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So I haven't been very well lately. 

Not sure why I'm having these little turns. But I think they are here to stay.

I'm trying my hardest to develop a consistent routine. 

 

People keep saying how great I look.

Do I though?

Do I?

 

I'm so NOT great.

I want to scream and yell...and cry.

 

Unfortunately I have absolutely no tears left.  Not for me, not for anybody.  I think I used them all when This Happened. 

 

Looks can be so deceiving. 

We all know that.

 

I know this topic gets discussed all the time. 

 

It's just at the moment it's a pretty big deal in my life.

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There is nothing more irritating than people trying to be nice saying, "Your looking well"...... My favourite reply is "You should have gone to Specsavers".

Regards

Deigh

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It can get you down if you let it. 

 

You need to respond in context.  Some people say it because they care some because they don't know what else to say and want to be polite. 

It like people say "how are you" but its not really a question they want you to answer. 

 

As Deigh says find a witty response to turn the conversation, or you can reply with the truth, something like "that's odd, I feel like crap today"

We don't have to all be wonderful all the time. it is OK to not be OK,  so long as you are working to change things as well. 

Hugs

-Heather

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Thanks Deigh for the giggle!

 

Yes, Heather you are so right.

 

I have adjusted quite well to this new life. People see that, but nothing else.

 

I may have to start giving out a few truths.

 

J x

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Sounds like you need comfort and affirmation rather than encouragement.  I guess we all do.

 

So here are a pile of virtual hugs in the hopes that they will help.   And a virtual shoulder to cry on.

 

Having a stroke is really shitty.  Period.

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Janelle,

So often we see you comforting others,  it is important to remember that you may not be feeling too chipper yourself. Within the last week, you sent me helpful thoughts when I was having a bad day.  You are a really great person and ally for all of us in this group.  You say you would scream and cry but can't because you have used up all your tears.  In that case just do the screaming.  I have gone out by myself and yelled as loud as I could at the trees and bushes.  Not much effect on the trees and bushes but sometimes an effect on me.  And on our bad days, just about any change or effect is helpful.  

So sorry you are feeling bad.  You deserve happy days and rainbows.

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Jannelle, hearing this often myself and thinking and feeling no different than what Heather posted above. I don't always have an appropriate reply, so I might just nod. Like you Jannelle, this last week I've had several good days and others not so much. Fortunately for me, I spend a great majority of time alone (Fuzz not included) so it's not always from somebody's comment. I can wake up like that. When I have some of those difficult times I pray a lot, whether you're a believer or not, it helps me in very positive ways. I usually start feeling better, make conscious choices to do some things to snap out of the funk, just move or shift my world around me a little. I'm not sure of the science or psychology behind it, and of course there will be many explanations I'm certain! It just seems to help me. Maybe changes my perspective a fraction, just enough to see clear of my present thinking and slowly pull myself free of them, kinda moving away and putting time and space between those more uncomfortable thoughts. 

 

Lord knows Jannelle, I have my share of those situations as others here, all the time. We are indeed a very unique group, us strokers. Find consolation in that alone, tell us, were here to listen and help..

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7 hours ago, jwalt said:

Janelle,

So often we see you comforting others,  it is important to remember that you may not be feeling too chipper yourself. Within the last week, you sent me helpful thoughts when I was having a bad day.  You are a really great person and ally for all of us in this group.  You say you would scream and cry but can't because you have used up all your tears.  In that case just do the screaming.  I have gone out by myself and yelled as loud as I could at the trees and bushes.  Not much effect on the trees and bushes but sometimes an effect on me.  And on our bad days, just about any change or effect is helpful.  

So sorry you are feeling bad.  You deserve happy days and rainbows.

 

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Janelle

 

> "People keep saying how great I look".

 

This is often people trying to be positive, or who think that if they deny the reality it will magically go away.   The reality is horrible.  Your life has been overturned and chunks are missing.  You are doing an absolutely AMAZING job of coping with it, but things are still shitty.  And don't let anyone deny that.

