What can the NhS offer... nothing but lies - Headway

Headway

10,465 members12,815 posts

What can the NhS offer... nothing but lies

thrillseeker profile image
19 Replies

Feeling all alone and can’t manage having this brain injury that isn’t going anywhere or going to get any better I feel I have now lost my everything the woman I call my queen and our kids because I am given no support

How do I make friends I mean true friends that will understand me and not judge me because I can be slow at making up my mind or slow to reply when asked something I feel my life is just crumbling right beneath me and I can’t stop it all because I am seen to be a person at risk because I shout and that is seen as domestic abuse I don’t choose to be like this so why let me live like this gosh what is it with the NHS I mean do little and and when you see a doctor and are told this is all the NHS can offer what am I meant to do how am I meant to live like this I have been asking for years for the help and not getting it and now I am paying for it with the love or my life and kids

Written by
thrillseeker profile image
thrillseeker
To view profiles and participate in discussions please or .
19 Replies
Tony-Muzzy profile image
Tony-Muzzy

Hello buddy, my journey has been similar. I lost job, partner turned her back & I even lost my brother. However I am 10 years plus down the line now & I decided not to accept that there is nothing out there to help me. I attended an appointment with trauma specialist & neuro-psychologist. I was diagnosed with PTSD & PTED (Post Traumatic Embitterment Disorder), along with severe depression.

I was the given medication galore, ballooned to 25 stone, made an attempt in taking my own life & from that moment on I made the realisation that life 'IS' worth more than this. I took my foot off the gas & realised the NHS are part of a system that save lives & are wonderful, however they are limited in their approach. If the prognosis is solvable with medication then you'll get the blue pill everyday for you to believe this will cure you.

Unfortunately as I did, you need to change you beliefs & perceptions to be able to maintain this beast. There is a letting go & re-wiring process you need to go through. I discovered a Dr. Bruce Lipton & Dr. Joe Dispenza, the work of these men changed everything. If you can get access to the TV channel Gaia please watch Re-wired. Also if you have Netflix a docu movie called 'HEAL'.

I also found something called PSiO glasses & they positively changed my relaxation & sleep patterns. This is all a gradual re-build process & unfortunately this is on you to actually find all this out. No-one is willing to look at the holistic approach, because there is no medication to make money from.

You can heal this, buddy, it's terrifying, it feels like being in exile & that no-one cares. The first thing that needs to be altered with you, is that you have to alter the direction of your love. You still potentially love a partner that turned her back on you at a time, where you needed help. Let that one go buddy. You need to look in the mirror & diffuse the feeling of being embittered towards the world. You deserve your love & you have the power to heal your current status.

If you wanna talk sometime buddy ping me a message on Facebook.

You've got this. ❤️🙏❤️

[edited by admin to remove contact details - please use chat function on this website]

Pairofboots profile image
Pairofboots

Hi ye mate, I know that feeling very well. I thought I'd be back, up and running in no time. Well that was not to be, I was retired off. I still have ideas of doing something, I don't know what, but nine years on things have changed but not as far as my head.

My ex wife who loved my pension and benefits, as long as I didn't actually want to use them. She bugggerd off as soon as I put the breaks on.

The NHS has helped, at least the neuro team in settling my thoughts. But, oh how many times have I been asked what I need? I don't know! And if I was asked a thousand times more, I still wouldn't know. I've been given most gadgets that make life less of a physical struggle.

But what do I need? I can't even work out what to eat! I eat once a day, if that, because I could stand staring at at a fully stocked master chef pantry and not be able to work out what to eat.

I do worry that I will be one off those statistics, found dead weeks after I have gone.

I did attend Headway when I lived down south, but I lost my home, couldn't afford the rent, so ended up north. I thought there would be the same service's. The country isn't equal!

I am at peace within myself now I don't get the abuse. But I'm not getting younger, I'm not the catch I used to be, and many friends still assume I am the same.

No one can understand my brain, not even me. How do I move on, nine years on I still don't have the answer. Day by Day, that is life. What is tomorrow, I don't know.

thrillseeker profile image
thrillseeker in reply to Pairofboots

Sorry to hear that but I have had to live with this for all my life and I was four years old when this happened to me I have now lost my family because of no help or support even saying to my gp that I have temper problems didn’t help He just said that’s part of the brain injury I feel so numb and alone I don’t see the point in any of this any more, the final hearing for court is September but I know I have lost already and nothing I can do will help

Tony-Muzzy profile image
Tony-Muzzy in reply to thrillseeker

Oh buddy, I am sorry to hear this. I have good news though. There is a way to change, trauma hit you whilst you were 4. Please look at Dr Bruce Lipton, he will explain that between conception till 8 years old, the brain is in Theta, programming mode. Beliefs are formed & it feels like they're unchangeable.

It is changeable you just need reprogramming & having perceptions rewired.

It can be done. ❤️

thrillseeker profile image
thrillseeker in reply to Pairofboots

I will try looking in to that thanks

It's despairing for sure, hurts more than the cause of the BI, your world is getting crushingly smaller. there is the glimmer of hope, but we have to turn our negative male emotions to fight for what we need... Therapy! Mental, Emotional & Physical, harness that male pride and stubbornness to push through all those barriers! Its the hardest thing I have ever done and still do.

