Hey folks. I've been working through a Covid-induced ABI for a year now, and I know from your posts it's still early days. I've also seen so many of you experiencing the same things as me: isolation, depression, feeling suicidal. When I first awoke from my coma and came home a year ago, I felt I had lost every part of myself that mattered to me, so I didn't want to live. I have teenage kids, and my husband has been amazing through my recovery, so I pushed through for their sakes. As the months went by I began to adapt to the new life. I was just starting to feel I could push through this early stage and get to the bit in the future where you come to terms with your new self and accept the new life. But my memories keep failing.
The folks in the NHS clearly have lost interest in me and aren't responding to any questions. I saw my consultant in back in March, he said the affected part of my brain is the memory centres, and he set me up for an MRI the next week to see if the memory centres were still damaged. No feedback yet. They might tell me the results at my next phone appointment at the end of June.
First, I had to come to terms with losing my memories of my former life and everyone in it. Friends, family, all falling out of my head one by one. A year after my illness, now I'm losing my new life too. Unless I see people regularly, they fall out of my head and are lost. Strangers keep coming up to me and saying hello, asking how I am, I have no idea who they are. So, my depression is back with reinforcements and I spend most of my day planning my suicide. I just have absolutely no will to live this fading and meaningless life. And of course the NHS apparently isn't bothered with helping me. My eldest child starts A levels in a week, so I'm not planning anything until they make it through the exams. But after that...
Over the past year I've found a range of things my brain has got stuck on for a while, like thinking loads about science (I used to be a scientist), or about trees, about primary school - random topics. So today I wondered whether my plans for ending it all are just my brain being stuck on the topic rather than actual deep depression. And my question to all of you is whether any of you have experiences similar or have any ideas that might help?
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PurpleOverlord
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Hi there, I also struggle with memory. Directly post bi for roughly 2 to 3 years I only have what I call borrowed memories. That is what people have told me happened.
Pre bi I can remember things if prompted about them or a topic is mentioned.
My short term is terrible , it seems I have a 2 week delay in the ability to recall events.
I seem not bad at major events since my bi but usually get them in the wrong order.
Keeping a journal can help.
As for seeming to get stuck on a subject tell me about it. I can over focus on the strangest thing.
Me personally find getting outside in the countryside helps switch off my over focusing. Also I paint occasionally to allow my brain to relax. It may seem strange but works for me.
Finding a relaxing hobby can help your mind relax it seems.
It is nice to see you have adapted to what has happen instead of trying to cope.
I like you kept going for my family, though now it's enjoying my family that keeps me going. I don't want to miss them.
hi so sorry to hear about you ABI .. and welcomed to this group . I too have memory problems but they are improving I’m two and a half year past my accident . Over this time my speech has improved but occasionally word finding is still an issue and short term memory has been terrible .. I use a diary all the time and take it everywhere with me I refer to it as my brain and smile .. I’ve told everyone how bad my memory is so please excuse me if I forget something etc
I had other injuries and have just had another shoulder op but although the body was beaten up along with the head it’s not the hardest part , it’s me , the new mean and depression through the roof plus my personality has changed . Very bizarre living with the old me ,the new me and my chimp ( chimp paradox book really good read )
I did suffer with depression for years prior accident and antidepressants helped so much but they got double after TBI as I was horrendous also aggressive alone with other things ti long to write ..I became emotional dead so decided to reduce and come off he antidepressants .. all was good ish but my emotional dead remained the same and aggression came back to the point of having once again no off button .. so been back on original does pre accident and can see an improvement .. sorry this is so long but I really wanted to say that I get every word you have written . Have been suicidal and I did get help .. read paradox chimp amazing book . Get councillor don’t leave these thoughts in your head they need to come out , meds if needed talk to DR .. art , fresh air, music try them all see how you feel with all types of relaxation/hobbies….
You are right the NHS has little to no help with brain injuries but they can help with the depression ….
Don’t except that this is what you have to live with .. as it can get better . Depression side for me has improved . Memory has improved . Speech has improved … body injuries has improved … I never thought I would be able to right the last paragraph but I can and very much hope you will find help from this group who are dealing with our new very distorted brains .. Sue x
Thanks for your posts, Pax and Teazy. It's weirdly both good and bad to hear that others have been through the same. But very good to hear that you've both found ways to cope and adapt as time has gone by.
Weirdly, after I wrote my post yesterday I did feel better, so I think on some level I was just focusing on a bad place. So I'll keep that in mind if it happens again.
