All my life ive been an extrovert, loving socialising and being arround people. Since the birth of my second and third child I have made some really bad choices, ive hurt my friends and family, had massive debt and ive shut myself off from meeting new people (I don't think anyone would like who I am now) as well as distancing myself from my old friends because they don't get me anymore and ive let them all down to the point they don't talk to me anyway. I dont feel at all like being arround people, ive tried so hard to go back to work but it litrally hurts my head and then my neck and back go into spazam and im in bed for 2 days! Its like I cant be arround peoples energy. Im light and sound sensitive and I know my old friends just think I use excuses to get out of social situations because ive not been this way my whole life.
Im working on me and learning to love myself more so I dont feel the need to be socially accepted, more I just accept myself the way I am and thats ok.
I was just wondering if other people just didn't want to do people any more and what kind of job can you get to not have to deal with people?
Well being a carer for my husband he sustained TBI March 2020, I know and sadly he knows he doesnt have empathy of others, this even means towards me, wife of 19yrs. I find it hard to accept the change. Finance side, yes he has become a spender to the point he knows not to touch our account and i continue to bale him out on his personal account. I would seek advice on how to manage finances, i do believe its connected with TBI, hes lucky i can monitor which you may not have someone to do. Friends/family well theyve disappeared and many avoid. So can relate with that and maybe it is mixture of lack of empathy on your part, but i also feel its people whos shown true colours and not meant to be in your life, people on different journeys, it literally does feel your on a train passing strangers.
Seems you have insight to your situation but also needs fixing before you can move forward otherwise it will be a vicious cycle. Changing jobs, Maybe think of your strengths and skills to start your motivation,though this can take a while to pinpoint but keep you in employment until your ready for a change and help you to think of goal you want to achieve, this could be change in profession, education of go self employed.
Dont let negative situations bring you down, you have children, you need to continue to show them how survivors role and continue to be their inspiration. Fix the finance situation though, seek advice and go from there. All the best.
Im not in financial hardship, I was lucky my mum bailed me out and I have no money issues as my partner works and im under no pressure to go back as ive given myself a year to try get myself straight. I worked with children in care so my empathy was massive before this happened, the needs of others always came before mine (massive codependancy issues) but its like after the tbi I cant cope with that any more, its to intense its to much.I totally get that feeling of the train passing with strangers on it, thats the part I find so difficult and hard to figure out. Is it me thats changed or did I not have true friends to start off with. I've struggeling to understand things that I clearly understood before. I've had two business one if which I qas a childminder for 7 years, I have always been able to listen and understand the children I work with and I strive to understand my own but im struggeling to even tolerate them at times because of the noise and that brakes my heart.
Im so sorry your husband doesn't have empathy towards you that muse be really hard for both of you.
I guess with going from working 60 hours a week, to nothing and not being able to cope with things that were just so simple before im struggeling with the change. I may need to give it more time to find answers to how to manage my symptoms so I can look at a job that fits arround it. I guess im struggeling with feeling my friendships were not what I thought they were.
I must be thankful for my partner and my mum who have really stuck by me, my boys are amazing with me as well so I guess I have a lot to be thankful for.
I had a TBI in 2016 and yes I have changed, and so called good friends disappeared after I came out of hospital, unfortunately this is a common occurrence following a brain injury ' and for me it was really hard to accept this at first because i had always been there for them in times of need. I have 2 friends who have been with me all the way and I can now see that the others were not real friends at all. Don't beat yourself up about them, you are a better person than they will ever be ,real friends are there through thick and thin no matter what. Be kind to yourself and don't waste your time worrying about them . You and your family are all that matters . Anyone who walks away from someone with a brain injury is certainly not worth knowing. I have read some incredible stories on this forum about life after brain injury and how it impacts the whole family and when I read about how things are slowly starting to improve for all concerned it is really heartwarming, the first 2 years for me were pretty tough all round but I now think that although I am a completely different person to who I used to be I consider myself a better person than I ever was before.
