Brain Injury and Rest

As many of the members here are aware, I have been battling for years(5yrs since my most debilitating incident) . My aim was to return to work. I have now accepted (reluctantly) that this is not going to happen, but after all of this time I’m very disappointed my stamina has not improved. I tried to convince myself and others that by pushing myself I was building stamina. Yesterday it all came to a head (no pun intended), my biggest supporter, my wife, has made it quite clear that I MUST rest when I need to rest and not try to continue, pushing my own limits.
I hate this lose of control, this inability to do as I once could. I have the want to do, I just no longer have the ability to do. Some dr’s seem convinced that after 12 months, physically everything has healed so it’s a psychological issue that is holding me back. My pcp, who is an older man has a totally differing view that brain injury healing is unlike any other injury within the body, and I agree. But some of the younger doctors and specialists have very closed, black/white opinions. When I have tried to meet their expectations I have failed. I try not to take on too much. I try to take time to absorb and process information, one step at a time. I try to limit myself, limit my activity. Rest when I need it, but I’m having a real battle.
I am frustrated as all hell.
Do others have issues meeting their own (and dr’s) expectations??

Merl

Rest is job number one!..I was told, looking back, that one year would be a good check in time, what improvements and all.
Then the 5 year, look back.
Then 10 years…
Now im in over 11 years, its all a haze and blurry to me!
I will say that when WE decide to drop our ego, and just try and live simply, life get easier…Now I bet nothing has changed in the big picture, but when I accepted who I am now ,and will be in the future, things are much smoother…

I hope, not just you but anyone who reads this…as difficult as it is to say, and harder to live by…Acceptance is the key to far more happiness in life!..We still get tired, we still get confused, and all the other horrible side effects…But we are alive, and we must find pleasure in the simple things in life.

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Its been 16 years. I can push myself to a certain extent, after that, its a big mistake that I will pay for later and not worth it. I don’t think a lot of the drs I have seen anyway, understand all the ways that these TBI’s can affect ones life. Unfortunately, some of them don’t see to have much empathy either.
I’ve leaned that when I feel overly tired or sick, I need to rest. Sometimes just to lay down for 10 or 15 minutes is all I need to feel better. Other days, I think I am gonna do that, and I lay down and wake up an hour and a half later…
And I agree with what davOD said about acceptance. Its just hard to do.

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Merl,

You express, “I am frustrated as all hell.” And you ask “Do others have issues meeting their own (and dr’s) expectations??” I have always wanted to have a personal impact on the environment and I wanted to see my will and ego extended into it. This determination became a fighter against my environment and also this power to get things done. My power became this male drive, which made me extremely macho, a man’s man, although others regarded me merely as boastful and arrogant. It felt like I had to prove my superiority by what I could control and dominate. When I had confrontations against others I made sure I was the superior person of a stronger will. Even now, with my cells no longer producing sufficient energy for my muscles and I am dragging my body around, my ego inflation is difficult to stop. I am still getting pissed off, even when I have been placed on this stage of acceptance.

My struggle with this stage of acceptance is the powerlessness it creates and I associate this closely with hopelessness. For some reason this hopelessness creates emotional conflicts within me and my difficulties fan the flames of self-doubt and self-hatred. This can make me withdraw into a darkening world of more torment and despair. I get overly touchy and too ruled by my feelings, which can make me believe I can find a solution to my emotional turmoil by endlessly replaying my problems in my imagination. I go around and around, stirring up emotional crosscurrents and this draws me father inward, until I lose perspective of myself. This undermines my ability to deal effectively with life, I know.

For me, my emotions are stronger than knowledge and will override what I know. I can even have full understanding of acceptance, even want to participate in it, and then the powerlessness hits me. I do not want to accept feeling powerlessness. I do not want to feel I am inadequate and defective, unimportant and undesirable, shameful and misunderstood by others, distraught and fatigued, and then feeling this inability to walk. I will refuse to go on being tormented and sometimes I contemplate suicide, as this aggressive act is withdraw without feeling guilty or facing the consequences. When I am despair and I have rehearsed suicide in my imagination this is dangerous because I will act without any consideration or warning to others.

It feels like I cannot commit suicide so I am trying to free myself another way. I am now wanting to be at home in being a failure and being humiliated, even by my own body failing me. Accepting this powerlessness, even the hopelessness mixed into it, sometimes makes the void okay and other times the lack of acceptance creates this black hole. And maybe my emotions are not as lush they use to be and maybe I am not as bitter as I use to be, but his stage of acceptance takes guts for me to face the powerlessness.

