Is this normal ...: So as everyone know my STBI was... - Headway

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Is this normal ...

bexx87 profile image
7 Replies

So as everyone know my STBI was 17 years ago and I was raised to not let my BI effect me and not view myself as disabled so to be the same like the rest of society and not sponge of the government (but work for them instead) hence why I was able to go to college (even though I did get disability assistance for classes) , get a normal full time job, learn how to drive, live on my own ect ect so because of this I class myself as not disabled (and I don't receive any support only in work with work related stuff) so when I am around other people with BI I find it very tiring to be around and I don't know why (and I find being social in general tiring) and I don't really associated myself having a BI so I don't know if this has left me ignoring unresolved issues that I am unaware about I guess its due to the fact that I haven't accepted having a BI and I have been allowed to accept have a BI

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bexx87
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7 Replies
RogerCMerriman profile image
RogerCMerriman

Speech/communication impairments which are common with brain injuries, and are tiring to decode.

I love speaking to other folks but I do find it exhausting, I went to Headways conference and together with lots of people talking, and being new it was shattering!

I was dyslexic pre, so have always been different I guess. Do I consider myself disabled? realistically yes even if i'm high functioning. But it's about not being defined just by your labels.

For myself i'm interested in history/science and cycling, mountain biking mostly.

paxo05 profile image
paxo05

Order has hit it right on the head...Sorry for the pun.....A bi makes concentration , speech and basic living more tiring.

Do I class myself as disabled...Finally yes..But reluctantly. I feared acceptance would make it impossible to find paid work.

Maybe it did but maybe the fatigue and not been able to keep pace with a work load was probably the main factor.

Do I wish I wasn't disabled. .Bloody right I would...But I am and that's it.

It's not all I am. Hopefully havIng a bi is only one part of me and not everything I have to offer.

If you think about it we are all disabled in some way. I dont think there's anyone who can do everything. That said then there is something that each of us cannot do ...so therefore they are disabled in some way.

Maybe it's the word " disabled" that is non impowering. Maybe we should be classed as " partly unabled" as there are things we may be unable to do.

It's a strange one. We try and try to be as independent as possible but then have to constantly prove our disability for any help or assistance we may need.

If you find a solution please let me know.

Pax

lcd8 profile image
lcd8

Hi Bexx. Like you I have always tried to live my life as if there is nothing wrong with me. I work full-time, drive, have a family etc as well. Although I was always aware of my 'disability' I never really thought of myself as disabled. Because I suffer few deficit on a daily basis maybe I didn't want to admit to myself that I was different. However I do get fatigued, have trouble with balance and after a stroke mimic last year linked to my BI I felt I was forced to admit the reality to myself.

Elenor3 profile image
Elenor3

Hi bexx, I can see where yiure coming from. I understand what you say about not being allowed to Be disabled when you were young. It seems common that families struggle to cope with someone who looks and pretty we'll sounds like their pre BI self. The longer it goes in, people get used to the new you....an they consider you well despite your struggles. It seems to me that some people want you so badly to be well,my hat chant understand that you still have problems related to your injury even years down the line. There are many posts here where people mention not having their TBI issues properly understood. In my own case, I don't think I'm disabled dispite the things I can no longer do and the thungs that are problematic that's weren't problematic before the TBI, it's other people that think I am. It's often other people and external interactions that cause the problems to be visible. If I lived alone on a little island I'd probably not encounter many issues - but life would be very boring. Everyday presnts it's own set of new and interesting challenges now. It's very exhausting some days, but no two days are ever the same and there's something to be said for that.

johnny1963 profile image
johnny1963

hi bexx,

I'm John. I'm in the same situation as yourself. I was 13 when I had my RTA. I'm 54 now.

it seems that brain injury treatment has come way since I was in a coma. all those years before. if only they knew then what they know now.

if you wish to start a discussion I'd be happy to talk. I've had an eventful life. but I've always felt like the leaf floating down a stream, not the salmon swimming up. a terrible analogy but its late. forgive me.

thanks for reminding me I'm not alone.

john

bexx87 profile image
bexx87 in reply to johnny1963

I got asked by people who are 3-5 years into their journey who are in their early 20s and 30s if it gets any better and I had to answer no it doesn't it just gets harder to manage as your body gets older but specialists have said if I had it now the story would be different its but because I had it when my brain was still spongy that its managed to adapt to the injury which is why I am able to have a normal life but I still have my moments and the depression and anxiety will never go no matter how many drugs (prescribed by dr) I take and I get envious about other people as they receive the help I never did but they still complain which grinds my gears and I have met people who had their tbi when their were 19 and there are now late 30's and (not trying to be mean to them) they act like it happened yesterday not 15 years which puts having it in my early teens into perspective if I did have it later in life but you right it does feel nice to meet other people I was so relieved when I started going to Headway because for years I thought I was the only person so I have realised as Ive gotten older everything not just my tbi Im going though millions have gone though it and are going through it now

headway.org.uk/about-brain-...

johnny1963 profile image
johnny1963

Thanks for your reply. In my case,it does get easier to manage. I do take the usual medications but I've dealt with a lot in my life. Positive thinking helps. Ignore those that put you in a depressed state. You'll meet them but let them stay at a distance in your life. At work and life there are the moaners. Let them moan. It keeps them happy. Just concentrate on yourself. What makes you happy. It may take a while to find. And while you look, tell yourself you'll enjoy the journey. Because life is a journey. Not a destination. Again thanks for the reply.

John

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