Yet another night of not sleeping, I keep thinking dangerous and unwise thoughts about what my life would’ve been like if I hadn’t been brain injured, what I was like before it happened, and the lonely, sad and desperate person I am nowadays (18 years or so later) because of it.
I don’t know how to reach acceptance of something that has ruined my life so much, and has taken away my chances of love and happiness (I don’t think I can feel proper emotions anymore and this really scares me). how can I accept this and not feel constantly bitter, angry and infuriated by it all, as well as so envious of others I know who don’t have to deal with anything like this? Finding it so hard to deal with.
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Dann2
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Hi Dann2,I am glad you recognize these as dangerous thoughts.
I am 12 + years and I feel at points you become more aware, and it kind of goes in cycles, and those are hard times. You do get past that point of thinking 'one day I will be normal'...a d then what...
When it happens to me I repeat something like 'Right now I have a roof over my head and I am ok' ... and try to concentrate on how the blanket feels or something very real, and I keep repeating that I am ok and find all the reasons why.
It is a good idea to get help from your local Headway or brain injury society - whatever you have in your area.
I would also advise looking for a group you can either go to in person or by zoom where others arediscussinv how they cope. I am not really a group person, and some are more chatty than others, but it does help. Also perhaps look for some peer support or something like that. Even just having conversations with people who do get it is such a relief and it is less lonely.
Does Headway have activity groups? Where I am they have some art groups, yoga, walking, and music therapy for people with bi. Some are in person and some are via zoom. There are also zoom groups now for people who arent going out because of Covid. Have a look around.
I would suggest talking to your local Headway and asking about those types of things as well.
Just keep trying. I know you are determined and have a lot of gumption because you have made it this far already.
It is ok to look at simple things and see if you appreciate them on some level... sometimes satisfaction and other positive emotions are subtle. I also know you have some emotions, or else thinking about the past and what could have been would not disturb your sleep.
I see a neuro psychiatrist and it does help, to a point. You still have to find your own ways and I have found what works changes as you process. Having a few tools helps a lot, and the nuero psych can help you find and understand what works for you. A nurse I met w said if something feels food - is working, then carry on, when it isnt they try something else... I kind of use this for my choices in what I apply to how I am thinking, and this flexible approach has helped me.
The nueropsyc has another client I met - his injury was caused by a suicide attempt - for him he recommended a book calls Man's search for meaning by Victor Frankl who was a psychiatrist who survived 4 Nazi concentration camps. It is about finding meaning and some sort of internal coping mechanisms in an insane world. It is on my to read list.
The neuropsyc also recommended a book based on research done world wide about what brought people some personal satisfaction... I cant remember the title or the author because when I looked it up the guy had written a bunch and had some sort of program built up around his work and I got confused. I 'll find out and post it later.
I have a lot of trouble reading actual books myself and have an easier time if I can use Overdrive or some other book program. You may consider that if reading is also not a great experience for you.
I see pinkvison suggested Acceptance and Commitment Therapy and I also liked some of the things I found about that on YouTube- I know my neuropsyc also uses it. It is another one I want to mine more.
I have done and seen CBT applied and I would say I am not a fan of it... it amounts to trying to build a skill to look at things differently but I have found most of the time it amounts to telling yourself stories to try to talk yourslef out of feeling what you are feeling by redirecting your attention elsewhere , or defining it differently , but when you are going through something very intense it falls short, in my opinion. Yet, it is very popular. You can get the idea of this on easily by watching YouTube videos. (In my opinion the issue here at least is the people directing it are not psyc but nurses and they just repeat the slogans, whichis not useful, in my opinion. Your mileage may vary.
Having said all this about the self help, do push your doc for a referral to a neurolsychiatrisf. I have had to literally sit in the office and say 'I am not leaving until you do the referal'. I live in Canada and by law they can not refuse to refer, not sure if that is the same where you are. Maybe Headline could suggest someone in your area and give you advise on how to insist? Even sometimes telling the doc someone like them is suggesting it can help them be more helpful.
There are things out there that can help you find your way.
I really don't know if these things help, just gives some ideas, I feel we long haulers have our work cut out for us ... it is easy for others to say just live with it ... I am not able to socialize cause of the over stimulation of going out... it is easy to say oh you do not need to socialize but I do not think that is true... keep us posted on how you are doing... I have no idea what will actually work for you but I sure as heck will be here so you aren't going it alone...
Thank you Leaf100, yeah I’m struggling a lot with head pains and ringing. Very lonely coping with it and not being ableto socialise and be ok with others. Really hate living such an isolated life, not how it should be.
Thanks for your supportive messages 👍🏻 Actually means a lot. And hope you are doing ok.
That is a rough phenomenon, Dann2 re the head and tinnitus - I have experiences with a few versions of that.
