I am now four months down the road after having a heart attack that lead to oxygen depravation to my brain. I am only now realising the effect that this has had on me and my life. I spent the last 4 months denying that this has happened to me but am now realising that i am in denial
I struggle with anger - my son and my wife being the main targets of this. Realising this makes me feel horrible. I have changed so much since my BI and am now sure I like the new me. It is slowly destroying my relationship with my wife - with who I feel constantly angry. I can feel myself slipping into depression - which I have never had
My reaction to the smallest thing is completely out of proportion, but I don't seem to realise that at the time. The constant fatigue that I have is driving m crazy - and it seems like this drive me in every way
Sorry for the rant but I can really do with some advice.
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Dazedwp
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thanks for your reply - I have just called headway and am waiting for a call back to see how they can help.
I have tried various forms of exercise but up till now they drain me physically up to the point where I have to spend hours recovering (being who I am I always tend to push myself so not helping I guess)
I do realise more that I am only at the start of the journey - this is a very hard pill to swallow as I was convinced that I would recover quickly.
I'll wait to hear what headway says - I do appreciate your reply though
Hi dazedwp many here will recognise both what you are feeling and your concern about its effect on your nearest and dearest. The fact that you have/are able to recognise their position is a sign that - despite what you are going through - you retain your strength of character and ability to empathise! Do tell them that you know how difficult it is for them and value them sticking by you - and that you are determined to find a path forward...
First four months is very early days indeed. You will be realising how our NHS is highly compartmentalised - the GP is the key person in accessing the expert care you need at different times so I would make a point of finding the partner you get on with and seeing him/her regularly.
Fatigue is the universal symptom. Post TBI your brain no longer plays second fiddle to your conscious Will but dictates... It is best to co-operate as from now on the balance/relationship between the conscious and subconscious brain has changed forever. Your brain will 'pull the plug' whenever it feels the need! It should improve though - keep a diary to log what changes as many find that helps.
I will stop there because I want you to have a reply if you are waiting!
I am finding the whole process very hard - coming from a successful career to being where I am now is very hard.
my wife has been very good in supporting me - but I think she is starting to lose her patience with me and that makes it hard. we both have very fiery personalities and the BI has made me worse. The worst thing is that I only see my behaviour when it is too late so leads to a boiling pot of emotions.
I have called headway today for some help - I have been avoiding this as I believed that I did not need it - but It seems like I was wrong.
I really do appreciate your reply - helps to know there are other people out there that understands what I am going through
I know what you mean re the personalities! Luckily my husband had the experience of his Dad having a massive stroke and could appreciate the differences - and had something of a 'mind map' for it. We met at Oxford and I had a promising career but that ended abruptly when I had a riding accident aged 26 back in 1989.
I did recover well though after about 18 months and worked full time, had two children and was eventually CEO of a Helpline Charity before things started to deteriorate in 2002. Everyone's 'path' is unique - our brains are amazing and have their own ways of coping.
I would see your GP about SSRI anti-depressants though as this would be an emotional cushion for you and your family - once you get the dose right (see my other comments as I often bang on about this as I waited too long to start them and it messed up my relations with my family...).
I am in bed on oxygen pretty much 24/7 now so usually on line (than goodness for the internet!).
Hi as others have said 4 months is still early days. Long therm basically who knows. All bi is different and everyone's recovery is unique to them.
The fatigue and frustration can compound the effects of a bi. Exercise is one way to lift mood but even though you are fatigued remember to relax and chill.
It is hard for love ones to come to terms with the effects of a bi also. Have they also contacted headway for help in understanding the effects you are experiences.
They do say marriage break up is common after a bi. It does not mean it is inevitable. If you both want to carry on then you must both work at it...Oh and be honest.
Trying to hide things to " save upsetting " each other only upsets in the long run.
Keep talking
Pax
Your wife will get lots of support if she reads this forum. Many people posting are wives and partners of those with a bi.
