"You don't look like you've had a stroke"

When I was admitted and given thromolysis for a cerebral infarction/posterioral stroke, I was terrified…putting it mildly.
Because of a major allergic reaction to asprin, which came on 4 days after being home, I don’t think I have actually processed anything.
I met a neighbour who said “Mrs X said you had a stroke, you don’t look like you’ve had a stroke”.
I could have cried but held off til I got indoors, just because I look ok, doesn’t mean I feel ok. I am very fortunate to be able to use all my limbs/digits but have issues like most with my shoulders., Fatigue is immense, I am forcing myself to eat as everything tastes disgusting, and I cannot stand noise. I have panic moments when I can’t remember where i put my mobile phone, as it was myself who dialled 999 when I hit the floor as stroke took hold. Not expecting any replies to this just need to get it off my chest before I try and settle for the night. Di

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@Dido14 sleep well. I can relate to the fatigue. I went through two bouts. Fatigue doesn’t really cover it. It’s worse than that.:face_with_raised_eyebrow::face_with_raised_eyebrow: Good to get things off your chest @IanM

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You’re not alone, many of us, including me, do not, from all outward appearances, appear to have brain damage, but it’s the particulars that are so meaningful to our daily needs. I do use a cane but I can walk without it if needs be, well, I sort of hobble, but even so, people might think I just have an issue with my leg or foot. I am direct about it to others because as I have written on the forum before, if one suffers from depression, we don’t expect that person to be looking gloomy all the time and bemoaning “woe is me”. A brain affliction doesn’t show because it is not visible, it’s hidden behind our ever accommodating visage which will try its best not to burden others with how we are feeling, but how we are feeling is not just important to ourselves, it is important to others, so that we can have the necessary support we need.

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Without doubt the most used and the most useless phrase. I think we should start a conspiracy/ game with those ‘vocal useless’ indivduals? I wade through 15 drugs a day but i need to go back to the doctor and ask them what they prescribe for that comment… sorry i am also fed up with it except i am glad to hear that i am not the only 1.
Now you know your neighbour, now pay her no more attention. Make the police in your area know, in fact they should and start to enjoy the more happier messages about doing your garden, going for walks and other stuff written here, it’s what and where you are now.

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Hello @Dido14
Welcome to a forum sorry you have had reason to join us

The ”you look well" phrases impacts have been discussed many times on here. If you search with the magnifying glass you’ll find the number of discussions about it.

I normally reply " thank you I am well but I am permanently damaged in ways that you can’t see that I consciously live with limiting impacts every moment of the day. For example I have to think of the placement of my foot on every step" and many variations on the same theme

The idea that you can return to work within 3 weeks may need some adjustment. It would be a rare event within the community here, but Not unknown. Since you mentioned fatigue I would suggest any return was phased but I’m surprised that it’s being talked about for anywhere in the first few months.

Stroke time scales for recovery are described in the welcome post along with many other things that you may or may not be aware of.

Caio
Simon

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Hello, Dido @Dido14

I scored 26 / 42 on NIH stroke-severity scale
I can walk a short distance with a stick ; my walking looks like a major struggle
My in-laws say “nothing wrong with your brain, you’ve just lost a bit of mobility”
They don’t know what a stroke is, obviously
Nor do they / most people know the brain is used to control our body !

Good luck, Roland

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@Dido14 it can be frustrating when people say that. I don’t think they mean any harm. I think they expect people who have had strokes to look a particular way. Until you’ve had a stroke you don’t realise how many different ways it can affect you.

I usually just say thank you & move on. If i know people better I might tell them through the course of a conversation how i have been impacted.

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This has got to be part of the reason for feeling tired after a stroke ? You burn brain fuel doing activities which previously required no conscious thought ?

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You have just survived a major life threatening trauma,

Initial reactions to trauma can include exhaustion, confusion, sadness, anxiety, agitation, numbness, dissociation, confusion, physical arousal, and blunted affect.

