Maxed out
 

I haven't contributed much lately around here. I don't feel I'm in the position to help anyone and I think I've used up my quota of quasi-intelligent questions. At this point I'm left with just complaining. :( So be warned, herein lies my unloading. It's not pretty.


My progress since injury in late Oct 2012 is disheartening to me, yet I feel like I live in two different worlds.


In the "real" world this "recovery" is going on four months now, which is incredibly long. (To WCB, to my workplace, to ALL doctors, to the neuro psych assigned to me by WCB, to my family waiting for me to return to normal, that strong career mom they couldn't even keep up with)


In the injured world, and my inner world, I'm "early" in recovery. Odd, how this is the only world where the four long months are downplayed. The same four months makes the "real world" freak out, yet here it's like misery has only just begun. I'm in baby stages of this long, long miserable journey which seemingly never ends in recovery.


I've been seen by a psychiatrist ordered by WCB who says I'm not depressed. I've been seen by a neuro psych ordered by WCB who says I'm likely only a couple months away from recovery, he's "quite positive" I'll recover at six to eight months. (No full report yet, cpl weeks at least til it's ready)


Yet I feel depressed to the point of giving up just like everyone else. I'm no braver. I'm not dealing well. I know it's good that the psychiatrist reported to WCB that I'm not depressed so they didn't toss me aside as not injured. I'm just afraid he's very wrong and I am thus left without help or therapy for these thoughts.


If I'm not depressed why do I long to just disappear? Why do I feel so alone? I dare not admit it! Because I know if WCB catches wind that I'm depressed, well then I'm cut off and working!


The NP testing last week had me disabled with pain for a week afterwards, to today. Pain brings his friend, despair. I have cried more in the last week than since injury all together.


I even think I did too well on the NP testing because (sorry this will sound arrogant but it's poetic justice that I'll never get it back) prior to injury I was fairly intelligent and my brain was my favourite thing about me. I fear I did too well based on his comments saying I did very well besides short term memory and processing.


I am terrified I'll be forced back to work soon. (Not even close to ready, not that it matters. It's a matter of WHEN I return to work to lose my job, not if. My career is over, in casino marketing and events there's no room for slow people who can't multitask in a bright noisy place) Well meaning folk say its too early to decide that. But there are some things about the self, that you just KNOW, right to your core. I will not perform well in that environment and I'd never hire myself (this new self) for that job. Can't expect to keep it.


My relationship is buckling under this pressure. My cardiac patient husband should not be subjected to caregiving stress but he is. It wears on him and I feel so guilty I'd rather die than be a burden to him. He is exhausted and thus really wants me to be better. He wants relief. I want to give it to him. His recovery is paramount. He could live another ten, twenty years if he could reduce stress.


I'm nothing but a source of stress for him. If/when his next heart attack hits it will be largely my fault. He's doing everything right, exercising and eating right. The only factor left to hurt him, is stress that I bring, because he's got to care for me and I'm no longer a productive partner.


The only thing holding me here is my son. He is my only sunshine in a very dark world.


I have not one friend left. Not one. They don't want to hear this misery. I'm formerly their entertainment. Now I serve no purpose. Platitudes are all they can offer me anyway. What a pitiful remnant of superficial relationships.


My son is returning to hockey today after his concussion five weeks ago. He has done very well in recovery and wants to play. Hockey coach dad, wants him to play. Doc cleared him to play. Causes me anxiety like I cannot even express.



I'm powerless since no one in the family listens to me anymore. Just Mom crying again. They are tired of me being someone they don't remember. In her pitiful earplugs and perpetual frown.(I don't try to frown. I can't concentrate and thus brow furrows trying)


Husband says you're never happy anymore. Well gee I'm sorry. There's an axe in my head. And some other things I forget.


Today I saw my relatively new GP. He had me on Elavil 10 mg at bedtime for the last 2 weeks. It improves my sleep but not pain. He says to up the dose to 20 mg. I guess we'll try.


Then he says brightly "well, you look better than you did last time. You're talking better. Less stuttering and your thoughts seem better organized." Well my husband jumps all over that and says "yes she is getting better."


Of course. Because if everyone says it enough to me, it will just magically happen? I was so insulted. Like my pain is just some positive thoughts away from being vanished! Positive thinking cures all! It's a miracle!


I'm sure they thought it was encouraging. Doesn't everyone think they're encouraging? Plus, they want it over. No one likes the long haul.


What am I doing to recover? I'm relaxing. Doing acupuncture as ordered. Tried light exercising when I was doing better before the NP setback. It hurt. Now I can't imagine when I'll be ready to try those measly five slow minutes on a recumbent bike again. And who are we kidding. Five minutes slowly on a bike is helpful in what way? None. It just brings pain.


I'm taking prescribed meds. I'm icing my neck every single day sometimes many times a day. I don't watch TV, blah blah, eating right, supplementing.


