I'm a bit stuck with who I can talk to about brain-stuff, I don't really use Facebook that much, and Twitter isn't the type of place to really spill your guts. I make regular blog posts about the ABI, and the recovery process, but, a bit like Facebook, it's like shouting into a welly-boot, essentially pointless, and with a probability of being arrested, or sectioned.
I don't have any real friends, I have one, but he was with me when the aneurysm ruptured, so I don't want to dump on him. I may already have alluded to the fact that my marriage is dead, I just can't afford the funeral. Throw in the complicating factor that the husband's mother died following a brain haemorrhage, when he was 11, and his stock response to me feeling in any way unwell is "I'll strap you to the roof-rack, and take you to hospital." I'm isolated, and it's my own doing, I'm not a very sociable person, and I was sick of 20 years of being dragged around as his groupie/lackey/arm-candy, so I just stopped going out. I was irritable BEFORE the aneurysm ruptured, I just had a bit more inclination to cover it up, and keep up appearances. There's no appearance to keep up, I had a traumatic medical emergency, and I'm still a walking, talking, sleeping, crying, living git.
I haven't done this on here before, because I know that a lot of you are living with much more severe impairments than me, and I didn't want to appear to be crowing about how lightly I've gotten away. My impairments are surmountable, but I've always been the tenacious, relentless sort of cow who just gets on with things. I gave birth to my son without pain-relief, because the hospital insisted I "Wasn't in labour, it'll be hours yet..." six minutes later, they had to play catch. I wandered around for two weeks with a broken bone in my hand, insisting it wasn't broken, because I could still do *this*. (*This* being all manner of things that made colleagues cringe, because it was obvious that the bone was broken.) I'm a cast-iron-cowbag, and that's part of the problem. 'Being careful' doesn't come naturally to me, four-months post-surgery, I'm back at work full-time, walking an average of about 9km a day, and doing everything I used to do, just with a whacking great scar on my scalp, and two areas of hair that have grown back in such a way that no matter how many hair-grips I use, I still have a sort of alfalfa-sprout sticking up.
See, I'm doing it again, I'm making light of it, and that's why everybody thinks I'm some sort of miracle. I'm not, I'm a statistical anomaly, but I'm in no way a miracle. I have a pretty much constant headache, I've lost part of the sight in my left eye, and the left side of my neck REALLY hurts, because I'm having to turn my head much more, to compensate for the reduced field of vision. I've lost some of the sensation in my right leg, not the functionality, but it does feel like I'm dragging a dead-leg most of the time. What's wearing me down, and what I've tried to explain to colleagues, and family, is the constant hyper-vigilance. Him saying he'd knock me out, and strap me to the roof-rack is offensive, but, what I'm doing to myself is worse, I'm playing 'what if?' with every ache, pain, and twinge, and I'm going to drive myself mental with it. I've always been able to ascertain what's wrong with me, and, through a combination of kitchen-witchery, and standard pharmaceuticals, I can generally sort myself out. This is different, though, there are two remaining aneurysms in my brain, I'm going for an MRA at the end of July, and then a further appointment with the Consultant around four weeks after. (Assuming he's not on holiday, or counting the stripes on his pyjamas, I didn't get my initial follow-up until the appointment had been cancelled and rescheduled 3 times.) I am 'mindful', I am self-aware, I know what's normal for me, and what's not, but I'm sort of running out of ways to tell myself it's OK.
I'm just venting, I'm in a strange place in my life, with Facebook telling me I'm a miracle, annoying work-people telling me I 'should' be thankful, and the husband and his family assuming that everything is now sweetness and light between us. It's not, he woke me up at all the right times to take my medication, but he still can't manage to put his dirty socks and pants in the washbasket, or his dirty plates in the sink. I'm not his mother, and I'm very close to screaming "It's not MY fault I survived!" at him.
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I wish I could put into words what I want to say.. I can't. I understand how you feel.. I am very similar. As a sprightly 18 year old, I drove myself to hospital one handed with a dislocated elbow (it was the left side too).
I find myself analysing every little pain, tingle, numbness, seizure, vomiting episode, drop attacks, headache in a different place, worsening headache, change in vision etc and automatically think that it's something "acute" going on inside my brain..
