Continuing the discussion from Need a boost not getting better:
Thanks loshy . It’s good not to feel so alone. I had my stroke just before Xmas this year so it’s early days for me . Just because I can walk and talk friends say I’m back to normal . I can’t explain that I’m not and still have a way to go. I appreciate there are a lot of people worse off than me but how should I deal wx this without arguing? I’d appreciate feedback from anyone who has felt the same.
I have encountered this often and don’t think people can easily understand my condition but I have settled with expecting them to accept. I have to phrase things in terms they can relate to, for instance I let them know I get tired quickly as opposed to having neurological fatigue which is different from tiredness but they can accept tiredness. I also have to tell myself that I am the centre of my universe right now and if I need to do something my way or not do something, others have to lump it and I can’t afford to spend mental energy worrying about how they feel.
Thanks Jane . I love the pic x
Thanks rups . My sister I la said just smile, say yes then do what u need to do anyway but some people are so thick asking need they don’t notice! I’ll keep trying .
Thanks loshy I’ll keep on smiling and I’ll deffo use that pic. It’s brill x
Hello Suzywong
I have my in-laws about to descend for the Easter week. I am +6 months past my stroke. There’s no way they’ll even remotely understand my condition.
Maybe I’ll just say the topic of strokes is off, taboo, otherwise they’ll try and understand, and no doubt fail. One look at me with my walking stick will do.
What an ordeal to go through. Good luck everyone.
Ciao, Roland
@Suzywong it’s very difficult isn’t it. I have a mix of friends - some who understand & some who don’t. I’ve given up trying to explain to those that don’t & sometimes just smile & get on in my own way. I find it difficult to understand it all myself & i’m living it so guess i can’t really expect anyone who hasn’t been through it to understand. If people say you’re doing well/looking well to me i tend to reply with something like recovery is ongoing but i’m better than i was last year etc.
Ditto!
In brief, I’ve had no issues with telling folk what happened to me, but I expect them to have listened at least. Also happy to explain further parts about me - within reason - but if they need further understanding, specific details, going over it again and again or simply don’t get it… I’m just not interested and don’t need to justify myself. I’d expect the same if this was about the other person.
This reads a bit rant-ish but not my intention 
Thanks for that , love the pic. It says it all x
I agree. Best ro just say nothing
Good luck Roland.have a great easter
Oh @pando, I hope you have a better time of it than I have had with in-laws. 
Today, I opted to attempt to lift a 15kg gas bottle up a flight of stone stairs, got to the top, my vestibular system said to my brain “you are now going backwards”, I lunged forward with all my weight, hoping the weight of the gas bottle would thrust me forward as opposed to backwards and to, well, the end of my life.
This, completely, frazzled me for the rest of the day. Brain was in shock, symptoms relapsed, could not walk properly, had to consciously move my right leg forward in order to walk. Brought back a whole lot of feelings about TIA and trauma to my neck.
Here’s the rub, when explaining to in-law why I was in such a state that evening, they suggested I sought psychological counselling. Go figure. I couldn’t explain no matter how hard I tried that it was not psychological, that it was neurological.
You poor soul!what an ordeal . I hope you are now feeling better and more like your old self. I hope carrying heavy things up flights of stairs is now on back burner! Regards Suzywong
They now live with me, so I do have a little more on my plate than I would like but I have my mantra, adapt and adjust.
Yeh, its a real bummer. I’ve spoken to my GP who says he doesn’t know about strokes and to consultant who says its nothing to do with him. My friends say I look well but if I say I can’t manage something they say I’m just being grumpy. It seems people think you’re well and should be able to do all you used to, or you’re ill and should be in bed. My experience is that few read the info, not even my wife, so it feels like you are seen as a skiver/charlatan, swinging the lead.
So true!! Nobody knows how you feel inside!
Wow Rups.
what an ordeal for you, today
The reactions they had are very similar to what I am expecting.
Maybe we should try and focus more on our point of view?
I don’t really know, but I’ll have a few pointers after Easter.
They descend on me tonight ; I am bracing for impact
Take care for now ; we face considerable difficulties
Ciao, Roland
Cutler662,
It’s almost an impossible task to get people to understand
It’s disturbing to them to try and understand what life is like for us
I tell them I’m trying to make it to next month… they smile, of course
Good luck,
Roland
Over 2 years on now since my stroke and I find I don’t even try to explain anymore. I mean, why would I need to, I just let ‘me’ speak for myself! If they notice anything, if I need to rest, my leg starts dragging, speech becomes slurred or whatever, I just say “it’s just the stroke effect” and leave it that. We’ll all still get the “your looking well”, “you’re really looking great”, “how are you feeling now”…I just say “thank you, I’m fine, how are you” and move on. Because to be honest I’d rather be talking about anything else but my health, they are my break away from it all 
And I’ve been doing that from about 6mths post stroke
But I don’t need them to understand, that’s just on a need to know basis for people like doctors and fellow warriors now. And if doctors struggle to comprehend all that strokes encompass, what chance do lay people have anyway.
I have to forgive those who don’t understand what’s going on inside my head because I had no clue myself before my stroke. So who am I to expect others to understand me now. And it’s down to me to get them to appreciate who I am now and for all of us to move onwards and upwards 