Thank you, that was really nice to read and know I dont have to feel bad for them walking away. I feel the same as in im not the same person but yes I can be a better person. It does me bo good to feel the negative stuff, it just feels overwhelming sometimes that I cant swop my negative thoughts for positive ones and im learning thats ok I just have to ride it out until some positive stuff comes in. Thank you x
Cheerish this time and you certainly are lucky and good idea looking at another path. I havent TBI and i find myself questioning all friends, crappy family disappearing act and choices when ive supported over 20+yrs, but they just all did avoidance when husband sustained TBI. But the ones who havent stood by me and left me to care for my husband, 2 children I have to cut off these such friends/family. They dont know how to approach me or us or didnt know how to support so didnt bother at such hardest journey of our lives.
Honestly dont beat yourself up on friendships, i cant fill one hand with any family/friends im 38. I work full time, 2 children and care for husband 75+hrs a week, solo and this forum for any but all support.
Just a wife on a mission whilst ensuring our little family functioning gets close as possible. I have 2 yr old (3 mid Jan) and 15yr old.
Time to myself is a fag break, getting up really early 5:30 to do run on treadmill or evening 8:30ish so disturbs no routine. Thats my only time, but on the bright note toddler will start school 2022.
Coping, is hit and miss i have constant trauma whirling in my head, im a worrier and find it difficult working whilst being a carer plus medical appointments and a week out of a month i am very teatful, this is an improvement as was crying /howling everynight before bed, and this month not cried whilst on treadmill. I dont to social media, i dont have family, few friends message still not physically seen so this forum has got me through for support.
But despite low mood days, i have to remain positive, have to continue my mission, ive done and continue all my husbands rehabilitation since hes been home. I refused residential on discharge and refused first 3 months. Since 3rd week of November he has settled down with behavioural.
Yet family/friends knew he was hard work especially with PTA first 4.5mths and left me with 2 children. We have home visits for 90mins per week from brain injury team. However i feel very lucky despite our new journey and nothing else appears to stresses me out i.e work anymore from this ongoing experience, just time i dont have enough of, but deciding to drop full time working hours as alot to squeeze in.
Hi Misswebo, I agree, don't be hard on yourself - you have children, and your partner and your Mum on your side, which is plenty (and just being you is just fine too, but it's sometimes quite hard to accept that). It's also not that long after your TBI, after all, and light and sound sensitivity are difficult to deal with.
I've spent the last couple of days with my Mum in our Covid bubble, asking to her turn down the music and TV 😂 and I'm better than I was this time last year I think (back in my quiet, dimly lit flat now!)
Can you tell us a bit more about your TBI - what happened to you, and what help from your doctors have you been having?
So in March 2019 cutting a long story short i fell and an 18stone man fell on top of me. I hit my head so hard on the floor I couldnt move for about 5mins I think. Its all very vague if im honest, I know this is nothing in comparison to so many people on here who have had to have major operations or are dealing with brain tumors. I almost feel like a fake calling it TBI but I know my symptoms run with what others have said.I was running a business at the time and the night it happened I just brushed it over and got up the next day and went to work. A couple of days later and I kicked the baby gate (which had been in the same place for over a year) I broke my toe! I spent the best part of 14 hours a day on my feet running my business so I put the pain down to my toe. I had a couple of panick attaches after that, which I didnt recognise as I have never had one before. Roll on 3 months later and at the end of June I got rushed into hospital with suspected meningitis. I came out 3 days later with a fractured L1 and a disc that had popped out the back of my neck from the fall that was pressing on my spine. I had a numb arm and lots of pain at this point. I lost my business in July 2019 due to not being physically or mentally well. I had my operation in November 2019 and decided to move in March 2020. I needed a fresh start. Ever since my move I have had a panick attack, suffered very bad head pain, stomach pain, sensitivity to light, sensitivity to sound and my executive function skills are all over. I also cant handle being arround more that 3 people at a time (not me at all) and I get annoyed extremely quickly! I was diagnosed with ADHD in August 2020 as well. My mental health has suffered so much, I would never have said the way I behave now was me at all, not compared to me in my 20s.
