I’m really upset about losing myself and my personality, and am so worried about getting worse in the future. it’s the scariest thing ever. My brain feels bruised and my memory and thinking is so bad. just can’t seem to get any clarity or peace from this.
I’d love to meet someone and feel connection but how is that supposed to happen now? i just can’t see it being possible with these problems. It takes me to a very desperate place.
thank you for all your support recently. i hope everyone is doing well
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Dann2
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That's a lot of scary thought and I think I've had very similar ones. Your brain is very good at repair so hopefully you should improve a lot and quickly in the beginning and then slowly like you won't notice it.
Don't you have some good days when your thinking is very clear?
It's harder to meet someone after having such a massive experience as a BI,. Do you mean as a relationship or a friend?
It can definitely be a lonely journey and for myself I get very stressed when I try to have a relationship and my BI was over 10 years ago.
I hope you're not feeling too bad at moment and there's hope always.
thanks, unfortunately i’m not at the start of my journey, i’m 20 years in, so haven’t got a lot of hope left.
yes i mean a proper relationship, although i am very distant from friends also these days. it’s just all too much to cope with. i hate being like this, BI is such a struggle and i’m not a happy person to be with anymore, constantly struggling and not functioning well.
Hi Dann... I totally get it. I am almost 5 years in and my struggles have got even worse. I too am distant with most people but I would rather stay isolated than have to deal with their insecurities about my health conditions. I'm going through a lot of tests at the hospital at the moment and it's taken me this long for the medical people to take me seriously. I'm challenging to be around too but you know what... you have to do what feels right for you, not other people. It's about acceptance of my BI and it's effects that are important to me. Nobody knows exactly how anyone else feels, BI or not. I concentrate on looking after ME the best I can and if anyone else wants to walk alongside me they are welcome as long as they appreciate me for what I am now, not what I used to be. Sending gentle vibes and you know your body best so trust in your own process x
I'm sorry to hear that Dann. I think life can be a real struggle and it's hard to let people in and show them that you need help and a bit more support from them than they've been giving.I'm thinking of my friends too, and when I'm always cancelling plans and leaving early they think it's because I don't like them and not that it's part of my BI.
Hi Dan, I often think like you, having that someone to share life with, and often think of all the reasons why this unlikely. But I don't know what is round the corner, there is always hope. I do switch from Bob hope to no hope, but there is hope.
Oh Dann, so sorry you feel like this. As you say 20 years is a very long time to be frustrated.Is their no support groups or mental health or walk groups you can start? As this is how we gain our self confidence and esteem to help and communicate and then who knows what is round the corner or who you will meet?
One step at a time and gain get out of isolation to a headway group or other group is the first step.
hi Dann I often put posts of the positive side of me but although I have a husband he has no idea how I feel .. so although I’m in a marriage it doesn’t help as I thought it should . It truly has been a terrible 2 years and although has got better I have had two friends that have helped beyond belief ( 1 because of working better hours has been here more ) and even my ex husband and his wife how picked my up every week and took me out with our grand daughter ..
bUT and a huge but the most support I’ve had has come from ME . It actually hurts to say that I’m invisible to my husband . So like you Dann the thought of a loving relationship sounds fantastic . Emotional connection is so powerful Yet I can’t blame husband totally as I don’t shut my mouth and speak so honestly about how I feel he has completely shut down .. I do wish you all the best in finding that special person but I can’t help you in how you find it . I’m just sticking to relying on me and maybe when I have reached a better place others will come back … sue x
I do also have the aloneness issue, even though I am rather introverted anyway - but there is a line and then there is isolated.
For me sticking to what needs doing helps keep my gocusninnthjngs that actually make things better.
Not a 100 % thing, and it does help.
If you can join some online groups or get a volunteer of some sort to call once a week for a friendly phone call that can help. Check out what volunteers offer in your area, it may he worth a call to Headway.
There are also activities down at the local brain injury society where I live - though I have gotten to the point where I don't want to have go deal with the newly injured and etc, I need a break from all that.
No easy answers, just try to refocus on other things and do what you can for the social interactions you can handle - even if it is just saying hi to a cashier in a store.
It isn't easy. A lot of us are in the same boat,not that it helps any. Though maybe it does - it is personal cause it is happening to you but it isn't personal as it is part of the whole bi package for a lot if us.
Like you I swing, I'm all over the place from day-to-day and sometimes hour-to-hour. I try very hard to suppress it and one of the bonuses (?) of severe brain injury is I don't really remember - once it's over, it's gone.
And now I'm thinking, I'm sure again, this should not be happening after 25 years.
Get up and keep getting up, as Pairofboots says, there is always hope.
sorry, a part of the process of u brain rewiring?!! Have been there!! Very scared! U will come through it!! All part of the challenges of TBI?!! A lot of us have been there!! In time u personality will develope, a new u?!! Have all been there too!! Am sure deep inside u have the ability to adapt, & in time maybe even accept? Took me many trying times but got there in the end!! We are all there for you! Text in the wilderness? But experiences shared!! Whenever u feeling down please post, am sure someone will answer. Remember- you aren’t ALOanE!! Take care & keep safe. Oh & SMILE to spite it!!!! Often helps… raised a little smile?
I really feel for you Dann. I've just read your post out to my husband, who suffered his brain injury 4 years ago, and said "you don't feel like that do you?" And to my dismay he said yes 😩. I don't think we'll ever understand what you are going through. All I can say is keep going, try to find as something of interest. Have you thought about going to church? They are usually helpful, welcoming places. Try and stay positive. Xx
was never religious, my two older sisters died as babies. For years though if god is good, god is kind, why take them?! Actually rattled the pearly gates in 2000. They were being held by the friend had just buried 7 days earlier?!!! A rattled mind is very appreciative of my guardian angels!! Mum&dad both died several times before they passed on, know they are all reunited now!!
