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How do we get family to understand what we really don't ourselves?

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Having a really tough day. I'm over 4 years out from my MAJOR 7cm bleed. Still no job, still lots of mood swings where I feel out of control, my family still complains about how hard this is on them...husband and an 18 and 16 yr olds!

what do you do to turn a bad day around? How do we ever explain how very difficult this journey is to family? No one can understand unless they've been thru it, and I don't want my family members to ever go through this!

i just need something to make my life seem worthwhile again. 

I can't work as an EMT anymore, so I'm going to start volunteering at a local hospice. I'm also trying to raise money for a missions trip, but everyone seems to want to tell me what I can and can't do. As far as I'm concerned, I have a second chance and don't want to waste my life living in "what if's?"

Thd Sky is the limit as far as I'm concerned...my Sky, my limit!

thanks for reading this!


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Hi Mandie,

Welcome to BTG.  I am so sorry you are having a tough day.  I don't know how to explain it to anyone....but I do think the people who love us try and I think their frustration perhaps is as difficult as our own.  I am happy you found this site, plenty of us here that understand. I have found this site to be a comforting place to come for understanding and encouragement.  

I hear in your writing you are searching for the thing that will make life seem worthwhile again.  The sky is the limit...You have great strength and ambition.  I have found in the midst of feeling strong and ambitious I have times of feeling the loss of my old self.  I don't know if it goes away but I know I am lucky and want to keep moving on enjoying this life.

I hope tomorrow is a better brighter day for you Mandie.  you are so right your sky your limit...


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Hi Mandy.


Support and understanding from family members is harder than from friends and colleagues.


Family see you every day and see you dealing with things differently. One of the easiest ways to show family how hard it is for you is to let them read some of our stories on BTG...


There is a great video, explaining with words and pictures of your concerns. I found it a few years ago and have a copy. Its freely available to view by the way. 


Secondly, now people see us busy, trying hard and doing relatively normal things, don't see the internal strife that we suffer. It can be found here 



I hope it helps your loved ones understand better?


As an EMT your knowledge of life saving techniques is invaluable. Have you looked in to becoming an instructor for this?


Look at giving demonstrations with employers/ees so they know the basics, adding information about strokes, how to know what to say, do or how you can help?


This isn't limited to this either! Support groups of most kinds, or ideas similar to this?...


I use this video to show what difficulties that I may have, I also am very open with my emotions and feelings.


I talk about my condition finally I ask them what they feel is right or wrong too...


Here is a link to lots of useful information that may help as well, if they read the fact sheets.



I'll drop by to read any responses...



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Welcome to BTG. I think you can have your doctor or nurse explain to your family or give the family some info to read but sometimes it might not still work. Tell them your brain had an injury and it s not the same.

You will see that some of these posts are very helpful esp by macca, subzero, daffodil etc etc. We cannot give medical advice but take your time and read some posts and they are very informative. Goodluck. 

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Hi, I’d ask them to watch this video I shared , wish I’d found it early on . My daughters are bit younger than yours but I do think  it’s normal for them to go through adjustment too, you are not the mum they once knew, th8ngs did change, equally you need to be kind to yourself and give yourself space to continue to heal cos have no doubt it goes on and on.


Talking is key. Tell them how you feel, talk about what has changed, talk about what you wish could change and maybe plan some things together . They sound concerned for you to be honest so maybe all agree some ‘rules’ for everyone on how you engage. So a listening to each other’s concerns for instance...a big one in my house is not laughing when I make really forgetful errors no matter how funny they may be( well unless I am laughing too that is) , I find it hurtful . 


It takes time to find your new rhythm, things that make you smile as the old stuff doesn’t hit the spot in quite the same way. Invite them to join you as you explore what makes you laugh and smile. Be curious together. 


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Hi Mandie,


I cannot do a lot before I get backache and then I need a sit down...My  aim might seem daft but it is to walk around a supermarket and choose the stuff I want!! 


Fed up with being told "Win we don't need anymore of those"  Well shut my mouth lol !!  <~~me taking of Stan Laurel.


I love to be happy but there are days when I want to just be left alone as they don't listen.  I sound like I am moaning but without my Family being in my corner (Boxing talk ha) I would have been put in a home ...I had hydrocephalus and was talking to my Family who passed on.


This site is a good place to come on and give vent and others have been through similar.  Cheer up and I sang a lot ..poor family and l always think of my Mum as she bought me so much laughter in my life ..see laughing about her already.  As you say your aim and your sky..We are Survivors albeit  slightly different with our brains and our tears, so think what you want.  It helps having this site, hope you find your sky and your aim xxxxx 


Win xxxx

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