Getting outside is definitely one of my plans and goals. I've just been for a gorgeous walk in the sunshine, listening to the birds, looking at the flowers and butterflies. And I'm in the process of adopting a dog to give me more reason to get out. I'm a cyclist, always done it for the gorgeous scenery, and will keep at it. I've certainly realised from this group how lucky I've been not to have suffered any serious bodily harm. I lost all my muscle mass while I was in a coma, but I'm slowly building it back up. And I've got long-Covid lung damage, but I'll keep puffing through.
My GP has been helping me out with antidepressants, and they do help - sometimes just enough, sometimes not enough, but as Teazy says, I want to keep them as low as possible so I can keep as clear as possible.
Doesn't help being menopausal, so got all those extra brain/mood/body issues to deal with too!!
hold on!! After 10 years my memories came back!! As am sure yours will, I too spent 4 weeks in a coma, had to relearn so many basic functions. Wasn’t even aware of what I’d lost for the first five years hard times to go through for sure, am sure you’ll survive the ride!! Won the biggest battle didn’t you?!! Was told 5 years & what ever u left with will be it?! Sorry many of us here proved them wrong!! +20 years and am still astonishing myself!! This is a brill site for support! Like minded survivors!! Happy to bolster others from personal experience!! Am sure y like a challenge, have the desire to progress? Won’t lie it will be bitterly frustrating for u & friends, family. Know many times ahead you’ll visit here, hope y find the support from strangers?!! It sure saved me! More than once! Good luck & chin up!!… oh & SMILE to spite it!!!
hi there I read your story and I am very sorry to hear about what you have experienced, I have hydrocephalus and had a severe blockage last year and following on from that within days a mini stroke , my life has changed since it happened and I struggle with memory difficulties, emotional issues and depression and anxiety and find it difficult to cope often , I have come across some great books and try to read little and often to keep my mind occupied and active and go for short walks , listen to calming relaxation music and do some mindfulness meditation, recently joined Thai chi and there is some great support platforms , I am part of the headway support group that offer advice and online / face to face chat groups about different topics relating to brain injury and the effects of it .
I recommend loóna app , happy place by fern cotton both apps and mind space as being helpful also through therapy support they sent me an app called calm harm which is good to download. Hope this information gives some comfort and helps in some way
You have a lot to deal with. Something I eventually found helpful when my life changed, though not from a BI I add with haste, is to focus on "right now". I learned that there's little point in mourning the loss of what we had in the past; we cannot go back. Nor can we predict the future, so all we have is now. It is now that requires our full attention, to all things.
Nothing in our life is permanent. Everything changes and there is sometimes sudden and unexpected loss along the way. This is inevitable; it is part of life and the natural order of things rather than good or bad luck. It is our ability to adapt to the changes we encounter that helps us find at least a certain level of contentment. I believe it is contentment we should seek; happiness is an elusive dream that many waste their lives (and money) chasing to no avail.
From your post, it seems to me that you are already mindful which is the foundation of contentment. You appreciate sunshine, fresh air, flowers and wildlife and making the most of each moment you have. There is some good stuff around you. and you recognize this.
I found keeping a journal excellent for relieving depression and gaining perspective. It should also assist with recall, but it is important to focus on the good things that happen as they happen and not to dwell on or write too many negative things. Try to avoid ruminating on unhappy thoughts - especially regrets. Such thinking will drag you down when what you need is uplift. We are capable, as humans, of uplifting ourselves just with the power of thought. If this were not the case, the 'placebo' effect would not work - and it has been proven to work. We can persuade our brain to allow us to think differently and positively to good effect.
I suggest if you haven't already that you try to get creative. Take up painting - you don't need to be good at it, just splosh around some colours and do it. Listen to music as much as possible, especially the great classics. Meditate and listen to/read the words of a good guide such as Thích Nhất Hạnh, Kim Eng and Eckart Tolle. There are many others. It doesn't matter if you forget that you've listened and read; simply listen and read again.
Eat a good diet with lots of fresh fruit and veg. Avoid alcohol. Exercise such as walking, swimming or a gentle art such as tai chi (very meditative). What about yoga? Get plenty of good, deep sleep - this is very important. Drink lots of water.
As long as you are safe, warm, fed and watered and have your family and a good friend or two around you, it does not matter that you often forget faces and things. Don't fret about how others interpret this; simply remind them (in case they've forgotten!) that your memory is constantly challenged and smile; there is nothing wrong with forgetting and you do not need to apologize.
What matters is that you are able still to appreciate and deliver good and kind things - and each day is certainly new for you!
