Well, im 2 years plus since my TBI and ive been trying so hard to continue as normal. Im now going to give up trying. Its so hard. I have a job in a primary school 2.5 days a week and work self employed the other two. I dont want to let people down, but i literally cant go on like this. its the headache and fatigue and numbness that i get on one side when ive had a busy day that i cant cope with anymore. Ive stoped seeing friends, doing anything outside of work, all to try and manage but its just too hard. what makes it worse is that no one understands how hard it is just to be in a room with other people sometimes. i look normal to everyone else. i cant see the point anyore, its all such hard work. ive never felt so isolated and alone. i dont know how to manage . if i dont work i wont earn money and then how do i survive? im just so tired with it all. the neurologist i saw was so unhelpful and made me feel silly. ill try and speak to my gp again i supose but ive not got much faith in them being able to help. after all, its only me that understands and only me that can fix it, i just dont know how to anymore. literally the only place i get any reasurance that im not the only one is here on this chat, so thank you all for listening x
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Flosmum04
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I hear ya - I worked in early childhood - kindergarten 3-5year olds - had done it for 20 years before accidents and have just after two years of trying hard decided to stop. Have changes to school age kids which I find easier as more structure and can kinda control the noise levels more easily. Even 4 years down the track still balance out my days so I can get through - I’m much better however still are in bed by 8pm resting. And if I work I don’t do much else just try to do my home life too as I found that when I was working too much my home life and family would suffer as I isn’t have much left in the tank for them . It is about balance . I do miss my old life and energy levels etc but remind myself at least I’m here 😀😀 just know you are not alone and things improve - celebrate the small steps/wins.
Get in touch with Headway, they were my lifeline when I first struggled like you, understanding what brain injury does to your body and mind takes some learning, I had a lady called Carol that rang me every Monday for weeks to give advice and listen too, she told me about using memory boards as I have lost my short term memory, I too have the left side weakness in my body as I broke the right side of my head. I too look ok, it is only when I walk people can see I struggle, I have crohns and have brittle bones, so most of my body broke in the accident. Only late last year I have told every one, all my friends, so they can learn too and you need people in your life, just to listen, to give you a shoulder to rest your head on when times are rough, from telling people in my aqua class, I have developed amazing friendship with 4 of the women and my actions make more sense to them and they now know the reasons why I do what I do. Be patient with yourself, have a nap at lunch break, just sit in your car and have some me time, then once home from work, allow yourself some me time again, don't push people away, you are an Ambassador for brain injury, so go out and tell everyone how hard it is to live with. Reply to me any time if it will help. xxxxxxxx
it’s so hard and you are doing your very best. People don’t understand try as they might. I feel the same, I get frustrated that I just can’t do things like I could before. Like a lot of people I used to be able to multi task, now I struggle with one thing. That on its own sounds minor but it affects everything I do. I just hope - rebellious hope - that if I plod on things will get better. Are your workplace aware that they have to support you under the discrimination act? They can’t expect the same as before. Sorry if you know all this x
Thank you for that, Its so nice to know others feel the same. Work were so good when i had the accident, i feel bad asking for more. I think ive decided this week that i need to cut down, so ill have to find the courage to speak to them about it. x
I think you should read 'The Ghost in my Brain' by Clark Elliott. It's about an artificial intelligence professor who had a TBI, struggled to hold down his job for years, realized GP's and neurologists knew nothing about the brain functional issues and fatigue from TBI. Instead, he found alternative ways to recover his functions.
I followed some of his advice and also found other alternatives and recovered; today I have a few issues remaining but I have a normal life again.
Maybe you should think about how you are going to recover rather than working.
Thank you. I have that book and have read it, but it was early on in my recovery so i didnt really take it all in. Ill get it out again. I think ive been so busy trying to get back to normal that ive not given myself chance to actually recover properly. I think you are right, i need time to get over it x
I've just put a post up about my recovery journey, I wrote about it for a master's degree thesis and it is now listed on academic search engines, you may want to read it, it may help you. The link is in the post.