Understanding the Impact of Trauma - NCBI

National Institutes of Health (NIH) (.gov)
https://www.ncbi.nlm.nih.gov › books › NBK207191
(Understanding the Impact of Trauma - Trauma-Informed Care in Behavioral Health Services - NCBI Bookshelf)

And that is where you are at right now. Naturally you are still in shock and your emotions are going to be all over the place, from immense euphoria to crying at the drop of a hat. Someone only had to ask me how I was doing and I’d start blubbering or be irritated/exasperated by the question :blush: We’ve all been through it here and it should calm down over the coming weeks.

The fatigue is immense because your brain is working hard to heal and repair itself…forcing you to shut down so it can do its job :wink: It needs frequent rest throughout the day, so give in to it as fighting it is more likely to slow down recovery. Fatigue can still plague some a few years on, others not so much, as is the case for me now; and you are still early days post stroke.

And as for the “Mrs X said you had a stroke, you don’t look like you’ve had a stroke”, that’s your cue to enlighten them should you wish :wink:
I dare say many of us were equally as ignorant pre-stroke. I may have come out with something equally as trite, in my ignorance, to fill in the silence. People do that when they don’t know a person all that well but feel the need to comment or compliment on their recovery in some way or other. It’s the continual enquiry months down the line when it starts to get really tedious :persevere:

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Thanks for responding, and yes under strict instructions from hubby to phase in my return to work.As I left hospital without any major items logged as being current post stroke, my GP agreed to sign me off from 1 May until this week, but only noted on the Fit Note that I had a bad allergic reaction to asprin. No mention of the stroke at all.
I will have to see how it goes, especially as mostly computer based, and heavy on figures.
Today was a good day, but I am discovering more and more things that are not quite right. Thankfully I found this group and can take some relief that the things I am feeling/experiencing are not unusual.
I think of myself as usually pretty switched on, but with no guidance do I just keep a diary of things ie today - thought I had planted my left foot on the bottom stair, but I hadn’t quite, so small tumble.

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Hi
A dairy is a common tool for detecting effects and plausible causes. Fatigue is often a theme with these sorts of analysis data gathering.
Triggers can be combinations of sleep, hydration, screen time, nose lights people, time of day, position of the moon :)?.. And the fatigue can feel different.

Caio
Simon

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@Dido14 I’m
Sorry to read your post and completely relate to it, I could scream when people say I look well as I regained use of arm, leg , mouth fairly well, they think that’s it!
But I have terrible fatigue and food tastes horrible so I’m losing weight too. So many different problems after stroke it’s frustrating that they are less known, people only know of the one side weakness problems. Best of luck for some progress. Sending best wishes.

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Fatigue - lots of it after a stroke 4 years ago and 4 TIAs since! I look normal and try and push myself but this head fog and tiredness catches up! But I’m not going to let it beat me!

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I am sorry you have need to be here, but so happy you found us. This group has been a godsend to me, and I hope it and expect it will be helpful to you as well.

This comment has not bothered me much, because I was trying to be the person I ‘was’. It would definitely bother me more now. I have , at times, become a bit sarcastic or manipulative, depending on what the situation calls for.

So to someone who is generally uncomplimentary, or only concerned with themselves, I will manipulate them into listening to all of my health issues just to aggravate them. And I will not leave a breath in between. They brought up the subject after all, so they must have wanted to know all the details, right?

To those who I know mean well, I respond with, “Thank you, I did my hair today.” And for those who I don’t want to waste a minute of time on, it’s “Well, Bless your heart, I’ll be sure and let my surgeons know you admire their work. Would you like their contact information?”

It more for my own benefit to laugh, than it is to actually hurt someone else, but mostly makes them think a bit.

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If I truly wanted to be facetious, I would tell them they don’t look as ignorant as they sound.

Had awhile to think about that. Perhaps it is not in my best interest to speak on certain occasions.

I did want to empathize with the real fear of this happening again, and to address the noise factor.

