Phsycologist

[Bowler2012]

Hi ,8 years on since my SAH and now starting yet another course of session with a phsycologist for cbt, I still get very tearful but don't know why,can't stand loud noisy environments even when grandkids visit I can lose the plot,get so frustrated because I cannot process and understand long written passages such as books ,newspapers etc,get really annoyed when strangers obviously have no patience when I try to communicate and my wife is actually written this for me as I lose concentration easily.Anyone else in the same boat.

[cat3]

Hi Bowler. I've learned to cope better as time passes by absenting myself from noisy situations ; that's difficult I know with family, especially boisterous children.

Fortunately my son and daughter took my consultant's words to heart ("Your mother will never be the same") and researched SAH and its lasting effects before my discharge. So they know my boundaries, but we still have plenty of laughs with no tip-toing around.

I'm in and out of bright, noisy supermarkets as quickly as possible and I panic in hospital waiting rooms from being trapped amidst that volume of humanity ! TV is another touchy issue ; too much dramatic music in the background of a film and off it goes, and all ads are muted.

Does everyone in your family understand why you struggle with excess stimulus ? Maybe a printout from Headway on the long term effects would ease the situation ; text from an official source can be more convincing.

I do hope you'll reach a balance where you can excuse yourself without atmosphere or judgement.

You can phone Headway for printouts on 0808 800 2244 or download them from the site.

Cat x

ps...concentration/memory etc is atrocious, so sympathise with long passages and complicated plots too... 🙄

[Trevor78 in reply to cat3]

"Does everyone in your family understand why you struggle with excess stimulus ? Maybe a printout from Headway on the long term effects would ease the situation ; text from an official source can be more convincing." - good advice! - I used that to good effect on various issues during my working life when I hit a brick wall of managers not understanding the hidden effects of TBI. It worked in the work environment (it was public sector though who will act in such situations, especially these days). Didn't follow the same approch with family though and have just plodded along for 40 years to be left pretty isolated and not in a great place. It is what it is though. Swings and roundabouts and all that!

[cat3 in reply to Trevor78]

Swings and roundabouts for sure ! Hope it's not so dreary & wet where you are Trevor ; pretty wet, windy & grey here in NW with 'Storm Kathleen' 😦🌧️🌧️

Take care m'love..x

[Leaf100]

Hi Bowler.What you describe is pretty normal for people with brain injuries.

Headway may have some ideas re coping strategies and some family counseling avaliable as well as for you yourself.

There are things you can do, like wearing sunglasses and getting those noise blockers that people wear in airplanes or musicians wear in concerts. It won't completely do it,.but it helps a lot.

The other thing to check out is neuroptometry. You may need prisms in eyeglasses that can help your brain process. They will also assess if you are tracking words on a page as meant - for some people.after the injury the eyes go here and there, so of course you can't take it in. It may or may not be at play.

Headway can also help you get appropriate tests so you can understand.what is happening to you better

Brain injury people often have a lot of trouble getting assessed and helped because docs don't get a lot of training on the subject.

There is no magic answer but there is a lot out there that can definitely help.

I don't know if it helps or not, for one of us you sound quite normal

Welcome to the group.

Leaf

[Bowler2012 in reply to Leaf100]

Many thanks for the informative reply,I will def look into the assessment as it may help when trying to get benefits such as pip.Regards

[Liumeybob]

Hi there Bowler

You have almost described me to a tee. The losing my balance and occasionally falling over are my extras. Loud noises and talking swith my brain into almost flee mode. Oh aphasia, especially trying to understand the quieter dialogue. Lastly. Do you remember the personality you had before the SAH. Mine was a triple and since coming out of a 3 month coma, None of my lifelong friends want to know. That is painful to me but they expect to see the old me and he is gone. I have no idea how I differ though. Keep a stiff upper lip mine was 7 years ago and not so long ago as yours but I have improved in many ways. Not allowed to work though as I lost huge chunks of my frontal lobes and so have big problems with making new memories and judgement.