Nobody understands.. I feel like I don't know the people closest to me (mum, dad, brother, partner) .. Hell I don't even know myself! And I most definately have forgotten how to "human" .. All these weird social rules, cues etc ...
I'm in my 30's and imagine my horror when it was pointed out to me.. By my parents.. "That when you are hungry, one does not simply open the fridge door and crouch like a feral animal and graze and gorge themselves until they are full, that's what plates are for" ... I didn't understand and I probably do it all the time..
There's a fair chance that I AM going mad, I just need to keep a lid on it, and be functional. I'm having a crappy day with the vertigo and headache today, one of my eyes has gone 'spangly', and it doesn't usually do that unless I'm really over-tired, which I'm not, not physically, anyway.
I just needed to vent, I suppose, and that's what I did, the MRA, and Consultant's appointment will let me know whether the two remaining aneurysms will be treated, or just monitored, If they're going to be treated, I'll pack my OWN underwear and clothes for the hospital. If they're going with watch-and-wait, I might end up back on the anti-depressants, which I hate, because they make me borderline-bovine, but it's weighing up the anxiety burn-out against the vacant docility that the anti-depressants usually give me.
I'll get through it, I've come through worse than this, but thank you for letting me know it's not just me.
Emma, I often kneel by the fridge and eat a selection of items just before I am due for my period ! I have always done this at this tricky time of the month, the urge is instinctive ! : )) x
Vent away. Surviving bi AND being self aware can be a b***h. On top of that you are playing the waiting game at the minute and how frustrating is that?
Would it help to take up a hobby that needs you to use your abilities and focus?
Basically I just want you to know that we care and are here for you.
Thank you- I'm back at work full-time, full-duties, after a phased return on restricted duties, so my daytime brain-space is pretty much accounted for, it's the quiet, processing time that I'm finding hardest. Trying to keep busy, but a tiny bit resentful of the expectation that I will do all the housework, because I always did before. It's a catch-22, that I don't want to be perceived as weak, but asking for help is not in my nature. Sometimes, I just need to write it down, look back at it, and tell myself to get a grip, and get on with it.
Brain fatigue it draining even if the body is feeling rickety boo.you need to sort yourself out with down time. I shut myself away in the bath with a book or take my dog out for a walk.
I get very frustrated when the other folks in the house can't be bothered to do the simple stuff that drives me to insanity.
You are still very early on in recovery and you should be kind to yourself. Brain injury Is a hidden disability so others don't know what it's like, can't imagine the difficulties that we face. Please don't build up your armour, admit your new reality to allow others to make life a bit easier for you x
That, precisely that, the fact that I'm masquerading as physically OK, so I can go to work, and not be stuck at home, digging his socks out from down the side of the sofa! I won't stay at home, because work is where I exist, but then I come home, to a sink full of dirty dishes, from a meal I haven't eaten, and suddenly I'm unreasonable, for washing them, when he has said he will, and I know I'll find them coagulated there in the morning.
His family have a load of women-who-don't-work, or have part-time, menial jobs, so they can still iron underpants and such. I'm not that, I'm not that at all. The marriage was over well before the haemorrhage, but now I'm stuck in limbo, waiting for the scans, the follow-up, and the potential of more surgery. I'm not happy, but it was never about me being happy, as long as he was happy. Stupid girl, I did it all to myself.
Maybe time to call his bluff. Cook clean your own stuff and leave his. It won't lastlong. It drives me insane as I like order. I called his bluff and went on strike. We now have a cleaner once a week for 2 hours. It is a god send. I'm as stubborn and made a rod for my back too.
I still say to my other half and kids if they don't like something then they should get on and sort it but I can't stand to be in a shite hole of a house so I do end up getting on with it.
like your humour and its the thing being back to work and just want to tell them STFU when they start whinging about a little sniffle,headache or I'm bored.
I swear the next person who is near me when they say I'm bored I'm going to bloody shoot them.....lol
I've never been one for holding my tongue but I'm worse nowdays and I don't even bother discussing how I feel everyday blah blah blah
Nowdays I do "what I feel I can do and no more" especially when some of them don't do much in the first place apart from moan,complain and bitch,like moaning about their hours every week so a few times I've turned on some and basically said leave the job if you feel like that they soon shut up and move on so at least I've given them something else to moan and bitch about...