I struggled massively with the well-meant "Are you better now?" and "You look well!", from people who either didn't know how severe my brain haemorrhage had been, or were just relieved that I'd survived it, and wanted to see me 'back to normal.' I told myself, early on, that I'd 'accepted' what had happened, and that I was going to get on with my 'new normal.' I fooled myself for quite a while, and managed to fool other people, too, not intentionally, just belligerent 'old' me-behaviours. It was horrible, and I spent far too long minimising, rather than acknowledging how difficult my life had become. In hindsight, I didn't want to upset people, my son, my ex, and my ex-in-laws had just nearly 'lost' me. (It was incredibly difficult to bite back "I'm not a dog, or a suitcase, I'm not property, you can't 'lose' me, because you don't own me!" I did slip a couple of times.)
Work-wise, I went back too quickly, and took on too much, because nobody else could do my job as well as I could. I minimised the headaches, the fatigue, the vertigo, the nausea, because I didn't want to turn into one of those people that's always complaining that they're ill. Ironically, the therapist at the rehab centre, who saw me twice before discharging me, DID try to warn me about trying too hard. I was in my VERY angry phase, and didn't 'hear' her telling me to ration my energy appropriately, I 'heard' her say "That's funny, it's usually men who are desperate to get back to work!" Angry-head took offence at that, and I played the "Don't tell me what a man or woman 'should' do!" card. Superbly unhelpful, in that I tried to do 'both'.
I was angry at everything, all of the time, but I'm a Learning Mentor, used to teaching challenging adolescents how to manage their emotions. I 'mentored' myself, which is the reason I still have all my windows intact, and no criminal record, every cloud, eh?
Headway will help. Then-me would have pulled a face at the phrase 'early days', because every single day that passed, and I wasn't 'better' infuriated me. Pull up a chair, and pull all the faces you like, I'm going to be honest with you about brain injury recovery, I can't comment on the heart issue, my brain injury was a spontaneous haemorrhage from a ruptured aneurysm, I'd had a week-long headache, and then I woke up in hospital about ten days later, absolutely FURIOUS at everything.
Everyone's journey is different, but there are some common themes. For me, 'getting better' was a massive stumbling block. For context, I don't do 'ill', I gave birth to my son on two paracetamol, the 'time in labour' is recorded as six minutes, because I wasn't moo-ing, and demanding pain relief. I walked around with a broken bone in my hand for two weeks before going for an x-ray. I was sterilised in the morning, and back at work by lunch-time, I'm a cast-iron idiot, I don't do 'time off' or 'recovery', so the brain injuries have been one hell of a learning curve. Brains are more complicated than any broken bones, or any other type of surgery, that's why medics are deliberately vague about time-lines for recovery, there's no standardised 'all better now!' point. Are you still sitting down? We don't get 'better', we get better at living with whatever damage has been done, and the adaptations we have to make to work around it.
Your fatigue is to be expected at this point, that big old super-computer you keep in your skull has blown some part or another (which might be on order from China, then you might miss the post, and have to go to the parcel office to pick it up, and not have the right type of ID on you, meaning you have to go back again the next day, and NOT blow up at the parcel office staff.) the rest of the computer is trying to do what it always did, but re-routing around the damaged part. A commonly-accepted analogy is the motorway-diversion, I don't drive, but it still makes sense. 'Before' is driving somewhere familiar on a motorway, it's near-effortless, because your subconscious had done it so many times you don't have to think about it very much at all. With brain injuries, the motorway is closed, and you're diverted along unfamiliar back-roads, you have to engage more brain-effort, it takes longer, and it's more tiring, you'll still get 'there', but it's much harder.(Until you're used to the back-roads.)
