This is my first post here but its been a weird comfort to read of others who have suffered what I have suffered and are probably the only people who understand.
I had a ruptured aneursym 18 months ago, diagnosed initially as vertigo, it took 6 weeks for medics to take me seriously and discover I had had a brain haemorrhage. It was then discovered I had a second aneurysm. On admission to hospital I was put beside someone who had covid resulting in me being taken to isolation bay as I had been a close contact and thus having to go through all the trauma of surgery, disturbing conversations etc alone.
I was off work for 5 months and on my return was unable to cope resulting in me having to close my business of 17 years.
I am exhausted, suffer short term memory problems, audio problems and been diagnosed as having PTSD.
I am seeing a clinical phycologist, doing yoga, reading, walking my dogs, everything I should be doing but its all mechanical. I feel alone, sad, angry and useless.
This really is an invisible disability as everyone thinks I look so well and therefore assume I am fine. I have been advised I will be part of the brain injury unit for the next decade, a thought I dread.
I try to avoid talking about it too much with my friends and family as I don't want this to define me but I suppose I wondered if anyone else has a coping strategy for seeing friends/ family and how to handle days/ evenings out when I feel so low in energy. I feel at times that I ruin a night out as I'm just thinking about when I can get home to bed.
Thanks for listening X
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hillow
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hello hillow, and welcome, it’s very early days for you at the moment and you are still adapting to the new you and unfortunately it’s a given, although it can improve to some degree. I had to smile reading your story was very similar to mine as far as the problems from the bleed goes, I have problems with poor memory word searching balance etc, it is six years since my bleed, and I didn’t have two aneurysms just a very unpredictable one which decided to grow several times, so it’s not easy relaxing and putting it out of your mind. It does get easier, and I try to live and be grateful for each day, Annie and I have been on a journey, and it’s no different if it was any other life threatening illness, although I think there is more support for other illnesses. Did you have your aneurysms removed or coiled, and do you have any weakness, you sound like you are able to get about walking the dogs, I am limited only with somebody my family don’t trust me, I’m only allowed a shower when someone is in the house, it’s all about adapting . You will get lots of support and guidance on here, I have met many friends over the years, who have helped me so keep popping on love Alice xx
Thank you Alice for your lovely reply. I had a cerebral stent to correct a badly damaged vessel above my eye and the aneursym removed. I'm very lucky as I have no weaknesses and can get about on my own. I have found little support unless I pay for it ( which I am doing at present). I wade through each day, strategising what to do next to occupy my mind from the dark places it would like to go.
Thank you for your positivity, our stories are similar, actually I suffer balance problems too Its great to find a support network here ...Hilary xx
hi Hilary, maybe you can be a little more positive as the aneurysm has been removed, my aneurysm is at the back underneath the brain and cannot be reached to remove so I can only have coils inserted, hence why it was able to regrow despite several surgeries, and then ruptured, they hadn’t given me a good prognosis prior to the rupture so to get off so lightly I’ve been very lucky, I’ve found using a walking stick has helped with my balance, as I was all over the place, I do have to tell peopl about my brain injury as I soon lose track of a conversation or my brain changes words like frequently I have penguins in the garden which isn’t bad for Manchester, and they are only pesky pigeons, we laugh at a lot of my failings now, I swear a lot more which I never did before, and my daughter tells me I have lost my filter so I have to be careful I don’t intentionally hurt anyone’s feelings as I just say what I think, which could get me into trouble. I’m lucky in that I live with my son and daughter, my daughter was a military nurse so has a lot of understanding and support. Anyway Hilary stay in touch there will be lots of support on here for you, take care love Alice xx
Alice sounds like you have a lovely supportive family, as do I. I'm smiling about the penguins/ pigeons, thanks so much for chatting to me today, its really helped xx
Alice, I can't help but smile remembering your penguin tale ; it's one of those little gems of brain injury which are a welcome break from the downers ! The poor filter and word issues are all too familiar... Cat x
hi cat, thanks but the strange thing is I am petrified of pigeons, I have a phobia, when I am in our local town they wait for me until I’m practically stepping on them before they take off, maybe that’s why my brain wants to think they are penguins lol xx
Ah ha...so seeing pigeons in your garden would've been so scary that your brain had to quickly find an alternative, less erratic bird. Not a bad choice really, a 2 syllable name beginning with P .....the sweet friendly penguin. Well done to your brain for such quick thinking !🐧🐧🐧 Xx
