I haven't been on for a long while - seems everytime i do its because i want something (instead of trying to help by getting involved with the chat about everyones daily problems).
So sorry, normally by the time i think of something helpful someone else has already written it.
Bit of a dodgy tortoise these days i am afraid.
Iam feeling quite frightened at the moment. I havent spoken to the hospital about it because i am afraid they might think i am mad - i will ask to see if any of you have an insight because over the last couple of years i have become comfortable discussing things more openly with you.
My head injury causes me problems very similar to a lot of the other people who chat on line here. My accident was 5 years ago and i will not bore with details, but generally until the last couple of years i really didn't feel i had changed or that things around me were different.
I have the regular memory loss at the time of and after the accident and the cognitive problems that seem common after a tbi. But I am suspecting I have lost what seems to be about 20 years memories in certain situations. Its very frightening when i realize it is happening again. It happened again last time East Enders was on. I dont watch it often, but when i did the other night I thought it was some type of spoof - everyone had aged about 20 years - especially the women. It ended feeling like some type of zombie film and i had to turn the tv off. I dont remember the actors having wrinkles - they seem to have aged over night. I know it sounds funny, but really it wasnt.
I experience the same with my own appearance/my own face and body and people have started 'gently' putting me right when i purchase new clothes. It has to be brought to my attention before i will realize the clothes i have wanted to buy are the type i would wear when i was a young lass (in her late teens).
I have struggled with who i am now since the accident, and thought i sought of knew what i am supposed to look like, but these things have made me rather more uncertain of myself.
Does anyone else experience this ?
Please help.
Regards
Jules
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Julesgettingthere
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No Jules I don't have that problem but I am sure it's not uncommon. It depends on just where the damage is in your brain. Ask your doctor if the area damaged would cause the symptoms you have. I did this with mine and I asked what symptoms I could expect to get if I wasn't already experiencing them so that I wouldn't worry if they materialised.
I don't like looking at myself in a mirror because the woman I see now isn't the woman I remember it's very upsetting I know and not helped by the fact that the muscle son the right side of my face don't work as they should so I now have a wonky smile.
You are not going mad, get the support you need with this, it'll help you move forward xxxx Janet
Thank you for that - I think people think I dont like looking at my reflection because i am disappointed with how i look now. I am, but its more because it really isnt someone i recognize. I had the idea of maybe taking a photograph of my face and see if i can look at that. So far i haven't been able to get the courage.
I know exactly what you are feel when you see your smile has changed. The muscles in my stomach haven't worked properly since the accident and my belly button now has a leaf of loose skin above it that looks like a sad face.... that sounds really odd doesn't it - but it does make you feel sad.
It doesn't sound odd to me at all. I've put on over a stone in weight in the last 12 months and because I'm not so active, I can't shift it, I really limit my intake of food now, but to no avail.
We make a right pair don't we?
These BIs have a lot to answer for. I can be so positive sometimes and at others it's so difficult to see anything positive at all.
Take Cat's advice, she's such an inspiration, lovely lady.
I've been back through your posts over the past 2 years Jules and it seems you've had very little respite from your depression.
We all have periods of 'quiet desperation' but they seem to be interspersed with happier, or at least neutral, times.
So I'm wondering whether you've voiced these dark moods & thoughts to your GP ? Perhaps talking to a cognitive therapist, over a period of time, might allow you to fully purge these feelings and make a fresh start.
The lapses of realisation can happen after periods of intense distraction, as in illness or clinical depression.
Are you having any anti-depressant medication at present ?
Lovely to hear from you again - you always seem to be on-line when i am asking for help - it means a lot.
Yes, I have some tablets for moods - been on them for about 2 years now. They do help soften a black mood.
My legal case ended about 6 months ago and that ending has left me feeling a bit abandoned - odd isnt it. You would think you would feel relief, it was a horrible case and a fight for 5 years.
I have been assessed until the cows come home for legal purposes, but treatment to help me has only really just started. I am talking to someone at Walkergate Neuro Hospital, but i think they are going to refer me to someone else. I am frightened about talking to them fully, it keeps me awake every night. (I think i have ranted on and on to you in the past at some god forsaken time of the night ! - sorry Cat, but thank you for being an 'ear'.
The hospital are talking about further CBT then once thats helping, getting me to go back to the accident.