This kind of issue wears on a person and makes it harder to endure the other areas of our lives which are not as we would prefer.
I am glad to hear the small amount of support I am able to offer helps.
At the moment if being ok means basic needs are met, then I am ok. These days I am coping by taking it as it comes and trying not to think much beyond the moment. Not always easy to do.
Thank you for asking. It is good to be able to answer with something that says how it is rather than to have to put on the social face and say the expected 'fine'.
Yeah, saying ‘fine’ couldn’t be further from the truth most of the time, but it never seems appropriate to tell the truth in everyday situations does it.
Tonight I’ve realised that I’m in such a bad place mental-health wise, and feel things will never be ok. But I have no one to tell this to or help. Family members just can’t cope with it anymore and neither could my ex gf. Have been coping with these difficulties for so many years. The thought of not being able to be in a loving relationship again, is really upsetting.
In our culture people say hi by saying 'how are you'... they do not really mean they really want to know how you are.
It is normal to be upset and feel lonely if you are not able to negotiate the dating world... Of course it is upsetting.
I haven't been on a date for more than 12 years, will not say exactly but that gives you an idea. I can not seeing going on a date anytime in the foreseeable future..... I do not think such situations are uncommon.
You need to get in touch with Headway and get medical support. Sometimes we need it.
I cope by forcing myself not to think of such things and that is not easy. Life is very intense right now in other areas and I wonder how I'll manage when things get simpler, and there is more time to dwell on things that feel missing.
(I have tried medications and they do not work for me, but they do work for a lot of people and they may for you. There are also certain activities that help and you may be able to do them.. for instance I hear there are groups in the UK that swim in cold water and it is really supposed to help.... Headway and professional help is your best bet for coping with the overwhelming feelings.... the point being they may have more things for you to try...)
When my brain goes down that path I do something that takes my entire focus, I tell myself life changed on the edge of a coin before, and so it might do it again, I tell myself to focus on the moment and the real things around me. The people at the bi society where I live tell me people do get into relationships after bi, that people will still like you anyway, and accept you for who your are now... they never met the old you, so won't compare.
I have also watched a lot of talks by Ajahn Brahm on YouTube...not that I am a Buddhist- he is - he gives practical secular talks on how to cope with various difficult aspects of life and there are quite a few on there. Maybe it is is calming voice or his corny jokes, but sometimes it does help. You could give it a try and see.
Just trying to give you some ideas to check while you may be waiting for Headway or an appointment... usually there are waits.
I do not know if it helps to hear you are not alone, there are others like us out there... the medical people will have heard it before...
I see you have MIND.org.uk and the Samaritans are open 24 hours at 116 123 .... do call, sometimes a chat at the right time makes a lot of difference. You do not have to sit alone with it, with thoughts going round and around.
Are you having thoughts of harming yourself? If you are please call someone right away.
You do matter, Dann2
And if you are not thinking that way... good! I had to check.
Sometimes we do feel really really sad. Grieving is also normal. We've lost a lot. We are also aware of how things would be different now, if only.. blah blah.... Our minds seem to do that ... so , also normal, but not helpful .
Getting fresh air helps. I sit outside on a balcony sometimes. I have a few flowers out there. It helps to just sit and look at them, give them some water etc.
It can be draining to socialize if you have to fake emotions. Are you able to socialize over an activity at all? Could you have a small allotment garden, for instance? They are a community of sorts, with a focus - meaning it may be easier to cope with the social aspects. I do not know what you can do.
I try to keep contact with people I have met in groups, and it is sporadic, but its something.
Do you write at all? Maybe you could try writing what conversation you would have with someone of they were there... didn't Leonard Cohen do something like that? ... even just writing down everyithin in your head with no editing can help... just stream of consciousness to get it out... do that for awhile and then go back and read it...sometimes we can see answers in there....
Again, all of this is sounding more like advise, which may be totally useless... emotions can be like the weather ... just need to be experienced so they can be free to move on...
Yeah I recently did try ACT, thanks. Find all these things pretty difficult to make progress as I lose concentration and can’t remember things properly! Meaning limited actual progress. Have tried to write notes which helped a bit as I could look back at them later, but wasn’t ideal. Thanks
Ok, here's another one to try. Automatic writing. When your head is on rapid repeat, irrational thoughts etc just write them down, as they come, don't stop to edit, just write it. No matter when it happens just write. Keep a big thick note book by your bed and when the thoughts come just sit up and write. Let it flow till it runs out. Don't read it until you have had quite a few episodes, then when you have a good clear-head-day read it. It's a process of write it to objectify it, read it to rationalise it, and process and integrate the information.
If you think it may be very difficult for you have a chat about it with your GP or psychologist first.