I’m really sorry to hear what you have gone through , I have a brain injury , I suffered a Intraventricular haemorrhage at birth , I’m 28 years old , I also suffer with memory problems , fatigue , information processing ect , & for a long time during my teenage years/ early 20s , I really struggled opening up to people about my brain injury with it being hidden disability , i also had ‘there’s nothing wrong with you’ ‘you look fine to me’ , people thought I was lying about the brain injury & only the last year I’ve been learning more about it & brain itself & got into brain injury groups &’it’s really boosted my confidence in talking about it & it helps a lot! I felt along time not opening up about it , is just protecting myself from peoples comments but now I feel no! Talk about it , this is part of you , your living with the brain injury day to day & your educating others by talking about it , you will feel better in urself
I find it very frustrating when people look at ma and think 'you are absolutely fine.' Its helpful to hear that you have joined groups and talking about it is making a difference for you, I have been avoiding that so far as I feel I would cry easily when talking about it but this group is a first step for me in trying to talk ( virtually) within a group. Thank you X
Hi hillow. I'm new here too, and I could have posted your same post. I took my kid to the train station this morning and everything I saw on the way back - folks fixing the road, working as drivers, taking kids on outings. All of it was utterly terrifying. How on earth do people cope with the 'ordinary jobs' of 'everyday life'? How did I ever do it before, and will I ever cope or understand again? So that's one of the main reasons I wanted to join this group - to talk to people who understand brain injury and how it affects us all, and how scary the world is. Your line "I wade through each day, strategising what to do next to occupy my mind from the dark places it would like to go." - yup, that's my life exactly at the moment. I'm really pleased to meet you.
Thank you for taking the time to reply. I know exactly what you mean, I look out into the world every day and it seems surreal, I am numb most of the time. I joined this group a couple of months ago but was almost afraid to read other stories as I am so upset for each and every person going through this, but here I am and its really lovely to chat to people who understand xx
Hi Hillow. As brain injuries go, yours is still quite recent and your symptoms are classic (memory & exhaustion being top of the list along with emotional lability and intolerance to excess stimulus.
You'll be grieving for your former life and the ability to run a business. One's former self is a massive loss and only time will smooth the edges. Surviving the psychological impact of brain injury and its aftermath is tough, but by letting go of certain expectations whilst testing our new barriers (not too hard) we can manage an ok quality of life.
I no longer apologise for cutting back on social occasions, usually making an early exit with "It's been lovely but I have to go now" and my familiars now accept & respect it. Do what feels necessary and remind yourself you've done your best. We can't let others dictate our boundaries ; wellbeing has to come first.
But by being totally transparent about our limitations and the cause of them, life is so much easier for everyone concerned. It's good to strive for better, but truth and facts are the least stressful tools for acceptance and progress.
Keep doing what you're doing m'love ....you're coping better than you realise. Cat x
I couldn't have described this better Cat. I I generally 'put a brave face on' for others but behind closed doors I'm not so good. I used to love catching up with friends and date nights with my husband, now I just wonder how I'll have the energy to get through it and worry everyone will get sick of me. I've suffered panic attacks and visual problems when out and really at the moment have to force myself to keep going for fear I'll become a hermit.
I think chatting here today is a start, thank you for your advice, I'm so thankful to all of you for sharing your journeys with me and how have been feeling and coping. I'm so pleased to meet you all X
Just a quick tip .....many folk believe panic attacks are exclusively a product of the mind but, although that's where they originate, it's the erratic breathing they cause which is responsible for what can be devastating attacks.
Co2/Oxygen imbalance can cause intense symptoms of dizziness, inability to breathe and feelings of doom and panic. By correcting breathing with a deep inward breath (so the abdomen fully expands) holding it for a while then exhaling in small steps as slowly as possible, the attack can be halted. Here's a link to an NHS site :-
As time goes on you will get more familiar with how things are for you now, and learn how to talk to your loved ones.
My Mom couldn't see a lot if things til she came to live with me, and then for awhile thought I was a total jerk sometimes, and then came to realize it was the brain injury and not me purposefully doing whatever it is. I can't tell you because I still haven't figured it out. It has something to do with me not understanding certain things.
Your loved ones may know more about your triggers, when you start to get tired, etc, than you do - at the moment at least.
