out head on and with a smile.she is my rock and thank hGod she has not had a stroke.very poor choice of words stated there!!!cypher..you obviously are living in a negative world. That will hold you back and make you miserable..which you already seem to be.

Every situation is different as are people and how they handle tragedy, I can only speak from my own observation of life after a stroke........ Yes i'm angry and yes my life is but a mere fraction of what it once was and YES its hard trying to continue with a smile on your face...........:terrified:but what do you do ????? 

 

To Cypher  Good luck and never stop trying,  if you do find the answer please share it with me :wink: 

 

Ed

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Hi Ed,  there is no magic bullet for this,  as you know.  All you can do is keep facing forward and make the decision to build a new life,  focussing on the good stuff and what you can do makes it easier. Personally I find emotions feed themselves so if I choose to be happy I get happier and if I choose to wallow the hole only gets deeper.

Heather

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I'm caregiver to my husband Bob, who was a great athlete, and had an unexpected stroke.   I think the thing I notice among almost everyone, is they feel 'why me' and they feel they have special reasons that it is worse for them than others.   I swear, if it had not been for this board, we would have felt that everyone else was going along fine (even heavy smokers and obese people) and we ALONE were chosen by fate to be dealt this terrible blow.    People have said they were english majors, and language was their life, so it was worse for them than others.     But no, not being able to even say if you are in pain or not and where, it doesn't matter what you did before.    People say because they used be an ice skater and now they can't so there life has no meaning.    These kind of things... I guess we have to realize that underneath our achievements, there is a being, a real person that is worth more than the sum of our parts.

 

My husband was a world traveler, who traveled the world teaching 6 Sigma.   When he flew into a country, people from other countries around there flew in to hear him speak.    He ran marathons, he rode in week long pedal bike trips - pedaling 60-100 miles a day.    I would have been less surprised if I had received a call telling me that while my husband was running the INSIDE track at the health center, wild wolves broke in and ate him.   But a stroke?    Not even possible!  why did this happen to us, when we've always been so respectful of our bodies and what went in them!   It's not right!

 

Then I came here and I found all the others living thru this, and MAKING IT.   I found that children had strokes, even unborn babies, it could happen to anyone, like a car wreck.   I swear if I had not found out how many strokes were hitting all different people, I'd have felt lost and abused by fate... but somehow, here among all the others who were working to improve and fight for their lives, I understood we were not the only ones and we were part of this large group of others, in the same spot we were in.   

 

So my husband, who had been so active and known around the globe, suddenly finds himself with a double stroke.   Thankfully, the one side eased back off after about a week.    So only one side down, 60% vision loss, no words, no bathroom controls, no balance, no walking, no reading, no writing.   The man who used to make power point displays for the world, now couldn't figure out how to hit the click button to click on anything, even after being told a million times.   Sequencing issues, trouble following a command or making a decision.    When came home, I could pull him to his feet and he could pivot to go from bed ->wheel chair -> bed, and I let him back down.    

 

Let me tell you what worked for us.   First, it is a bitter pill to swallow, to have lost so many things that one felt was who they were.    If you are not already taking a mood pill, you need to talk to your doctor.    We had a very wise doctor who told me right off that stroke patients needed to be able to not sink in despair, but to focus on how to keep going.   The meds allowed all that despair to clear out and he never suffered from the feelings of wishing he hadn't survived.  BUT, I have heard so many accounts of people who insisted they didn't need no drugs(!) who became deeply depressed later on.  This gave him a whole new window of being.   I will say he went off them at about 2 years, when they horror of it all had become a new way of life.   Because it is the first part that people need help with, the loss is sooooooo bad, they can't see anything except all they've loss.     Being able to get out of that terrible despair, freed him to put his self into his work to do better.     

 

You don't mention if you are alone, so I know that would be so much harder.   I am Bob's cheer leader, and if you don't have one, I know it will be much more difficult to have that "glass is half full" outlook that we are fortunate to have working for us.    I hope you will not discount yourself, but know that YOU are still that person.   The things you lost were the things you could do, but they weren't you.   You are that spirit inside, the same spirit that pushed you to learn and excell at all the wonderful things you did.   That same spirit that is you, will still push to learn and excell and struggle to achieve, just like it always did with the things you learned to do.   It's just that THIS is your job now.   Sending prayers and best wishes for you to keep going with your therapies.