I am rambling - what I wanted to ask you was about what you mentioned about 'lapses of realization'. I am wondering if i am now just starting to see things for what they are (like the age of actors on Eastenders) . I am frightened about that thonbecause that would mean that what i see of myself is true and permanent. I cant accept that.
I spend my time trying to plod on with projects around the house - but thats really sad isnt it - its like i dont have a purpose.
Jules, perhaps the end of the legal case has affected you. You've been faced with all the paperwork and stuff for a long time, then it's all done and dusted. Your brain can now rest itself...But perhaps it needs some gentle work outs to keep the memory in good conditions, the pathways in regular use.
I try to do online puzzles, and mind games and have a routine including getting out and having coffee with people.
Yes, I think the ending of the legal case has something to do with it.
I did get a brain exercise book but you are not supposed to progress to the next exercise until you note how long it took you to do the previous - i cant progress as i cant finish the exercise,
I get upset with it after a while so have given it up.
Do you know of any good but rather simple 'Brain books' ?
I've become rather a 'stay-at-home' myself Jules and, like you, most of my time since the ABI is spent with projects within the home, mostly gardening. I find it's an all year round job, having such a large garden, but of course there's always plenty to keep me busy indoors too.
I no longer have the energy for socialising, apart from visiting my sis-in-law each week and meeting up with friends every few months.
I truly empathise with both you and Janet regarding a changed appearance. I used to be quite vain, always checking my hair & make up in the mirror.
Now I see someone so changed that after checking the basics I don't bother hanging around.
I had a long period of depression in my thirties and forties and, like you, I looked around one day and was startled to see how everything around had changed.
That, in my case, was the result of medication which sent the depression packing and which I have taken ever since.
I simply hadn't been paying attention to anything other than immediate needs so hadn't been aware of changes happening elsewhere.
Please don't be afraid of CBT Jules. Those scary thoughts, once exposed, don't have the power to control us. So long as they're kept in a secret place, they can grow and torment us, so they need to be brought out into the light, and only talking through the pain can achieve that.
Please keep talking to us here and if ever you feel the need, please message me.
You know, a lot of comfort is found when other people confirm they have been through the same. Nobody prepares you for or explains how to cope with yourself after a brain injury. Me myself anyway nothing came naturally and i know my behavior has been terrible on occasions since.
The best thing for help support and guidance is here from people like you.
in the early days I used to get exhausted trying to find people to talk to who had had a tbi and are now 'fixed' or back to normal.
I never found anyone who admitted that and it has taken me a l=long while to realize thats because it doesn't really happen.
We dont return to normality do we. The way forward then is reliant on how we each deal with that realization. I suppose anyway.
One of the questions set o me by Walkergate to answer at my next session is what exactly i want to achieve by the end of treatment. He said he knows i want to be who i was but says although we will get nearer, in reality it isn't going to happen.
Its interesting that you have your projects to plod on with at home also. I have to keep note of how many i have and not to add too many at one time !
Hoping to find that i am strangely suddenly a talented at something - then that would be a basis to start deciding who i am.
I was talking to the psychologist recently who said that being involved in a legal case can keep you in the trauma and there was an idea now among professionals that it is better to wait for psychotherapy until legal issues are over. I had over two years of therapy but during that time the court case was on. It meant that while I might talk about something in my therapy and get some improvement, the next visit to the solicitor, court hearing, report from expert witness etc would come up and it took me back to relive it all again. So I can see the basis of this idea myself. For me, I was beating myself up for not being over the trauma related to the court case after so long in therapy and her explanation it helped me realise why I found it so hard. Just when I was beginning to feel better about the trauma related to the court case I had my accident - got my moderate BI and a different saga started. Sadly I have not been able to access any psychotherapy since the accident. Sorry to hijack the thread but thought it might help.
Don't be scared to ask about your experience with EastEnders - much much better than worrying yourself about it. Knowledge is power. First step for me would be to ring Headway helpline and talk it through with them. As Cat said, please don't be frightened about talking to people at the hospital if they are there to help instead of just assess. I know it's not easy but worth getting the thoughts and questions out into the light of day and get other perspectives that may help.
Big questions like "life purpose" can be rather overwhelming and certainly send me down the rabbit hole of dark thoughts and feelings.