Meanwhile, your brain will very likely be hard at work re-wiring, which could take years. You must get plenty of rest and drink water to feed this process. Keeping uplifted will help your brain along the way as it is flooded with helpful chemicals generated from good thoughts.
I hope my post to you is assistive rather than otherwise. I think you're brave; certainly stronger than you realize - a well-worn saying, but an accurate one.
still a long road ahead!! Tough if like mine but good things will come too!! I was turned away at the purely gates too, told I had a job to do, no idea what for years!! I think you are the same! Social services are a good place to start your journey, this is a great site to find support, ideas. Please share y progress with us would love to hear y journey! A smile to spite the cause often helps good luck!!
Hi I bet you are glad you joined this special club?One of my daughters said about the site after I came out of hospital after a brain hemorrhage.
Everything changed I couldn't do the cooking because of weakness in my hands. I also have cognitive problems, but I go to Headway every week to try to help my memory and cognitive problems improve. I suggest you contact Headway there contact details are further down the page.
I have been lucky friends are great as are my husband and grown up daughters.
Some days are good. But some days are rubbish but you have to think I'm still here, the doctors told my husband we don't expect her to survive this, but I'm lucky.
Sorry to hear you have joined the rest of us in this situation.
I lost about 5 years in the period before my accident and it is a horrifying feeling when someone knows you and you have zero clue who they are. My current short term memory is shot but slowly I’ve noticed some improvement over the 6 years. Hopefully you’ll get better soon!
One thing that struck me was that you said you used to be a scientist so then likely you have a very logical mind. I think when a brain is injured it protects us from knowing the full extent at the time of the injury but when you have very good logic and see you cannot do things you are understanding the depths of your deficits (even sometimes more than medical professionals unfortunately) and the only logical way to end that suffering (when doctors have zero solutions or interest) is to die. At least that’s how I explain what I went through… I could logically & rationally say I wanted to die as that would end the ‘short circuiting’ and ‘misfiring’ of my brain. Although logically I also knew my brain would possibly be able to re-wire over time even though I had thought about all the details… I worried more that I would die and would live even more disabled so logically I could plan it in my head but never go through with it.
Also getting stuck to me seems to be how your brain re-wires things.
Sorry if it doesn’t make sense… language & words is part of what I struggle with. If I could talk at you I’d explain better. 😉
Just keep on going knowing that at some point you’ll get through to the other side of darknesss on your own terms and that you are not alone in feeling that. ♥️
1. You’ve come a long way!! 2. What you’ve achieved it took me at least a decade, was told whatever y are after 5 years is all you can achieve? Crap , some 20years on am still astonished to discover emotions, memories that I thought were gone. You’re in a long trying trek!! Hope like many you find peace on your progress, weekly I have coffee with people, know them but can’t for the life of me, think of their name?!! Certainly not as academic as you, have a friend who was a headmistress until she had a stroke. I think I see in her some of your frustrations. We attend art together, she has an A level in it. A joy to see her rediscover her ability, had to learn to use her other hand!! I sense like her you have somewhere deep inside, the necessary grey matter to adapt and move on?!! From what have read you’ve already climbed the biggest hurdle. Reckognition of the changes in you character? I take my hat off to you!! Someone else in our cituation, adaption, acceptance we can manage? For me it cost me my siblings bar one! I see it as their loss certainly not mine!! See I have a better personality?!! My waffle made you grin yet? A little twitch at the corner of y mouth?…. You are a survivor!! Far to precious to us all here!! We need your input to bolster, inspire others!!!…. Even if y can do it more articulately than me!!! sMILE to spite it/them/ depression/ frustration….stop it Michelle, y waffling!!.. BUT AM ALIVE and now have a new purpose!! See y can grin!!….take care and welcome to a rather weird funny farm!!
Hey everyone, thanks for all your very useful stories and advice. I had a really bad couple of weeks after my GP said he couldn't do anything about a referral to mental health help for me, and there was ongoing silence from the neuro team who used to be chatty and helpful. So I felt I was being told to push on with absolutely no answers and no brain to manage anything.
But things are getting better. My fantabulous husband is pushing on with sorting out some kind of neuro therapy through our health insurance. My GP apparently did organise something and I'm off for mental health support next week. And my neuro consultant reappeared with an apology and told me that the neuropsychology appointment I have next month is all about figuring out what level of damage has occurred.
So no real answers yet. But I'm not alone. I've got you fantabulous folks, and some medical folks too. Plus the sun is shining and the world is turning green. I love spring!
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