It is not at all unusual to have a fear of repeat. I beg you to look into ways to relieve yourself of as much stress as possible. I had to wear a very small pocket sized purse on a string around my neck for awhile to hold my phone in, as I fell just about any time I didn’t have it near enough to reach, if I even knew where it was. I am better at having it now, but not so worried I will actually need it. It took a while to get to that point, though. I think we have all been there. Hard to tell yourself you are okay when you wonder if every small pain or headache, or forgotten word is a sign of new distress coming on.

2.5 years on and noise, lights, patterns and things moving around me still get to me, but not nearly as much, and mostly unexpected ones now. I can attend a basketball game, which is very loud, but by expecting it, I deal with it much better.

And the fatigue… well, that is just overwhelming, but gets better as you learn how often you need to rest, what things cause you to need rest, and are able to sleep well when you are resting. I thought all of my fatigue was from stroke, but a couple of my doctors didn’t think I wanted to work at getting better. Hopefully others overruled them because they saw my progress.

I was just released from hospital where they found an underlying problem that was contributing to that fatigue as well as to my sleep issues, and going backward in my recovery after all this time. I am feeling much better now. My brain isn’t so foggy, slept like a baby since new medicines for the real issue, and could walk well and even dance around a bit today. Have been struggling with those things for the past 6 months. I wish I had known earlier. Everything may not be stroke related, but very many things are. The best advisement I have had experience with was from @Emerald Eyes, who encouraged me to look at myself as a baby, learning to do things. (You may not be in baby stages, nor was I at the time). But we clap and smile, laugh and encourage when we see a young child learning, no matter how many times they get it wrong, before succeeding. But we do succeed in finding our way, either back to our previous abilities, or to new ones. You will never be the same person again, simply because of what you have experienced, but that does not mean you won’t be able, or happy, or less of a person. You matter, NOW, today, just as you are, as much as you mattered before, and will matter as you recover, or reinvent yourself.

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I look ok to anyone looking at me as I can move etc but it impacted my speech with dysarthria and impacted some fine motor skills like writing.

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This might be a different way of looking at this but given all the possible outcomes, some pretty grave, this is actually a good thing. Physically you have come out of it really well, celebrate that, enjoy it, feel good about it.

Rather than it being something that annoys you and perhaps increases those hidden difficulties, flip it round. Use the good feeling to tackle the other items.

Yes the damage is hidden to the naked eye, brain fog is,pain is, noise sensitivity is, all sorts of diseases are.

Yesterday I saw my brain scan for the first time. Found it fascinating.
The consultant told me that from looking at just the scan, he would expect me to have very little movement.
Perhaps he could have said “you don’t look like you have had the stroke you have had”

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I can identify with this, I had a stroke in my brainstem in Dec 2022. People often say ‘you dont look like you had a stroke’. The fear and fatigue is real and no one understands unless it has happened to them or have witnessed it. I still suffer from fatigue and as I live on my own I am also obsessed with keeping my phone nearby. I have been having further stroke like episodes over the last year and have been reassured Im not having a stroke but have yet to get a diagnosis or reason for them. Dont worry about what others say/think it isnt their life. This site is full of lovely people who understand and have a wealth of knowledge and support. Take very good care of yourself, best wishes Karen x

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Hi I had my stroke 9 months ago on my birthday! Since that time I’ve been unable to swallow. So I’m on a PEG and take Soya feed, water and my medication directly into my stomach. I was in hospital for 62 days unable to move, now I can walk about my house with a frame. I only have carers in the morning to give my wife a break. I’ve just had a 4 day break in the Cotswolds. My wife has kept me going by constantly reminding me that at least I’m alive! I attend Stroke Association zoom meetings, I have 2 respite sittings per week so my wife can go out. My wife still keeps in touch everyday with fellow visitors from the hospital.
Life is what you make it. It’s very easy for the darkness to descend. Always look on the bright side. I genuinely look forward to things now. I am, after all, only 63 years old!

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speech is ok, writing I had not really done any til today, my usually remarked on neat and tidy writing looks like I am just learning to do joined up writing. Also i am writing very large letters.

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