I was an outgoing party animal and sociable not forgetting an ex holiday rep nowdays its different as they say the old me and now the new me but so many people don't realise how we feel on a daily basis as from the outside I look like nothing has happened, you can't even see my crainiotomy right side scar and unless you looked bloody really close up the scar behind my ear.
Also its like every twinge,ache and head/ear pain you try not to think oh no not again it doe's sometimes drive you mental but hey we are still alive and kicking off
Although I don't have structural brain problems like yourself I was quite anxious for a while after my illness. I was told suspected Encephalitis at first.After a lot of the freakier stuff resolved I was left wondering if my immune system was just naff, if I had helped cause it by overworking or if I had a possible underlying medical condition that made me more susceptible. I have to say that if ever I wake up with a stiff neck these days I check for all round neck mobility as a precaution ! With time, I am less perturbed by catching a virus now - I've had a few and come through without any further odd follow up .I know the chances of anything crossing the blood/brain barrier and going walkabouts in my head is very remote but it still begs the question of why it may have happened in the first place !
You do sound a little like me in your work ethic - I used to be Wonderwoman,windmilling through chores, working long hours, doing allsorts of extras for demanding neighbours etc.No time for self. I am wondering if your desire to get back to 'normal' so quickly is not too much,too soon.Whilst,symptomatically you seem to have reasonable function ( though clearly not without challenges, which take more energy to work with, please bear in mind ) there is a special kind of fatigue that is experienced by many with brain injury.It is not the 'Oh I am tired' variety, rather the overwhelming 'I've been hit over the head with a shovel' type !
It was 6 months before I was fully alert and able to move and balance well enough to go back to work and I'm still on greatly reduced hours 2 1/2 years on.
Regarding the housework problem, I feel that it is a case of shared responsibility.
Anyone who works full time should not be expected to be solely responsible for all the house chores in my eyes and anyone recovering from the effects of a brain injury should be afforded double the respect and help .I have had to become quite strict with house rules - if you want laundry done you put it at the foot of the washing machine, I will NOT be rummaging through piles of clothes on your bedroom floor.Nor will I be picking up newspapers dumped after reading,putting tools away out of the rain after you use them,retrieving wet towels off the floor left to fester etc. All these tiny but annoying things take my time and energy away from me doing other important stuff or simply just resting as I need to between activities.
So, maybe time for some new house rules. Also maybe time to review how you are doing personally, whether fatigue, of both body and mind is affecting your energy and mood.What might help to re energise you - a short nap, a change of task, a chill out to music, a stroll in the fresh air etc.
I can't cope with Facebook either - I just can't keep track with the pace and multitude of people ! Glad to see your sense of humour - I find it helps : )
Kind regards, Ex Wonderwoman, Angela x
Being angry and venting is vital to us and we just need to learn to be gentle on ourselves. We are survivors, which means we must be tough. I am now so intolerant of people who moan about petty stuff. This forum is wonderful to find, as I have realised that family, friends and the NHS soon lose interest in a BI, although it is a daily, hourly battle for us all. My ABI was years ago (TB Meningitis) and I accept now that it won`t just "get better" and this is the new me. Learn to make peace with yourself and do whatever your head tells you it needs. I avoid noise (I hate going outside at school run time and busy buses) but love certain music (although my musical taste completely changed) walking down by the sea and going to bed early sometimes. We all just need to do what is right for us and make friends with ourselves. We have done nothing worse than survive, so never apologise for how you are. We may not have a stick, a dog or a wheelchair, and that means people don`t always understand. but a bit of us is broken, missing or cracked and I now no longer mourn my lost memories, I have let them go, they belonged to someone else. My marriage ended, life has been unbelievably hard and I used to say "Why me?" but when I started to say "Why not me?" is when I knew I had accepted it.
Hugs and best wishes to anyone with a BI, whether recent or long standing.
It would have been very easy for me to fall into my own belly-button, and refuse to leave the house, 'just in case', I'm resilient, though. I was having a bad day yesterday, with the vertigo, and a vile visual disturbance, stuck in the minefield of just getting on with it vs putting my hand up, and saying "I'm not well today."