I'm very nearly 26 years in and could still write your report word for word in the present tense.
All I can say is do what you think is right, as little or as much as you want. You matter whatever the people around you see or think. I could not give a fig, I try to be kind and thoughtful and the response from my former life has been "so what". I've shrugged my shoulders and moved on, not easy but it's far less stressful than keeping up appearances.
Please, please look after yourself and don't worry what your past thinks.
Thats great advice, i definitley worry a lot less what others think. I think ive been running and hiding from myself really. Its time to face it i think x
Talk to work. Really important. Get some guidance from Headway. This is what I got from a kind neurologist:
The way to do it, is best described by 'the jelly in a jam jar' analogy. Nothing seems to have changed outwardly - but the reason why you and I get tired so easily is that our brains (a hard set jelly) have been shaken up and banged against the jam jar (the skull) - it is re-settling. And re-learning stuff. Just ordinary stuff. That rattle has injured it, and disturbed both what we did 'automatically' and what we do by learning something, and putting it into the pattern we already have in our heads. Because those pattern themselves have been disturbed, we use up energy recalling it, and then putting the new thing into the 'relearned' pattern. We are working hard, rebuilding. That is why we are tired, just doing things we used to be able to do.
The other day, I couldn't recall how to do something that I have been doing since I was half my current age !! I was ashamed, and upset - and then had to give myself that same reminder - your brain is injured, I told myself.
You Flosmum04 are doing really well - and it seems a bit too much. The load needs to be reduced, clearly. You sound exhausted. And you need help. Please please talk to work - and before that, prepare for it, by talking to Headway.
if you were here, I would give you a big hug. Assume a hug. That was from me.
Thank you so much. That is how i feel, its all a struggle. I will definitley speak to headway and then work. i have to do something to stop feeling like life is not worth much as its a big struggle all the time. Thank you for the hug, i needed that xxxx
one thing I can suggest that might help is Loop ear plugs. They cancel out background noise allowing you to focus on those you need to. I wear mine in noisy situations. As for continuing to work, I take my hat off to you. I had retired from primary teaching 6 months before my accident. I cannot imagine having to get up every day and go to work.
I have some loop ear plugs, they are a game changer. I couldnt go anywhere where there was noise if i didnt have them. I have to wear them at work sometimes. Thank you for your advice and kind words x
You need to look after yourself more, only time will enable you to become more like your old self.
You may never be able to regain your old life totally but you need to learn how to pace yourself while your brain recovers.
Talk to Headway and follow their advice. 2 years is still early I don’t care what “the professionals” say. In my case my brain activity was almost wiped out so I consider in some aspects my brain is only 12 years old. I have regained most of my functionality but I would never be able to work again or drive.
And it is so very hard every day but you will find your way, just be kind to yourself along the way.
I cried when I read your post. I completely relate to the feeling of just so fed up with the effort to go on while just feeling so below par all of the time. It’s exhausting. I wish there was more we could do to help you. I feel so lucky that I had a neurologist who understood and that I lived in a county where they have a community neurological rehabilitation team to visit me at home and offer guidance.
I too had tried to push through. I thought I could recover whilst working. I nearly had a complete breakdown.
It sounds like you are using all your energy trying to be as normal as you can, to be your old self. That just isn’t sustainable. You will end up making yourself ill if you don’t make some changes.
The hardest part is accepting that you are not the same as you were. It’s a grief process and a letting go.
Your friends and family do need to know you are struggling. If you don’t tell them they will assume you are ok. I know it’s exhausting telling people but the important ones need to understand your situation.
You cannot heal and rebuild your self while using all your energy just getting by.
You need to be kind to yourself. You have been through a life trauma and the effects are far reaching. I have found help from many sources and audible books but firstly I think the advice to get in touch with Headway and ask for support is a good start.
