Trying to live and thrive with an acquired brain i... - Headway

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Trying to live and thrive with an acquired brain injury

Hayloft64 profile image
22 Replies

Hi, I’m me! I had a SAH back in May 2017 and whilst trying to remain positive and upbeat, I have to admit, I struggle!

I used to have a career, but they fired me! I am now told I will never really be of any use in the commercial market. That really doesn’t make me feel good!

I have an amazing family who try so hard to embrace the new me and make allowances for the new me but is that fair on them to have to do that all the time?

Is there life after brain injury? How do you learn to accept it and forge a new path for yourself? I felt I had so much to offer but I’m beginning to think I was wrong! Is there anyone who feels the same?

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Hayloft64 profile image
Hayloft64
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22 Replies
Joey53 profile image
Joey53

Dear Hayloft64, hope your health getting a bit better, and you are having some supports, whiches I find extremely Necessarily, I am also strougles to adjust to the new life after acquired brain injuries, it's absolutely no easy, particularly when we used to be pro-actively +Dinamically, sharing. .,on my case, I'm totally alone, and believe me or not, I don't missing the hospital atmosphere or the foods, but I Absolutely missing the Nurses /I calls them angles, that tooks the most affectively, Genuinely TLC, priceless! After discharged, is just anxiety +depression +loneliness, hopelessness, and a extremely apprehensive waiting to be treats to my remaining Aneurysm! I wish you good luck and Faith, but if you have people who really cares for you, and you can relies on them, asks for they help, I wished I have someone's to asks, but this wonderful community can give us a lot of knowledge and supports,

God bless you and your family.

Hayloft64 profile image
Hayloft64 in reply toJoey53

Hello Joey

Thank you very much for your kind and heartfelt message. I hope that this community can help you to find some relief too. Take care.

SAH-survivor profile image
SAH-survivor

Hi Hayloft

I had a SAH in Aug 2018. Nearly a year on and I have some good days but mainly bad. I really struggle at work even thought they have changed the hours and changed my responsibilities. I know it is extremely difficult but I have to think that ‘at least I am still here’. I am on so many different medications, and even then feel like this. Rely on those close to you and get involved in something to get your mind thinking differently. Maybe Art, walking, volunteering. You must do something to keep your new you active.

Hayloft64 profile image
Hayloft64 in reply toSAH-survivor

Hi SAH Survivor,

I’m really glad your employer showed understanding after your SAH and that changes were made to enable you to return to work. That in itself speaks volumes about your determination to persist even when it’s hard. I applaud you. It’s a challenge that you’re doing your damnedest to not best you.

I will look at finding something that the new me can do.

Thank you for your words.

I had my sah in January 2019 and got through the first few months thinking I would return to work at some stage, but now rethinking it may not be possible as I can't deal with being around other people as it stresses me out to the verge of meltdown. I thing the whole process is a learning curve trying to get some sort of acceptable life back. It's more of getting to come to terms with what you have left in your life rather than wasting time on the things you have lost or can no longer do.i hope you can find some happiness and peace in your life, I strive to come to terms with life every day since my head went bang.

Hayloft64 profile image
Hayloft64 in reply to

Hi Jasonwellens

Wow! Your SAH was very recent in terms of both recovering as much as you can and dealing with the changes it has caused for you.

The changes in your abilities are really new to you and it’s no wonder you sometimes feel stressed out. I think we all feel like that more often than we actually care to admit.

Give yourself some time and don’t push yourself.

I wish you well

in reply toHayloft64

I try not to overdo things, got more scans in a couple of weeks and they will then decide wether to operate again.

Hayloft64 profile image
Hayloft64 in reply to

You have the right approach. You need to take it easy more. I hope the scan results are more positive than perhaps you anticipate and that any decisions you have to make are not too stressful.