Hi Dann, to live with this cloud is difficult, if not torment. It is good that you recognise these thoughts, but the thoughts are a torment in themselves. You have reached out to this forum, which shows that you have strength to fight.
Please speak to your GP about how you are feeling. There are various support options available. I would ask to be referred to a neuro-psychologist, and possibly a neuro-psychiatrist. You are not mad, these are specialists in people with brain injuries, and even after such a long time, can help you cope when you feel this way. I was reluctant, but I believe that they helped me to reach the point I am at now.
Consider contacting the Headway helpline, contact details are pinned to this page. They can help you explore your thoughts and give options to access support.
If nothing else, please keep in touch, and let us know how you are going. 🍀
I don’t think I’ve been to a neuropsychologist before. My gp seemed really impatient with me on the phone last time, which didn’t help! Anyway… thanks for your advice
Hi again Dann, sorry to hear you are feeling low. How have you been getting on generally since your earlier posts?
I agree with Pairofboots - you need your GP and specialist neuropsychologist and neuropsychiatrist help, to find ways of coping - that are really hard to find on your own without help.
You need that practice with, and insight from, someone on the outside, to find what matters to you in your own self and then to help you work out how pursue things that are important to you. People here have found different ways of having a life that is meaningful to them - this is a better route through life than comparing what we think our other lives would have turned out like. We all wonder - that's human, but don't let it stop you living your best life for you now.
What happened to you originally Dann, if you feel you can talk about it?
Thanks, have been struggling a lot. Feel very isolated and that’s why this forum helps. Might pursue a neuropsychologist referral to see if that helps. Hope you are ok.
Thanks Dann, I'm a bit shattered right now - it turned out to be a day of neighbours helping each other out today - in-between I went to the dentist, and then stopped to sit in the park in the sun - armed with a rather good ice-cream...
What was your day like today? I'm sorry you're finding everything tough at the moment, but glad this forum helps you - what's your story?
My neuropsychologist helped me a lot with practical strategies to cope better. I know these are big steps to take after all this time.
Have you found out if you have a Headway local group as well as talking to someone on the Headway helpline?
Glad you managed to relax with an ice cream. My ‘story’ might be slightly different from others on here - horrible long term side effects caused by a medication I took when I was 18. Obviously very upsetting for me to talk about too much.
Thanks. We all arrived on here by a surprisingly wide range of different routes. Yours sounds distressing. Certainly none of us chose a BI. It does rather sound like you didn't get enough help early on, which must have been hard I think?
No two brain injuries are exactly alike anyway, though there does seem to be some more common outcomes like fatigue, insomnia, a variety of those difficult to describe cognitive issues, and this wretched tendency to depression.
(I overdid things yesterday and walked into a wall of insomnia last night, so am not functioning well this morning. While I've no regrets about the sense of community where I live - and none at all about that ice-cream 😊 it even looked pretty - scoops of strawberry and pistachio gelato! I suppose it raises questions for me about what is realistic for me in a day, and whether I meet my own needs well enough - time to recall some of those strategies that I was coached on by that neuropsychologist I think...)
What do you feel you struggle with at the moment, and also about talking to the Headway helpline for a bit of emotional and practical support?
A 'mindfulness' retreat that immerses in ways of thinking differently while surrounded by others who are trying to do the same and leaders who are expert at it: The Guardian identified 10 of the best. I went on a retreat in Suffolk and began a healing journey with others who had a range of assorted issues and difficulties. I found it helpful:
Ignore the subscription requests when linking to the Guardian's site. There are other retreats in the UK not listed here; do a 'google' search to browse around.
Try dipping into some audio books by Eckhart Tolle. His is an interesting way of looking at life. Listen to the words of Kim Eng regarding 'accepting the pain body'. Very helpful when we're in trouble for which there's no 'cure'.
To help with sleep, try Dr Jeffrey Thompson's 'Delta Sleep System', at night, in bed, with everything dark, quiet and undisturbed. This particular CD works well for me.
Finally, there's an old cliche that says we are what we eat. I know from hard experience that food and supplements can change the way our bodies operate either for the better or worse dependent upon our dietary habits. Sometimes, they need revision.
Here's a link to some sound advice about diet and mental health; there's lots of similar stuff out there:
I know this comment won't be of much use but thanks for sharing your reality - even though I'm only 6 months into my tbi I am also feeling hopeless, angry and lonely - I have children and grandchildren and don't really want them around at all as they bring demands I cannot deal with and I find I get more exhausted than ever. I don't really want to be around anyone but then feel lonely when I'm alone. I have a wonderful wife but now I'm feeling co - dependent on her - this never happened before - life now lacks any quality - I hate my injury and it scares me to hear people continue to suffer lifetime 😢
Hello cyclinghu, chin up, don't forget that every brain injury has a different trajectory. Im guessing this is the longest you've been laid up with s health problem up till now? I think dix months can be quite a tough time, it was for me. How are you getting on now with getting some support in place by the way?