I have a son doing his A-levels, so it's incredibly important I keep myself well, as not to add more pressure to him. I'm a sod, but I'm a survivor.
Sounds almost exactly like the way I was, what I would suggest is getting some good neuropsychology, and by good I mean pay for the best you can afford, not the NHS numpties. This can and will change everything if you put their advice into action. probably like me you are sceptical, but that is just the cast iron cowbag thinking. If you can get past the cow and take the plunge eventually the cow will turn into a milk producing grazer. Trust me I'm a survivor from myself.
Cast Iron Bull. That's me, not what I'm talking lol.
Thanks, but I don't want to be a milk-producing grazer, I've done that for 20 years, and, if these little blood-bags in my head are going to kill me, I'm not spending whatever time I have left picking his socks out from down the side of the sofa, or playing endless games of "Have you seen my...?"
He's a grown man, I appreciate that there are complicating factors, but if I do die, he's going to have to know where his own socks are. (Probably down the side of the sofa, dirty animal.)
The rage isn't new, it's just that, for the last 20 years, I've pushed it under, to keep the peace, and hated myself for it. I'm not planning to die, but, if I do, I don't want it to be on a self-loathing note. I am tired, I am in a lot of pain, and I don't see why I should play nursemaid/cleaner/finder of misplaced spectacles to a grown man, who just lounges on the sofa, passing wind, and scratching himself, expecting the world to revolve around him.
I never really was marriage material, I was just too stubborn to prove right all the people who said "It will never last, you're too young."
Gotta be honest and bear in mind I am a man, your husband sounds like an arse and is behaving more like a child than a man. Debilitated as I am I still try to pull my weight around the house. kick him to touch cowgirl
I know I'm ruthless, but that's how I'm still here, there have been various points in my life where I might not have been.
He is like a child, because his Dad and Step-Mum treat him as such, I made the mistake, when I was 18, of thinking 'doing everything for him' was part of a healthy relationship, so, in a way, I've compounded the issue of him being nearly 50, and not being able to find his own arse, with both hands, and a map.
I'm two hours into cleaning the house, because he had a poorly tummy yesterday, so I couldn't vacuum, or change the bedding, due to him sleeping all day. I'm still compounding it, but, I can't sit on my bum, and stare at the mess that the in-laws 'tut' at when they come around, because their little precious blue-eyed boy doesn't know how to work the vacuum cleaner, or the washing machine. x
Yup took my wife years to train the twat outta me that had been created by my parents. Men are like dogs easily trained when young, trouble is your stuck with an old one, and as we who have bi are all too aware life is way to short to put up with other people's crap. If you want to change some things in your life, you need to change some things in your life.
Sorry I really despise it when men take advantage of the good nature of their women. It's one of the most hated characteristics of my own nature and I constantly strive to suppress the idiotic upbringing I had.
I'm pleased that you're trying, and doubt that you're actually a twat. The times we've stayed at the in-laws, she's like Mrs Doyle, I'm not as heavy as her daughters, so she's constantly trying to feed me, she also does the thing where, when you take off an item of clothing, she's washed, dried, and ironed it before it hits the bottom of the laundry bin. She's retired, she has very little else to do but housework, and ironing hankies, and underpants, and such. I work about 50 hours a week, against the husband's 37.5, but he doesn't 'do' housework.
I'm whining again. It's not productive. My son can find the laundry basket, and work the washer and the Hoover, he can feed himself, and wash up afterwards, he's a self-sufficient creature, he's not going to be a farting, scratching burden to some future partner.
You can, Gaia. You can have a migraine and have to lie down for 48 hrs....I do it all the time, (for real) and I swear it is the only time my husband remembers where the washing up liquid, laundry basket and iron are... it really is so very wearing carrying all the angst and anger around, and whilst venting here is 98% effective, therewill still be a remaining 2% that will start to grow again, fed by the composting sock under the sofa.... The only way to deal with that is to give yourself a break and force the duties in another direction. If like me you find that a virtual impossibility you may find your mind/body/spirit creating the space it needs of its own volition.
Urgh, before the magic Triptans, my migraine used to have me in a similar state, not helped by the husband saying "Don't be stupid, how can a migraine mean you can't speak?", or the father-in-law saying "Are you on drugs, lass?" I had a bad spate a few years ago, when I had 20+ migraines in a three month period, I was essentially useless.
