hello everyone that has read and replied to my post about mental health , i got in touch with MIND , i self referred myself via online form then about 2 hours later had a call off them for more information , i then was offered a telephone assesment for a week later , i took the offer and on tuesady i had my telephone assesment spoke with a lovely lady who made me feel safe secure and heard , she told me she was going to talk with her supervisor as my needs were maybe contected with the trauma of finding out i had a brain anuersym then the ops after etc , she was very shocked that i was offered no after care or was heard when i spoke to professionals on how i was feeling at the time , anyway sorry for the rambling lol , she got back to me today and asked my permission to get in touch with my gp to ask about my ops etc and how to get a referral for me to speak with a neurophycologist as she feels that its what i need and they deal with brain injury and will hopefully be able to help me more , i feel more optimistic about my mental health improving over time , all of you that replied helped me be strong enough to reach out to get help and I THANK YOU VERY MUCH for that i appreciate all your help advice and kind words xxxx
a update on my post on advice needed on mental hea... - Headway
a update on my post on advice needed on mental health and a big thank you x
Sounds good stay positive, good on you for reaching out.
thank you hun , it took me nearly 2 years to do it but i feel bit calmer now ,
That sounds very positive, I am pleased for you. Now you have a path to healing ahead. That is really great. 👍
That's really good news b - well done you for making the first ( and hardest ) steps to get help. Neuropsychologists are great people to get onside too.
Thank you hun . It was hard as I used to be a strong woman but I'm a shell of myself so it was do or die. Have you seen one yourself hun ? What will they do . Will they fix me x
I actually had two of 'em! 😊
The first neurologist sent me to the first one for cognition tests, which are very detailed, where they work out what stuff you have trouble with - like executive functioning and memory stuff, and then you get a massive report about what's normal and what isn't compared to your peer group. But I didn't see him again. He suggested a mindfulness based stress reduction course, which I did, which was very helpful, and gave me a lot of stuff on fatigue after brain injury, which I didn't really make good use of, because I didn't really understand how it applied to me - that was about the six month mark, when everything was pretty confusing though.
Then with the help of the neuro team people I was seeing at the time, I found a local neuropsychologist who worked in brain injury rehab for a local health trust and she was really brilliant for working out good strategies to handle my fatigue. Really went into detail. She was really good at using the first one's report to point out why I found some things a lot more tiring than others, in ways that made sense - plus she provided a lot of emotional support for the way I was feeling - and with her support I then weaned off the antidepressant as well, with no bother. ( Originally the antidepressant was very helpful, so I wouldn't ever rule the pill option out).
So yes, neuropsychologists are good people for us I've found x
thank you for replying and sharing your experience with me hun i appreciate it , im going to go into with my eyes and mind open and try my best to get well mentally , i have memory issues fatigue headaches etc which make me feel low as i can not do much as in watch tv too long use my computer for long periods or read a book which i loved to do before which i think makes me depressed and so i have isolated myself , so hopefully with the help i hope to get my life will open up more for me , i feel very strongly that not enough is offered to us brain injury survivors , i no some have had the help they needed and deserved but unfortunately i was not x p.s sorry for rambling on lol x
It is hard finding things to do without using phones, computers, tv or books - I can't do anything like I used to either. The only thing is, I can often read in bed at night for longer, and the only reason I can think of is that it's because it's quiet and there's a dimmer light. Painting works well for me on terms of rest , and knitting wasn't bad either - except I'm a terrible knitter, and it took me quite a few goes and YouTube sessions to work out how to do it again, which wasn't quite the result I was aiming for.... It is hard finding the right sort of support. I think that's why Headway was started up originally.
i have to watch alot of mindless tv u no reality tv or things that dont need me to think or rember as im not good at that no more as if i try to do too much of it my head hurts then i have to lie in a dark quiet room , i miss reading lots , i cant listen to audio books as my hearing is extra sensitive since my first op . oh how i love the new me lol i think i rang headway once but was along time ago and i wasnt strong enough to try again but if i need too i feel i can now
as long as u enjoy knitting go for it hun , i think i knitted a scarf once but it was over 36 years ago x
I think that was my previous knitting time too - probably can't blame that on the TBI...
I watch mindless TV too , but I find adverts are tricky to either watch or fast forward....
i darent knit as i tend to lose my temper easily with either noise from outside u no people cars etc or my kid and his horrid dog being noisy so if i had the needles in my hand im scared i might use them in the wrong way lol , wen the adverts come on tv i just turn the sound down to give my brain a rest x
That’s really great, Burtongal! Glad you are finally getting somewhere and good luck with everything 🙂
thank you hun , i feel a bit calmer now i took that first scary step but hopefully on wards and upwards to having a life now x
So glad you found a path, burtongal. It takes courage to try, and is such a relief when the people are actually a fit for what we need. Keep us posted.
thank you hun , me too just wish i had the offer of help in the first place then maybe i wouldnt of got as low as i have become . i think i didnt do it before as i thought oh well ive had my op they have saved my anuersym rupturing so i should be happy im still here . in my opinion not enough is done for us after the op , this is just my story i really really hope not every brain injury survivour has had the same journey , as it can be scary isolated and a lonely path .i will keep u all posted but u might think fgs woman stop rambling on by the end lol x
Rambling is ok.I agree we are often left to drift.