 

I have been continually surprised over the past almost-4 years just how resilient we are.  Somehow we keep on, we manage to maintain some sort of good humour, and a positive outlook (at least some of the time).  You are a super-hero to keep going as you have, and you are quite entitled to feel bad.  And you deserve support when that happens, not denial.

 

I was at my neurologist last week, he had an intern.  The intern examined me, and gave her findings to the neurologist, basically "he is doing fine".  At which point the sainted Linda (who was with me at the time) exploded:  "He is not doing fine.  He has significant brain damage.  This sucks".  The neurologist and I both applauded, intern looked quite shell-shocked.

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Sometimes interns need to be confronted with reality. My niece had a similar experience with a midwife intern.  My niece has just had a very difficult pregnancy with chronic hyperemmisis (I've no idea how you spell that). She was sick from conception through to and including the delivery. At one of her last midwife checkups there was an intern there who did all the measures etc. and then basically told her she was doing well and everything was fine, to which my niece replied something along the lines of "I can't take this much longer, can we just get it out" the intern nearly freaked, especially when the senior midwife said "yes this sucks, but you need to wait another 3 weeks at least"  she then told the intern she better read the case notes next time.

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On 10/12/2019 at 12:35 PM, GreenQueen said:

So I haven't been very well lately. 

Not sure why I'm having these little turns. But I think they are here to stay.

I'm trying my hardest to develop a consistent routine. 

 

People keep saying how great I look.

Do I though?

Do I?

 

I'm so NOT great.

I want to scream and yell...and cry.

 

Unfortunately I have absolutely no tears left.  Not for me, not for anybody.  I think I used them all when This Happened. 

 

Looks can be so deceiving. 

We all know that.

 

I know this topic gets discussed all the time. 

 

It's just at the moment it's a pretty big deal in my life.

yes totally. Sometimes we meet other survivors who seem to have it together. They may not have the same challenges we have and say things that works for them. Well that's all in good but to you,,, no success,

We all have many ebbs and flows in our recovery. Hellz, I'm over 10 years and I still get down on myself. regularly honestly.  I am so over that comment " but you look great" I know they are trying to give us a compliment and when they have no idea what or how stroke can effect us, it seems like a back-handed compliment. Or to me at least. Like you said, you've been on less frequently, that's the reason I'm the happiest alone in my apartment. I'm glad they think that and I'm glad but they, some, assume I am back to normal and when I can't do what they think I can do., I retreat back into my 'safe zone' yes agreed, no tears left because I know why I'm sad , And I know when I try to explain to people  that I'm not OK ,  I get confused looks . We all have these feelings , some more than others or less, but having them none the less. We  all can  understand the frustration of it .  Emotional liability.  Yes and no.  True, we have less control of our emotions.   Just know your moment can last as long as you want to but conversely at the end of the day, only you can make yourself better. In the mean time  Guurrlll, I feel you x

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Thank you everyone for your honesty. 

 

Your replies are all different, but can be put in the same basket of "me too".

 

Knowing I'm not alone in the struggle really does help, as I often think that no one understands.

 

But you guys...you get it.  Unfortunately, you all know exactly where I am coming from. 

 

J x

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When people tell me that I just laugh, they have no idea what the inside of my head looks like, all cobbwebby and honestly, just vacant at times when the fog rolls in. They'd be terrified if they ever saw it.

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This is what gets me out of bed some mornings (and stops me playing hopscotch on the highway on others):

 

Knowing I'm not alone in the struggle really does help, as I often think that no one understands.

 

We all know that others care and mean well, but I hope and pray that they will never ever know what we go through.

 

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I was greeted by a friend the other day with the good old, "Your looking well!". I explained to him that stroke survivors hate that expression so he replied that from now on he would greet me  with,  "You are looking terrible"........That's what friends are for.

Deigh

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I must try that on my friends and family :-).

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Yes, Scott. No one would want to see inside!

 

Deigh, Paul...looks can be deceiving indeed.

 

J x 

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On 10/18/2019 at 6:39 PM, Deigh said:

I was greeted by a friend the other day with the good old, "Your looking well!". I explained to him that stroke survivors hate that expression so he replied that from now on he would greet me  with,  "You are looking terrible"........That's what friends are for.

