hello

[Dann2]

hello, i’m still feeling very upset about my brain injury (undiagnosed), after taking roaccutane all that time ago.

i feel like ibe lost a part of myself. life’s been such a struggle since experiencing the nasty long term side effects, and i just don’t feel like myself since then, more than half a lifetime ago.

it has really affected my personality, so struggle a lot around others, adopting safety habits so as not to expose myself to others very much. i hate how i am… humiliating brain slowness, cognitive issues and pain, amongst a lot more.

Gor no one to help me really with it. self advocating for so long, i’ve given up trying to find a way to get better. i’m now 42 and my life is moving quickly past. any chance of a family is getting beyond my grasp, like everything else.

whinge over. i guess i should feel lucky i’m safe and surviving, but it’s still a real horror to feel my mind isn’t quite working as it should and the future seems quite bleak really.

[CanisLupus]

my go to saying :-

“Life isn't about waiting for the storm to pass, it's about learning to dance in the rain”

Just be in the moment, the what if’s will always pass. The moment is where you are, not the past nor the future. And smile 😊. (A smile helps you feel happy). A Few slow breaths eases the mind and body.

Now go dance.

[Teazymaid]

for completely different reasons I have a tbi that has changed me and I don’t like this new me very much . I’m coming up to 4 years with this new wonky brain and physical injuries that have changed my life .. I don’t want to be here like this but I only have one choice to make it better and that is me excepting me … councillors, reading books , talking to my family even though they have no idea what I am talking about but just explaining how I feel to them stops it being hidden .. others don’t have to understand you But saying how your feel or writing how you feel helps empty your head of the continual fight within you . Chimp paradox , A Path though The Jungle both written by Prof Steve Peters are amazing books with it without a brain injury .. and ghost in my brain ( I can’t remember the proper title sorry ) has helped me understand how totally wired brain injuries are ..

this is my take on me who dosnt like the new me very much so I’m trying to educate myself on brain injury and learning to live with this new me and excepting the new me ..

your answers are from You .. get help with depression ,speak or write how you feel and grab any opportunity to gather support and information ..

No one should be where you or any of us are but there is a pathway a lot nicer that can be found .. excepting and wanting the new you is difficult but a lot better than the anger of living with a brain damage you didn’t ask for ( me included in this)

I spent the first 3 years thinking I could win and the old me would return .. I’m know in the battle of excepting the new me .. Sue 😊

[AngelLeBuff in reply to Teazymaid]

Oh Sue! I know this feeling. I had my brain injury in1988 from an RTI when I was 28. Before the injury I was a crazy 'girl about town', clubbing, pubbing, surrounded by people who wanted my company. I was funny, bright and gorgeous. Then BAM. All over. It took a long time for me to accept the new me. And now I love me. I go to bed early (I still tire easily), I certainly don't pub or club any longer but I go to galleries and art exhibitions. Please give it time. Remember the chrysalis and the butterfly.

Get ready to spread your wings x

[haverfordwest]

Like you I struggle with my tbi, I now feel what I can only describe as "thick and stupid". I am unable to retain any information or details. It is something that I have to deal with from the time I get up to the time I go to bed. You allready realise your capabilities so now try to accept and adjust your life to make everything easier. Just do as much as you can, when you feel you are tired or struggling to think, rest for about 20 mins if your able to do more carry on, if not leave it till the next day. Just do the things you enjoy and hopefully things will improve. Remember you have to adjust to a new way of life. All the best.

[120957]

Hello dann2. I've not been on here a while as too much. I just remembered reading about your situation and it resonating as it's an extra level of insult and cruelty to be suffering and undiagnosed when you know what happened to you but doctors are not interested and happy to cover up/gaslight on drug side effects. I may be projecting, I think I remember was similar.

Anyway I just came upon a video and kind of rang a bell I think these people suffer from effects of same drug as you? Sorry if got wrong. Some of comments under video also maybe helpful. Not looked at his channel yet. Maybe some companionship and understanding there for you if been abandoned by those that caused this. Maybe something they say may resonate with you and be some small help or comfort. The medical system can be pure hell if you end up on the wrong side of it.

youtu.be/zXCISvxW72Q?si=pLB...(Not working as expected?)

Hope the link works is on a YouTube channel called 'moral medicine' posted 4 days ago.

Shared from facebook group 'stephens voice' incase interested. Looking see other support groups on there (facebook) for sufferers long term effects searching 'accutane' (and related drugs) if you on there.

Maybe you know of already. Not read all comments/posts. Or maybe too difficult to watch. Maybe at some point.

Wishing you hope and so much luck in your life and journey.

(Sorry if I don't reply any messages usually difficult to.)

[Dann2 in reply to 120957]

this is too difficult for me to watch right now, but thanks.

i’m currently having a breakdown because of how my brain feels and somehow need to try and remain positive, otherwise i’ll just sink into suicidal thoughts and desperation.

[skydivesurvivor in reply to Dann2]

Mine reminds me of my stupidity every day?!! Still smile to spite it!! Got a plate with three teeth 3 weeks back, could actually SMILE, flushed it down toilet in tissue?! Dad’s vengeance!! Flushed his away 4 years ago?!!! His Xmas present I think!! At least they’re laughing at my TBI up in heaven!! C always someone worse . Merry Xmas xx