It’s time to make some positive changes for you. This isn’t going away on its own.
Thank you so much. Ive just cried my eyes out reading your reply. I know everything you are saying is true and i have to sort soon, i think on the path to total exhaustion. Thank you for being ther, for making me feel less alone and for understanding exacty what i need. Much love x
I was told by others that what I was doing seemed unsustainable but I still pushed on. I was in survival mode and fearful of what would happen if I admitted that I was unable to do my job. I was living for weekends and holidays to just get back enough energy to do more
It wasn’t until I got home one evening and as a “made it” through the front door I was suddenly overcome with emotional exhaustion and I sobbed. I sobbed and then I sobbed some more.
I kept saying “I don’t know what to do” over and over again. I got an emergency telephone GP appointment the next day and then sobbed on the phone to them. The relief I felt when the signed me off sick for 6 months was palpable.
It took all of that and more to learn how to be the new me.
It’s incredible hard. The first step is knowing you have a problem in the first place. Then you can start to take a direction that is different.
It starts by telling yourself and your people what is actually happening. Xx
I think im doing the same, everything you say is so familiar. Its so hard asking for help though. I think admitting its a problem has happened this week. I cant carry on this way. Thank you again for your support xx
So sorry to read this, everyone else has said everything exactly right. Try to do less though, the fatigue and the headaches can ease up if you do first - and then just build up very gradually. Things carry on improving - there's just not much research after the two to three year mark to evidence it. I've been doing really well, but am in a bit of a slump today as I did a flower arranging competition this week on top of my usual stuff and am feeling a bit knocked out still, though also have a bit of a cold which isn't helping! I would never have imagined a few years ago that I could do this much though.
Not sure if anything's changed on the benefits front, but I remember that I should have drawn statutory sick pay to make the ESA easier ( I just retired early in the end - appreciate that's not the solution for most people though, sorry).
I remember when work was my life. When I wasn't working with offenders, I was renovating a badly dilapidated house I'd moved to after divorce. But the Bi scuppered all that dynamism so, despite blind determination to carry on as normal, I was beaten by the fatigue, poor mobility & memory issues etc...
The expression 'Work to live or live to work' loomed large and I learned (around the 2-3 year point) how maintaining old practices badly exacerbated symptoms. It became the necessity of finding quality of life in an alternative lifestyle with fewer demands on brain and body which loomed large.
Depending on individual circumstances, maybe seriously consider foregoing the teaching and focusing only on your self employed work.
In an ideal world, not letting others down should be possible through their appreciation of the strain involved in working with brain injury.
Take care Flosmum ; I hope you find your way through to better days.... 💐
If you have a health condition or disability which prevents you from working, or limits the amount of work you can do, Universal Credit can provide you with both financial and work-related support.
You could also see if you are eligible for PIP - Personal Independence Allowance
You could also look into getting a care needs assessment from your local council. The needs assessment is free and anyone can ask for one. It’s all worth looking at and applying for, as you don’t know what you don’t know and all the above may be able to offer things you don’t even know about but could really help. Google local charity’s, citizens advice can be helpful as well.
First of all I'm sending you big hugs. I understand exactly how you feel. I'm 10 months post TBI so I'm still learning. I find it so very lonely and hard at times. Recovery is frustratingly slow.Have you looked into if you were able to claim benefits? X
thank you. Good luck with your recovery. Ive been determined to manage on my own, but i think i need to seek some more support and finances are definitley part of that x
I know how you feel, everything is a struggle and very strange.. someone’s feel like I’ve been taken over by an alien.
I’ve found listening to podcasts helps, music jeans seems like loud noise to me now but listening to one person speaking seems to help settled me a bit so maybe give that a try?
It’s hard when others can’t see your pain but we all can so come here and let everyone know how your getting on.. reach out if you need to!
Thank you. I feel supported and less alone talking to you all. music is like that for me also. Its just a noise that makes me feel unsettled. I listen to podcasts too. That seems ok x
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