Hi Hayloft, think of it all in a different way. Your career was built on training and experience, your brain has been 'hardwired,' programmed if you like, like a biological machine. It sounds like it was good programming and you found fulfilment and joy carrying out your functions. Now the machine is broken and the programming messed up and you are not functional in the bigger machine so they have replaced you and thrown you on the scrap heap.

Scrap is valuable and the still working components can be utilised in a variety of ways never even imagined by the original creator. So my thinking is find out the status of your component parts, get assessed by a neuro-psychologist, find the status of your cognitive abilities. Use your strengths to begin to develop a new machine.

I came across a good saying 'a brain injured person has the brain of new born baby with added memories, experiences and functions'. Experience life again as a child, play, create, develop relationships and learn skills. Your brain plasticity will develop new pathways around your strengths and you will become renewed.

You will become a new person literally, you are only your experiences wired into your brain in the physical world. There is also your consciousness, I strongly advise you to to find it and connect. Try meditation and separate the conscious from the physical world, understand both and fuse them into a newly functional being.

Look at it all as an amazing opportunity, a chance to have a new different life.

A person is never the finished article, it's always in a state of change.

Hope this helps.

Hayloft64 profile image
Hayloft64 in reply to

Hi Pinkvision,

Thank you so much for your wonderful reply. So eloquent and well thought out. It is really touching.

I have been assessed by a neurologist-psychologist and am trying to learn to both accept her findings and deal with them.

Your words make so much sense and seem logical. I just wish I could put it all into action! Im a work in progress and will get there in the end, hopefully.

Thank you

in reply toHayloft64

Life in reality only goes forwards, good luck take care.

Froggiefrog profile image
Froggiefrog

Whilst my situation is vastly different to yours, I think generally, there is common ground which you may or may not find relevant.

My recent surgery to replace an infected shunt I had for congenital hydrocephalus leaves me wondering how I will cope with the deterioration in memory, fatigue and information processing ability that may be due to post op fatigue, or simply that I am 53.

How my situation affects the job I do is simply a part of how it affects every aspect of my life. Yes, I have to earn a living and the possible prospect of being dependant on my partner in this respect is awful, but, it is also what motivates me to ensure I do everything I can to focus on what I CAN do and if necessary, re-invent my working self to accommodate this.

The approach I take would not be appropriate for everyone, but involves focusing on where I am now and what I can do to make the situation as good as it can be for me and those around me. It does not dismiss the past, but it put it firmly in the box marked ' things I cannot change ', which ensures I don't get too fixated with comparisons when I know it may not be constructive to do so.

I cannot ( and would not want to ) change the past, but the past is exactly that. I intend to focus on where my strengths lie and put them to the best us possible, rather than dwell upon functions that are not what they were, as long as there isn't something I could and should be doing to enhance them.

Without wishing to sound like a parody of a motivational coach, of course there are things you can 'offer'. The 'what' and 'how' of this may no be clear at the moment, but they may become so...and may happen sooner, or take longer, as you are an individual, not a set of circumstances.

Like you, those closest to me are amazing and I am acutely aware of the disruption my own circumstances have on them. I know I feel guilty about this, but the goal of being someone they can engage with in an equal basis, not as a burden to them motivates me.

The people who matter the most to you may also be able to offer a different perspective on your strengths and identify things you may not have seen in that way, or even considered.

Once again, I emphasize that your situation is different to mine, although, hopefully, that does not prevent you from taking this reply in the supportive way it was intended.

Take care

K

Hayloft64 profile image
Hayloft64 in reply toFroggiefrog

Dear Froggiefrog,

Your well meaning words were taken totally the way they were intended and it’s amazing the support that has been shown on this site.

Even though you imply that you struggle with lots of things that you’re dealing with your determination and desire to move forward are so apparent in your kind and supportive words to me.

I hope you too take strength from your loved ones and realise you have nothing to feel guilty about.

Take care.

bonfire profile image
bonfire

Hello!

I like your use of exclamation marks!!! It makes your post sound cheerful! Welcome to the scrap heap!!! You’ll be ok.

