My experience of TBI

This is my first day on here and Headway directed me here. I have been writing about my journey and experience of Traumatic Brain Injury to help myself and others. Headway advised that I share it on here, it is-

doesmybrainhateme.co.uk

Please have a read and see what you think, it's all quite new to me still as not even 2 years since my accident. I'll look forward to reading the posts on here and finding out more on what this is all about.

Jan

13 Replies

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  • Hi Jan

    Welcome to the forum. I am sure you will find it helpful and supportive as I think I have enthusiastically mentioned to you previously.

    I have read Jan's blog and it is very open and honest with no holding back on her experience and subsequent difficulties. I would encourage others on here to have a read of it. Jan has like most of us with a BI been through a difficult trauma. Some of what she wrote touched a sensitive 'nerve' in me too as I could relate to things too because of my own bi experience.

    Great that you've join us Jan x

  • Welcome indeed! wow you have been through it! and so glad you found headway,they are awesome,iam a non b,i er! my hubby had a.b,i nine months ago,

  • Hope your hubby is doing ok. Thank you for reading x

  • Thank you x

    I finally decided to join on here, it looks like a really great place to come x

  • An open and honest from the heart read. Thankyou.

  • Thank you for the kind message and thank you for reading

  • Wooh! Makes me glad my BI was aquired over a period of, now that I know the signs, probably 5-6 years (I have low grade but stable tumour of the left medial temporal lobe - down in the middle somewhere and a bit to the left). Despite raidiological stability the effects are constanly increasing in severity but oh so so very slowly that it often isn't until I look back that I can see the changes and what my family tell me.

    I can't imagine what you have gone through and certainly don't want to experience it to find out.

    An inspiring, honest and well writen diary of your experiences.

  • Thank you so much for reading and for your kind comments.

    Sorry to hear that you have a BI and I really hope you are doing ok and will keep doing well.

  • Thank you for your generous thoughts.

    I'm doing OK, think my bizzare sense of humour helps, certainly in masking my problems from others.

    I sometimes find it hard to cope with the losses, driving and other pastimes I used to enjoy and the thought of an in-operable time bomb sat there in the head jelly can be wearing to say the least but I try had not to dwell on those things, instead finding other things to occupy me. Adult colouring is strangely all absorbing and I'm trying hard to re-learn my guitar playing skills, not too succesfully, but it's a challenge with pleasure acheiving even small sucesses.

    Take care

    Geoff

  • I agree with the sense of humour, I do the same. If you laugh, everything is 'ok'. People say 'I don't know how you do it' or 'you are doing well'.

    We don't have a choice! This is real, we live with it so not a lot else we can do.

    I agree with loss of interest/enjoyment with things we used to like, I have the same which is frustrating. So learning new things is a challenge but rewarding. I used to make basic cupcakes but now I'm looking into courses to learn techniques so I can eventually make wedding cakes etc. This will be hard work but make me feel like I'm achieving something.

    Someone mentioned the colouring to me, might give it a go.

    Good luck with the guitar! Britains got talent next?! ;)

  • I've improved my cooking skils too.... I now know how to open the microweave door and how to find stuff in the freezer :-) Actually I have made a few bits n peices a fruitcake (no not me a cake) that whent down well and simple stuff like sweet n sour from scratch, lasagne, cottage pie, chicken supreme etc. All simple stuff but FAR better than my old throw it in the fry pan and remove before black... just!

    Good luck with the coking and touche Great British Bake Off? ;-)

    Musically I started off as a drummer, got fed up with the amount of gear I had to carry and took up guitar, got reasonably proficient as a rythm guitarist with over 100 tunes under the beltn Ow unable to play drums and guitar two songs and a few nice chord sequences and they challenge me to the extreme but no pain no gain.

  • you're doing well this far Jan, I lost the Canderel for my weetabix the other morning, I always keep it in the same place, well I do.only use it once a day, after a very long search, kept checking the same cupboard over and over, in the end thought well I'll have to go without and just have milk, that's when I found it, on the top shelf of the fridge!

    I didn't remember. putting it there, but I did laugh at myself and called me some unrepeatable names because I'd wasted so much time looking :-)) teehee, Shirley.

  • Hi Jan

    Just read your blog and was nodding at everything you said. I have lived with an ABI since 2001'and for my family its something that happened , was horrible, but is all over now and part of family history

    It is my daily reality and I cope, yes, I look after 2 girls alone, have a job and run the home, alone. Those who knew me before the ABI either gave up trying to stay in touch because I was not the same (well obviously I wasnt) or dont want to talk about it and raise their eyebrows when I use that as a reason for something. Oh,your boring BI, thats so long ago, you`re better now. They just dont get it and never will. I have fantastic fun at work, where I am just me and nobody judges, or compares me to the `old` me. So much easier to be me, whoever that is now. It has been hellish but I am on calm waters now and have fought to find a kind of peace in myself, accepting that this is the new me, a hidden but permanant brain injury. I like me, I am the one who lives with me. I have had no help, no psychological support and am made to feel guilty or unappreciative if I ask for help with the tiniest thing. So, BI folk, we need to stick together and fight on. We are all obviously tough cookies or we would have collapsed into soggy mush by now. Thanks for your post, Jan and everyone who posts or visits here is a star. We `get`it, nobody else ever will but if we all push and stay honest, having a BI might be more understood and life may get easier for those who have one.

    In the meantime, we bite our lip when someone says something stupid or cruel, we look at our lists, square our shoulders and step out for yet another day. Its exhausting, its annoying and its frightening but hey, we are all winners.so two fingers up to the rest of them. Best wishes to all with a BI, we are all unique but we have this one thing in common, our bewildering, frustrating and mysterious broken old brains. Hope today will be a good one for everybody. One day at a time, thats all we can do xx

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