TBI. I have overcome any trauma in my life and yet I can not beat this!

[superstar79]

Hi. I am new on here! In 2009 I was mugged and attacked and it left me with a TBI. I had bleeding and swelling on the brain which was missed on my first MRI. Having been through years of being misdiagnosed and not being listened too, my treatment has been delayed at every stage. I am permanently disabled now and can never work again!

My day revolves around controlling pain or more hiding it as I am too stubborn to ever give up! When turned upside down I am like a rain maker with the amount of medication that I take, just so that I can keep some of my independence! Even though that involves being cared for. When I had spent my career caring for others within a residential setting. I loved my work and miss it so much!

My brain has been damaged and it will not heal. No surgery was ever carried. To this day they are still finding injuries to my face and neck that were missed in 2009. This is not a “sob story” by any means, I am simply just wondering if anyone else has been through a similar situation! My brain no longer communicates with my limbs properly and they shake randomly. When I walk my head bobs from side to side and I need a walking stick. Looking at the side effects of a TBI I basically have most of them. Along with others not listed. I have been told so many times that I must accept who I am now, yet I am constantly looking for ways to fix myself and be who I was before! Which usually ends up with me injuring myself!

Apologies if anyone actually read all of this. I am not one for self pity and am truly grateful and fortunate for everything that I have but it does not mean that I don’t miss all that I have lost! I have a roof over our heads, food in the cupboards and happy and healthy children. Which is far more than many people in this world have.

[Hidden]

Hi there, welcome, I hope this site is as helpful as it is for me. I can relate to alot of what you have said, I too am sort of up on the hill now watching the usual life running it's track with no regard to anything else. Friends and a happy comforting social life, I can now just imagine. I of course lament my old life and who I was, almost every day. My future has changed completely so I feel I need to think of - imagine - a new future which includes happiness and great relations. I am aiming for that anyway, it's hard. I mean, I lost about a terabyte of music recently, I have been collecting music over the decades, I stupidly thought I would hide it somewhere safe and remember where that is, but now it is gone. Ill try collect that back.

[superstar79 in reply to Hidden]

Hi. Thank you for your reply. I have good intentions of getting my life together! Trying to find some sort way of fitting all the now missing pieces of my complex puzzle into a new picture. So to speak! I have so much to be thankful for and appreciate all that I have! Yet it’s not enough for me to find what I truly need!

The thought of finding love again is something that I honestly can not Visualise, I am not who I once was physically and mentally. The old me feels as though it’s locked deep inside of me and screaming to be let free!

The thing with time slipping away from me is so surreal and it’s not something that I can control no matter how hard I try. For instance, Monday will begin and I will be following my memory board and doing the limited daily tasks that I can still do……at a much slower pace! Then before I know it’s Friday again and I am wondering where the week went.

So, all of my good intentions are trapped inside this bubble at home!

My memories are fading faster than I expected and it will only get worse I have been told by my consultants!

The safe places you mentioned are totally relatable! I have plenty of those and forget where they are all the time! Usually I will eventually find what I was looking for some months later….. hopefully you will find your lost music and have some comfort in it again.

[Hidden in reply to superstar79]

Yeah I started a project about 3 years ago which I haven't even completed the first simple phase. I just go for a walk. Things seem to take forever.

[superstar79 in reply to Hidden]

Everything that I do requires reminders. My phone is forever bleeding and reminding me to do one thing or another. I have thought about loosing my phone just to shut it up! 😁I used to love walking for miles be in at work constantly on my feet or for leisure. Now I need someone with me when I go out….to stop me from falling into hedges! 🙈 My TBI has left me with an unusual gait and I need my stick. Everyday I walk into something or other and collect another bruise! 🙄🙈

[Hidden in reply to superstar79]

😂😅

[Hidden in reply to superstar79]

I would have been able to get a basic prototype for this project done in about a week back when I was at work. Nowadays things just seem impossible to me, I just don't have the belief or drive anymore.

[superstar79 in reply to Hidden]

It’s all totally surreal that this is actually who I am now! Acceptance is not something that I can get my head around! I am always pushing myself to do more and am like a mad scientist trying to work out how to fix it! 👩‍🔬 🤔🤷‍♀️ Afterwards I get even more confused or my brain decides to visit another planet! 🙈

[Pairofboots]

Hi, welcome to the forum. Hope you find some answers to the questions you never knew to ask. This is a safe place. People give advice from their own experience, none are wrong, and none are right. Anything that clicks always chat with the "professionals" before trying. Many will suggest Headway, they offer day services, and have a wealth of knowledge to share. Their contact details are pinned to this page.

Many think that acceptance is giving up. It is not, it is accepting that you recognise where you are coming from. Everything has to have a starting point, the beginning of a journey. But this journey doesn't have a map or a sat nav. It also has no wrong turns, no cul-de-sacs, no dead ends. It does have diversions, and traffic jams. It can be frustrating. It can often feel like you travel alone. You have found this community, and we as a collective, BI, or carer will be here, as you will be for others.

I wish you well 🍀

[superstar79 in reply to Pairofboots]

Thank you. I went to a Headway day centre many years ago for an assessment and they thought that it would not be the right environment for me. As in being there would cause me more pain and frustration. I have never been on a site like this one, discussing my conditions. It’s not what I expected, in a good way!