Thanks for your reply Painting-girl - you are right!! I have always been on the go - I am still trying to keep going but the fatigue and depression is overwhelming - not doing very well with my fatigue management!! Having my licence revoked has been so difficult but hopefully now that the six months have passed in theory I could have it reissued one day subject to DVLA🤞I hope you are doing OK and I do appreciate your words - take care 👍
Oh, and ironically I'm starting my fatigue management course with my OT in September. I was recently diagnosed with complex ptsd and am on a waiting list for therapy - it's a very long waiting list - but it's also a very long time ago that I suffered childhood abuse...
I'm sorry to hear that you suffered abuse cyclinghu - this is all a lot for you to handle. But it sounds like that you are having some issues recognised now and are moving towards some help at least.
It's a great worry when the effects of a concussion don't clear up quickly, and it's easy for depression and anxiety to have an effect. Don't forget you can always ring the Headway helpline for support and reassurance though - they are really good to talk to as well ( 0808 800 2244 )
Bear in mind that pushing through the fatigue makes it worse, and can keep you locked into the boom and bust pattern of fatigue. It's a jolly hard one to manage on your own, so I'm glad you're getting an OT course - I hope that goes well for you, and you get some useful strategies out of it, to manage your fatigue.
Not driving is tricky, particularly in remote areas - but it's also important to realise that we aren't really safe behind a wheel when we are fatigued. I was told by my neuropsychiatrist that if I became fatigued after ten minute at the wheel then I shouldn't drive at all. And even when your licence is returned it is still your legal responsibility to ensure that you are fit to drive. So I've returned to driving very gingerly and have gently built up how far I go - so far it's okay - but I'm aware that driving and then doing something draining fatigue-wise could make it difficult to drive home again without some sort of strategy in place - like a nap in the car first - it would be interesting to hear what your OT might come up with on that one actually. Hang on in there, and let us know how you get on.
thank you very much and very wise words!! Maybe I really should call up the Headway number again - I did ring them a few times during the early days but I keep feeling I should be doing better than I really am so have not recently - thanks for the number and take care
That's a good time to ring Headway actually Cyclinghu - I was digging through my early clinic letters and the neuropsychiatrist had noted back then that my anxiety was largely centered on the feeling that I 'should be better by now' and that I should be reassured that it was pretty normal to experience longer lasting symptoms than 'Dr Google' had led me to believe..... I didn't think I was anxious actually - but having talked to all the neurologist's team and had a lot of reassurance, and after a couple of weeks of being on an antidepressant for the first time ( which really did help a lot) it turned out I had been really very anxious indeed. You take care too.
I’m 7 years since my life changed after I had emergency heart surgery which result in brain damage.
I know how it feels as I still have times where I also feel I would be better off if I hadn’t survived. More so since recent loss of family members.
I will admit I found headway group and neuropsychologist both helped me. Especially to feel that what I’m going through is ‘normal’. With my neuropsychologist we decided the grief is more like a Spirograph diagram as you could be any stage of grief but fall back to earlier stage.
I don’t think you can fully get over the loss of what could of been but I found personally that focusing on my achievements afterwards helped me feel better about myself - like finishing headway course, starting volunteering.
Unfortunately I’m no longer under neuropsychologist or at headway, but I was able to come off antidepressants.
Not sure if I’ve been much help, remember your not alone. Though everyone has different circumstances , a brain injury can greatly effect person life.
Hi Dann,
I’m sorry you are having such a dreadful time. My daughter is 3 years post TBI and sleeping is a problem because of the tinnitus which was one of the permanent constant side effects. The book mentioned in the link above: Eckhart Tolle - Living in the Now works for a lot of people and helps them find some peace. It’s the sort of book you can just pick up and read a passage from and that could help as not too daunting if reading isn’t your thing. Personally I like to go for a run as I mind it quite meditative and it clears away the negative thoughts when I find what happened with TBI too hard to deal with.
Thanks TBIX, I’ve just ordered that book, sounds interesting. Yes, I have had tinnitus as part of this for 20 years now. It was really bad at the start and then calmed down a bit. But still bothers me a lot and I have to play birdsong in the background at night to distract me. Does your daughter do this? I hope she finds some peace too and manages to get some sleep.
Hi Dann2,
Yes she uses an app that has a rainfall sound which helps her sleep - silence is the enemy. Stress and having a cold/flu makes tinnitus worse too. I hope you enjoy the book!
Hello Dan, get a prescription for Metazapine from your Gp-youll sleep like a log. Stop watching tv as much especially the adverts about new cars and holidays-it will only make u jelous. avoid booze-even in small amounts.Its hard to live so taking each day as it comes is the only way.
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