Hello
So I'm getting mega fed up.
It's been 1.5yrs since I had my accident.
I keep thinking that I'm getting better but am I really? Or just telling myself things are improving to make it not seem as bad?
Things aren't necessarily that bad but I am getting so fed up with everything.
Do you ever feel alive again after a brain injury?
Fed up, that's the best way to describe how I feel also, I don't have the experience others have on here but just soldier on that's all you can do . Others will have better advice
No! Don't just soldier on be proactive in caring for yourself.
'MINDFULLNESS'
Join the Army of love, you will learn to love & care for yourself & the rest 'will' follow. 😉
Much better advice Tony muzzy
We're all on one hell of a ride we'll never get off. All we can do it accept & adapt.
Brothers in arms in battle for internal peace. 😊
Very wise words 😎
Wise words. 😊 Nah! Words from a man that has shared your battles, fought tirelessly only to realise That i'm fighting myself. There's no winner in that battle.
You just hurt yourself time & time again.
Only when you surrender do you see the route to victory. 😉
God I talk bollox. 😂😂😂
🤣🤣🤣
Hi SidekickPete,
I'm 5years on and yes I can say I do feel alive again from time to time. But, and here's the rub, not all the time. Just when I begin to think I've got on top of everything, something pulls the rug out from under me, and I'm back in despair again.
The Encephalitis society sent me an NHS book on living with a chronic illness and I thought" this isn't me" but you know what, it is. I thought like everyone else on here it'd only be a matter of time before the old me would soon surface, and largely I have, but not the full health I experienced before.
I don't know what causes it but I can have 2-3 days of near normality then, wham I'm back unable to do anything and sleeping for England. I just can't accept it though and probably never will.
We just need to make he most of those good days and ride out the bad ones.
Take care now
Love
Janet xxx
Kirk5w7 - I too have had 10 years where I have battled the brain fatigue & change to who I am.
I have recently realised that I've needed to just stop & change my approach to life.
I have finally accepted that things will not go back to how it was. That! Would you believe it was one hell of a victory to myself. Then small steps in learning about what I have now been gifted with. Even on the bad days I've learnt to try not to think of this as negative. Yes, bloody difficult when you're in pain with suicidal thoughts & pins & needles in nerve damage areas.
Have you been to 'Headway' & been given all the information booklets? I used them to highlight everything that happens to me & just accept it.
Going forward i've started self teaching 'Mindfullness'& this has moved on to an online course called 'Be Mindfull'. It costs but some social welfare groups with your councils pay for this.
I am seeing that the light at the end of the tunnel that I have craved for is there. Also I now know that in that situation the light is real & the tunnel is only an illusion. X
Small steps will beat big obstacles. 😊
Hi Tony,
I liken my problem to someone switching off my computer(my brain) and then when it rebooted some of the he files were corrupt.
Now it took a long time to lay those files down, think childhood and how long before it all clicked together. Now some of those files were easier than others to rewrite, in fact the files were obliterated in some cases and there is not enough time in my case, I'm 64 now and possibly, who knows, staring down the loaded gun of dementia, although I refuse to even consider that a possibility.
I have found Tai Chi has helped me, and through most of my recovery have spent many hours just" being". I find that extremely helpful when I get overwhelmed.
So the reason for this reply is it stands to reason it may, if ever, take a long time to rewrite those files, and our environments are not a he same as when we children or young adults.
Just my thoughts xx
Take care and I hank goodness for this forum .
Janet x
Ooh Janet Tai Chi! I've been looking at that lately.
Thank you for that & good to hear.