We sometimes think we are pulling off a poker face but often we aren't doing that as well as we imagine.
You are still you.
You're going through a period of adjustment, is all. Not that it is easy or straightforward- it isn't.
Be kind to yourself.
So sometimes having a little catch phrase or two to tell ourselves when it gets hard can help.
Thank you for your message. I like your idea of a catch phrase, I'll have to have a think about that.
My healing process really involves me keeping my mind occupied. My tiredness is difficult to manage and if I sit down nowadays I fall asleep.
I will have to get better about telling friends/ family how I'm feeling. I'm supposed to be going on a trip with friends in March and honestly don't know why I agreed to go. I won't be able to keep up ... I think when they were booking the trip I just said yes because I wanted to feel normal.
hello Hilary, I am so sorry to hear your struggles and I completely sympathise with you.
i am new to this too, I had a subarachnoid haemorrhage 11 months ago. I recently resigned from my job as finance assistant, I know I have a lot of recovery yet to go and I knew it was the right decision, even though I battled with it for weeks and was very upset at having no job. I have exactly the same struggles as yourself. I too was diagnosed with PTSD and just couldn’t bring myself to talk about it.
I really struggle understanding why this happened to me, I have 2 kids 10 and 8 and I lead a very active life, and not overweight, and just got no answers as to why me. No after care from any professionals either, just basically left to get on with it. I attended my first headway meeting yesterday which I have been avoiding as I don’t want to talk about it, as it makes me cry. So hopefully this will help me come to terms with it. I am really struggling managing fatigue just now, any sort of stress can really have me feeling so tired for days. I enjoy walking my kids to school every morning, I love exercising and wish I could do more. Hopefully in the near future. I have decided to forget about working for this year. This is something I have control over at least.
Hi Vonny, its a great step you have taken to join a headway group, I hope that you found it helpful. I just couldn't to be honest. I'm seeing a clinical phycologist through our private healthcare otherwise it would not be affordable.
For the first time in my life ( since surgery) I have been on antidepressants, sleeping tablets, beta blockers and diazepam, there's not a day goes by that what has happened to me isn't etched on my mind. Like yourself, I too, was fit and active, I loved running, I'm afraid thats in the past for me now. Yoga is my new distraction although I don't think I'll ever love it as I did outdoors and running. It's great that you are walking every day, it's good to get out in the fresh air and leave our phones/ tablets behind. I understand how distressing it is to give up work, the lack of financial independence is hard to get used to ( for me anyway).
Be kind to yourself, I have found distracting myself with jigsaws, colouring in, podcasts ( funny ones) all help ... so nice to chat to you x
I just had to reply as so much of your post resonated with me - particularly about everything being mechanical. Others on this forum have sent you such lovely replies, but I really just wanted to add that I, like many others on this forum, empathise so much with what you're going through. It's absolutely true that it is early days. I didn't understand when people were telling me that - and still are, over 2 years later! I was in hospital for 5 and a half weeks and on sick leave for a year. I never thought I'd be able to to back to work but after a very gradual phased return I'm now back full time. Life since my SAH (like you, from a ruptured aneurysm) has been, and continues to be, full of setbacks, but equally full of achievements that I never thought I would manage again. Being told I look so well, like I've never been ill, is well-intentioned and I believe genuine but somehow unhelpful as it feels so superficial. Inside I feel dissociated, different, isolated, alien ..... does none of that matter as long as we look okay? And yet, nobody ever really knows what's going on inside other people. To an extent we all have a self that we present to the world. But it can be so tiring maintaining that front!
I really feel for you with your PTSD diagnosis. I feel bad enough without this, so I can't imagine how challenging that must be for you in addition to your ongoing symptoms.
Incidentally, your experience in hospital reminded me of my own. I was in hospital when the then-called Kent strain started to spread, and covid was beginning to infiltrate the ward. It was absolutely terrifying and only added to the trauma I'd already been through. The converse happened to me though - I'd originally been in a side room and was desperate to stay there as I needed quiet and low lighting, but I was then transferred to a bay as they need the room to isolate a covid patient. It was absolutely awful and I don't know how I got through it .... and yet, somehow I did!