Hayloft64 profile image
Hayloft64 in reply tobonfire

Hi Bonfire,

Thanks!! I perhaps use them too much me thinks?!

I don’t think we’re the scrap heap. We’re just becoming a different version of ourselves and who knows, this one may be the one we prefer.

Thank you for the cheery welcome

bonfire profile image
bonfire in reply toHayloft64

Hello and welcome Hayloft!

Exclamation marks are joyful things! Good luck with your choice of course and take it slowly!

Froggiefrog profile image
Froggiefrog in reply tobonfire

Perhaps there should be a gathering to celebrate the exclamation mark...held in Westward Ho! , of course.

Hayloft64 profile image
Hayloft64 in reply toFroggiefrog

What a good idea! We can tally ho to Westward Ho!!

Froggiefrog profile image
Froggiefrog in reply toHayloft64

Agreed!!

bonfire profile image
bonfire in reply toFroggiefrog

Yay!!

ErinSAH profile image
ErinSAH

Hi hayloft,

I had my SAH in 2012 so quite a while ago now. I had the same questions as you at the time, when can I get back to normal and feel normal again. And early on my big question was, can I get back to work...

It’s now 7 years on, after 2 I was in work full time but was still very unwell so left to go back to studying, did that for 4 years and have just started a job a few weeks ago.

My advice now looking back, would be that it all takes time and try things, new things if the old ones don’t work anymore. Like a part time job, or even volunteering to see how a routine goes.

It does get better in time, and if it doesn’t, we learn to adapt.

But I know exactly what you mean, I still miss my old self terribly sometimes, and think of where I could have been a lot. I feel like I’ve missed out on times/ years of my life as I was in my 20s when it happened. And I also feel that other people just don’t understand.

iforget profile image
iforget

Hi there Hayloft 64... oh my goodness I think most of us will be able to relate to this.

On 1st August 2006 I was in a senior position at work and had responsibility for overseeing regional services, a direct team of 36 front line staff and a budget of millions...

On 2nd August I had an accident at work and life part one was over in an instant.

The first year post accident I was in a total no-mans-land. I had zero idea what had happened or what was going on. I lived firmly in a little bubble of "right now" and as time went on and nothing improved I started to feel doomed.

By the end of July 2007 I was out of work ( I went back but even with adjustments it was pretty clear I could not function at the required level) and it felt like I was on the scrap heap. Once out of work I quickly discovered how much of my life and identity was wrapped up in what I did for a living and that once I could no longer do that stuff (and believe me I tried and tried again) I lost even more of my sense of self. My friends, unable to cope with "the new me" started to drift away...this infuriated my family but actually I barely noticed because I had nothing in common with them anymore any way. My priorities and interests had changed.

There were a few bumps in the road in the next couple of years and adapting to my new reality wasn't easy - I was a keen self saboteur for a while, refusing to accept my new situation- but over time I finally started to settle and find my place in the world. I'm not sure how and when it happened, I think it was a gradual thing, but happen it did...eventually.

Fast forward to now and I am enjoying life part two. It may not be the life I had planned but its a good life. I am pretty much stress free which is a huge bonus. I am now a mixed media artist and immersed in a creative world. I get to make art and to teach/help others how to make art and I love it. I got involved in volunteering and facilitated an art group with patients at my local hospice which is so rewarding

Before my accident I did not have anything to do with anything in the slightest bit arty, but I found I had an interest in creative pursuits and it gave me something to show for my time.

I still have the same cognitive issues gifted to me by my TBI. I still have anterograde amnesia and still have to use strategies and gizmos to get through daily life. I still have balance issues. I still have sensory issues and get overloaded but I have this life and I try to make it the best I can....for me and for my loved ones - who definitely benefited from my gradual acceptance

Its not the life I planned but its life and its mine.

Please don't lose hope. You WILL find your place in the world...or it will find you....and it may even surprise you. These things take time and while I hated hearing those words, I know them to be true. Hang in there.

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