I’m slowly Excepting the changes after TBI but ext... - Headway

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I’m slowly Excepting the changes after TBI but extremely depressed by it all!

Insaneinthemembrain profile image

it’s taken 8 months to make the necessary changes to my life after my TBI. I’ve been trying to ignore it in the hope it would go away but as you know it doesn’t.

Now that I’ve accepted its presence I’ve become extremely depressed. My speech is terrible, memory and abilities are terrible, my head throbs endlessly and I’m so unbearably depressed.

Panic attacks and fatigue have taken over my life.. I keep making plans to do stuff and then totally freak out about it.

I’m trying not to get angry and overwhelmed with it all but it’s been 8 months and everyone around me has moved on. I no longer get any sympathy for it so the need to crack on with life is adding more pressure and stress than I can cope with.

Help! I’m getting more and more berried underneath the rubble of all this.. all that’s left is my hand poking out at this point.. sadly I think the hand can’t even be bothered to wave.anymore 😔

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Insaneinthemembrain profile image
Insaneinthemembrain
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13 Replies
BadSkater profile image
BadSkater

Hi sorry to hear this. Have you rung up Headway? They will hopefully be able to help come up with some constructive actions and how to get the most out of the NHS, maybe. Definitely avoid all alcohol though.

Insaneinthemembrain profile image
Insaneinthemembrain in reply to BadSkater

thanks for your lovely reply.. no booze at all for me, I don’t touch it as it just puts me in bed for days but not everything is very raw. All the symptoms are there in force. I’m just in a constant state of panic about everything.

I’m getting some help but I’m so tired. When does it get better? I feel like my energy levels are just so low 😞😞😞

MaryH75 profile image
MaryH75

Hi, I understand exactly what you are saying. Im 9 months post TBI and am in the same situationI feel as if im in panic mode in unfamiliar situations, constant headaches and sympathy wearing thin. I'm actually fed up with it now as can't seem to fet a straight answer anywhere but have to keep going for my kids. Sending massive hugs x

Nafnaf87 profile image
Nafnaf87

Good morning Insaneinthemembrain

There is no easy way, you have to continue to adapt your ignorance in the search for a way to live with it acceptably. I have been doing it for 3 months shy of 26 years.

For long stretches in those 26 years I've had quite a good time with lots of the blocks in place. Kind of got secure, just in time for some b*stard to kick the bottom one away which first time was quite a shock. Last time was the biggest shock though when my family did it, specifically my younger brother. 4 years on I am still clearing up.

I try to find fun in everything that arises out of it, a kind of coping mechanism. Yesterday went to our monthly local Headway group meeting where I have been bashing away to get them more organised, it seems at last we are progressing. There's another guy, Paul, who turns up occasionally who, bluntly, annoyed the **** out of me. Yesterday I got cross and said so but learnt he'd been at it even longer than me, 5 years longer, so I made a joke out of it and discovered we're both trying to get to the same place, albeit we appeared to be going in different directions.

Get home and discover Universal Credit are after me again so put the ball back over the net, god it's boring, but I find it more amusing now trying to find ways to make them do what they don't want to do, help me!

Don't give up

Best wishes

Michael

Nemo24 profile image
Nemo24

Please reach out and get help wherever you can. Definitely start with Headway. They have a help line as well as helpful info online. Eight months is still early days. Don't be hard on yourself just manage what you can each day, hour or minute.

Writeronstack profile image
Writeronstack

It does get better. Believe me. Headway would tell you the same. Please do call them.

My own experience : I started with not having a plan for the day, and everything I can do, I write down in a word document. (Even cleaning my teeth, or straightening my bed after I get up in the morning.) So I knew on day 3 that what I had done was better than on day 1. The document is is called '1-day-at-a-time-log'. Starting the document name with the number 1, it is at the top of the document list - makes it easy to find. (I got that from someone else - it was a master stroke.)

I even wrote down things like 'scrolled through the phone for half an hour - not found anything, or anyone i can talk to'. Or just 'slept for the last hour'.

Other people's sympathy doesn't matter actually, because they have NO idea what the injured brain is trying to do, and how much it has to struggle to get the least bit of it done. Your relationships will change. . . . you are different now. The rest of the world will seem different too. That's okay. We are all works in progress.

I started out writing my log on the hour, every hour. That was 2 years ago. I still write. But now, some days are so 'good' that I don't write anything at all - just live an ordinary day, and go to bed at the end of it.

I still have to have a rest in the middle of the day.

Nowhere near normal, but if I know ahead, and plan ahead now, I can do most things, and it is improving, little by little. I have flashes of the old me, which are really cheering. I know that this will only be flashes, and that too is okay now.

You too will get there.

Pedal2 profile image
Pedal2

I've been at it for 25 years now. Soon I'll have lived as many years post accident as I had prior to it. There's an anniversary to "celebrate". It does get easier but in my experience only marginally. Finding answers to questions is something you have to deal with yourself and yes you lose a lot of sympathy and understanding pretty quickly. I see it as me against a formidable foe and it's a day in day out kind of thing, I don't get a day off on this job. I now have to laugh and smile to deal with it because it is such a ridiculous concept to explain to anyone who has not experienced it first hand. You'll get to the same point one day. Not better but more tolerant, a little more tolerant with only occasion outbursts. That's probably about as good as it gets.

Ideogram profile image
Ideogram

I'm sorry I don't have an answer, and it's getting to me today too, but just wanted to say I really feel for what you're going through and am thinking of you. :)

thought I would wait a couple of days before responding and try and pull myself together a little! I really appreciate everyone’s comments it means so much that this group exists and we can help each other out.

It’s reassuring to know others are experiencing similar symptoms.. good days and bad I guess!

Big hugs to you all! Hopefully better days ahead ❤️❤️❤️

Trevor78 profile image
Trevor78

I would educate those around you by printing off some of the excellent Headway publications, highlighting in them the effects that are particular to yourself and tell those around you that things are not right for you because of ............. - your brain is injured/changed and you may or may not always struggle, usually unseen. However, whatever the outcome this is not a quick fix for you and they need to realise that fact and give you time and understanding.

Insaneinthemembrain profile image
Insaneinthemembrain in reply to Trevor78

I think everyone is very bored of hearing about it.. my husband even thinks being on this chat is unnecessary. I’m starting to feel very isolated. I’m sure most people on here feel the same and it brings me some comfort that people are reaching out.

Thank you xxx

Teazymaid profile image
Teazymaid in reply to Insaneinthemembrain

My husband and everyone around me have no idea .. I show the world I’m alright yet underneath IM fighting everything .. I’ve crashed recently and am now being more open about what life is actually like and more open to me as well .. .. I do know that Others will have no idea what I’m talking about and it’s this place that has helped / supported me as you all know .. don’t give up being on here as your husband thinks .. he is just a very lucky person to not be knowing how we feel .. 😊 It’s been the best place for me to not feel so alone .. actually I’ve just been thinking I have no idea how I joined this group 🤪 the joys of a crap memory 🤪 but if anyone doses know how you join this group please enlighten me ..Sue 🤪

Insaneinthemembrain profile image
Insaneinthemembrain in reply to Teazymaid

thanks for your lovely message Sue .. it’s important to know others are out there!

I was reading something recently that said people who suffer from head injury’s are referred to as ‘walking wounded’ so hard to keep up with everything.

Trying to take small steps. One day at a time and trying to stay positive. I think it’s the panic attacks that are the worst.. my brain has been in constant flight or fight since the accident and it’s exhausting.

I hope you have a good weekend.. reach out again and let’s keep each other going?

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