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I didn't think my heart could break any further but it just keeps on breaking


SassyBetsy

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I keep sobbing. I am not getting work back and I am not getting the school thing going but maybe I can still do a class but I am not the person I was and I just hurt so much watching my life and hopes and dreams disappear. so much loss and if someone says stages of grief to me I will scream. what stage is screaming thank you veery much. I am in stage hurts and sobs. I perhaps need more mind numbing drugs to ease the pain of watching my life die while I do not. I try and be brave when I am not always getting phone calls or invitations and when I know that life is moving on while I stopped. I stopped. I changed. I don't know what is left to work with and I keep trying to do what used to be and it isn't any longer. I know I need to accept it and I should just stop trying to reclaim a life that is dead but I am not dead. I feel in limbo. I keep trying for stuff and they look at me like how cute and inspirational but not going to really work here though. I have become a joke. I am having a down night now and I know it is the disappointment of not getting the fieldwork I had last year for school and I don't know what I was thinking setting myself up for this disappointment. I can't do anything on all these pain killers now and I just hoped I would be able to later. It is later and I am just barely hanging on daily. I just have to survive daily now there is so little room for having goals like other people get to have. But not many people are going through the day dealing with pain like this either. What am I doing thinking that a life is going to happen. some where in my mind the goals still live and it is hearbreaking to watch them die. There isn't a pain pill strong enough to stop the pain of disappointment. All I do is ask why am I here to watch this happening and since I have to be please give me the strength to do it because nights like these it is just all consuming. words like grief and loss don't begin to cover it. I guess I wasn't ready to drop and retire yet and I thought I had time don't we all think we have time.

I am physically taxed out today and so it makes it harder to deal but in reality I would never be ready for all the disappointing news I got today. it is all such a challenge and just the small things feel so overwhelming at times. all I can do is sob. then what is left but to do what ever is next. I just forget in between times how painful and lost I feel when I cry. everyone has their own problems and I feel like I always have mine around and there isn't anything that can be done for it. I don't blame them for not putting me back in my life. it is gone. I don't see the new one yet except just sitting waiting for what I don't know. I keep thinking that the worst feelings are done and then I get my heart broken all over again. I go though my list of comforts again. like fuzzy robes and caramel coffee. the bad thing is that when I am all upset and crying then my stupid leg kicks and jerks so agonizing and abnormal. I feel like a freak show. This torture goes on physically and no one has answers or treatments for me. I am not going to want to get out there and go interview again but I don't want to sit home either but what can i do now? I don't know but I am overwhelmed with lots of annoying problems that are piling up right now and I feel like if I can deal with these home things then I should be able to do a work thing but people just see this disability. I guess I didn't know how it is for disabled having to prove and prove over and over. I just was not close to retiring and I am bored and lonely while everyone goes to work and have people to talk to. I have nothing meaningful going on. I just exist between pain pills really but I keep going out there pretending to have a real life. There is so much discrimination I know I have not been on a foggy island I just have not been a prisoner like this chained to this invisible ball and chain called loss of independence. Just when I think I am all settled in then something else happens and I just sob myself half to death. I worry I won't stop crying but then I do. I know I can't keep up crying because it takes too much energy. I don't know if it is time to give up or not. I want to find something to do but perhaps it is too stressful and I need to relax with my health in mind. Why do I struggle to do so much I just want to have something meaningful to do with my days

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I don't remember the stages of grief (because I think it's way too simplistic) but I think the stage you are in is just before "acceptance", you are realizing all you have lost, and are in mourning  Once you wrap your mind around it, you will hopefully find new goals and new friends.  Listen, people do not stay the same, stroke or no stroke:  you get married, you have kids, you get old and go on Social Security.  Life is never stagnant, you just feel like it is.  If illness comes along, just another change and really just as life altering as most others. Time to shift gears, and to get out and do something, anything.  Stop thinking about careers and money, I know it's hard to let go but in the end you still have you, and you are a great person, I can tell! 

 

Actually I truly believe crying relieves a lot of your unhappiness, they say the tears contain all the bad stuff and you are just getting it out of your system in the easiest way possible.  Whether true or not, if you believe it maybe this can be the way to turn a new page, time to "think outside the box", now that the bad part has been cleansed a bit.  I didn't even have the stroke, my husband did, but my life is irrevocably changed in every way.  I started by deciding to pretend that everything was fine to family and friends, and yes even strangers.   I shed lots of tears in private of course, but eventually we found a new life, a boring life in some ways, like we're retired yet we can't be like all those people on the AARP commercials hiking through the woods laughing like fools, but....eventually we found our new normal.  And you will too, I can tell how strong you are.  There is a world of new friends out there, who will accept you as you are now and not compare you to the old days.  Believe me, the new friends we have found in the last four years are such better friends than any of our old ones, who all disappeared pretty much.  The new people accept us as we are, and that is worth everything in the world.    Start with the internet to practice but  next thing you know you have real life friends;  I still can't believe that's how it happened for us, but it did. 

