Help please I am new

September 12 I had subarachnoid haemorrhage of the brain and an aneurysm of carotid artery. Have coils inserted. Have little tolerance of noise, memory problems and taste buds terrible. My problem is that I do not think of myself as being ill, and will not slow down. Is this how I should be or should I be more gentle in what I do please help?

23 Replies

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  • Hey Johnnyreb, welcome!

    Wow, you have been through the mill there, I'm sure you will find talking to people here a great help.

    Well, I've just been answering someone's post about noise.

    Generally here, a fair number of people find noise really disturbing.

    So you are definitely not on your own. Memory too can be a problem...although as time goes on you will find little helps and tricks that you can use .

    I tend to write things down a lot more these days than before I got a wonky head.

    As for taking it easy, well I think I would avoid doing the bungee jumping for a few more months if I were you.

    You are on the road to recovery, it takes a while ,and it is often bumpy and sometimes we slip back but do what you feel up to.

    Some days that might be a bit more or less than the day before.

    You have been through a lot so don't expect to be 100 per cent straight off, be kind to yourself but if you want to push it a bit then as long as you feel ok with it...see how it goes within reason....

    Kind regards and welcome..

    Nan

  • Hi Johnny and welcome.

    In many ways you are not ill as most of us understand it.

    The truth is that you have a brain injury/damage and that is a very different thing.

    To help you regain the most you really should slow down.

    It gives your brain a chance to heal and begin to make new connections. Your brain is a wonderful thing and capable of amazing you but please work with it and give it a chance.

    Love n hugs

    Xoxo

  • Well said!

  • Hi Johnny, welcome :) fully understand how your feeling. I have similar a injury to yiu and experience much of what you describe. Things do improve with time, but please try to find a method of activity that helps you to slow down and relax. I'm afraid I haven't succeeded in this yet :)

  • I have tried to get back to my knitting, and an finding a little at a time works. As for my patchwork and quilting, it is the noise of my sewing machines starts the headaches. Am not going to give up just yet

    I have a very caring husband who does most things for me. I know that I need time to heal. Just thank you as I now find there are many people like me.

    Thank you

  • Hi Johnny

    Welcome, and and hello. Others have said it all in terms of advice, but I 'borrowed' my mum's sewing machine and made cushions and bits and bobs to stop myself going completely crazy after losing my job due to my TBI. A large number of have noise sensitive, I.e auditory overload. I recommend using ear plugs to soften noises, and certainly helped me in busy supermarkets and sewing machine. I found sewing and making soothing, and can get lost and not think of any thing.

    You mentioned not slowing down. Everybody with brain injury is different, but I have to slow down or my BI symptoms cognitive and physical symptoms worsen. I can also become more 'emotional' if fatigue, but five years on I can overdo activites , and pay for it next day, and not fit for any thing.

    Be kind to yourself, you have certainly been through a great deal. Have you a local Headway group near you?

    Keep us posted xx

  • I have joined the local Headway Group and find them really good and helpful. Learnt more from them than anyone else until now. Hate not being allowed to drive, as had to surrender my licence for other health issues.

    Just have to keep going.

    Thanks for your words

  • Hi Johnny ! I too had a coiled SAH and was hospitalised for 2 months. I bought a brand new yellow bicycle when I got home as a clear message to myself & everyone else that I was a survivor ---------------with knobs on !

    I soon learned that fatigue, poor balance, memory issues, noise intolerance, corrupted taste, dizziness, irritability etc---------------- were now part of daily life. :o

    It's really up to you Johnny ; to get the best from life you'll need to test out how much you can push yourself. Push too hard and there's the danger of burnout, something I regularly practice.

    My manic periods automatically balance themselves out with complete exhaustion lasting 24 hours or more.........energy inefficient, but personality can be hard to keep in check. ;-)

    I hope you'll find an acceptable balance but, with all the will in he world, it usually comes down to trial and error and TIME ------ in your case much, much more time !

    Stay around. I've found, after 5 years, this is the one & only place to come where people really 'get' you------------------ Cat x

  • Hi Jonny,

    I also had an Sah and had the same issue with not slowing down, apparently it's fairly common. For me it made things much harder in the long run as I just got more frustrated and confused, frantic and lost as the first couple of years went by. Saying that you might be quite happy being frantic! It's a strange reaction from the mind as the brain really needs rest, it's mostly to do with trauma. I put together a website with all my experiences and learning in which might be of interest to you, braininjuryftp.com all the best with it

  • hi

    welcome not much more to add I am afraid

  • Good morning Johnny. I suffered same as you. Don't try and hurry up or rush only time will heal. Your feelings and thots can be a bit erratic at times. So take time sit and gather what's on your mind try and chat with someone you know and let your feelings out don't hold on to them. Mark

  • I can only echo what others have said here. I also have difficulty with slowing down and I sometimes think I thrive on a hectic lifestyle. But it is really important to take it easy and get some time to yourself sometimes too. I had a stroke mimic earlier this year because I cannot relax. But the occupational therapists that assisted me taught me that everyone needs to switch off once in a while with some deep breathing exercises. Best of luck.

