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In another thread, Heather and I were discussing the “when will you have kids” question.

 

It made me think about discussing stroke stuff with people who haven’t stroked.

 

We have probably rehashed this 5000 times...

 

I get so over people telling me “you should...” when I mention a problem.

 

Or if I mention a problem, and get told “that’s normal, happens to me too...” .  Like incontinence. At 46. Like aches and pains when getting out of bed in the morning. The ones that have nothing to do with age.

 

At the moment, I’m ok with where I am, with who I’m meant to be.

 

But that doesn’t mean I don’t get down about bad comments.

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Amen and amen!!! The one good thing about Nuedexta that I take for my PBA (still working on therapeutic dose [90 days]) is that I can tune out others easier like putting a box around my head. I am in a different place right now after stroke. I feel very strongly one way or another when I get similar responses you speak of. Unfortunately, that leads me to being very vocal on said point. Blunt, exacting, and we'll say less than giving AF. My apologies. The happy on another planet box on the head thing works sometimes.

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No apologies needed!

Kudos for standing up for yourself!

I've always been quite diplomatic and when people start talking over top of me, I let them.

Half the battle is probably letting them have their say, then having MY say.

As Tarina said about not worrying. Easier said than done. 

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I'm so sorry if I said something that upset you.  That never would have been my intention.  I fully understand how hard it is to feel dismissed when something is really bothering you, and if you felt I did that, please accept my sincere apologies. 

 

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Everyone wants to give you solutions. And to empathise with you but yes their comments can so easily cross the line of what you are willing to hear at that moment.  Sometimes you have just listen to them and then say "Thanks for trying to understand" or " I'm not looking for a solution right now, I just needed to vent/moan"

 

Everyone knows someone who has "the answer" and they aren't always open to hearing that their "answer" is not my "answer".

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My brain hurts and is a bit more gelatinous than I would like (lol holidays) but I am sorta lost. I even commented earlier. Tarina I hope you are not concerned of offending me...I think I speak for more than myself that we have many times experienced others around us not quite "understanding" where we come from. An example I am thinking of is neurofatigue. The tired you get is not "I didn't get enough sleep. -or- I worked out for two hours" kind of tired. It is brain fatigue that shuts your brain and body down...rest and sleep is necessary not optional. This concept is extremely hard for someone who had not experienced it to relate to. So many of us are given "advice" from others trying to be helpful but for us it can be frustrating to hear.  This is a difficult hurdle to get past for us...for many reasons...feeling defensive, overwhelmed, misunderstood, unable to control reaction, or hearing so many times from so many people that it gets in the way of being logical about another's inability to hear/understand an issue that is an everyday occurrence. Does any of this make sense? I really do have a headache...dun dun dun brain shut down lol. 😵

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On 12/17/2018 at 11:19 PM, Tarina said:

I'm so sorry if I said something that upset you.  That never would have been my intention.  I fully understand how hard it is to feel dismissed when something is really bothering you, and if you felt I did that, please accept my sincere apologies. 

 

Tarina...no apologies required! You haven't upset me at all!

I need to apologise to you...I was agreeing with you, but it came across badly.

All good, my lovely!

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Brain shutdown happens waay too often!

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Yes it does Janelle. My goal this year has been to be vocal and self protective when this happens whoever likes or doesn't like it. I say "I just hit my wall. or Ok, that's all I can do. or I can't anymore.". I don't wait for approval (BIG STEP) I just do what I need...take a rest, a nap, go into a room and shut the door, Heck I've even got in my car and left for a calmer place. Sometimes people don't like it, but I'm not there to make friends...this kind of thing is pretty much around family. 🙄 Socializing is not a usual thing for me...very rare. Besides that, socializing usually doesn't over do my brain. I pace myself easier. BTW...I think I have improved tons in this area!

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Good on you Tracy!

Being kind to ourselves is the hardest thing!

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It really has been that way Janelle. You know I feel so much better inside now that I've come to that conclusion. It's taken a lot to get here...I think I am finally getting to know myself again...I feel relief, less stressed, and I think my med for PBA (Nuedexta) has really helped me. I still have panic attacks and moments of pure chaos in my head but I am getting through these things more intact even if I can't think or feel that way at the moment. It takes me being able to look back...it's a HUGE thing. I was not in this place this time last year. 🙂

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Anyone who hasn't either had a stroke, TBI, - whatever - can't truly understand.  The same goes for any illness, etc., etc., etc.  It took me a while to "get" that.  I still have times when I need to "educate" someone on my physical, and/or emotional limitations; thankfully those times have become less and less.

 

:smile:

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