The fatigue can feed into the anger. I have lumps of metal in my brain, where there used to be healthy tissue, I refer to the two coil-sites as my 'brain babies' sometimes. The early days, with a brand new baby, sod all of the 'perfect' posts on social media, where nobody ever has burp-sick on their shirt, and the beautiful baby is never purple-faced from incessant howling. The early days are horrible, disrupted sleep, and all of this weirdness and discomfort, from a brain that is trying to repair, and function at the same time. Visitors coming to gawp at me, and marvel that it was some sort of miracle that I'd survived. I didn't feel miraculous, and the ex-Mother-in-law eyeing up used mugs left in the living room like they were severed heads did not help one bit. What did I do with the upended sleep-cycle, the constant pain, and the anxiety before the second aneurysm was repaired? *I* turned it inwards. "Why aren't I better yet, it's been weeks/months/years?" I bitched and snarked about working full-time, and doing all of the housework after major brain surgery, but, every time that anger sneaked into being annoyed at my son for not wiping down work-surfaces, or wanting to murder the ex for taking off his socks, and stuffing them down the sofa-cushions (that was a fairly legitimate anger, the man was disgusting.) I turned the anger back in on myself. "Why can't I do this, why is everything so hard, why aren't I BETTER yet?"
The 'step back' tactic was useful, as I said, I still have all of my windows, and I'd pass a criminal record check. Trained to teach teenagers how to recognise their emotions, and respond more appropriately, if I noticed myself getting twitchy about something, I'd leave the room, and assess whether the 'issue' needed to be an issue. My office door banged like a barn-door in a storm, and the ex and I ended up like those little chaps on Swiss clocks, we were virtually never in the same room. The brain-babies had grown into brain-toddlers, and I was putting them on the naughty step every time I felt myself approaching tantrum-territory, it sort-of worked. (I didn't punch the girl at the next desk in the face when she slurped her tea, and I didn't set fire to the filthy clothes the ex left at the side of the bed, there being some sort of force-field around the laundry basket.) Step back, she probably thinks that's an acceptable way to drink tea. Step back, he might eventually realise he doesn't have any clean jeans BECAUSE I'm not rooting about in the heap-of-stink at the side of the bed. (He didn't, when he ran out of clean jeans, he'd go to Asda, and buy new ones, the man was inept, and thought I was the housework-fairy.) I developed a mantra of "This is MY problem.", to avoid conflict, or confrontation. It was exhausting. Step-back works, self-blame doesn't.
The brain toddlers learned how not to say "Isn't that lady fat?", and "Can you move away from me, before your hair-spray makes me vomit all over your horrible dress?" I learned how to stabilise myself on walls or furniture during vertigo, or muscle-spasms. I learned how long I could leave the background headache before risking liver damage, because of the quantity of paracetamol I was taking. I learned lots of ways to reduce the impact of my disability on others. (My son was doing his A-levels, work was re-structuring, and the ex's Mum had died following a brain haemorrhage when he was 11, I didn't feel entitled to 'bog down' other people with my difficulties.)
Just over a year ago, the brain-teenagers appeared. Everything was awful, everything hurt, and NOBODY understood. (That would be because I wasn't telling anyone, I was still trying to do everything myself, the same way I always had.) I threw the mother of all teenage strops, and asked the ex to leave. About a month before I was scheduled for brain surgery, that he didn't know about, because we were barely speaking. I'd scheduled the surgery during the school Easter holiday, to reduce recovery time, and ensure that nobody else at work cocked-up any of my cases. (You couldn't make my life up if you tried, I'm beyond-ridiculous.) Why I couldn't have just gone vegetarian, or Emo, or something is a mystery. I turned my entire life upside-down, and inside-out, and had a bit of brain surgery. (For added 'She did WHAT?' points, the ex left the day after I came out of hospital, if my life was an episode of a soap opera, there would be complaints that it was too far-fetched.)
I'm doing the cathartic-waffle again. I don't post for ages, and then I write War and Peace.
Physically, the brain is a delicate and complex organ, the recovery-time isn't weeks, or months, it's years, and a lot of it is learning to adapt, to work-around. We don't 'look' disabled, because our damage is internal, so other people don't know, unless we tell them. Emotionally, the impacts are vast, and vary from person to person, it's a bereavement of sorts, the loss of the 'old' version of ourselves, and that takes some adjusting to. Two and a half years in, I keep having little waves of nostalgia/sadness for the 'old' me, remembering things that I used to be able to do effortlessly, it's like finding letters from a dead lover, or smelling a scent that reminds you of someone, except you're not dead, just different.