Im 42 now but im trying to piece my life back to gether and get better.
I only realised I had PCS about 1 month ago. No one has ever looked at my head as I never connected anything to the fall I had attempted time. Im going on the 13th of Jan to see someone in Derby. Fingers crossed they can help. So I've had no help so far, just me trying to piece things together as best I can. X
Thanks for sharing your story, and as someone else who 'just' had a blow to the head, that turned out to have caused a mild - moderate traumatic brain injury, I can confirm that the symptoms can indeed sometimes last for months or years - even without a bleed or anything showing up on a CT scan.
I'm glad you are going to going to see someone on 13th It sounds like you've had a lot to deal with in the last couple of years. Do bear in mind that a lot of different conditions, including depression (which can be actually caused by a brain injury) cause similar symptoms to PCS, and it's not uncommon to be prescribed antidepressants - but that doesn't mean that the doctor thinks it's 'all in your head' - it's just one of the ways to alleviate and resolve some of your symptoms, and can be very helpful.
Meanwhile it would probably help to talk to Headway on the phone , you always get to speak to someone knowledgeable, and can get advice and support from them on 0808 800 2244 - but it doesn't re-open until 4thJanuary.
In the meantime, apart from this forum of course, it's always worth remembering that the Samaritans are open 24/7 and will talk to you about anything, and you don't need to be suicidal to talk to them. Their number 116 123 is free to ring.
Awwww thats is so sweet and lovely of you I think thats the kindest thing a stranger has done for me in like forever. Thank you so much, you are an inspiration 🙏 thank you.I will call them if im feeling the need to talk, I could have done with talking a while back but glad I found this site. Everyone is lovely on here.
I dont feel so alone or a fake knowing people have been through the same stuff and have similar symptoms, I mean I wouldn't wish it on anyone but im so glad its mot just all in my head and me going mad.
I dont even know who im meant yo be seeing in derby hospital so ill call headway and see dhag advice they can give me in what I should be asking or who I should be seeing.
Thank you again for your help and support it really has made my day, thank you kind lady 🥰
That's really lovely of you, thank you 😊 and you aren't going mad.
I haven't been on here very long, but I think when you realise that we're all dealing with similar things (no two brain injuries are exactly the same) there was for me a huge sense of relief and recognition (which is healing in itself) plus everyone is great on here, of course! Wish I'd found this site sooner too.
Perhaps your GP can tell you who you're going to see at Derby - or there'll be something on a referral letter you can look up? That might give the Headway person a better idea of the best questions to ask?
Doctors quite often want a load of blood tests done to rule out other stuff - plus it's worth asking for your vitamin D level to be checked at the same time, as low vitamin D can make you feel very tired.
Don't worry if you get referred to a neuropsychiatrist - they are the absolute experts on the brain and what goes wrong, and what drugs will help - plus mine was great about explaining that all the odd stuff I had was down to the brain injury, and how I would have to manage my fatigue.
Good luck with getting some good help, and let us know how you get on too.🌸
Thank you I do hope its a neuropsychiatrist maybe they will have a better clue as to whats happening.
I already take high foses of vitamin D, magnesium, B12, omega3 and my ADHD medication and they do work very well.
I've recently had covid and oh boy did it hit my brain hard but im determined to get my brain 100% better and for the fatigue to do one. Im not sure i want any more drugs I want to get fit and healthy and I want to have the energy to do it, I just hope the professionals have a plan that works.
Thank you for all your support and kind words.
I will remain on here through my journey and keep updating everyone and hopefully I can help someone like you have helpped me. Xx
Oh no M, Covid on top of everything else? That sounds grim, how were you with that?
My neuropsychiatrist says fatigue is the last thing to go, and though they can't do a great deal about it , they do know that it is difficult to clear up, unless you find your baseline activity (that you can cope with on even a bad day) and very gradually build up your activity levels week by week. 😊X
Covid omg the hardest bit qas my short temper, pain in my head and sound sensitivity was horrid at its worst. It attacked my brain, I could litrally feel it in my head trying to put really bad dark thoughts in, but I fought with all my might. I didn't eat great, tummy was upset alot but im getting over the last bit of it and getting some sort of normal black into my routine.
