My TBI blog

[Janluxton]

Thank you to everyone that has read and commented on my blog. After being online for 5 weeks, it has just reached 2,000 views!!

I'm so happy that so many people have seen it and I hope it continues.

Thank you

doesmybrainhateme.co.uk

[Hidden]

it's a good read, well done

[Janluxton in reply to Hidden]

Thank you very much and thank you for reading

[3Rainbows]

Thank you. Seriously, thank you, thank you, thank you!

I thought I was going insane. You just can't talk to people about this stuff, hearing someone say it out loud is such a relief.

I have a variation on 11 of the 13 of your chapter eight book notes in mine too. It's soooooo exhausting trying to pretend to be "normal" all the time.

They've come up with all sorts since the RTA...PTSD, TBI, post concussive syndnrome...sure there have been more - but because they didn't agree...I chose "NONE"! I decided that I'd managed to "fix" every other problem I've ever had until the age of 41, I just had to find the way to fix this too. And it's NOT WORKING!

So much of what you say resonates, from the need to know what happened when everyone keeps telling me my brain is protecting me (nightmares every night for over two years suggest otherwise!) to being told " I don't remember what I did last week either". Arghhhh!

Not being able to concentrate on anything, not being able to stand someone talking when the tv is on, or even two people talking at the same time - it's like nails down a blackboard...why is it we suddenly hear everything separately now? Why can't the brain put it down to background noise? It's unbearable.

I can't imagine how your memory loss must affect you. I've lost the week of the accident, random things before (the odd holiday, graduation, random people, knowledge), the worst thing is not knowing what you don't know until you're hit with it; and random things since. I knew I had a problem. I would be on the phone, arrange to meet someone in half an hour, then sit down and completely forget. Or go to make a coffee and walk out of the kitchen with the kettle in my hand, before working out something was wrong, then going to put the kettle away in the fridge, before realising that wasn't quite right and looking round the kitchen to work out where a kettle would sit and then being pleased that there was a coffee waiting for me there! Today I couldn't remember how to add three things together. I'm an accountant. It's two years on from the RTA. It scares me. The blank moments when someone asks if you've had a good day and you're not quite sure what you've done until prompted. The embarrassing moment when someone asks you what you like to drink and you haven't a clue! Do I like cocktails or wine or cider? I can't work it out fast enough to look normal. It's a simple question, you can see the irritation in their faces. The words you can't recall. The things that move in the house when no-one else has been in, and however hard you try you can't remember having moved from where you're sat now.

But mainly the fact that my whole personality has changed. I might be here, but I did die in the accident that morning, and the person that resides in my body now is unknown to me! I loved the sea, she likes the sky, I loved to party, she hates being around people, I was brave and she is fearful, I was a night bird and she's a morning person...the list goes on. And she is so angry. It's terrifying having a stranger live in your body.

There are so many life changing tangible things that you have to deal with after an RTA. Struggling to work, money problems, losing most of your friends, your social life, your ability to date, lack of understanding from your family (I mean that literally, not that they don't care, just don't get it!), a dread of what the future holds. Who can you talk to about this stuff?

I thank you for taking the time to tell us your experience from the bottom of my heart.

You may have just saved my sanity.

[Janluxton in reply to 3Rainbows]

This message just made me cry!

Thank you so much, for reading and commenting.

I agreed with everything you just said and how you described it all was exact!

Nobody does talk about all this, nor are you warned about any of this.

That's why I wanted to write this, to help me and so others (like you) can read and relate to it. So we know that we are not alone.

It's so horrible to feel certain things and feel like you are the only one experiencing it. So I thank you for telling me a bit more about you and your problems, I agree with all what you say and it's horrible that you experience this as I do but I get some comfort knowing I'm not on my own.

Again, thank you for reading and your lovely message. Your words mean a lot to me.

The next chapter will be coming soon x

[MXman]

Just reading this thread and read some of the chapters in your blog Jan very true and why o why does it happen. My brain hates me too. Ill read the rest of the chapters later today.

Know one not even my family know really how I feel sometimes. What gets me ind the personality changes too, sometimes I just don't care when I'm talking to people and don't want to listen or take in what they are talking about. I can stop them in mid conversation and say sorry not being rude but I'm not interested in what you are saying and then leave.... Never used to do this.

I can talk about it here and everyone understands me, well I think they do. Really hope you have a peaceful Sunday. XX N

[aqua4 in reply to MXman]

Hi Mx.

My reply applies to you too.

Only saw yours after sent. Hope makes sense. K

[Janluxton in reply to MXman]

Thank you MXman. I get this! Just not being interested in what people are saying. You start to figure out who and what you find the most important!

I wrote this for a few reasons but one of them being so family and friends could read it and get some sort of idea of what I go through and how I feel. It's not something I want to bring up all the time and keep banging on about it.

Maybe one day our brains will stop hating us! I hope so anyway.

Thank you for taking the time to read and for commenting.

Enjoy your day x

[aqua4]

Hi Jan and 3 rainbows.

Not read it all yet but wanted to say.

You have both put it perfectly.

just exactly how it is In your own words.

The little everyday things that for use are huge.

On top of the huge things!

Its like a relief to read and think It's not just me.

Thank you both. Keep sharing. K

[Janluxton in reply to aqua4]

Thank you Aqua.

These things need to be spoken about, then people don't feel so alone, they realise they are not the only one feeling certain things.

You are right, the small everyday things that people take for granted are a struggle. I constantly compare them to how I used to react or do things which makes things worse.

A lot of people don't realise what you have to go through or the problems you have, but it's easy to appear 'normal' when you only see people every so often! Try living with me!!

Thank you for reading and for commenting xx

[SAMBS]

I did read it, it made my cry because I realised I knew little of what was done to me or of most days in hospital. I remember my husband visiting 2 x I remember vividly everything g till I arrived at 1st hospital but woke up in diff one about 5 days later when I came out of coma. if I lived nearer where it left happened I would go and find out. I did email you but dnt see I got a reply. Or else I'm thinking of someone else and a different blog. I'm pleased you were able to find out so much and with all the replies you got. S x

[Janluxton in reply to SAMBS]

Hi SAMBS.

I have been having trouble with my emails not coming through or going to junk folder. Let me have a look and when I see it, I will email back. Sorry, I wouldn't have ignored an email.

The joys of technology! x

[Lazuli]

Jan, thank you so much for sharing your blog. As a carer who witnesses the effects of BI from the outside and who frequently feels quite helpless, it is so enlightening and encouraging to read personal stories such as yours (and the wonderfully descriptive post above by 3Rainbows).

[Janluxton in reply to Lazuli]

Thank you Lazuli for taking the time to read it and for your lovely comments, that means a lot.

x