More an d more I see the system expects people to 'advocate' for themselves but that is a hard thing with cognitive issues which we all have more or less.
,I thr UK you are very lucky to have Headway. Where I live theirs a society andI amgrateful for that, but the neuro whatevers are in very short supply and they tend to only see people who need to live in group homes or otherwise are eligible for home support, so a lot of pei0le fall through the cracks.
It isnt right but it is how it is.
I am so glad you didnt give up and found a way, it is so easy to drift as just gettingtheough theday canbehard enough.
Big hug to you.
thank you , its so nice to be understood and not judged on here dont u think hun .its so wrong as i had to google to find some support and i was lucky i found a lovely lady who works with brain injury survivors on facebook who has been a great support , but tbh we shouldnt have to google we should be supported if we need it , i no some dont need support or help but they should still be offered as i think our brains are a delicate organ that some others that havent been threw what we have do not understand or seem to care as its a hidden disabillity , and if we smile we must be ok .
hugs for u too hun on your journey x
yes I agree, we ought not have to go begging for support or even have to struggle trying to find any that might fit in the first place... for me I know seeing an ot would help (a specialist rec8mmended it) , but at 200 an hour and a few thousand for for an assessment t I cannot pay privately but I have no access through the medical system... then they asseume you can pay for what they suggest after.They also assume you have family to help, and that is not always the case. (I think they expect family will step up when they see you struggle,but not all have family or the family doesn't care - or say they do but do not help.)
I try not to think about that part as I start to go down the negative feeling road and there is no cheese at the end of that tunnel.
its awful hun , most of my family dont care they think uve had the op so uve got epilepsy get over it so i cut them out my life as i did not want there drama or negativity , im sorry your road has not been how it should be , but this place is great for support and advice , we are here for each other which is great no dont go down that tunnel if theres no cheese or chocolate at the end of it lol
keep smiling
keep strong
keep talking to us x
Thank you, burtongal....yes, chocolate is the draw, for sure!
And yes, this situation does mean you have to be careful who is around, and act accordingly.
your very welcome leaf , oh i love chocolate its my one true love i cant taste it tho as i lost my sense of smell and taste but i will never stop eating it lol
i think we have to for our own sanity and on our journey x
Oh, I wanted to say I saw a thing on YouTube. The woman was talking about narcissists but I think it applies to those who can not be bothered to try to get it when ae are in - she calls it deep- meaning do not defend, excuse, explain or... I forget what p is... yes people know we are disabled yet with some they somehow act like we have to convince them... doc diagnosis not enough for them... or they minimize everything..
we shouldnt have to explain unless asked as i no each head /brain injury is different and effects everyone differently but i do think when we say i have a brain injury it would be nice if they ask how it effects us but most just oh ok , its a hidden disability to most , i used to think it was the heart that made us who we are but i think its the brain that works the hardest to make who who we are , unless ur famous with a brain injurt noone wants to no how ur feeling , wat a world we live lol x
I have noticed most with brain injury do like to help others because they know how much help means... being kind comes formthe heart and I'd like to think that is what matters most...The world is crazy tunes I agree.... people who are famous are not more deserving but get treated that way... it is very strange
So sorry, I’m touched by your storey, I hope you get all the help you need, my head is messed up too, xx
Hi thanks for sharing and I’m pleased you are now getting some help.The system is fragmented and overwhelmed and people within it struggle to help as much as they would like. I used to work in a multi disciplinary team supporting early diagnosis of special needs…
After my TBI I had to retire, first step out of hospital was a leaflet! Almost 3 years on, a mix of private and NHS diagnostics and treatment- I found every single part of that treatment through being on the forums and research not through a GP.
We are vulnerable I was in coherent often but no one is going to change it because there’s no money in the service - I won’t get political here!? Sadly unless I had advocated and fought for help I would still have a leaflet… now I can write this. Good luck 🌼
hi your welcome hun , its took me along time to share as i used to think my journey was something i was stuck with u no the headaches the fatigue the siezures but when i started getting low mood then suicidal thoughts i thought enough is enough i need to reach out , i understand the NHS is over stretched but it makes me angry as when i broke my ankle many years ago the aftercare was great but after a big operation it was there you go your fixed bye bye , i dont think i even got a leaflet when i was discharged , i was the same as you , no follow up from my GP i even had to beg to be referred to a epilepsy clinic as my GP didnt realise i was epileptic
thank you hun you too x
🌸
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