4 yrs post TBI. Recovering OK but need to understand more.
Certain tasks husband has nailed. Shopping ( with a little help) planning meals and cooking. Does a mean steak šš»š„° cooks high standard of meals . I think as good as Master chef .
However , not only frustration and anger setting in but actually makes himself feel ill, weird pain in his head, anxious and needs time out. This is caused by enthusiastically volunteering for tasks that he thinks are simple.. ie packing to go away, organising what is needed, locking up house , arriving, putting everything in its place.
He wants to do it, tryās to do it but becomes overwhelmed, anxious, panicked, makes mistakes , gets angry, throws a temper tantrum a 3 yr old would be proud of. Wonāt leave it to me as he feels inadequate and ends up actually feeling ill with physical stress symptoms.
We have now talked about it šš» positive step but I am at a loss to whatās happening?? Like the āorganising switchā in the brain is fogged up.
Anyone had this or can explain whatās happening?
I ve suggested he does tasks heās good at/ comfortable with and Iāll do other tasks. Heās still not come to terms with letting go of things that used to cause him no problem.
whatās happening/ how do we get through this please?
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Charente
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Hi CharenteIt's only been 4 years. He is 1. Still healing , 2. Still on the path of becoming aware of what is and isn't working and 3 realizing he needs to learn to cope with the limits - these are for starters.
I would call, Headway and ask what resources they have.
I live in Canada , so things are a bit different here, and we have brain injury societies that offer coping programs. Some info is presented on how things may be occurring, and then people can say a bit about which are true for them, and then also people can share coping strategies. Sometimes the jnfo is about coping strategies, or health, or awareness, etc. It can be good to hear others because then you can become more aware it applies to you. There may also be a group for family and friends so you can id and learn different coping strategies on your end - for you, not just him. Cause, things have changed a lot for you too.
You will also understand that it is pretty normal for changes in weather, or certain seasons, to really be very difficult for some people. In my case, a hot summer is just not a good thing. Count me more or less checked out til it cools off.
When I was at the 4 year mark I was still pretty clueless, anytime some small thing shifted I thought, right, I am OK now - till I tried something I hadn't done in awhile, or landed on my nose.
So, this is normal.
So, keeping a log of say how he was doing and the weather, including barometric pressure, may help. Also , if he keeps a list of what he did in a day and what he planned in doing he will see he is doing things and it will help him perhaps - I have a day planner with a wide column for everyday. I don't always fill it in and it does help me a lot. He may find something g else works better - some people would rather write about something g else, or just doodle, or whatever.
The other thing that is really helpful for most people is pacing. The simplest way is to put on a timer, and stop and rest when the timer goes off. The trick is to stop before the frustration and the headache or whatever hits. Yes, that might be 30 seconds or 15 minutes. When the time goes off, you rest, 15 minutes minimum to start. Resting does not mean watchung TV, reading, listening to music or watching TV. It means, ideally, go lay down in bed in dark room and do nothing. Or, maybe sit In a chair and do nothing. Rest gives your brain time to process and heal. Sleep is still his friend. Naps ? Great !
As time goes by he will discover what rests his brain and what doesn't- and you may need to help because others often can see the signs before we do,
Keep in mind, if his brain was a factory with 50 people working there, now it is a factory with 10 people working there. 10 people can not do what 50 did. The 10,people will do their old jobs best, and will eventually learn new jobs, but they will never do the same amount of work as the 50 did, and they may not do the new jobs as well - and they will always go for life support first - so when he is tired some stuff he relearned to do may go missing for a bit.
He is still healing, he can and will still make progress, things will get better, and there will always be some residual impacts, no way to know what they are.
Anyway, give Headway a call, there is lots of info out there on this stuff and with zoom and all there hopefully will be a group on coping skills he can tap into. (Then it isn't always you pointing stuff out to him, for another benefit)
I had my TBI nine years ago and after 4yrs repairing I set up a new business, which to start with was fine. However when it started to grow the intensity of the pressure increased, which was was akin to a dripping sink in my head. It got so intense I had to sell the business.
Personally increasing responsibility causes intense concern and worries since my TBI which in most cases are completely unnecessary. Unfortunately I canāt stop it I just try and cope with it as well as possible.
Hi DTBI sorry to hear about the business, that must have been so very difficult for you. Your analogy of a dripping sink sounds all too familiar. I have had 3 major attempts over 6 years to try and up my āresponsibilitiesā AKA have what normals would see as a ānormalā life but to no avail. The creative mind is willing, has lots of ideas and dreams etc, but the cognitive mind just cannot manage it. Itās a most peculiar situation to be in. I donāt know if you saw my other reply but Iām having NHS therapy at the moment which is helping me sort out my thoughts and feelings on this. Surprisingly it is having an impact on some level although I still am working out how else to live my life away from what I previously had in mind!
I hope you have managed to find some fulfilling activities and causes in your life to channel your energy into. Best wishes for your future health.
Hi Charente, I totally understand what your husband is going through. However, we are all different and have very personalised injuries so what works for one may not work for someone else. That said, I am having NHS talking therapy at the moment that is helping me, much to my surprise. There are lots of different approaches and of course, therapists and if you find one that works and a therapist who you gel with, it could make a difference (apologies if you have already been down this route.). I am no therapist but a lot of the literature says that cognitive behaviour therapy CBT can help BI survivors to process what they do and how we react to situations, which might help to organise thoughts to then change actions and go on to change overall behaviour- i.e. your husband having a better understanding of himself as he is now as opposed to how he used to be, and thus understand his capabilities and limitations. If you are able to see a neuropsychologist, they can help identify specific cognitive issues and potential solutions for helping to retrain the brain, but itās a very small niche field in the U.K. and not readily available on the NHS so may need to go private. (This is one of my plans for later if I feel I need it but will have to figure out how to pay for it haha.)
