The Survival

[Tony-Muzzy]

This is not a post claiming self pity or a need for gaining people to feel sorry for me. This is to hopefully help people gain more understanding of similar peoples lives suffering with genuine cognative fatigue & depression due to a head injury;

This picture is how my life has felt since 2007!

I'm walking a lonely path even when surrounded by loved ones. There have been periods of darkness, the gaps between each street-light have been significant. Also at times my steps have been uneasy, without balance.

At this time I am experiencing walking into light at the begining of a new day, i'm stuck in a realm with no purpose, contemplating all the wrong that has occured to me, I am then overcome with a need for justice!

Time passes & I've achieved nothing.

I then move into darkness attempting to gain rest. My head is busy with all these thoughts. I am engulfed in a dark realm where there is no rest. Eventually out of cognitive exhaustion I drift into a tortured deep sleep.

I awake back into a new day under a new streetlight. My first thoughts are a brand new day. A positive new street-light, let's be happy & make this journey better than yesterday. I hit myself full in the face with guilt for not being there for loved ones yesterday & for thinking about myself. I then start blaming myself for anything & everything.

Before you know time ticks by & the positivity has gradually ebbed away back into the darkness. Again nothing acheived. 😕

It's now time to rest my mind again.......!

Again the inside of my skull has a negative game of raquet ball with words & situations until I litterally can take no more & out I go.

I feel at times the pathway appears straight & simple, I can see a clear definition of light & darkness but 'bloody hell' why does this feel like the continuation of walking on a 'shit' round-a-bout.

I read a simple thing this morning & it put it all into the context of people just don't understand how a negative mind can twist the the most simple statement.

A loved one asked their partner "Why did you try to kill yourself?"

The partner replied "You told me all you wanted for me was to be happy!"

The one thing that makes all this worse for me is I know people out there are suffering with fatal illnesses like cancer & I again I mount up the guilt on myself for feeling this way, thinking that it's just self pity

I have to keep telling myself you smashed your head into a bus stop at 30 mph & you've recieved a traumatic bleed to the brain. There is permanent damage but I need to be kinder to myself. 😕

I know the damage is permanent but I hope to end the intensity of pain & the need to battle one day.

😉

[paxo05]

It is true the peaks and troughs you go through. The guilt of knowing others are going through worse things yet you find it hard to move forward.

Remember yes others are going through tough or even tougher times. That doesn't mean that you are not.

This is NOT self pity. It is just the way it is. Part of a bi is getting to grips with actually thinking straight.....easier said than done.

It is also hard to not feel guilty for admitting when things get harder on some days than others.

All this is not asking for sympathy but asking for understanding of the effects of a bi.

Pax

[hazyjane77 in reply to paxo05]

Not asking for sympathy, but understanding. I hear that. People don't seem to get it, even when I say those same exact words. I'm just trying to explain sometimes why I'm responding a certain way, or why I need help with something. Yet it's always interpreted as me feeling sorry for myself. Ugh 😑

[hazyjane77]

Hi there. I like how you were really able to articulate the way a broken brain just doesn't run linearly. My brain has been like that for several years now. People think I'm feeling sorry for myself is the biggest insult too. I feel like asking them, "When would I have time for that, between fighting to keep breathing and making sure the right words come out of my mouth?" Give me a break.

Some bits of light to give a flicker of hope, "Yeah, I can do this... Fade out.. "Oh, what was I saying?" Thanks for sharing, I guess is what I meant to say. I used to write and can't do it anymore, but I think what you wrote here is so very well expressed. At the same time, it kinda sucks that someone else actually feels the same kind of lonely suffering. Sorry if this doesn't make sense.

[paxo05 in reply to hazyjane77]

I suppose part.of me may wish I didn't know what you mean but most of knows exactly what you are saying.

It's been a while for me feeling like you in and out of shadows. 18 years of first accepting the new me to adapting to this new life. Then finally getting used to how I now function.

I now no longer apologise for how I am. If others cannot accept this then it is there problem to deal with....I have enough problems of my own.

I to am not seeking sympathy but only acceptance. I have learnt to try and pace myself so as to achieve my goals. If I am honest I fail as much as I succeed in this.

As I am being honest here I can relate to " between the light" analogy. I try and convince myself that my depressing are over. Realistically I may have it under control but I feel it lurking on my shoulder at times.

This forum is one place I know that I feel true acceptance without having to explain to deeply.

Keep dodging the shadows.

Pax

[hazyjane77 in reply to paxo05]

Thanks for sharing some of your experience. 18 years? I've only been living with this brain for 4 years, so if there's any advice you have to offer, I'm all ears.

I want to get to the point where I don't apologize for who I am now. How did you get there? Was anything helpful? I apologize when I ask people to speak slower for me to understand, or when I need help with some physical task that I can't do, or things like that 😞

[paxo05 in reply to hazyjane77]

Mmmm when did is top apologising for the new m????...afraid I still do now and again.

Any help I will gladly give. There are others on here that have lived with a bi longer hopefully the can give help to.

Right firstly.....I don't know how far along you are.....accept the new you , faults and all.

Know your limits and stick to them. Not an easy one that.

Don't waste touch time and energy constantly explaining to family and friends how much you have changed. If they dont get it now they never will.