I know I'm just spouting, but it's safer here, with people who have some understanding, than in the office, where I tend to get "Just leave him!"
I've done all the housework again, because if I don't do it, it doesn't get done, he's cut the grass, and I think he expected some sort of medal. It's tiring, I don't want to be in this situation, but, until I know the prognosis for the remaining aneurysms, I'm in limbo.
You are and you aren't. You are in limbo in the sense that until you get to see someone who will tell you whether they will operate and when, you don't know what the future holds. I am in that position too.
But you are not in the sense that because you are wandering about with a bloodbomb in your brain, today really could be the last day (and I know all the stuff about odds being x to 1 where x is always the thousands or millions...but if you are that one in a thousand or that one in a million those odds don't mean diddly squat). That can give you the impetus to say 'whatever time I have left, I am going to live it how I want to live it'. For me that has meant being prepared for the worst eventuality by getting all the paperwork sorted, lining up various ducks (i.e. projects I am involved with) and either shooting them or passing them to others; and deciding quite early on that if some people are going to behave in a childish way I am going to walk and let them throw their strops all by themselves. Because life is really too short. Really really really. As you and I and many on this site know in a way which others only think they do.
It has been against my character in some ways...but then what is character if not moulded by experience, and our experience has now included a close reminder of our own mortality. And if that causes us to be a little more me-centric no wonder. For some of us I suspect it is actually a healthy tipping back of a balancd mis-set years ago.
This may all sound a bit odd coming from someone who should be saying 'love thy neighbour' to you but it isnt. We can't do that when we are trapped in a place of angst, frustration, anger and fear, bound up with the demands and desires of others. We need to have our own place and free space for our own inner healing of those feelings before we can deal in the best way with the challenges of those around us who need our love and attention, even if that is our love whilst we walk steadfastly away in order to preserve our sanity and/or lead our own life.
I guess what I am trying to say is don't let the bloodbomb be another factor which paralyses you in a situation which you patently feel is unhealthy and damaging for you. It can equally serve as a catalyst for change in your life -and you don't want to wait for it to go off for that change to happen, as those may not be the changes you had in mind...
I will keep you in my prayers Gaia - I will ask that you grow and thrive as we are all meant to. Maybe the bloodbomb is the seed from which a new life will sprout for you... x
That, my dear, is why I chose the 'rising' as the second part of my user-name. Gaia has been recycled in various forms, in various forums, but what can one do when the world collapses in ashes but rise?
I've always been separate, always been a bit distant, and detached, maybe the new "I'm not doing that!" attitude is as a result of the little medical issue, but the rest of it was always there.
Thank you for your support, and your wise words.
Yup. I became a single parent when my marriage ended after the ABI. They are teens now and I have dedicated my energy to getting them this far. Now I plan to spend what time is left living for me much more. We only get one shot and I have beaten ABI and cancer so now I plan to be an outrageous old lady!
I'm concerned that 'other' people think it's the trauma/medical issue talking, but the marriage has been over for years, we had a discussion 18 months ago about staying in the same house until the child finished his A-levels. Then he got all clingy after the medical thing, which he knows freaks me out. I accept that he has his own issues, but I have offered him clear pathways of support in the past, which he has ignored, and chosen to carry on living as a self-obsessed 49-year-old brat. I've spent all morning cleaning the house, because he only 'tuts' about the mess, doesn't actually do anything about it.
I'll get there, I'm not sure where 'there' is, but I'll get there.
The fatigue, the partial blindness, and the pretty constant vertigo and pain are new, the situation as regards the state of the marriage isn't.
I'm gaiatheorist on Tumblr if any of you want to check.
Yeah, the paranoia, and constant 'proving myself' are new, too.
Think my marriage was pretty ok, I had our second child just before getting ill. It was the lack of support when I came home after 5 months in hospital, total lack of understanding what a traumatic time I had been through and that I had completely changed and it wasnt just temporary, plus being told how I `should` be behaving. SHOULD? I loathe that word. When, and only when, you have had exactly the same experience as me will I listen to your `advice`. It is sometimes easier to be alone after an ABI, it was impossible for me to be what he wanted me to be. I had retrograde amnesia so I no longer remembered half my life. How can you be expected to just pick up where you left off? Our memories shape who we are.