This raw material and the courage to accept is a meaning beyond me and yet it seems if I can be open, as I am trying to be here, this seems to let the acceptance flow within. This acceptance seems to let the opposites create and when I accept this seems to give me enough emotional balance to be touched and transformed by the small events of my life. Even this negative, powerlessness and hopelessness, can maybe, after all, can be turned into something positive and peace can be found. Acceptance, where every experience is transformed into something worthwhile and valuable, maybe can be the sharp otherness of everything.

You are not alone, as you communicate in your writings and maybe alone in your individual consciousness, but the unique otherness of you is your ability to offer tremendous support to all of us.

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Merl
You need a physician that understands TBI nos and changet some Fudd. Call around and find a physician that takes your insurance that has patients with TBIs and change. My PCP is clueless about TBIs but I have a second doctor that I go to that is not. One thing that apparently accompanies TBIs is out ability to produce adrenalin and out mitochondria do not produce energy properly. There are meds that can make a difference. I just started Amantadine a month ago and my Dr. is allowing me to determine my own dosage as the smallest pills 100mg had me bouncing off the walls so I am taking the liquid every morning…I sure is making the difference.

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I have never been one to try to meet the expectations of others. I am a strong, hardheaded person, and know what I’m capable of. You sound the same so my advice is listen to advice from people who understand your condition, and do what you can. Don’t allow expectations of others to be a concern. Do what you can.

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Apologies to everybody who responded, my computer system died a horrible death and it wouldn’t boot up, so I booted it. I only received the new system today, so please forgive my tardiness in responding but it was all beyond my control. Damn technology :grinning:

davOD,
Me and ‘rest’ have never been friends. I used to have 2 speeds, full on and sleep. My aim was to get back to ‘normal’, ok so I’m not going to get back to normal (or ‘my’ normal) I’m not sure that ego and self expectation is the same, but it was my self expectation that drove me. I believe that that was what annoyed me about the medical fraternity, my expectations of me FAR outweighed what their expectations were. I felt that they thought I was just being a lazy sod (and I’m sure some of them did) but those close to me knew that that was far from reality. You use that awful damn word I keep seeing ‘acceptance’, but I am learning the reality of it and I am also learning to find pleasure in those ‘simple things in life’.

Aly,
My last incident in '13 was not my first. After my first I pushed myself along and got some of my abilities back, so when '13 came along I tried the same tactics. But as much as I pushed my body pushed back. Now I have learnt as you say “…its a big mistake that I will pay for later and not worth it…” I strongly believe you are correct in regard to the dr’s, some of them truly have very little context on which to comprehend the full impact a TBI can have. As for ‘acceptance’ grrrrr I hate that word although it is becoming clearer, I have very little choice.

Syd,
You speak of ‘powerlessness’ and I think for me that is part of my drive to push myself more than I should. I never wanted to accept this reality, so I pushed against it, pushed myself further than I should have. I told myself I was building stamina, but I was in fact driving myself into the ground, I just didn’t want to acknowledge it. I too have had that struggle with some awful demons and the more I pushed the less I had to think about them. But ignoring them doesn’t make them go away. I needed to confront them and as time has gone on I think I can acknowledge them better by knowing I haven’t given up but know that my limitations have changed. I can still do, just not at the levels which I was once able.

Hartcreek,
Here in Australia we’re lucky enough to have universal healthcare so we don’t need insurance to see some of the best specialists, there can be some additional fees on top of the regular fees, depending on the dr, but usually they aren’t exorbitant. My pcp is really good but I have to admit it took me a bit to find someone with a bit of understanding and not just hand me pills and potions. He’s thorough and investigates options.

Karyn,
Ohh I do ‘try’ not to take on others opinions, but the people who should understand my situation the best are the medical profession and yet they seem to be the quickest to be passing judgement. The people around me know how hard I am on myself and as you say how ‘hardheaded’ (some would call it ‘pigheaded’) I can be. I think part of it is that I knew what I used to be able to do and for some pigheaded reason I feel I should still be able. So it’s not just other expectations of me, it’s more my expectations of me.

So after all of that…
… I want to thank you all for your responses. They have given me some things to think about along this journey of highs and lows. I think some days I seem to have such clarity and yet others are like mud. I also find that having others to bounce off helps me to see and accept the reality of it all and that means a hell of a lot to me, so thanks.

Merl

Only my own.

I hear you: it is really frustrating.

Yes, VERY frustrating. It’s my own expectations that I can’t meet. My expectations of me are far greater than the medicos, so although I can’t meet their expectations the frustration comes from the fact that I can’t meet my own, not their’s. I’d gladly give them this for a day, only a single day and see how they’d manage. They think this is easy, but a single day would show them just how UN-easy this reality actually is.

Merl

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