But as Leaf says, definitely see what Headway has to offer, and local groups could help with advice etc. Or you can self-refer to NHS Talking Therapies or IAPT as it was called Improving Access to Psychological Therapies.
I hope you and your husband find something that helps him to heal further.
Best wishes for his future health (and yours too!)
been there!! First few years the brain is rewiring! He is relearnng so many traits. Took me 10 years to be aware of the new me, found it equally frustrating, people, loved ones saw the old me, couldnāt adapt to the changed me?!! Hard times ahead for u both!! Get social services on board!! He will need man adaptions to the home? Benefits and stuff. Will take him ages to accept the old him is gone, accept the changes ahead?!! Very hard 4 u both sooty to sound so gloomy, 20+ years experience allows me to be open, honest. Good luck to you bothā¦ oh and a SMILE often helps?!! Keep safe
this sounds like me. It is reassuring to hear it as it makes me feel more like Iām not alone and havenāt just made this up. On the other hand Iām only at 18 months. Every time I think Iām getting the hang of it I add something in and it tumbles down again. I try to focus on the little wins but some days I just want to mope and get grumpy and irritable because I miss who I was and what I was capable of.
I just try to really pace myself. Not do too much in a day. Stop before I get tired or irritable. Regular breaks. Let other people do stuff. Routine and planning to reduce having to think on the spot. Bit of a killer for spontaneity, but itās for a greater good.
Hang in there. The support and understanding of my family is what keeps me going.
Hi, can I first confirm what others have said it is still early days.
Four years is really the start of understanding limits and abilities. Somedays what you can achieve one day you may not the next.
Everyone is different but what I can say really helped me was basically a state of mind.
I stopped coping and decided to adapt my life. I always have back up for when I struggle. I take on tasks I am fairly confident yet have a back up if it doesn't.
I have stopped beating myself up when I fail, which if I'm honest I do pretty regularly.
Planing holidays and everything involved is a big red flag for me so I help where I can but I'm aware of my meltdowns.
It is not all doom and gloom it's knowing limits and mainly having a back up plan. If nothing else it removes the stress of failing, which ironically helps you succeed.
Your husband is lucky to have you! I'm over 10 years post TBI and haven't had much support at all. My husband has ADHD and is very inattentive- It's an interesting situation being the one with the brain injury and not being able to remember how I used to be. I'm pretty hard on myself and the things I'm still not good at, and I think why can't I do this? I still think of myself as a normal person and I wonder why things are so hard. I still really struggle with planning things. It takes so much energy (which is a similar struggle for people with ADHD) and I get overwhelmed easily. This is a good reminder that I need to be more patient with myself and remember that I'm not the same person I used to be.
so sorry lark12, sounds hard but you sound positive. Yes, we all just want to be normal but we must be gentle with ourselves and embrace what we are . Best wishes
Appreciate your situation. The facts of TBI, is whilst similar injuries we are all different, and whilst the majority of us have support, they can never fully understand and appreciate what specific circumstances we experience. Foundation of my personal sanity is remembering there are millions of people in worst conditions than me.
thatās very true, itās hard to count your blessings sometimes when your world is upside down. Acceptance that we re just not normal ( and that includes me now) and embracing and celebrating what we do have is what we strive forā¦ And celebrating those moments of normality and happiness when we can
Some great replies here Charente. I'm nearly 6 years with my BI and strongly echo Tenyboy's comments about acceptance. When we don't accept what's happened to us we try to do too much, thinking we're failing or giving in if we don't try harder. But all that does is over stimulate our injured brains and then the symptoms your husband experiences (or others) happen. It's very hard to do but little by little your husband needs to accept what's happened to him, understand his triggers and respect his BI limitations. Easier said than done I know. Best wishes.
Absolutely concur with what others have said - it takes time, a lot of it. My ABI occurred over 20 years ago - I spent the first 10 years trying to make out that nothing had changed, trying to get back to the old me, carry on as before, keeping it to myself, even spent 2 years doing a Masters degree as if to prove to myself that i could overcome anything thrown at me and refusing to acknowledge that anything was different.
Eventually after about 10 years I finally started to accept that things had changed and over the next 5/6 years started to make necessary changes. it is only in the last 5 years or so I have had the confidence to admit, to myself and others, that there are just some things I cannot do. I am now able to joke about my appalling memory, forgetfulness and lack of concentration or ability to focus, am open with others about my brain injury and many are shocked to hear as they were clearly not aware. I feel so much more confident now and realise I dont need to make excuses - this is me, this who I am and thats just the way it is.
Give your partner time - he needs to come to terms with things himself
whilst the brain rewires, very frustrating for him, you?!! Will take time to regime the new him!! Was told after 5 years he will be the best he can become?! Took me 20+ years and am still refining my character, very frustrating having to find the new You ( him). Take care, donāt forget looking after You!! Hope u find support from people whoā be dealt with what y have ahead, here?! Keep safe & come back whenever u need to. A silly smile I found often relieves anxietyā¦. See?!! Good luck
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Life after Subdural. ESA and Open University 
Suspected TBI