One tip that helped me when I was in a very deep depression (related to court case trauma) was to try to find something good in the here and now - a good cup of coffee, sunshine, blue sky, my cats and I wrote them down. That gratitude habit still helps me on my down days.
Is you nickname Tortie as in short for the tortoiseshell colored cat ?
You know when you talk about 'purpose' - did you loose yours and where you able to regain purpose ? I really struggle with it. I dont undertstand why i am still here if i dont have apurpose now.
Dont get me wrong, i think all life is precious, I just think its a bit wasted on me when some poor others would give everything just for the chance of life,
If you didnt find purpose then how do you deal with it - or is it just a stage i will get through ?
It can feel like a never ending conundrum can't it? Surviving the trauma gives you a feeling of responsibility to do something of significance with your life, yet it takes all your energy to do a fraction of what you did before!
And when you are going through the process of trying to work out if there are any parts of your old career you can still do successfully, it's hard to avoid the what-should-i-be-doing-with-my-life-question.
Exhausting. If you work it out let me know!
It's been suggested to me that abandoning the life purpose question and giving yourself permission to just do whatever makes you happy today might be the way forward until life balances out.
Easy to say when the idea that anyone could be gone at any minute is a concept, once you've touched the truth of that, waiting for anything at all seems naive.
And so we're back to the immediacy of the life purpose...!
Sorry, long answer. In short, I empathise...and send a hug your way!
For me, it's cyclic, I have periods of relative stability, when I know I'm doing quite well, in spite of everything, and I CAN be spiteful, I acknowledge that. I also have periods of utterly crushing anxiety, about what-if-I-can't...
I've spoken to two of the doctors at my GP surgery about the anxiety, and sent a letter to the third, in case it was my apparent 'normality' that was throwing them, and leading them to pat me on the head, and tell me I was doing fine. The letter led to a rather panicked receptionist phoning me back, assuming I was suicidal. I'm not, I'm whatever the opposite of suicidal is, resilient, tenacious, determined, exhausted.
I'll answer my own question about the GP's responses, with the inevitable 'wait and see.' I'm only 9 months post BI, a ruptured aneurysm led to a subarachnoid haemorrhage, requiring emergency surgery, during the associated scans, they found two other aneurysms in there, one's operable, the other is too small, and in a 'risky' location, so will be monitored, to see if it enlarges. There's another health issue, too, but I'm keeping that one close to my chest until all the diagnostics go through, and I know what it is that I'm dealing with.
I don't have the time-issue, I know I'm 38, not 18, and, apart from the initial week or so in hospital following the surgery, I don't have any real 'gap'. I do have the irrationality, though, and spend FAR too much time telling myself 'no.' I was always daft-impulsive before, but now I have to be my own Mum quite a bit, and tell myself not to do or say things- catch-22, the first GP wondered if CBT might help me, but I already recognise, and put-away the impulses, I don't act on the behaviours, which range from slapping people who are noisy around me, to putting inappropriate 'things' in the work Christmas tree, I know I shouldn't do it, so I don't.
Reading through your initial post, Jules, the end of the legal thing is a time-point, there should have been some resolution, so your inner-workings are reflecting on what else still isn't resolved. (Coming back from the supermarket, and getting disproportionately annoyed at having forgotten the bread, or something.)
We function differently post-BI, I go through periods of acknowledging that, and then I'll crash-low, and become unbearably irritable about my lack of energy, or my inability to be in the same room as a noisy eater. Being able to put the irrationality 'to bed', and move onto the next thing is something I can do most of the time, but it's wearing, and, when I'm especially fatigued, I get angry at myself for being angry. Utterly mental.
I don't think we're going mad, not any more than the rest of the population, but, I do know that we deal with things in different ways, and that sometimes we're more analytical than those with undamaged brains. What I'm doing, and all I can advise you to do, is not to unpick so much that you unravel completely. The end of the legal case will have been a transition point for you, and transitions always raise questions, it's the nature of creatures with higher-order thinking abilities to reflect after there has been a change. Brain injury doctors will be used to irrationality, impulsivity, and all manner of other 'weird' side-effects. There is help out there, please don't be afraid to ask for it, because dealing with these things day-to-day is exceptionally wearing, and you need your inner resources to be able to rebuild from the stage you find yourself at now, not to try to push it under, and pretend to be 'normal'.
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Time...? Going back to the consultant.
Am I being weak?
Am I evil?
Am I being unreasonable?
