I’m so tired of people that don’t have my injury asking me what’s wrong over and over or telling me I’m going to be fine. I don’t feel fine.
I understand that. I think its because they see us and we look fine, therefore they think we are fine, when in reality we are anything but. If these people were to spend a day with us, they would get it. Also, I have felt like certain family members don't want to think I have anything wrong with me, it is easier for them to live in denial, and that's what they do. Its an inconvenient truth.
I just realized we have a blog feature......Been a member of this community for nearly a dang year. Notta thing wrong on this end.
It’s true. I had almost 2 amazing days with analytical periods of clarity, I was multitasking, and prioritizing them and each and all were complete and all Dr appointments meant. The past 3 days…I can hardly walk, my anxiety is so high that the sounds of happy conversation make me want to crawl out of of my skin. Difficulties with my speech, disorientation… Having to ask my daughter to play in her room because I just couldn’t function at the moment. It’s debilitating. I want to go back to work so badly and the thought that I may never be able to do what I once did breaks my heart.
Yes! Strangers are rude and abrasive and family member don’t want to even try to understand when you’re symptoms are heightened. It’s brushed off and that’s a lot to shoulder or your own.
Dear God, I so know what you mean about asking daughter to play in her room. My kids are grown and gone, my husband however, loves these old black and white stupid westerns with all the shooting. It drives me nuts sometimes. I just end up going in the other room.
I totally agree about the strangers, too. There are certain stores I know longer go into, because they are crowded with rude, old ridiculous acting people. I am not young by any means, but I never realized how rude the some older people could be.
I too fully comprehend. On good days I could leap a tall building in a single bound, some think this is normal, which I wish it was, ‘cos come the following day I’m usually comatose in a dark room, unable to even lift my head without a MASSIVE headache and stumbling with each step.
Some people will tell me “Ohh you look awful…” to which I reply “You want to have a look from this side…”. Awful doesn’t even come close to expressing my levels. I have tried to explain to others just how debilitating this all is, but unless you have actually been here understanding is near on impossible. Even the damn dr’s often don’t’ get it, it’s like we choose to be in this position. Who the hell in their right mind would EVER choose this. I’ve given up on trying to get others to grasp this reality, its hard enough for me to accept, so trying to get others on this level of understanding is near on impossible. I can only thank my lucky stars for a very understanding wife and this group. We can come on here and go ‘Balllahhhh…’ and have some sort of release of all the %^&* and back pressure. It has to be released as otherwise it all builds up and can become extremely self destructive and this is a safe place to do so.
Come and talk to us, cos we know from personal experience, not a book.
Merl
I can not get in to chat. What happened to this site. I lost my account ?
I need some help here.
Thank you
Pages
Hey Pages, I’m a new moderator here and I’m having issues with it too, so I assure you, it ain’t just you. I have sent a message to one of the longer term mods with the hope that they have an answer and try to give us some clearer idea. All this change can be a bit of a challenge, bit by bit I’m picking things up. As soon as I get a response I’ll let you know and we can work it out together lol
Hey Pages,
I think (fingers crossed) I just worked it out with some help from tj1. To get into chat you need to register again with the chat. The ‘Green Space’ for us is a blue bar stating 'TBI CHAT" with a smiley face emoticon on the right hand side. One the left hand side is a ‘Options’ tab, click it and a window will open.
It has a yellow key and the words 'Login [Close]'
If you scroll down, At the bottom is a Lightbulb with 'Other options’
the 2nd tab down has ‘Signup’ Click it.
Fill out the form on the sign up page.
You’ll get an email from “Shoutbox” the chat hosts, confirm that email and you’re in.
Hope it helps
Merl
Hello Merl,
I now have no chat Tab. when I open the home page ??? I am lost on this site.
Should I close my Account and start all over ?
Hey Pages,
No, don’t be closing your account. Chat has another host called ‘Shoutbox’ that you will need to sign up to. You’ve got the first bit done as you can post on ‘Discourse’ which is the primary host for traumaticbraininjurysupport.org but unlike the former platform chat is hosted elsewhere.
There is no chat tab at the top of the page BUT if you scroll down the page, way down the page, underneath this post you’ll see a blue bar. In the middle of the blue bar it says ‘TBI Chat’ with a smiley face emoticon on the right hand side. On the left hand side is a ‘Options’ tab just below the solid blue bar, click it and a menu will drop down. Scroll to the bottom of that menu and you will see 'Other options’
As I stated above chat is hosted by an another server, so you need to go to the middle bar of ‘Other options’ the ‘Signup’ tab and go through the process of signing up with ‘Shoutbox’.
They will send you a email to confirm you are signed up like this:
“Thank you for registering at the ‘bensfriendstbi’ shoutbox. You are one step away from completing your registration. Click on the link below to confirm your registration…” and hopefully you’ll be in.
I must admit these changes are NOT easy, nor are they similar to our former site, so it takes a bit of messing around to sort out the processes. But don’t be discouraged, if I can do it anybody can. Let us know how you get on.
Merl
How long has it been since your TBI? Have you attempted to return to work?
Next time you feel like crap and are going to puke just do it. They will then understand that you feel like crap. I had to see a dentist…I wrote down all my medical problems but the idiot still did not understand till the day of my appointment I had arrived a a good hou early so i could get my pukeing over withg so the dentistry could proceed. When I was outside pukeing the dentist saw me and then his brain clicked in. I would up getting sedation to get the dental work done in Seattle.
figure out who can touch you/
Thanks, Sometimes its just nice t know we are not alone in our frustrations.
The answer is YouTube. Find the videos that explain everything and simply pass that link to people who are asking. It is not on you to educate the world about TBI and all of its details. YouTube is the modern way of providing answers and it serves TBI survivors just fine.
For example, the videos on “flooding” are priceless.
HI Crashw1 it was over a year ago. I did try to return in January and devastatingly enough, had to be pulled out of work.
Occipital, I love your handle, BTW. You tube! I never thought to even look on there for my injury! #brokenbrainproblems
Definitely checking this out now