The other stuff with files & dementia being mentioned. Please try mindfullness I have read articles on people with fatal cancers using it & it really promotes positivity in the mind. That alongside Tai Chi would be fantastic. X
Thanks Tony, will do
👍
Janet x
I fully understand what your going through. I had my accident back in October, I was in hospital nearly 4 months. In rehabilitation I was convinced I shouldn't have been there. I felt fine, but with little realisation I had all sorts wrong with me & it's taken me a while to sink in also I might never be the same person & that's only 10 months ago. We've all been there in different ways & your not alone. It's really hard to accept & I can really relate to it as living it daily has taken its toll. Don't be hard on yourself, unfortunately it's out of our hands & one day you'll be fine xx
I also get 'flashes' of feeling a but like the girl in my mirror - but they pass and return without pattern. Sometimes I look at mystkf and really really look hard at the face and thibk 'do you feel like this is you? ' but I'm never 100% sure. She's just very very familiar indeed and I definitely know her. I feel sure this will keep getting better till I'm back to normal - but I think it takes time. I relate to emerald girl and the impatience to leave hospitsl because you feel ok. While everythg is being managed for you - it's eay to believe you're better. It's inly when you get home and start seeing what isn't right because you're trying to fit into normal life that you start to understand. Then when you go out in public you really get what's going on. No one can tell you this - you have to learn for yourself - but it does keep getting better - just more slowly than at first. Don't give up even if you feel frustrated sometimes - it's like painting a masterpiece - you can't rush it 
Hello Side kick Pete
Guess I am in the same place as you and many others. Sometimes I think I should change my name to " I need a kick up the arse" - sorry if that is a bit crude. But I do deliberate on a daily basis "where is my brain?" My biggest bug bear since the delights of good old encephalitis is not remembering the damned good idea I had- and it was only 5 mins ago! I remember the feeling of the idea, if that makes any sense, but the actual thought process is floating in the ether. I can read some instructions and forget what I have read within a few seconds- my eyes work, but my brain has lost the skill of retention. Having said that I have had a major achievement today - I made a fantastic megga lemon meringue pie and boy did it taste good - only took me 6 hours - I am not joking.
So my best advice to any one is just keep going - you will probably get there in the end- it just takes longer than before our illnesses. Do I feel alive after encephalitis? Well yes but it is different - some days it really sucks other days it can feel good - don't really know what triggers a good or bad day. The one thing I do know, thanks to this site is I am not alone with these difficulties and neither are you, although it can feel like you are some days. Keep going - who knows what delights you might discover. I found yummy lemon meringue pie today.
Clare
Hi sidekick steve,
A roller-coaster of emotions, and surprises round every corner. This brain injury mularkey is a little bit unnerving. I'm almost 3yrs post TBI and like many others in our wee online community, we can truly empathise. We probably are all fed up... waiting for the fog to clear, and things to go back to normal. Most of us continue to be tricked by a run of good days, then dashed when something triggers 'that old chestnut'. My best advice to you is to keep this forum close by, and try to take some comfort from your fellow headway-ers and their familiarity with all that your journey brings to you. Stay strong, you're not alone... our security blanket is right here, come in for a cuddle.... we are right there with you. x
Sidekickpete - I am 10 years on & I too get hit by waves of is this ever going to improve! This does lead to deeper feelings of perhaps it would've been better if it had taken my life 10 years ago.
Over the last 12 months I have discovered 'Mindfullness' & all I can say is it has totally changed my approach & thought process to life. It is totally weired as it seems to have rewired things. It has helped me accept the negativity & that comes with the brain injury & channel myself into being more compassionate towards myself & even caring for the pain.
Some people pull a face & think 'Mindfullness' meditation is a load of pink & fluffy hokus pokus, all I can say is more fool them.
Give it a go fella open your mind & all you have to do is learn to breath whilst channeling thoughts.
I have found this thread very good reading. I'm about 16 months post the day my life changed....I was rushed into hospital with a Gall stone (vey painful) which quickly became septicemia. I was in a Coma for 4 weeks and then a further 2 months on the re-hab ward, learning to walk again etc. I still find each day a struggle as I feel that I am fine then the fatigue hits....I can no longer work as I am left with weaknesses in my arms due to multiple Haemorrhagic strokes whilst in the coma and of course the fatigue. I also suffer from memory problems on a short term & long term basis, along with anxiety attacks to the point where I rarely go anywhere except the anonymity of a large supermarket with my wife. I also need a wheelchair now for anything more than getting around the house.
Sorry for the long post & thanks..
Phil
Fyll - Mindfullness has taught me everything that has happened has made me realise this is just a chrysalis which we will adapt to & can emerge with such strength. 😍
Hi Tony,
I often use mindfulness to help me sleep which works very well indeed, I possibly need to learn more to be able to use it in other areas though.
Cool.
Take a look at the attachment you can find a local group to you that can possibly support you in going forwards;
Thank you
No thanks needed buddy. We're all the same boat & I want to help. 😉
how do you pace your life when the world doesn't slow down just because we have a brain injury?
being dizzy.
2 Questions, Drugs and Benefits
Hi, I need advise.