Don't do what I did. (You're still in angry-phase, and are now shouting "Don't tell me what to do!") I tried to out-run some pretty significant brain injuries, I tried to tell myself that I'd be exactly as I was before, if I just tried hard enough, then I constantly beat myself up about not achieving my unrealistic targets. You will learn how to manage the fatigue, and you'll find your own strategies for dealing with the anger, those phases do pass. You'll get some of the 'old' you back, and you'll learn to work-around the bits that come back a bit different, it's human nature, we evolve, necessity being the mother of invention and all that.
I thought I could do it all on my own, I tried to sweep my disability under the rug, and 'get on with it', and now I've tripped over the rug-lump, and landed square on my arse. (On a positive note, I found a £2 coin under the sofa while I was on the floor. Humour is my primary coping strategy.)
'Help' was the ultimate four-letter word for me, it stuck in my throat, unlike all the other ones you're not supposed to say in the Post Office. Headway are the experts, but this forum is awash with lived experience. We don't always all agree, we're human, we have good days and bad ones, and no two of us have identical experiences. There is help here, and Headway will be able to point you in the direction of locally-available help.
Very timely for me, too Dazedwp I'm FINALLY in the middle of the formal neuro-psych assessment that should have been done ages ago, and I have an appointment with the mental health assessment team tomorrow morning. (I'm also having a rough time, and looking back at the words I wrote above has given me something of that calmer sense of perspective that I'm so able to use with other people, and get a little bit lost trying to use on myself.)
Reading that back again does make me think "What a wally, trying to do everything!", but it's what I did, what I'd always done. Next steps will be trying to get my GP, my Neuro-psych, my two advocates, my social worker, and whoever I end up allocated to on the mental health team talking to each other. (I used to complex care-plan as part of my job, and can see that all of these people working in satellite around me are playing catch with me like a hot potato, nobody wants to end up 'holding' me, but somebody's going to have to...)
We peak and we trough, it's unfortunate that we're both having a bad time lately, but it isn't always like this...
I hope things go well for you. This whole thing is such a kick in the goolies.
I tried myself to go back to work about 2 months back - big mistake. I am also now finding myself having to explain to my go why I can’t go back to work when my fatigue knocks me out for two days after doing 2 hours of work
It’s all a big mess to be honest.
Glad you are at leat making some progress. I hope you get the right people to help you. I’m still st the start of the journey so hope I have it easier than you.
Looking at my situation pragmatically, it can't very well get any worse, so 'the only way is up', and all that jazz. I mis-managed myself, but I've also fallen through every hole in the supposed safety net, and professionals are starting to grasp that me having my shoes on the right feet (and them both being from the same pair) doesn't actually mean I'm fully functional.
I had a kick in the knickers earlier, my son had to fill in the relative-part of a questionnaire for neuro, and he said "This is really hard, because I can't remember how you were before." I managed not to cry until after he'd left. *I* remember how I was before, and all my adaptations and work-around strategies are bloody exhausting. I'm only still awake now because I'm anxious about getting lost on my way to the appointment tomorrow.
Thanks for your reply. The last time you replied to me I also found it very useful. You do seem to grasp me pretty well The whole journey is very scary and not knowing where I'm going to end up is hard for my controlling nature.
I'll keep on posting as I go on. I really appreciate your reply.
I can't say I'm right, or wrong on it, just that I mis-managed myself, and don't want others to end up where i am. I'll come through it, the only thing I really have a grasp on is myself, and even that's sometimes tenuous. Slow and steady doesn't suit some of us, but that's the way brains go, whatever we think we 'should' be capable of. Hang on in there, I spent the first six months or so furious at everything, it passes. (Then some stinky oik leaves their trolley diagonally across the aisle in the supermarket...)