 

When I take my husband places (and yes, I know, he's lucky to have me, everyone tells me so all the time ;-)  the change in his mood is day and night.  Even if it's just out shopping.  When we don't go out due to weather or whatnot, even if just a few days. he declines so fast it's scary.  Does your town have those transport kind of buses  that can drop you off at a shopping mall or is that kind of trip too much for you?  Are you eligible for an aide who can come sit with you, watch TV or play cards together, or even take you out somewhere?  Because anyone would go nuts just sitting home by themselves all the time.  To be meaningful is, yes, being part of the world, but not necessarily through your job.  I know, because I had to stop working eight months after Ray's stroke to take care of him, and I felt like I had lost my identity.  But you know what, I have a new identity now, I had to work on it but it's really me, not a "job" me.  Eventually everyone who reaches retirement age goes through it too so it's not just us.  It's sort of scary to get to the inner kernel of your real self, but it's a journey that can be very rewarding in the end.

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Hi Sassy,

I am so sorry you are feeling this way. There are so many things you said that were meaningful to me. I remember your welcome to me after i had introduced myself to the board and it was something along the lines of "welome to the world where one pill makes your happy and the other pill makes you sad...". Since then i have followed your travails or journey thru purgatory with much admiration for you strength, wisdom, perseverance and especially your humor and quick wit. There are many philosophies one could use to rationalize our situations but none of them seem appropriate at the moment. Suffice to say that it is hard to watch life pass you by and feel like you are only a spectator and can't take part. It is a crisis of the soul. I am familiar with the feeling and can empathize with you. It's as if the universe has played a very dirty joke on us.... But you are a survivor as am i and for what it's worth, you have helped me survive the same dirty joke. That is 'meaningful'! Perhaps the universe is saying your life dreams aren't good enough for you..., you can and were meant to be more and this is how.... And, though it feels like loss it is an adventure (painful as it might be) and you have and are in the process of discovering what that is and we get to share it with you. While you can't minimize what the stroke has done to you physically, it has left you with your mind and wit and these are very powerful tools! Its not time to give up. You have too much to do and share with the world and we are all the beneficiaries of your journey! 

Dean (beneficiary)

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Betsy,

 

Well here I am a now 73 year old Army veteran that experienced a stroke 11 years ago and I'm still here kicking but not very high... I am in Texas near Fort Hood Army base where many other soldiers and retired veterans live with disabilities much worse than a stroke...

 

They have lost limbs, some arms and legs, can't hold their kids, some females can't hold their child either... We all meet sometimes and discuss what we lost then we think we didn't lose our lives like many of our buddies did fighting in the same war or conflicts!!!

 

I read your blog you posted this morning as I was about to post mine but I had to read yours twice and the comments above mine now... Hey you still got your life and living, I got mine too so we can make it until our time is up and be thankful our strokes didn't take that away from us!!

 

You said yourself "You know you need to accept life as it is now." I felt just like you as my wife had to quit her job to stay home and care for me for two years before she returned to her banking job... When she did I got up and went to work at Walmart as a greeter using my scooter and stayed for three years then I got my disability rating from the VA so I quit that job but not my living...

 

You can't stop living now there is plenty more you can accomplish being a stroke survivor... Obvious I don't know your condition or situation but I saw your age and you are younger than me by many years... I take pain meds too, left side paralyzed, leg shakes, jumps, I can hardly control it but it gets me from point to point and where I need to go daily...

 

A lady comes in daily to help me get things done, the PT guy follows her trying to help me walk better so I'm very thankful social security pays for that service!! Look at your life again reevaluate and know there are others in worse shape and not doing what they would like to be doing, taking meds, seeing their doctors but they are living!!!

 

Just being able to be on this site has helped me cope with my condition and I got my grand daughters little dog with me all day while she is in school then we listen to her tell us how her school day went and I help her with any home work she may have!!!

 

While you were not ready to retire this early you have to accept it now, but if needed,  you can take some classes and do other things you enjoy!!

 

"Just my thoughts on life after stroke." 

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I guess the important thing about the words "stages of grief" is because it indicates that there ARE stages, so there is hope of something different coming.   One thing to be sure though, you have to find a NEW normal, no you are not going to be the old same one again.

 

I used to sneak into Bob's closet when he slept, and smell his clothes, with his cologne/aftershave clean smell.... it would bring back vivid pictures of how he was before, and I'd cry till I couldn't breathe.   One day I realized that when I did that, I was putting myself back into our pre-stroke life, and then BAM!  hitting the stroke reality, it was causing me to re-live that horrible event of going from normal ->stroke, over and over.     So, I stopped doing it.    I only see us in the here now, and look at old pics, fine, but never try to go back and 'get there' again.    Too surreal.