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Sandy,Thank-you for such an eloquent,wise reply.  Becky

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Sandy,

That was so beautiful.  You and your husband are so blessed.   Good luck to his progress.  I'll add you to my prayers.

 

Six sigma.  Something I haven't thought about since my stroke.  Thanks.  I don't think I'll ever get back to that either, but who knows.

Have a great day!

 

John

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wow. I hope all feelings are held and cherished and considered normal even negative ones. I hope this truly is a safe place to vent. 

 

I am happy for all who are in a safe blessed place. But if this site turns into a place where true pain is criticized then Many real survivors will not stay here. There is great suffering and loss of identity. 

Caregivers may not even know the extent if their loved ones hide it and remain positive as a brave face.

 

Some folks perhaps are doing fine in a life that my friends say is protected. I do not worry about working or being in the real world except for volunteer visiting I do. lucky me. I get breakfast in bed hot coffee cocoa. And drugs for my pain they do not get for their bad backs.

 

wow. some of us have lost loved ones even spouses who ran from care giving.

 

never doubt this surviving is not easy. perhaps dying would have prevented all this pain but we would have missed the good, and there is some that occurs because we are still around.

 

to all survivors. you make a difference in this world, in your life, and so love yourself. you are and so be. be amazing. whatever it means you are ok in all the stages of grief that every survivor goes through in our own time.

 

for me I am disappointed my recovery is not as I hope, so I keep hoping but sure I get peeved that it us slow. but I have proof some things get better. my vision, balance, and yet my painful leg goes on even worse. I still cant drive or cook or......

as my doc said,some things are gone. Like for a lost child, I will cry for those things all of my days. they are mine. I get to feel without shame.

 

I dislike being shamed into positive thinking

I am positive about hope always faith

but I feel too and my feelings need to be voiced to be comforted. If it makes others uncomfortable perhaps they are afraid to see those raw feelings..it is on them. I appreciate those who allow me to be me in all forms. And I welcome all of your burdens that I may help you carry your cross a while or sit and be with you in your garden of need. 

For me no one told me how...just time,companionship, role models, friends who emailed me.....

and I still have days of hope or discouragement.....

 

thank you for keeping it real

 i hope i remember where I came from

and others may see time helps in all things stroke

 

i love you guys

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I'm not sorry that I saw a person in pain and reached out to try to comfort them and give them hope to keep going forward.   Encouragment given to someone who wishes she was dead, is not shaming, it's a life line thrown out to catch them from drifting further away.   If that's how I come off, I should stay away, what good is reaching out if you just hurt someone.

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12 hours ago, SassyBetsy said:

wow. I hope all feelings are held and cherished and considered normal even negative ones. I hope this truly is a safe place to vent. 

 

I am happy for all who are in a safe blessed place. But if this site turns into a place where true pain is criticized then Many real survivors will not stay here. There is great suffering and loss of identity. 

Caregivers may not even know the extent if their loved ones hide it and remain positive as a brave face.

 

Some folks perhaps are doing fine in a life that my friends say is protected. I do not worry about working or being in the real world except for volunteer visiting I do. lucky me. I get breakfast in bed hot coffee cocoa. And drugs for my pain they do not get for their bad backs.

 

wow. some of us have lost loved ones even spouses who ran from care giving.

 

never doubt this surviving is not easy. perhaps dying would have prevented all this pain but we would have missed the good, and there is some that occurs because we are still around.

 

to all survivors. you make a difference in this world, in your life, and so love yourself. you are and so be. be amazing. whatever it means you are ok in all the stages of grief that every survivor goes through in our own time.

 

for me I am disappointed my recovery is not as I hope, so I keep hoping but sure I get peeved that it us slow. but I have proof some things get better. my vision, balance, and yet my painful leg goes on even worse. I still cant drive or cook or......

as my doc said,some things are gone. Like for a lost child, I will cry for those things all of my days. they are mine. I get to feel without shame.

 

I dislike being shamed into positive thinking

I am positive about hope always faith

but I feel too and my feelings need to be voiced to be comforted. If it makes others uncomfortable perhaps they are afraid to see those raw feelings..it is on them. I appreciate those who allow me to be me in all forms. And I welcome all of your burdens that I may help you carry your cross a while or sit and be with you in your garden of need. 