[Bowler2012 in reply to Liumeybob]

Hi ,BobHad a very outgoing personality,but keep family and close friends near, still have holidays but def not as social as I was before,have to take time to think before I speak and people look at you as if your stupid which really annoys me as I am reasonably educated, was never out of a job from 1974' to 2018,but medically retired and unable to work due to having difficulty of processing and retention,can't even do charity work as I am deemed a risk,also I have no filters now,I just say it as it is and don't really care who I upset.

Cheers

[Ideogram]

Hi Bowler. Sorry you're suffering. I'm quite new to this, but a few things that might help-?

People talk a lot about the emotional and behavioural changes with brain injury, but I always insist that I'm not irritable... As long as no other people or inanimate objects are involved. What you've described sounds entirely normal for this situation - I've found visiting family to be the most stressful time. I love them, but I can't control my sensory environment when I'm with them, and I get frustrated when they don't understand what I need.

As Cat said, I find that other people's understanding (or lack thereof) of my symptoms is one of the biggest challenges. Of course they can't 'see' what you're struggling with, so it can be really, really hard to communicate what you need. And it can feel like you're being demanding, even if that's exactly what's necessary for your health.

For me that's things like -

- Being able to say that I've suddenly got sensory or brain overwhelm in a situation and I need to leave. Social situations really overwhelm me - following conversations, it being loud and bright, and even having to socialise without the crutch of a drink.

- Not being forced to make decisions - I find this *really* difficult, and other people don't seem to understand that I'm telling them a story because I need their *help* deciding what to do even on little things now.

- And finally, needing other people to be reliable and clear and not flake on me, etc, which adds unnecessary stress.

Of course I then realised that I hadn't actually spelled this out to my family because we're raised just to fit in and not be 'bolshy' - but getting stressed brings *on* the symptoms.

All of this is to say that - I think Cat is right, about maybe helping others to really understand what affects you (or maybe your partner can help?). If you can change some things in your environment, and minimise the stress, that might really help.

And I've now started taking dark glasses with me so I can put them on when it's too dark inside, as well as outside, and I'm going to get noise cancelling headphones because other people are WAY too loud.

I also really struggle with screens or books, especially when I'm fatigued or stressed, and my neurophysio talked about nystagmus (eyes sort of running all over the place) - so the suggestions about eye stuff also sound very sensible.

Best of luck.

[Bowler2012 in reply to Ideogram]

Thank you for your response, I will take things on board and see how it goes. Cheers

[Teazymaid]

hi bowler like others have already mentioned what you have said could have been written my myself as well .. it’s so exhausting and I am trying very hard to deal with this and other things .. for me I’m reading Paradox Chimp for the second time as I had read a lot of it pre accident and I’m finding it very useful .. you can always have this book on audio if listening to it would be better . I would like to listen to it but fall asleep if I just listen to stuff 😊. Plus husband is listening to it so we are both aware of it .. fantastic book explains how our heads work and also I think helps after a head injury as it does explain all aspects of our brain … plus we have been doing counselling together and this has improved our communication ans my husband is understanding how I feel and also I’m understanding how he feels .. CBT is a great therapy and there are always others to try if this isn’t quite right for you .. let us know how your getting on with the CBT .. Sue 😊

[Bowler2012 in reply to Teazymaid]

Thank you for that reply.Audio books send me to sleep and I've tried and tried to read,but concentration,difficulty in processing etc just wears me down,so I listen to music mostly.

My wife is the one that reads all the reply,explains when I'm not sure and also helps me put these chats together., I start cbt for I think 3rd time since my SAH on 26th April so I will let you know how it goes

Cheers

[Teazymaid in reply to Bowler2012]

Yeah let us know as it’s alway good to hear what others are trying .. yeah I’m lucky that I can read a bit better now and reply on here .. something that I could do for sometime .. my concentration is very difficult if there is noise or I try to use my hands and attempt to talk . I just want to scream or I make ridiculous mistakes ( some funny) .. all of this makes both jobs I have loved doing impossible .. look forward to hear about you CBT ..Sue 😊