My coping strategy is actually to tell people, and tell them again if and when I need to. That includes friends, family and colleagues. Anyone who is unsympathetic, or distances themselves ... well, I'm better of without them. I do sometimes feel there is a risk of 'compassion fatigue' even amongst my most empathetic friends and family, as the after-effects of this awful trauma are long term. But I've decided that's not my problem. It's a part of who I am - being a survivor, and being on this journey, is a part of who I am, and I want something positive to come out of it. I have no idea what, just - something. As for not wanting it to define you - I think there's a difference between letting it define you and unashamedly owning your new self. I don't know that I am expressing this at all well! I also think there is an element of 'fake it till you make it'. It would be easy for me to take the path of least resistance and stay at home and do as little as possible because it feels easier than the alternatives. But yet I somehow get up each morning, get up and dressed, do my physio, and do my job as well as I can, because I know objectively that connecting with the world and having routines will make me feel a lot better than disconnecting from everything and everyone.
My strategy isn't always successful. A family member who knows everything about my situation has invited me to a big party (including dinner and dancing) and told me he was upset when I said I may have to decline. To my mind he should have understood that it might be too much for me and not pile on the guilt! But actually it's just because he really wants me to be there. So my plan at the moment is maybe to go if I feel up to it on the day, and then leave if/when I feel it's too much. I have already managed his expectations by reminding him that I have limitations, so I've ticked that box. I think we have to tailor these things so that we have an exit strategy, whether or not it pleases others, so that we minimise the pressure we put on ourselves.
I have no idea if any of this is helpful, but I'm so glad that you reached out on this forum and shared your experience. Weird comfort maybe, but hopefully a comfort nonetheless!
Faith, thank you for sharing your experiences and strategies.
When I was initially brought into hospital I was put in a bay ( beside said covid patient) I remember some of the conversations I overheard when the neurosurgeons were explaining to patients what they needed to do in their upcoming surgery, it was terrifying to hear, especially as at that stage I was still unsure what was going to happen to me. I couldn't believe at the time that these conversations were not being held out of earshot of other patients. The one thing I held onto though was that my husband could sit with me in the bay, when I went into isolation I think I lost all hope. The memory of being shut into that room and waiting for surgery unsure if I would live will haunt me forever.
You have done so well getting back to work full time, I can't even imagine that at the minute but I appreciate that mentally it is a much better option having routines and getting out into the world.
I agree having an exit strategy in relation to evening out/ events is a good idea , the hope is that our friends try to remember our limitations and don't get annoyed if we opt out. I do hope you make it to your friends party but I think it has to be a day by day decision. My problem is I'll be in Venice so my exit will be tricky. I'm still not 100% sure I'll go despite the fact its all paid.
I have started a positivity journal and when I see a little phrase I like or receive a nice text or card etc I'll put it in my book, its really nice to look back at lovely messages people have sent me or meaningful quotes to lift me when I'm having a down day.
Thank you for getting in touch and taking the time to share your experience, it is a comfort to read your post, I know its not easy re-living this experience X
hi I haven’t posted on here for a while but I picked up on your post as it sounded similar to my experience.
I had a stroke ten years ago.
I also started getting fit walking the dogs (a lot) doing yoga and weights. Subsequently getting fitter than I’ve ever been.
My friends keep saying “you’re looking great!” Which is lovely but I struggle on a daily basis with energy levels and what I call funny turns that include odd smells vagueness and anxiety.
I’ve started being quite forcefully saying “ I’ve had a stroke, I’m knackered and I’ll bloody well have a nap or early night if I need it!”
People are slowly cottoning on.
Stamp your feet and do a bit of looking after number one.
Tell people to check out this forum. It’s there to help people with brain injuries but it can be used to educate others.
Hi and thank you for your reply. I think I need to stamp my feet a bit more.
I've told a couple of people I've joined this forum and they have been surprised that I have felt I needed to, another example of how people think you are fine and just back to normal.
It has really given me food for thought about speaking my mind more. I love that you are so active, yoga has been a lifesaver for me as when I'm doing it I don't (can't ) think about anything else. My pups are a lot of work but give me a structure to my day and a lot of smiles too.
Lots of luck and thank you for sharing your story x
this discussion is amazing, because every post has at least one aspect that resonates with me and helps me so much in not feeling isolated with the aftermath of TBI.
I too had 2 aneurysms rupture one morning, but luckily when I'd taken myself to the hospital pretty quickly, the CT scan showed the hemorrhage and I was operated on that day and both aneurysms were clipped. I still have one remaining aneurysm on the other side of my brain which is being monitored, and which additionally affects how I lead my life (I do NOT want another brain operation, if possible, and certainly not another rupture!).