 

I will also comment that when I tried taking Bob off his mild anti-depressant, he became a big sobby mess too.   He looked like the most miserable man on earth.   While on it, definitely not drugged, nor in la-la land.  But definitely able to think and try to improve without the weight of the world on his back - this is very important.   You have to be in a place where you can have an outlook that allows you to try to work toward your new normal.  Bob no longer needs his anti-depressant now (think it was citalopram), as the shock of the tear the stroke made in his life has wore off.

 

I don't know your actual age, but if you are not full retirement age, get a disability application going with social security online right away!   People put that off, because they think they may come out of it, BUT, people can even work a little, it allows you to see what you can do.   If you don't work again, you are just losing income everyday, because when approved, it pays from your application date.

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I wish there was a magic pill that  you could take to eliminate your pain, heal your body and boost your spirits, but there isn't of course. However, if I read your profile correctly it has only been eight months since you had your stroke so i would remind you that you are still in the heart of the healing stage. Resolving yourself to your current state forever would be premature. You just can't determine how far you will heal and to what extent. In fact, you can't determine how long the healing will continue. However, you can be reasonably certain that feeling hopeless and depressed won't help the healing process and could even hinder it. So try, try, try to avoid giving in to your feelings of gloom and doom. I know that is easier said than done but I think it can be done. Beyond that, I can't be certain, but I get the idea you have not had any physical therapy yet. If that is true, I suggest you seek it out. And the doctor you need is not necessarily a neurologist but most likely a physiatrist, meaning a doctor specialized in rehabilitation. You can often find this type of doctor attached to a rehab hospital. Your pain seems to be both physical and emotional and I would imagine they are connected. So perhaps you need to explore different pain remedies. Narcotics, of course, can be problematic, especially if taken for an extended time. My wife, a stroke survivor herself, has had a lot of success with a pain pill she used even before she had her stroke to treat back pain. It is called Tramadol and I am told it is not technically a narcotic though it works on what doctors call the narcotic receptors. It also doesn't make my wife groggy. Also, it has gone generic so it is not at all expensive. You might ask your doctor about this one. I have no idea if it would work for you but it just might. 

Betsy I fear that you are spiraling into deep depression if you aren't very careful. I hope venting, here and elsewhere, helps stave off that depression but if not I urge you to get some professional help. No good will come from becoming deeply depressed but much harm can. You've already had a stroke. You don't need a bout of severe depression on top of that.

Take care of yourself, my online chum, and keep pushing on. You just might be surprised someday to see how far you have come despite all the odds.

Good luck.

--Ron

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Sometimes all the best advice in the world does not even work, so cry all you need, mourn what you have lost, see if you can find that one thing that will take you into a better future.  (((hugs))) from Sue.

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Thanks Sue. I can't tell you how important it is, how meaningful, how comforting to be allowed permission to cry and tantrum even and just be allowed to feel the real thing and just let it go. Yes I saw frozen and I love that song. And that is basically it then just being able to feel that storm within and accept that. no one wants to see that. Ifeel like I have to smile and cheer others up sometimes and sometimes yes I just have to feel that emotion which I still say there isn't a word for this not grief not disappointment beyond despair that just takes your breath away and possibly is on the brink edge of deep depression and perhaps I again cheat by not falling into that abyss.

Ron as usual your voice of reason and encouragement soothes and motivates me. Don't worry I have looked at depression before and it hasn't snared me yet. In reality it wasn't so much depression as incredible fear and intense rage that just ends up being expressed in pathetic sobbing until I can't think of anything except how I wish I could breathe and sleep. Unless a professional can offer me a placement I have no use for them nowLOL because I just will continue to want to fight this and not accept it for a long time to come.  What I want is to be able to do this and finish this and if I have to crawl to get there then I am willing but others are not so there is my frustration.  Others around me say be realistic and I don't know how to be if that means giving up on the goals I had and yes of course I am too old to be in this but I think I can do it without having a bikini body.  So I thank you Ron for reminding me that no one has a crystal ball and that it is not unreasonable to hold onto hope. The cost however is having to deal with disappointment and heck I didn't do that well pre stroke.  The Irish in me is stubborn (wink wink).

 

Bob is indeed lucky to have you. I can't imagine watching another person go through this and perhaps I need to put that on my grateful list that is me and not someone I love because I wouldn't wish this on my worst enemy.

 

Fred thank you for the coaching and for snapping me back into reality that I am not something special nor alone.  It sometimes doesn't really matter to me if there are worse off folks out there when I have these feelings I can only be in a wind tunnel bombarded with it all.  Then perhaps it is all released and purged because i sure feel better lighter even.  But I must keep in mind that there are others who have survived and so I thank you for being a role model and telling me to pick up my sorryformyselfbutt off the ground and keep marching forward. only now with a cane.