Everyday I seem to nearly lose my 'Queen', goodness knows how she does it, but after 4 years its wearing extremely thin...I HAVE TO KEEP FIGHTING for her and us.

We are all suffering/suffered the same pain and we all know the answer...to keep fighting and focusing on the present, for what we love. TBH though I think that I'd rather fight Tyson Fury! At least I would know the outcome 🤕. On that note...watch and read his story, its inspiring to see such a strong man admit his weakness.

Take care brother, I would definitely take up Muzzy's offer.

thrillseeker profile image
thrillseeker in reply to

Thanks for that I just find all this way to much to deal with as I have lost my queen and kids I know we was happy before sw came in and tipped our world upside down I find it hard to even talk to people on here never mind Facebook

debwill1427 profile image
debwill1427

Hi thrillers.

I am 40 years post injury and I know what you mean. If you have a Community Health Council, you can ask them to help you Raise a Concern or Complain. I am sure your Headway group will support you. The more we stay quiet the longer ABI will be the Cinderella of Medicine. It doesn't help that each injury is as personal as your fingerprints and therefore complicated and not easily understood. I do a lot of work with the University Research Teams and hope that by helping them with their studies I am able to put my experiences, good and bad, to some good use and help ABI survivors in the future. Lockdown has disrupted every one's lives and it Doubly Difficult for us. There has been a bit in the press about the disruption to Neurological and Mental Health Services all over the place. Don't forget Covid-19 is making many people "on edge" and you have already beaten something much bigger and you have a hiccup in the long recovery process. If your family are having trouble understanding try getting some booklets from Headway UK, or your local group if they have them. They are easy to read and you can show your friend's too. Sorry gone on a bit but I hope it's a help to you. Over the last 40 years things have improved but the Powers that Be are only now beginning to realize how important it is and that early, appropriate care, for as long as needed is more economic in the long term. You Are Not Alone. There are thousands of us. Best of Luck. Deb😋

thrillseeker profile image
thrillseeker

Hi debs the problem is I struggle to even get up and going now because I feel I am loosing this I don’t choose to be like this no way I hate been a stress head or what ever... but the more I am left like this the harder it is to get up and go my partner new all about my head injury and I love her and the kids to bits I am struggling because I am been made out to be a bad person and I am not I am caring and loving and so on, I can’t even talk to my recovery worker about this as I struggle but thanks

bbharry profile image
bbharry in reply to thrillseeker

Hey thrillseeker, I hear you and I understand you and I am living the life with you. I am nearly 20 years into living this "new life", Best advice I can give you is the first thing you have to realise is you are not alone, there are lots of us going through the same things so know that even on this group there is love from all of us TO all of us. The next thing is baby steps, you know what you don't want to be so choose what you would like to be, The way I do it is I pray, deep breathe and meditate every day.

My version of meditation is using the words I am before a sentence, I am very strong, I am perfectly healthy And I visualise lots of different scenarios so for example when I say I am strong I visualise myself doing weighted pullups even though I can't do bodyweight ones at the moment Because I have lost so much strength because I have lost so much strength and when I say I am happy, I visualise walking in a field of white and yellow flowers where I have no head pain (I've been in constant pain for 7 years) Normal energy, normal brain function and energy and I feel ecstatic in the visualisation. After meditating I am in a positive mindset where I can do something whether it be putting a wash on or doing a small bit of housework etc.

I think one thing we have all realised is there are some people in our lives who really don't get what we are going through but there are a few people that can show empathy and understand a little bit of what we are going through. I fully utilise the minority friends I have who understand a little bit and after I've spoken to them I feel better and utilise that feeling to go and do something like some housework or something good So I get the feeling of achievement even if it is just Making some food.

I try to focus on the things that you can do Rather than the things you can't do and try to give yourself mini distractions like meditation or a phone call with a friend who gets you or a phone call to someone totally neutral who you can vent to I find that usually helps.

My last piece of advice is breathing techniques. This is the best thing to calm the brain instantly, breathing in deeply through your nose so your belly expands and breathing out through your mouth with pursed lips, Even just 5 to 10 breaths can help calm your brain.

For now I am sending you lots and lots of hugs, if it wasn't for COVID-19 I would love to give you a hug right now but we have to make do with virtual ones! Stay well and stay safe🙏🏼

thrillseeker profile image
thrillseeker in reply to bbharry

The problem is I don’t know if I will ever get the chance to be with my family again

bbharry profile image
bbharry in reply to thrillseeker

Visualise it, using positive mantras (I am) are super powerful and remember baby steps Try not to put too much pressure on yourself And focus on the things that you can do 🙏🏼

Greengizzer profile image
Greengizzer

Add a pandemic and tough times for all :( It is only month 2 for me after SAH, but everyday is a challenge. Looking for answers when it seems everyone's experience with brain injuries is unique, with a few common threads. I really appreciate being able to read and post on this site as I feel I have a connection to others, that I am missing in my non-virtual life.