  • Welcome, Johnny.

    You're not 'ill', but you are repairing. I remember being FURIOUS with people telling me what they thought I should and shouldn't be doing in the early stages, I'd just survived a massive brain haemorrhage, who was anyone else to tell me whether they thought I should be climbing on 'that', or fixing 'that'?

    It's a double-edged sword, people who care about you will try to get you to slow down, and moderate your activity, because they're frightened, but, with our rummaged-about-in brains, 'we' can be a little bull-headed about what we want to do for ourselves. You're a couple of months into a long journey, at the start, I was still very much running on the can-do adrenaline, of having 'beaten' a significant brain injury. Truth be told, I was running about like a Pound-shop version of Wonder-Woman, and I WOULD NOT be told...

    You'll find, by trial and error, what you can consistently do, and, after a while, you'll realise you're automatically building in work-arounds for the things you can't do in the same way any more. There's all the literature in the world about 'reasonable adjustments' for disabilities, but most on the forum will agree that the adjustments just sort of creep in, the 'new normal.'

    Listen to your body, eat well, sleep well, and you'll find your new normal.

  • Great post!!

  • Thank you. I can only speak from my own experience, but, in hindsight, I was an absolute horror, and probably upset people by growling "I'm not an invalid, you know!", when they'd seen me shaved and intubated, I wasn't 'there' for that bit. We're all different, and all repair at different rates, to different extents, it's a learning curve, there's no textbook. (If there was a textbook, it would say "DON'T attempt to re-wire your own lights because you're too pig-headed to ask for help.")

  • Do you know Gaia, I wish you'd write about your experiences more, or do you? Have you a blog? I absolutely love your style of writing? You are a writer are you not? If not, then why not??

  • I have a manuscript ready to go, I'm just doing my usual picky-checky thing first. Words are my thing, but I have to take care to balance them.

  • Well, why am I not surprised to read that?! I think you've found your vocation! I have always admired your writing...please keep it up! Let me know when its published too!!

  • I remember lying in the hospital bed in a semi-comatose state, trying to work out as many anagrams to subarachnoid haemorrhage! Those words kept me entertained for some while! Words are my thing too!!

  • My apologies for disrupting this thread, Johnny!! I can only second what the others have said. Listen to your brain and try to be patient in your recovery. This is quite apt I thought;

    brainandspine.org.uk/letter...

  • Hi welcome - have you tried earphones, some block the noise completely.

    Take each day as it comes and be led by your body! Best of luck x

  • hi johnny i hate noise i can get really aaaaaaaaaaaarrrrrrrrrrrrrgggggggggggggggggggghhhhhhhhhhhhhhh. i bought myself some soft rubber ( not foam ) ear plugs, and no youre not supposed to running around like someone stuck a red hot poker up your ass!!!

    oh yeh welcome ha ah ah

  • I have a Chronic Hypoxic Brain injury from being overdosed on IV Dilaudid and dieing for more than 15 minutes. Caused Epilepsy, PTSD, Neurocognitive Disorder, Anterograde Organic Amnesia, etc. I simply can not do what I used to. For several years I felt if I could do it before I could do it again. I believed the second I said I can't do it that meant I never would do it. I couldn't accept that. I was in my own way.

    Then, a resident at the School of Medicine at UC Davis asked me if I would be the subject of her dissertation. I agreed. I got some really over the top specialized care that I otherwise would never have received. And through it all I came away with this.... The old Tracy died. That Tracy is gone. I'm a different Tracy. Then she took me intensely through the 5 Stages of Grief. I grieved the loss of the old Tracy allowing me to accept I am who I am now. We even had a mock funeral. Previously I was an over achiever, 2 college degrees, business owner, commercial real estate for 20+ years, photographic memory, etc., Now I can't be that person. It's very hard to take.

    Figure out your fears, your losses, and limitations. You'll likely find anger, denial, and hard to accept changes. Define them, grieve them, and let go. It's the only way you'll find out who you are now and how to function to do the most you can with what you're working with.

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