 

Dean thanks for just sitting with me and sharing it.  I think that is so helpful that there really is not something to say with this stuff that is beyond words. It is a dirty joke. I am furious and I am devastatedly sad. is that a word. lets make it one. I am glad some of my ramblings helped you. I am going to take that thought you said that my dreams were not good enough and thank the universe and look forward to being a diva. Just being rather than doing.

 

I have never been good with change.

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PS

thanks so much for taking the time to post. I so needed you guys when I looked back on here for some support and encouragement. thanks for not letting me down. I too have watched people just move on and I think gee I wouldn't do that to you but this is hard to watch and look at. I am some freak and they just see what they don't want to be.  so thanks

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Betsy, Betsy, Betsy. My dad used to always say that as long as you are laughing you are not dead yet. Have you ever cried and laughed at the same time? I am with you all the way dearest. I can soooooooooooooo relate to what you are feeling. This is like the Wizard of Oz. I am thankful for having a place to vent because i can't vent at home and i can't vent at therapy and i can't vent with friends and family. I have to be strong for everyone else. I have to be an "inspiration". I didn't chose the role but here i am. Moms can't come unglued. I am thankful for friends like you that i can be honest with. Without you and the other survivors i am all alone in this tornado. I know that you have a lot to give, more than the average, and you are fighting to find a way to do that. I feel your frustration. I feel your loss. We have to fight because we are fighters. We have to find our way back to Kansas. Your fight is your spunk. I am happy to have a fighter on my team. You would not have made it this far in life without your attitude, without your strength. I have lost friends on this journey, i have made friends and i have discovered friends that i didn't even know cared one way or the other. I have discovered love in unexpected places. I have learned about others, about myself. Find your independence. Put your s@@t kickers on and dye your hair purple. Don't waste away. Show them what you are made of sistah. Clear the road. Scream a little scream for me. I could use a back-up screamer. Hugs and screams.

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Ok seriously i laughed and cried reading this !!!!  Thank you for this!  I feel ashamed when I vent. I have been told so many times to buck it up and yes it is expected that I stay prim and ladylike with my hair unruffled and write songs about this. I am so relieved to hear that screaming is cool too. I am glad to hear that someone else is thinking what I am thinking too.  So I raise my cup of tea to you and I think we can be like the red hats club here LOL  which BTW I am thinkiing of joining here real soon. 

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hey Pam :

 

reading this blog reminds me of how I felt right after my stroke OMG you are mind reader. your first paragraph is exactly what I dealt with.  I know like I did you will come out of that dark tunnel of whyme and life is so unfair thought & realize soon things just happen good or bad but God will provide you strength to come out of it. I know I struggled feeling of worthless since I had attached so much of my self worth to how much money I made, till I realize I matter & I am worth it because I am God's child & my job here on earth is still not done. In life only change is permanent , post stroke life will be different not good or bad just different. I know you will find your way to acceptance after mourning your losses. For me routine in life helped & I found blogging & chatting with other survivors  also very therapeutic for my soul. helping others in their journey helped me too how cool was that. BTW there is sun hiding somewhere behind that dark cloud & it will always come out, just keep your head above water till tide changes.

 

Asha

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Betsy,

It is amazing what one person can help you with to change your life. I have been through several tuff times and still continue to struggle with them. Last year I decided to become a Minister. There were different things in my life that encouraged me to do so. I remember years ago a co-worker had told me that God had a purpose for every single one of us on earth. Some of us just don't know what that purpose is until we find it. Even though I am having a tough time dealing with all my illnesses and diseases I felt my purpose was to help others within means that I was capable of. I am more focused on talking to people with problems than dealing with my own. It makes me very happy to see that I can help someone overcome their problems. I look outside every day and thanked God for letting me live another day in this world he had created. And I thank him every day for letting me try to give guidance to people I meet and that I know. It gives me great gratification to not let my illnesses,diseases and struggles bring me down. But to help others the best way that I can with their personal problems. Betsy, do not give up hope for all hope is not lost!!! I will offer you a prayer and hope you find something that will give you the guidance you need. Remember, we all serve a purpose on earth you have one too.

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Some people find strength in screaming. When i delivered my first baby i was told not to scream. It was hard to push and be quiet. So when i delivered my second baby I said to he!! With it and screamed away. It was so much easier to push. Have you ever watched weight lifters? They grunt and groan and scream. It gets the adrenalin going and gives them strength. Use what you have. Think of martial arts. Use your anger to your advantage but be ladylike in public. You are from the warrior class. Own it. Keep fighting. :) someone said that hope is for people who don't fight.

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