This was in the summer of 2021 and I am still trying to get back into my job, but it looks like I'll be stuck at 50% for quite a while now, as the executive functions (esp. multi-faceted thinking) and energy reserves just aren't what they were. When I get tired, I start losing words too - I use the word "plouff" for anything I can't find the word for, and those close to me are keyed into this, and help me find the word.
I have accepted that my life now happens during daylight hours and true friends (through TBI you really learn who are the ones that will really stick with you!) actually enjoy sharing my new pastimes with me: visiting museums, discovering new walks in my region, any matinée music performances, antique shops etc- basically trying to discover something "new", however banal it may seem. Making my daytime hours richer has made it much easier to accept that I don't go out anywhere in the evenings anymore.
Plus walking, walking, walking, often with my binoculars to watch birds, helps me enormously. My brain definitely gets on much better with natural daylight and without ceilings- i.e. outside! While places like museums are ok for an hour or two, places like supermarkets, malls, with all their artificial light, noises and bright colors, tire me out very quickly. I have also accepted this and believe now that is an increase in my quality of life compared to before the TBI
When it comes to larger, longer events with friends or family, my brain coach (yes, I am very lucky to temporarily have someone there!) told me to always think through a Plan B for each occasion so that I am never stuck away from home with an empty battery ( because we TBI survivors have no reserve tank like our cars and most uninjured people do - there are no reserves we can tap into once we hit that first red line on our tank). Before I started doing this, I did end up in a situation with no reserves and it lead to a complete brain blackout for several, which is extremely frightening!
My Plan B might involve checking all the train and bus connections from the given location, ensuring I can get home when I feel my energy starting to dwindle (get going before it depletes!) and always letting people know, that when I need a timeout, I take it. Or then, for example, my niece is getting married in Spain this year and I am extremely apprehensive about the reception with 150 guests, of whom I know only 4!, and all the noise and inputs (smalltalk is one of the most tiring pastimes for me these days) - so far my Plan B planning is: stay in a hotel nearby so that I have quick and easy access to silent downtime on my own whenever I need it, inform my family of my Plan B, and generally making the wedding only a small part of my trip (making it less daunting as well).
I plan my Plan B as thoroughly as I do the main plan and this has given me a new feeling of control, which I find empowering - and I do feel empowerment is a real boost for us TBI survivors. So much so that I have acquired a new confidence that I find missing in quite a few of my colleagues. A lot has involved me starting to embrace and get excited about discovering the "new" rather than trying to re-establish the previous "normal" (this also changes how you react to how other people see you - I think the best is just to accept that the others have as much insight into your brain as you do into theirs ).
I've always been a silver lining hunter and so also see further gains from my new lifestyle: I feel special because I have gained the opportunity to set new priorities, I see more sunrises and hey, no more hangovers
Going out for a walk now and wishing you all a positive day!
Hi, thank you for sharing your story. Goodness, it sounds like we were going through this at the same time, so much of what you have said here resonates with me.
I regularly lose words which I find frustrating and often forget where I'm going or what I supposed to be doing, I now carry a book around with me at all times.
Thats a great plan for your nieces wedding, the important thing is that you will get to see her get married and she and the rest of the family will be delighted you have been fit to go. Small talk takes up so much energy so I can understand your apprehension. Just take it at your own pace. I'll need a Plan B for my trip to Venice, city breaks can be tiring at the best of times. I'm thinking a good book and a nice coffee shop and my friends can just leave me there ( I imagine that will take some persuasion though)
I love your positivity, thank you for posting and keep well 😊
welcome to our world?!!! Suffered the same bar aneurism. A long tough journey ahead, but hope u find solace here! I just SMILE yo spite it!! This no u have the energy within u to ply I way threw!!! Found more presence of mind here than anywhere alse!! Takes one to know one is very fitting, have found loads of support here, where to turn. How to get ahead. Good luck &remember we are here to endure with you! See u smiling already!!
Thats so kind of you, it is lovely to know I can come here for support and advice. It is a tough journey, I thought after my surgery I'd be back to work and a normal life in two weeks, oh how wrong I was.
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5 weeks in to my husbands BI and feeling terrified
Post Brain Surgery Anxiety
Post Traumatic Brain Injury
Post brain hemorrhage 
My husband had a brain haemorrhage a week ago.