Wow! I get it. Had some of your same thoughts at times. Sometimes when people say you're lucky or so blessed you survived. I think and even sometimes say REALLY, as many times I don't feel that way? I think its healthy to be able to express what we're feeling inside and just get it all out. We get it here, as we have been through something similar to you. Others who have not been through it have a really hard time understanding what we are going through and even though they care, many times end up saying and doing things that just set us off and we get angry about it. I wish it could all be different. So sorry for your loss. I wish you the best in your journey.
My mouth has always found trouble for me, which is why I type a LOT more than I speak.
"We thought we were going to lose you!" (I'm not a dog, a teddy-bear on a train, or the TV remote.)
"You're so LUCKY, it's had no effect on you at all!" (You're not in my head, you don't know what it's doing to me.)
"It must make you want to change!" (It does, but I don't want to take up salsa classes, or join a prayer-group, thanks.)
"Your husband looked shocked when we saw him." (Yeah, he moved back in with his Dad, because he can't wash his own pants.)
"Are you sure you should be doing that?" (I've owned this body for 38 years, I know its limits, don't try to tell me what my limits are, based on your limits.)
"You look angry, is that good for you?" (No, but it's worse for YOU.)
"Do you really think you're ready to go back to work?" (I've been back at work since 8-weeks post surgery, work is the only thing keeping me sane.)
If I didn't laugh about it, I'd almost certainly bite more, and then I'd have to fill in the accident forms, even though it wasn't strictly an accident...
Just tagging on to my own rant, because it's 'safer' here. Bit of an issue at work yesterday, when I had to ask someone for help getting an unsuitable item down a few stairs, my muscle-strength isn't back where it was, not by a long way, and I have some old nerve damage in my left hand. Combine that with the vertigo, and general instability, and I deemed it safer to ask someone to help me shift the heavy item down the stairs. I then asked her to leave me to it, because the only way I'm going to re-build my strength is if I'm 'allowed' to use the muscles that have wasted, through the enforced inactivity. Safely, I understand that, which is why I risk-assessed the situation, and asked for help. I'm an idiot, and could have avoided the whole after-mess by using the lift.
Anyhow, I then had this woman-who-means-well stapled to me like Peter Pan's shadow, insisting I "Couldn't" do the thing I'd been asked to do. Red rag, bull. Don't tell me what I can and can't do, the fact that I then formulated a solution so I wouldn't have to place myself, or a child, at risk of physical harm as a result of my limitations aside, it's broadly up to me what I can, and can't do. After formulating the solution, which was safer, and more procedurally acceptable than means-well-but-doesn't-get-punched-in-the-face-enough's plan, I informed some managers, who were pleased with my resourcefulness, and perhaps slightly bemused that I wasn't doing what they had originally asked me to do. The killer was saying "I won't do *that* because the reason for my absence was a brain haemorrhage, and I'm not as physically capable as I was before." (It's not 'public' knowledge, only those who work closest with me, and the 'big' boss know why I was off.)
See, I AM doing the sensible thing, it just sticks in my throat, saying "I won't..."
There's a niggly voice at the back of my mind, telling me to get used to it, but, at the front of my mind, is a bigger voice, saying "Do what you can, you could be in a MUCH worse position." So, there you go, that's where I am, I'm three hours into housework-and-coffee, because if I don't do it, it doesn't get done properly, and sitting in the armchair, seething about the socks-down-the-sofa achieves nothing. The 17-year-old has brought down his laundry, and put it in the machine, and is off on a school trip this morning, the husband has set aside time to do the grocery shopping with me this morning, but that means sitting in the car with his aftershave-stench, and his 1980s synthesiser music blaring, so I've ordered online again, I have more disposable income since the operation, because I'm not drinking as much alcohol. That's what I do, I work around obstacles, and, in a sense, that gives me hope that I'm not lapsing into depression about the state I find myself in. I will get 'better', and I will get stronger, I just have to accept that, even if I do have 'Wonderwoman' on my knickers, I'm not.
I might wear the Fraggle ones today, and dance my cares away, doo-doo.
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What is reasonable?
Another way to explain..?
Took half day at work due to break down