If your memory is bad throw every aide you can find at the problem. Different things work in different cases...Don't know why but it does.

More importantly rest and try and not be to hard on yourself. Others may do that for you.

Oh and try and enjoy life again.....It is allowed.

Pax

[hazyjane77 in reply to paxo05]

Thanks for offering support. I'm new here and it's so refreshing. I would love to hear from others too.

I'm nearly four years from a stroke. Lots of faults to accept, but not quite there yet. I have gotten better about knowing my limits, removing myself from environments that are overstimulating/confusing, and even letting go of people who weren't willing to accept me as I am. But the truth is I continue to struggle with this new me who can't do all the things that brought me joy. It's hard for me to find new things as I have mobility problems and am home bound. So that's where depression comes in too.

My short memory sucks. I write everything down. I use post it's, bulletin boards, a reminders and alarms on phone and other devices. I'm sure there are better methods, and I hope to learn them.

My peripheral vision was affected by almost 50% on both eyes. So painting, writing, reading, are very challenging visually. I get very frustrated, and this aggravates neuropathic pain on my affected side, and all holy hell will break loose inside of me. Eventually it pours out of me with just one more thing that I used to do without thinking is especially difficult for the new me. So here my relationships suffer. You're right, they'll never get it. I just want them to stop expecting the old me. Yes I'm still that soul, but I'm not that person anymore. I have very concrete limitations that don't let me socialize travel as much as I used to, go out on adventures and take risks... Now it's risky to just get out of bed. I'm in pain every second I'm awake too. My body and brain can't do the things that people ask of me. It'll seriously hurt me, land me in hospital. So I keep reminding them, "Look, you know that spot on the MRI? It causes x,z, so I can't go play laser tag, remember?" I've let several friendships just fizzle out because I'm not going to put forth all this effort, be physically and emotionally destroyed, if you're constantly neglecting who I am now.

Still seeking joy. Trying to find other ways to enjoy art, and seek adventure in this new body. It's not easy. Thanks for your thoughtful response.

[paxo05 in reply to hazyjane77]

If only we could say do this and you will be better.

Alas we can't as every bi is different. Also what works for one may not work for you.

Any advice you will get may not work...Then again it may.

Even things you have tried that don't work may work in another situation.

Myself my mobility is better. I can get out but like you I am in constant pain.

I got to the stage of thinking if it may hurt to do something then give it a go as i am in pain anyway.

As for art I started painting ( I did sketchest before) just to unwind and lose myself. They may not be good but I enjoy it.

My old friends have one by one gone but I have new more understanding friends now.

I may have overlooked an obvious thing but if you haven't already then contact headway to see where your local group is. These vary in what they offer but are a great place to go when you can attend.

Pax

[hazyjane77 in reply to paxo05]

I appreciate your frankness. I understand there's no magic bullet. It's true that what works for someone else may not work for me. But as you said, it may...

And I'm more open to trying things than I was at the beginning when I was being bombarded with it and couldn't understand or be bothered when my skull was still freshly stitched up.

Yes, please don't hesitate to state the obvious! I think Headway is only in UK, though I'm looking into it.. I think i can find a similar similar organization here in US though. Will keep looking thanks. Hope you're having an ok day. I just made lunch and am so fatigued, i have to rest before i eat. The aromas/flavors set off sober sensitivities and pain increases. So hungry, but need to just relax for a bit. Ridiculous 🤦🏽‍♀️

[paxo05 in reply to hazyjane77]

It's evening over here so keep nodding off. I semi to nap a lot now even through the night.

I think if there is a simular thing in the US even if it's not called Headway.

You will still improve over the years as you get used to the new you.

Pax

[hazyjane77 in reply to paxo05]

Thanks. I hope you're right. It's afternoon here but it might as well be night, I'm so tired. I too nap through the night. I never feel rested. Hope you have a good nap!

[iforget]

Tony-Muzzy I do not see self pity....and its probably zero comfort but you are definitely not alone in feeling this way. I have no idea where each day has gone or what if anything I managed to achieve on any given day. It feels like nothing and probably is... But for the most part I live contentedly in my little bubble... only when reality comes crashing through do I feel the pain. It seems we are working a similar timeline... My TBI was in August 2006

[CH56Twin]

Hello Everyone i am sorry but I haven't quite sorted out who is responding to who here - I can get confused quite easily. But I do think that these set of posts are very inspiring and there are some very wise observations and comments made. Nearly 2 years on from my brain injury I also find myself still struggling with feeling the need to "explain" myself and the embarrassment this can cause me. Not to mention people taking advantage of me - but that is a completely different story for another time.

My observations at this point is not to expect anything from some-one who has not had a brain injury and if you do meet a person who is truly non judgemental, non critical and/or patronising- then that is a huge bonus. And if you are lucky enough to meet a person of this calibre try to keep them close, cherish them and value their friendship. Why? Because they are special people and sadly they are rare. Please believe me I am not a bitter person but my experience has taught me that it is truly a skill to understand the world of the brain damaged/impaired person. Most people can't do it. Another pointer I have found - some think they can understand and are way off the mark. Best advice -avoid them.

We all of us do the best that we can and that is all that we can do.

[Yb007]

Despite it being sad. This is a beautiful piece. Hope you're comforted by the fact that you still can write so well