For me no one told me how...just time,companionship, role models, friends who emailed me.....

and I still have days of hope or discouragement.....

 

thank you for keeping it real

 i hope i remember where I came from

and others may see time helps in all things stroke

 

i love you guys

 

11 hours ago, SandyCaregiver said:

I'm not sorry that I saw a person in pain and reached out to try to comfort them and give them hope to keep going forward.   Encouragment given to someone who wishes she was dead, is not shaming, it's a life line thrown out to catch them from drifting further away.   If that's how I come off, I should stay away, what good is reaching out if you just hurt someone.

you both are correct. 

I understand that some people feel negative  and wish to convey their feelings in their own way. I think that is wonderful , that being said, when people try to offer advice or encouragement to change negative thoughts is not , speaking for myself, trying to say  that a different way of thinking isn't allowed.  I , we, say those things for I've been through the initial journey of stroke recovery. True, not every stroke deficit is the same and there are many things I can't relate with however  I have gained the knowledge through my journey as well as from many from here that listening to my negative Nancy thinking is wasn't going to make my acceptance and recovery any better for myself and/or my family. So yes, venting is a good way to let out frustrations and I've, as long as many here have done. 

   Another piece to the puzzle I've seen is, the people who are on this message board are varied in recovery. Meaning from newly survivor to  a few months to years in the process, and also have different degrees of emotional stability. What I mean by that statement is , how one has found their own manner of dealing with the fact of how life is now is the way going forward. That is a tricky hurdle. I mean we all still have days when we get frustrated by our situation no matter how long we have been in recovery. Again, depending on the way that stroke effected your brain & body dictates  this.  I can't fully understand someone who lost the function in one side likewise someone can't understand my deficits.  But we can understand the drastic life change.  

I am here to uplift and share my knowledge of life goes on and we can learn to live new.

 

( hope that made sense I kinda got lost in my thought) :scared:

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some great posts here. I was trying to be positive and say you suck it up snap your helmet on and do what you have to do.  There was plenty of crying and depressed moments for me at the start and later, but i concentrated on all the great kind words from neighbors and friends and  those here on this board and decided to set a goal of better by springtime.meanwhile i made constant progrss at therapy, by always giving the therapist more than they asked for. more reps, more weight, more time whatever.     And the progress

came. iwas rol I was ahead of many in my recovery, but  i thought, that means little         I want it all back, and wont stop until  I have it.   i am going to play and sing again, i am going to drive my 5 speed 911, i am going to camp and hike and kayak and run. that was my life for years and it will be again. I am nor goig into my future stuck in stroke mode.  No way, My faith is strong and   I will be healed. thats it and anything else is unacceptable.

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On 1/5/2018 at 9:55 AM, alansd said:

 

Not good thinking there...my wife is a very strong person who takes what life dishes out head on and with a smile.she is my rock and thank hGod she has not had a stroke.very poor choice of words stated there!!!cypher..you obviously are living in a negative world. That will hold you back and make you miserable..which you already seem to be.

Yes Alan, I am surviving in a very Dark Pace at this point in response to the facts which have been related to me in regard to my own prognosis. I'm glad you've found your rock but my own rock has gotta be found, from within myself. As I do not think that there is a need to edit to edit oneself in terms of his/her own feelings in a place where there should be the freedom to vent, in a place where a person's opinion who has never sustained a stroke should be even brought forth in so far as any kind of directive for those who have endured a real stroke, please understand if I do not feel comfortable in further sharing my feelings on this site. Thank you for sharing.

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On 1/4/2018 at 9:34 PM, Husband said:

Hi Cypher,

 

I hope in some form this message makes a positive difference in your life. My wife... 22 days of being married had a ruptured aneurysm. 11% survival rate. Suffered several strokes including the thalamus. Left side completely affected and cognitively still impaired. However, it's been a year and a couple months and she's working so hard. Her left hand [claw] was significantly improved with constant bi-valves at night while I watched her cry as the therapist attempted to put it on so that it would one day be of some kind of use. She can now at least grab a tissue, lift it towards her nose, catch whatever it it may be, potentially even miss majority of the snot but that's alright...