That's so awful. There are so many terrible things that happen in the world that I understand your views. I don't have any answers, I'm sorry. I suppose He is just letting us get on with it, no interference. My faith is not absolute, like some people's, but I keep trying, as I just feel there has to be something more. People take comfort where they can, I suppose.
I don’t believe in god, but thanks, i can understand why some people turn to this in times of desperation. i’m sorry to hear about your husbands injury.
Just wondering if you've ever been tested for damage to your pituitary gland, resulting in a hormone imbalance? If not, it's really worth getting checked out. There are several tests. Let me know if you want to know more. X
never had a specific test for this, only general head MRIs. i did carry out one of those home hormone blood tests last week though and my testosterone and others came back within normal range.
i worry that my amygdala has been damaged and hippocampus. just so upsetting 😔
I would ask to be tested, if I were you. My husband had a short synacthen test done in hospital, came back normal which it apparently often does. A friend advised us to push for further tests - glucagon stimulation test, and another I can't remember the name of off hand. These came back showing he was severely lacking in growth hormone, and he now has daily injections for this. Perhaps worth looking into? X
I think so, but only in little ways - he's better at socialising, his speech is better, he's more confident. I have heard of people with more dramatic improvements though. The main things that bother him are dizziness and fatigue, it was disappointing they weren't helped. But you know what, every little improvement is a win. Good luck, please let us know how you get on. Can't hurt to try! X
Never apologise for how you're feeling Dann. And this is the place to be when you're particularly lonely or troubled. It's a strange world we inhabit when we don't even recognise ourselves, especially when we're alone with persistent symptoms such as relentless tinnitus, brain fog, useless memory, headaches, etc., etc...
I'm unrecognisable to myself from 11 years ago when nothing was out of reach and my social life was fine. Now, even when I'm with family, I feel distant and off balance as though we're on opposite sides of an invisible screen. But to them I'm just a less energetic version of the mum they've always known ; there's no way they see the true me and there's no way I could (or would want to) describe to them these hidden symptoms.
I cope ok but only with the help of an antidepressant. When there's seemingly no solution to the problems and thoughts many of us face daily, medical intervention feels like a sensible choice for me ; it really helps. So, amidst Bi issues, I take pleasure from working in my garden, music, true crime programmes, crosswords etc... and here & there some really good laughs with son or daughter when they phone.
Do you have any kind of medication to help with mood m'love ?
Please see your GP again and explain how rotten you're feeling. They could arrange for blood & other relevant tests to rule out other issues. And if all comes up fine they would hopefully refer you to a neuro therapist, whether physiotherapist, psychologist or psychiatrist, for further assessment and possible treatment options.
Getting help can be a long haul especially after years of struggling with brain injury. Many conditions can be easily recognised and categorised for treatment with little input from the patient ; ours needs us to fight harder and shout louder .....not great when already fragile. But start with a phone appointment and take it from there.
Get any help you can Dann, starting with demanding either a referral or direct treatment from your GP. And we're always here to talk... Cat x
i know what you are saying, Cat, but my GP has referred me to neurologists in the past and it just feels like going round in circles. Honestly this has just gone on for so long and i just don’t know who to see anymore. 😖
Why did you stop taking the SSRIs Dann ; did you have side effects or were they not helping ?
I persevered with several different ones for weeks at a time to give my system chance to assimilate each one. I couldn't tolerate Venlafaxine, Citalopram, Reboxetine, fluoxetine or Sertraline, but I badly needed treatment and thank God, after 12 months, the final one, Seroxat, literally gave me back my life.
It was a slog, but my GP assured me that it was only a matter of time before I hit on the compatible one. He was right, and I knew within days of starting on it that it was the right 'fit'. It's has helped me face up to many hard knocks over the past 30 years which previously would've floored me.
Maybe give meds another try, if only to help you cope a little easier...... 🤔x
hi Dan this resounds with me I am single and getting older plus I’ve became the not so proud owner of a moderate/severe tbi 4 years ago. I suffer from memory issues brain fog and chronic fatigue amongst other issues. I have been meditating on and off since bi but just recently started to feel real benefits from learning how to meditate properly. The universe has natural healing energies that I try to tap into with the right guided meditations. Do not give up cause there is a way for you to heal you just got to find it. I hope that coincidence throws me together with a soulmate 🙏🏻
i’ve never managed to meditate very well. i’ve heard it can really help your brain but i’m not sure i’ve been able to. i’ve reached a state of relaxation but nothing more… how did you learn to, just through practise? can it ever be bad for people with dissociative symptoms i wonder…
no I feel it can ok improve your state of mind there are many guild meditations on YouTube free of charge. A dr joe dispenza has wrote books on a spiritual and inner powers of mind and such I recommend an audiobook of his called you are the placebo and it has meditations of the same title. The book is brilliant particularly if you’re trying to heal like we are, it fulled me with hope as it’s full of true stories of miraculous healings against all odds I find this type of thing lovely to hear. His meditation takes a bit of practice
Hi this has happened to my husband he feels the same as you,I am struggling coping with what has happened to him,but I would pleased to chat to you and be a friend if you would like
I have just read this to my husband and he said it is how he felt when it first happened he said he never knew whether he was awake or asleep,he asked me to ask you if you feel hungry or full up,as he never dose he wants to know if you feel lonely all the time
i hope your husband is doing ok these days. i do feel lonely all the time yes. i do overeat, yes, but i think it’s because food is comforting when depressed.
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