Oh fatigue is massive with covid! But for the majority of people they will make it through.
I, like others with a brain injury have had similar social problems. I’m aware that social and emotional activities can be very fatiguing. I’ve had a real trust issue. In fact I’d go as far as saying that in the first year post TBI, I did not trust anyone or any thing.
Even now there are people that I really don’t trust.
I’m wondering if there is a psychological connection with anxiety and the fight or flight response. and issue with planning and decision making.
Would a psychologist say it’s mental health, but a neuropsychologist say it’s the brain injury.
And is there therapy that can help? rather than medication.
Keep us posted please.
I think a lot of the yrust comes with being able to trust yourself. I lost all trust in me when I had my fall as it was my fault, I lost my business that was my fault to, I lost friends that was my fault to. So I've had to build on trusting me again and that has come in snippets, like I set myself tasks that I can and will follow through on so im building trust with myself first, to be there for me comes first in my recovery.
All of it is connected to executive function skills or lack of after a TBI.
I've actually paid to do a course with a Dr in America to work on my executive function skills as with my ADHD ive always functioned in a different way and needed to improve in this area. I do feel after the TBI it made it all a lot worse. The hardest bit for me is being short tempered and irritated, thats hard to get a grip of when I'm in the moment of being annoyed at a sound or a light or something I cant quite get my head arround.
My fitness and health need to come next as ive heard the best thing for PCS is exercise and getting the blood flowing to the brain.
Camaron Marshall from Canada talks about the 5 key areas to focus on for PCS are
Sight
Sound
Balance
Exercise
Diet.
Think I got that right sorry if I havent!
I know my sight has been off and so has tge rest so im hoping to work on all 5 areas to see if it gets better and hopefully prevent medication. X
I don't think I said before, but having ADHD is one of the known risk factors for prolonged PCS. In adulthood ADHD can be an advantage, and many a successful person will have it in the background. Ritalin is used both for children with ADHD, and as practically the only treatment for adults with chronic fatigue (not in the UK yet, I don't think). Incidentally, take what you read on the web about Ritalin with a pinch of salt, because there's a strange quasi religious group on the web that is the source of virtually all the anti Ritalin stuff on the web - even to funding small fairly bogus studies - akin to the anti vaccination stuff that goes around ( it's a weird world out there!)
My previously mild dyspraxia is now more prominent post TBI also. It was picked up in a battery of neuropsychology tests my neurologist requested early on. The neuropsychologist I'm seeing now says it's normal for existing stuff to be magnified after a TBI.
Once Headway open up again on the 4th, it might be an Idea to talk to them about your sight issues - other people here have had help from opthalmologists (or do a separate post to get the info from the community here of course - this is different from just getting a standard eye test which will often be normal).
The other thing sight issues can be to do with are convergence problems, oculomotor, and / or vestibular issues which you can do exercises for to encourage neuroplasticity.
Oh, and nearly forgot, it's well worth trying a mindfulness course to support yourself ( MBSR) these have been carrying on on-line , this year (my local authority supports free courses and drop ins). Mindfulness can be good for handling fatigue, stress, and anxiety post BI and there's been some evidence that it also promotes neuroplasticity. I did a course early on, and it's been very helpful.
Plus on vitamin D, I know you said vou already take it, but you might like to check, because I've read that you need to take vitamin K with it for good absorption ( so I take mine as a multivitamin) so it might still be worth getting your level checked if you get sent for blood tests. Vitamin D and the B vitamins can apparently help with sleep issues and brain repair.
Hope this helps anyway 😊
Jen x
The goals can be really small, like pick something you do anyway every day, say have breakfast and clean your teath but do it by a certain time each day. Then build on that after a month. Adding a couple of things in at a time but don't let it get overwhelming thats the key. Gaining trust in yourself is one of the biggest tools to self healing. X
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