 

I look forward to the day she can remind me of what she had for breakfast or recall any of the events we did that day. Her memory equals whatever we repetitively do and 99% that becomes the automatic response. 

 

You are doing incredible and just know there are others struggling hoping that you continue to improve and that their love ones continue to prosper as well.

 

Brightest blessings, prayers, & my thoughts go out to you & your wife for a healthier & happy 2018:smile: PS: I call my bum hand, "The Claw" as well;}

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16 hours ago, SandyCaregiver said:

I'm not sorry that I saw a person in pain and reached out to try to comfort them and give them hope to keep going forward.   Encouragment given to someone who wishes she was dead, is not shaming, it's a life line thrown out to catch them from drifting further away.   If that's how I come off, I should stay away, what good is reaching out if you just hurt someone.

*Sighs* I am not seeking anyone's or any efforts to throw me-a life line; I am looking for the raw material, or reason with which to create my own "life line". Since 2016, I have slowly gone through every effort to seek enough information & facts in regard to my current medical condition. Leave no stone, unturned as many of the facts that I have managed to garner leave little to no reason to think that I may get better or recover in reference to the current state of anything that research, pharmaceuticals,  or technology is able to currently offer someone with my boo-boos' ;} But in even knowing the facts, I still continue on to try anything & everything-if I use my own anger as my energy to not accept my fate, so be it. Everyone needs & works off of different emotions at different times in one's life. Nor, do I  think that there should be, to edit oneself in terms of his/her own feelings in a place where there should be the freedom to vent, in a place where a person's opinion who has never sustained a stroke should be even brought forth in so far as any kind of directive for those who have endured a real stroke. Please understand if I do not feel comfortable in further sharing my feelings on this site. Another caregiver did share his feelings about what his wife was going through...it touched my heart deeply. This individual did not take it upon himself to counsel me, in terms of what I should do or how I should feel,ect.

Someone once said, The road to hell is paved with good intentions" so although I recognize the well-meaning & thoughtfulness behind everyone who took their good time to comment, please extend me the same courtesy & don't place a warning on anyone who still has the energy & nerve to share their "dark" side. I spend my most of my time putting-on- a positive front & keeping-a stiff-upper-lip about my condition, seems I will have to do the same on this site & write nothing if it isn't, "happy-happy, joy-joy". I have a problem with that.

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23 hours ago, cypher said:

Someone once said, The road to hell is paved with good intentions" so although I recognize the well-meaning & thoughtfulness behind everyone who took their good time to comment, please extend me the same courtesy & don't place a warning on anyone who still has the energy & nerve to share their "dark" side. I spend my most of my time putting-on- a positive front & keeping-a stiff-upper-lip about my condition, seems I will have to do the same on this site & write nothing if it isn't, "happy-happy, joy-joy". I have a problem with that.

I am so sorry Cypher if my responses in any way made you feel that only "happy happy joy joy" was acceptable here, and if I made you feel unwelcome.  We all have dark times and reaching out when feeling dark is important.  My instinct at such times is to offer advice and try to help people pull themselves out of the pit, I've spent enough time at the bottom of that pit to not want to leave someone else there.  I also perfectly understand that there are times when we are not ready to hear such advice.  But when you became "abusive" to a carer who is also struggling with this thing in her own way I could not let it go unremarked. Our families and carers are as affected by this thing as we are and also need to be given support.

 

I do hope you find your peace with your life soon. 

-Heather

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Cy, in no way did I want to give you the impression that you could not rant.   And it's true, I've not had a stroke.   Until my husband had his, I was the handicapped person in the family... now oddly, I'm doing everything for us both, eventhough I am barely able to walk.     My husband has done so well because he had a cheerleader, someone to encourage him.   That is the gift I wanted to give to you.    You are not obliged to accept it, you must work it out.   It didn't seem unreasonable that if I could have helped him so much that I could have done the same for someone else.   Never in  my worse nightmares would I ever have dreamed that after all I've been thru with my husband, that reaching out to another in his position would be thought of in a negative way.   I will retreat from my idea of trying to encourage others, so as not to offend.

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Sandy, As a bystander I'd like to say that that contribution of yours was probably the most touching I had ever read. It covered the situation exactly as you saw it  and I know of no-one who could have expressed it better.

Please do not get discouraged from  trying to encourage others. Stroke victims need you.

Deigh

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