New. Lost.

[nickijf]

Memory bad of hospital. Memory bad of coming home. Bits here and there. Like "think of Grenfell". Mum and Dad. Wake up, can't talk. But lucky me. Not Grenfell.

Extra time or brain back? Which better?

Words trapped in head. Can't out through mouth or write. So hard. Say some bits but 💭 stay in. Think hard, say more but so tireding.

Memory like holes. Time passes. 2 minutes, 2 hours, 2 days. All same. Yesterday? Last week? Don't know. Know what, not when.

Check calendar every day lots.

Numbers gone. Phone number? Don't know. Money? Don't know. Can't add. ⌚? Don't know.

Everywhere am lost. Like new place. Walk out door turn left. Turn right. Can't get back. Panic.

People talking. Can't think fast to mouth to talk with. People laughing, talking. Head goes pop pop pop. All just noise.

Ignored. Can't join in. Invisible.

But am somewhere. Can feel it. Old me, laughing, talking. Need back. Get back. Hope people wait.

Tell people or not?

Tried both.

Mixed.

Both hard.

Mostly not told. Feel invisible.

Told few. Like a leper. Apart from 1.

First outing. Not tell. Pass as normal? Anxious. Waiting get found out. Can they tell?

Second - some know. They avoid. Walk away. Look away. Same who talked before now awkward.

Want to show I'm same. Can't get thinking to mouth. Hide. Small room, person there knows. Me smile. Wanting to talk. Person leaves. Not even look me. Kick in guts.

Grateful real friends. But guilt, burden. Want give back much as take.

Things ever same as before?

[randomphantoms]

Hi nick and welcome.

Your words touch me.

How long since your injury?

I hope you can get speech therapy ,occupational therapy and neuro physiotherapy.

I lost my words and had to learn again.

Making words work was the first thing I worked on.

Your words are beautiful and powerful.

Welcome and I look forward to getting to know you .

Love n hugs

Xoxo

[nickijf in reply to randomphantoms]

Home since two weeks. 38yrs. 2 children.

That copy from blog. Took long time write.

[randomphantoms in reply to nickijf]

You are amazing!

I'm sure it took a long time and exhausted you.

You are just starting on a whole new journey and I can't imagine better motivation to improve than children.

Join in when you can but set limits for now.

[nickijf in reply to randomphantoms]

How long for words?

[randomphantoms in reply to nickijf]

You might make more progress with speech therapy but if it helps I'll tell you what I did.

First I decided that I needed to be able to talk and make myself clear.

Then I started listening collecting every word I heard.

After a couple of months I began to realise that people use lots of different words to mean the same thing.

It was then that I started filing words that were similar together.

Tried to do a crossword on a cereal packet and that took me 3 weeks and a whole lot of tantrums.

We all have some bits left from before the brain injury and my best advice is to use what works for you.

I wish I could tell you that you will be able to talk freely next week but it is a learning process.

I think you're right to focussing on one thing at a time.

Sorry this is so long but I hope it helps.

Have you got the headway leaflets? You can download them from the web page.

[AliCathy]

Please don't worry about other people's reactions. The really tough stuff, I found it almost impossible, put yourself first. I have almost five years since my brain damaging illness, things have changed - please give yourself time: accept, really hard I know, the support of those who are there for you. Receiving support from a psychologist helped me to reframe my thought processes. Take care., keep in touch - give yourself time.

[TaIaV]

Dear Nick,

I am a relative of someone with a brain injury. I am so impressed and so hopeful for you. You have managed to communicate so much and so eloquently in your post-- even with all the current constraints that you describe.

You are clearly a very insightful person and your brain is operating very well to capture the kinds of nuances that you describe in your message. That is wonderful since having valuable and correct things to communicate is the most important part of communication. I am sure that with patience and time you will regain significant capabilities.

I am very sorry that you have to go through all this. I can imagine that I would be impatient to regain all capabilities, especially with 2 children around. I know your motivation is there, and your brain capacity is high. We will be rooting for you!

[sue-66]

Very powerful and moving, what that does is help me understand my partner when he is at that stage x

[dillyd]

Get help from a speech therapist if you can.

They have worked wonders for us

The words are there, you just need help to formulate them in speech.

It's taken a long while, but my husbands speech is almost normal, just gets a bit muddled if he is over tired.

Good friends will stick by you, the others can go away!!!

Rest when you need to, your brain is having to work so hard, just to take in things that used to come naturally. Be kind to yourself & things will get easier, if not the same as before

[cat3]

Such powerful descriptions of your thoughts Nick ! No one knows how long a brain will take to heal. It depends on the type and severity of injury.

Some takes years ; some months. Every one is different. You can re-train your brain with simple, repetitive exercises every day. Crosswords, and any type of word or number games are good.

Be patient and gentle with yourself. Other people can't understand the difficulties, so often walk away through fear and ignorance. But be honest, and not afraid to ask for help from those closest to you.

Most of all, give your brain lots............lots more time to heal. Sleep is what it'll crave most as that's when most of the healing takes place.

Well done Nick on creating a beautiful, heart-rending post ; it might have been exhausting but, as an observer, I found it very moving and informative.

All best wishes for better days ahead, Love Cat x

[MaryLou13]

My heart. Your beautiful words. Keep trying. Focus on just one small thing at a time that you want to think through and carry out well until it's easy.. try to block everything out when doing this one thing. Maybe something that is part of your daily routine. Brushing teeth? Pick up toothbrush, apply toothpaste etc. Does that make sense. Focusing on one thing at a time is a strategy my husband is using. Do you have someone who could help you write or type cue cards for smaller routines? Cue cards can help cut out the 'noise' around help focus on tasks on hand. This in turn can later allow thoughts and other words back in...such as the water is cold, the toothpaste is minty. I hope this makes sense? Sending out much love x

[Hidden]

Time...

I had no memory of hospital and then it started to record but patchily. My TBI was in 1989 so I have a long term perspective which might be of interest to you! Normally we can just take our brains for granted and they operate to run the body and service the conscious brain. But ever since my TBI my brain regularly overrides my conscious mind! For example it says sleep, drink water, and I just listen and obey (on the basis that it wouldn't do this if it wasn't for the best).

All the folk moved on - my family dumped me and mine after my mum died. They won't say why. I got depressed and have been on anti-depressants for years. I adjust the dose by 1/2 pills using a pill cutter and am pretty good at getting the level right to act as a 'cushion'. Too high and I simply don't care and am cold. GPs just start you off somewhere and it takes about 6 weeks to adjust slowly to get the feel of what suits. The good thing of course is that one can attribute one's feeling to the level of anti-depressants!

I live on a hill farm so do not see many people except my young people and their friends - but I keep in touch with a few friends on FB which works well because you only go on when you feel up to it. Oh and I have three dogs that are with me when my son is working locally - two working Collies who are gorgeous and a JRTxChihuahua who is sweet but tough. It sounds as though you are meeting many new people and that must be hard.

You describe the problem when people are talking - I have this and it is called discriminatory hearing loss and is the result of brain damage. It is simply not feasible to take part in a group where many people are talking it is all gobbledegook...

So in say five years you will know how far things have got back to normal - it is impossible to predict but cooperate with your brain and it will not be too hard on you! I call it 'pulling the plug'! As for the folk who don't know what to say just let them vote with their feet. Those who have experience of head injuries will be normal.

Take care and all the best!

[nickijf]

Thank you. Read bits not all.

Tired now.

Nicki

[nickijf]

Trying to read here but hard.

Try do too much then brain disappears.

Still lonely.

Have speech therapy, think getting bit better.

But anxious about people, talking, going out.

And so tired