But you look so well!

Emotional effects Need advice
1

Hi all and seasons greetings.

I'm kind of just venting really. My stroke has left me mainly with unseen difficulty with visual processing, perception, memory etc etc. As a rather unusual side effect I have also become much more placid and chilled than previous. However I am finding it difficult to handle meeting people for the first time who are very well meaning I'm sure, but comments like 'you don't look like you've had a stroke' or 'it must have been a very small stroke' or even 'Im sure the doctors have made a mistake' are a bit difficult to handle. I'm torn between just smiling blandly and saying nothing, or wanting to give a full rundown on my problems.  Any tips anyone ? Xxx

 

2

no tips . finding it hard and lonely

3

Hi Survivor,

Others may disagree with me, but this is what I think. People are basically good & want to help. However, there is no way that others can understand how your stroke has affected you, unless you tell them. By spreading the word, people you tell, can then tell others. It can come over as a positive thing, & help educate all of us about Stroke. Depending on your individual circumstance, this could be done by yourself, or you asking another to reply on your behalf.It could be by email, text, social media, phone, note, letter, pigeon, meeting face to face. Maybe a useful thing is to create a short text covering the points you want to explain.Then you won't get exhausted rephrasing this each time. I think that most people find it helpful knowing how best to help you with such information.

4

Hi Mo, 

If you're feeling brave why not explain to them that a stroke doesn't always leave a person with visible issues.  It's these invisible ones that are more difficult to deal with and recover from.

Might be worth rehearsing a few stock replies.

Tell them about the website and it could be worth them looking up the range of problems stroke survivors can have to contend with. 

If a journey of many miles begins with the first step them educating non-stroke survivors with the first person . Good luck!

Better than thumping them! ????

Kay  

5

Oh no, sorry to hear you are down. I think that we need to keep reminding ourselves how far we have come and hope for more improvement. I am quite new to this forum and find it really good to see others who really understand . Take care xxxx

6

when all comunication is hard..

7

take it as a positive, you are lucky that you have a lot less problems than other ss's even though you are of course aware of your problems, take it as a compliment.

8

Hi Kay many thanks for words of wisdom and support. I think I am just getting to grips with the whole 'unseen disability' thing and the stereotypes I guess all of us hold. It sure is a massive adjustment and this forum is proving a great source of support xxxx 

9

Dear Mo

Very interesting post and some good replies. 

To "answer" the doubting Thomases "You cant see inside my head" is quite effective.

We do have to accept that most people can not process the idea of a long term illness. I think its in our make up to give up on someone who his still unwell after, say, three months.

I have mulled over dealing with people, and thought about it a lot. So nice to hear your views. At first I would briefly explain. But I had problems with this because I am worse some days and less worse on other days. I had an issue with the idea that, if you loose a leg then you will get sympathy and understanding. No one will say "you look better". But we have had a bit of our brains amputated and no one understands. Well, other SS understand but just about no one else. I would say "i have brain damage" and I still say that now. It doesnt sit comfortably with others, but I am brain damaged so why hide it.

So now I have concluded that I will not tell anyone else that I have had a stroke. 

Friends and family have all pretty much run for the hills. So I now try to find new friends. We are, after all, new people ourselves.

I have however, come to realize just how serious and substantial our disabilities are.

And my disabilities change constantly. My brain is trying to relearn how and what to do. It took that brain 25 years to learn first time around, so I cant expect instant relearning. 

How people cope with full time work I do not know. It is way beyond my ability. I have struggled through Christmas, accepting I am just not old me.

So I will try living as I am now. And that means not telling anyone I am a stroke survivor.

This is all very difficult and emotionally draining.

My dream is that we all go and live on the Isle of Wight. Then we would all understand each other. Malta is a fair alternative.

best wishes

Colin

 

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Generally people are well meaning, they think they are giving you encouragement. I just smile and say thank you. 

Comments like you look so well are made on their first impressions and what they can see. Of course they can’t see what is going on inside us and they don’t understand, there is no reason why they should. I have told some I’m improving and it’s all a bit boring now then changed the subject.

i had one friend who asked on a scale of 1-10 on the Richter scale how bad was your stroke?I just asked him how his blood pressure is and we changed the subject.

 

 

 

 

 

11

It's a pleasure.  I had my stroke in March of this year.  I didn't find the site until ? August.  But like you I find it invaluable.  Have a good day xx

12

Hi Django and thanks for tour thoughts. Yes I am acutely aware and constantly thankful that I have been affected less than many. I think it is about each of us as an individual and how we experience our stroke journey and I am grateful to all on this site for sharing and caring.

13

Hi. I hope today is a bit better. I know how isolating it can be. But there will be good days. There are lots of people who post in this site who have kept me going. Take care. Jx

14

Hi Mo. I’m in a similar position. I have learnt to say thank you and think positively about my progress. I must admit though it really annoys me when the drs etc say it. They should know better. 

Heres something to think about. I went back to work part time and on the last day my boss told me he thought I seemed normal. (No one would have called me normal before my stoke). I’m still chuckling. Take care. Jx  

15

Hi Mo, I totally identify with your post, it is very frustrating, when people tell you you look fineand well, and you know that you are far from fine,one our best friends told me the other day that I hadn’t had a proper stroke, unlike you though Mo one of my side effects is feeling angry, so I actually wanted to punch him !  I think I will start saying what Colin says, I have brain damage, and be truthful, but yes I agree it is hard.  Have a good day Mo. Lyn x

16

Hi, you sound really down, I do hope you start to feel better soon,I do know how you feel, it is hard and lonely and very scary at times and it is hard to be positive, but we do get good and bad days don’t we,, I had my stroke in September, and have been on this forum for a couple of months but I have found it inspirational , I hope you do too.take care  Lyn x

17

hi mo,

i'm actually quite surprised how many of you mention the stroke to others, i always thought  my health or problems with it is noone's business but mine, so, unless required i never mention my stroke and usually nobody notices it unless my speech starts to go.

18

Hi everyone, hope you all had a happy christmas without too many issues us SS have to cope with, and a Happy New Year before I forget!

I too have given up how many times people say "you look so well"  I look in the mirror and think are they seeing the same person!  I don't think I look like I did before, I look tired most of the time, where everything seems to be an effort, and to top that my hair is completely white!!!  I was not white before my stroke,  I put it down to the medication.  

So I have come to the conclusion, to also just say thank you, they mean well and I agree that because its a long term illness that you can't see people are unable to process it. Lets face it unless you've had one how would anyone know how we SS feel.

Lets hope 2019 is less stressfull for us all.  Wendy

19

Thanks Lyn stay cool ?

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Hi J that's a good one! ?