Be kind to yourself, be kinder than is necessary.

thrillseeker profile image
thrillseeker in reply to Greengizzer

I am lost for words I don’t know what to say to that

Tony-Muzzy pairofboots Driad debwill1427 bbharry greenhizzer

As I sit thinking I wonder to my self if there is something I can do to make the judge see that I am not a risk and more importantly how to change things for the better for everyone that has had a brain injury also I am at a lost a massive lose

bbharry profile image
bbharry in reply to thrillseeker

I would also utilise Headway, they have great people who you can talk to, offloading is a great first step to help you move forward, routing for you 👍🏻

samanthaash1993 profile image
samanthaash1993

Www.braininjurycounselling.co.uk

Symundo profile image
Symundo

Hi, I know exactly where your coming from. With my temper after my rta tbi, I’d snap all the time where it was as if everyone everywhere got on my nerves. I took Kalms for a long time that helped me chill out a little where I could control the rest usually.

I found out with my pain as well that I worked out that I just leave my bedroom for 6 hours a day, I control my temper and can think better.

I’m still watching full series Stargate sg1 and startrek voyager for the 7 time, but still forget and watch again, but if I watch anything I saw before my rta, I remember it like it is yesterday.

Then last year I remembered why no one ever wound me up before my injury. And that was not giving a sh*t what anybody says. That’s helped a lot with me.

No idea if it will help you but you never know.

I made easy pointer lists of what I like to eat, things to do etc. So I can look on a chart and eat tuna or baked beans again.

I always thought a dog would be good for me to get into some form of routine that I have no choice but to do, but I can’t walk far at all so that’s a pain.

I have post it notes by my bed that I list what to do tomorrow, I rarely follow but on good days, I’ve got stuff to try to do.

Be careful buying rubbish, I wasted so much money buying useless things. I just found 25 metres of graph paper. No idea why. And about 8 mobile phones that I’ll never use with sat nav on that I never go out.

Try read who you used to be and try your hardest to be that again, I know I couldn’t. But I got a little back reading old paperwork and diaries I wrote. If your on old videos watch. I didn’t have that chance.

I found out if I went out I’d hug my enemies thinking they were best friends. I made friends and met women years ago after my rta but I’d forget them the next day so I ended up getting dirty looks of pretty chicks I’d wonder what’s up with her.

I came out of my coma and thought I was still going out with me ex I’d split up with 2 years earlier bad mistake, she was a nutter.

You can bounce back, you know what the problem is, you should hopefully remember what you were good at, even though it may be very boring now, get back doing it. It will help you chill. And bring some optimism.

Remember suicide is killing someone and god doesn’t like that. Even if you don’t believe, do you want to take the change in case he does.

Don’t think the worlds ended, you got a second chance to start again. I don’t know why I said that. I don’t believe it myself even though I’m still trying after 20 years. But I suppose I could be married with kids now if I hadn’t lost my temper, divorced, remarried, divorced, I’ve saved a fortune.

I just snapped then being asked what food am I having on Saturday. Doh. That’s years away. Still can’t decide to have beans or tuna again,

Best of Luck.

And when you get wound up, take a deep breath, ignore, and keep shtung. I’m trying chewing chewing gum at the mo so I just go hmm to what anyone says and clear of out if the way.

Never say never

Oh as well. Lots of pain meds can make it worse. Tramadol does with me.

Never give up.

Things never become as bad as you really think they’ll become. Even if they do, they only get better after that, Treat your time alone as peace and quiet or working away.

The brain specialists used to say I’m very depressed because I cry for no reason (slightly embarrassing watching Tom and Jerry in tears) but it’s just my brain being messed up. I’m never depressed because I forget I am the next day.

My dad always said when something’s wrong keep bouncing and bouncing till it’s solved or it’s gone.

He also said enjoy life while you can because you might get run over tomorrow.

Ironic that I did & more ironic on the pavement. One thing I’d always remember to tell him whenever I saw him.

Keep bouncing.

tennijul profile image
tennijul

Sounds like you need professional help for the way you are currently feeling. Have you been referred to a neuropsychologist. I would ask about having a referral to one. I feel that none may be able to really help you. I have an appointment with one in November by the way! This is to do with my memory and language difficulties but I will raise low low living with this impairment has made me feel at times. Although right know any low mood seems to have lifted, but they cover mood, memory and mental impairments at a single referral

thrillseeker profile image
thrillseeker in reply to tennijul

Sadly I am not getting the help

You may also like...

I don’t know what I’m doing

try to keep things normal for the kids. I feel really selfish,feeling this way.i want my old...

I don’t know what to do. Can someone advise me. Please.

is. i am unable to live on my own. I need him. But it seems I’m making his life very miserable....

Can anyone please give me any advice on what to do

sometimes when you speak to him he doesn't hear you its like he switchers of.I try and talk about...

I've put up walls around me and living in a slump - can anyone relate?

changed my life. It took away my career, has left me unsure of what to now do with my life. Due to...

The importance of just 'being'

a few 'bad' days then I'll feel well enough to make a cake with the kids, do a painting or be able...