I too sustained a brain injury as a result of surviving cardiac arrest. Before that I normally worked 10-12 hours day 5-6 days per week in my own business and just pushed through things until I got them done. Now 3 and half years post event, I have learned to stop and rest when fatigued (mental, physical, or emotionally), even it's only been ten minutes. Because if I try just pushing through things it creates a two to three day recovery period. Maybe the bigger thing has been accepting my life as it is now the new me and that how I was before is gone. It has been much less frustrating getting to that mind set. This isn't to say that I don't do everything I can to get the new me to where I want to be. I just go about things in new different ways. And accept the things I can't seem to do anymore as being gone , at least for the present. Maybe I can do them down the road. I am always looking and trying new therapies and methods to deal with the effects of the brain injury and I've never given up. I figure I'm here I might as well make the best of a crappy situation. My wife has been a champion through this in spite of my often times impossible behavior. I find myself apologizing to her and thanking her for all she does for me constantly. I feel so sorry she is left with this new lesser version of me, like she is getting the short end of the deal. I'm so sorry you're having to go through this too. I feel like I really can relate to what you're going through and wanted to let you know I'm here if you have questions or just want to communicate about it. Wishing you well going forward. Advice rest and rest often. One thing I'm doing currently that seems to help tremendously is what I'll call the Dopamine challenge (which the lady who developed this overcame her brain injury and PTSD by doing it): Take the actions described below, every day and see how life changes for you. Many times when we’re feeling less than we'd like to be our system is running on norepinephrine (fight or flight in an extreme and sometimes weird manner). Therefore, the first step, to get us out of running on norepinephrine is by switching our brain chemistry to running on serotonin and then dopamine. The unusual thing about this is we can actually change our brain chemistry without drugs, herbs, or other potions. The actions I now describe will move you from operating from norepinephrine to serotonin and then to dopamine, where you are in your control power center. To move from norepinephrine to serotonin do one or more of the following - Lie on the floor for a few moments, or do some light fiction reading, or listen to soothing music, or do some coloring or work some simple puzzles, or go for a mild walk outside.
Then to move from serotonin to dopamine do one or more of the following: Read educational or philosophical books, or listen to upbeat music, or laugh, or watch comedies, work more challenging puzzles, or do strength exercises or tai chi, or get a massage, or do creative projects, or do things with your non-dominant hand, or learn something new, or go someplace new.
To take it one more step –
1.Make a list of 10 things you really like to do.
2.Next, narrow that list down to your top five.
3.Then your top two
4.Finally pick your top one.
5.Then write a story describing that person who is doing that thing and all the things they would be experiencing while doing that thing, including the qualities that person has.
a.Answer the question – Who would I be if I lived this quality 24/7 (Write this from the perspective of this character.)
If you have questions, please feel free to let me know. There is actually one more part. When you're ready for it, please let me know and I'll give it to you as well.
I have just re-read your post and will try it out. I’m more mentally capable now than when I saw this the first time
How is your fatigue levels now? I’m am petrified of living life like this. Constantly having to bend he knee to the dreads fatigue and then mental effect that this has.
I manage my fatigue levels better. I still can get fatigued at times when I overdo things too much. One challenge is being consistent at doing these things for me.
Oxygen is the important thing the brain needs inorder to heal itself.
There are some sorts of oxygen therapies out there that I know little about and I am guessing they are quite costly too but I prefer to look toward nature where it is more affordable and at times, free. All nature should be free really but we live in a heavily corrupt world so that is not gonna happen anytime soon.
Anyhow, I have looked more into essential oils and frankincense particularly is very good for the brain. Frankincense essential oil sends oxygen to the brain.
The more expensive the oil, the better the quality. I get a mid range oil that's not so costly.
You can either inhale frankincense straight from the bottle or put a drop or two in your hand. Cup your hands over your nose/mouth and inhale away.
It has helped me with my fatigue. I am an artist and before the oil my head used to feel real thick after a session of drawing. After a few weeks of oil I hardly get that at all now!
I still inhale from the bottle or hands every now and then and when I go to bed I put a few drops in my cold air diffuser so that I get to breathe in frankincense when I sleep.
I'm not a religous person but I do wonder about christianity sometimes. Why did one of the three wise men give frankincense to the baby jesus?
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recovery after 19 months
I still get moments of frustration with my friends TBI after 2yrs 8 months.
7 months since brain heamorrage
Fatigue 18 months after TBI
18 months post brain haemorrhage and feeling terrified most of the time.