Deigh

👍

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On 10/18/2019 at 5:05 PM, PaulNash said:

This is what gets me out of bed some mornings (and stops me playing hopscotch on the highway on others):

 

Knowing I'm not alone in the struggle really does help, as I often think that no one understands.

 

We all know that others care and mean well, but I hope and pray that they will never ever know what we go through.

 

👍

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This reminds me of the saying I was using for my quote for awhile and my brother in law really likes it when he says I look good. I reply "You can't see numb".

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On 10/18/2019 at 6:39 PM, Deigh said:

I was greeted by a friend the other day with the good old, "Your looking well!". I explained to him that stroke survivors hate that expression so he replied that from now on he would greet me  with,  "You are looking terrible"........That's what friends are for.

Deigh

brilliant

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You know Janelle, in a re-read of your thread today it occurred to me that from what I gather, it seems that many of the stories I hear about, many strokers come back to an acceptably normal functioning range after a dose of physical therapy and rehab. OR if administered a drug quickly enough it miraculously curbs the effects. I know there's evidence to support this drug intervention and the outcome of the stroke damage but it would seem in many cases here and others, the damage is done and long term effects are permanent to varying degrees. I'm confident that hearing about stroke comebacks or administration of a drug often changes the public's perception of strokers in general. "Don't worry about it, you'll be up and back to normal in no time!" 

 

I know for a fact that after periods of rehab, both physical and occupational, I did re-learn to walk, dress, and do many of the basic tasks, but it only goes so far and for so long. And that certainly doesn't negate the fact of how thankful of I am to have recovered as much as I have, but that is in reality a long stretch from where I started post stroke. Months of in-patient as well as outpatient rehab, lots of sweat, prayer, and hard work just to get where I'm at today. Many of my friends who visited me shortly after my surgery and witnessed my progress from not being able to walk to a return to work after many months of hard recovery rehab may kinda be a bit dismissive about strokes in general, like having a cold or breaking bones and other injuries, you'll fully return to normal and life goes on. 

 

And yes, life does go on but I guess that being here and reading other stroker stories, I don't feel as bad knowing I didn't make it back to near 100% and I know personally just how far I did come from how truly screwed up I was after surgery. Today yea, on the outside I look like I've always have but inside many things are still foobar and you can't see that, or the numbness as was so well articulated previously. Too, I'd guess it's testimony to the amazing regenerative healing properties of the mind, spirit, and body to know first hand just how far we have come. And cognitive as well as emotional acceptance that what is left is a matter of how we perceive that. Though some days Janelle, my emotions still get the better of me also. I'm honestly thankful for still being here, where I'm at, my family, my cat, and other simple things I focus more on. I know firstly that "Thankfully, this day too shall pass" and life goes on..

 

I totally gotcha!

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For sure not seeing and knowing complete recovery will never come with time is very hard for us to accept. I feel I was stronger and better off over all when I accepted that this was a life sentence. I know I will continue to improve however screw it I decided to try and go ahead and live that life anyway since the stroke didn't kill me. 13 years! will2 you folks that have been fighting so long are heroes and help the rest of us feel we got this and we can do this. 

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Deciding to live the life that is, is a large part of how I've adjusted to this.  I know some stuff I'll never get back and some stuff I'll always do differently to other people and/or not to the standard that I'd like, but when it comes to the crunch I'm happy and active doing the things I like to do now (even though some of those things are not what I would have done before)  I do still work for improvements but I also recognise that I may not get much, but you do nothing you get nothing. So either way I'm better off, and the best version of me I can be. And if I have a "down" time I know that it will pass, and I don't let myself brood.  That doesn't mean I won't get that flash of anger/annoyance when someone says "you look well" etc.  but mostly I can ignore it and know that good manners mean you say "thankyou" ( even if it is through gritted teeth)

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You are always so helpful with your brilliant take on these things. Thank you! Here is a bit of silliness for you. I retired at 59 1/2 and got to enjoy about 5 years of that before I stroked out. Well after getting up at 4AM and driving 50 miles each way for so many years I was beginning to enjoy staying in bed until around 9:30 every morning mostly. The joke around here is that the stroke hasn't changed that at all.  

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