So the doc sees me on a less awful morning and says oh hey! You're recovering! And my husband takes that to the bank and cashes it.


So how will it go when I crash again, because ALL of these crashes come and go? This latest crash took ALL of my hope away. I am skeptical of recovery. I think we only get to a point of admitting some defeat and utilizing work arounds yet living forever changed. The NP test would be equivalent to a workday for me. And it ruined me to this day, with intense pain and total brain fog.


No post it notes are going to help me there. Seriously what are we left with?


And if I try to convince husband or doctor that I, in fact, feel awful but have been just trying to cope, they will say I'm being negative. And we all know how positivity is a miracle cure if I just accept it. Best not work against that miraculous positivity!


It's all bunk to me. Everyone telling me how I am. No one asking, really asking, how I am. Or who I am now. Because I feel forever changed and no one wants to deal with that.


And the only place I can unload is here, and I've likely alienated most of you with this post. I hope not. I hope at least one of you makes it through and isn't turned off by this despair. If you were I do apologize. I have nowhere else to be real.

Just lots of hugs from me. :hug:

I do understand where you are coming from and what you are feeling. At various points in the last year, even lately, I could have written that myself.

There's nothing I can say that will make you feel better, I know... but I'll send good thoughts your way and hope they give you some strength to keep going.

Venting does help... so vent away. :hug:

Starr

I agree with Starr. Same experience...feelings, etc. You will improve! For sure! It really is early yet...and you just need to have a plan to exist hour by hour. That is what I tried to focus on. Now I am more day to day, which is a HUGE improvement. But we need to acknowledge that you are going through hell. Hang in there. Get through one more hour. and then another. and then another!

Time will pass, you are still you, things may change, but you are still you.

Last bit...don't worry about exercising. I would skip it all because you probably have pretty severe dysfunction at the vestibular or vision or balance or movement levels. You can always get back in shape after. That is what I have started doing after almost a year and a half. As you said, the brain is number one for you, not the body!

Re: friends. Accidents have a way of distilling the important things. If they are not there for you now, that means they never were good friends to begin with. I am learning this myself. Not easy lessons, but important ones.

lots of good vibes to you and your family.

The pain
 

Mother to mother:Heart: I am so sorry you are going threw all these problems and I know how easy it is to want to give up when you feel you have to live in such a horrible way everyday. I have been there done that and lost everyone even my family but they came back after my neuro stamped this beast of a diagnosis.

I lost everyone and was the evilest person alive I felt and am going to be real with you that I got medication and everyone thinks as well I am better....well I am because I have one melt down in 5 days versus 5 melt downs in one day!

I do not know what to say about you and your casino job and your health...because yes you do need a antidepressant to stabilize your moods and not get stuck in this dark hole of hell....I know it is adding more stress on you to think about going back to work...as I recall a post of yours back in Dec when I joined you had this same fear?It has became a burden on top of all the other symptoms,family,anxiety etc...

I can tell you from my experience that I would not ever want to trade money for these beast that I have been battling for almost 2 years...I had to give EVERYTHING UP and sign up for disability until a later time then I can go back to my dreams....This is not a scientifically diagnosis that we will ever be 100% but we can get close.

I really do not know what to tell you for a solution but I will tell you that I hear you from afar and I know exactly what you are going threw with MDs,family,evil thoughts,hopeless,worthless,symptoms etc except your Insurance and your job....I had to just throw the towel in and stop all my schooling and my own biz for state assistance and disability....There is a lot to digest and everyday is a struggle but just know what is best for you to get your proper health needs taken care of and it will get better in time.

If you need anything message me:hug::hug:

Wow, thank you so much everyone who posted. I thought it would not get replies because its so negative. Thank you for getting it. I have a good heart underneath all this negative energy, I do. Thank you for just allowing me a space to vent it out. :grouphug:

MsRriO,

Everything you said rings true here. Your inner struggles are as real as the nose on your face. We understand. The 'you look better' is a common problem. The YouTube series, "You Look Great" explains this in great detail.

The NPA report sounds familiar. I scored very high in the intelligence areas and very low in processing speed and short term and immediate memory. This is where the NP's biases will show. Some do not believe one can exhibit high intelligence and low memory skills. They may use this to cast doubt over the results. The deeper research shows that this discrepancy is a solid indicator of organic brain injury.

There is life with low memory skills and slowed processing speed. It may take some reinventing of self. You may need to give up on trying to be super mom. You family will also need to let go of the super mom idea.

One of the toughest times for people with PCS is when there is a high intelligence and high intensity career. The memory and other dysfunctions become much more problematic to such people. Think of it as a precisely tuned high performance sports car. There only needs to be a slight drop in performance and the high performance car becomes an average daily driver.

The resulting average performance coming from a high performance package becomes very stressful and is questioned. This is likely the hardest part of PCS to accept. It is like we have lost the part of ourselves that was our identity.

My heart goes out to you as you struggle with this. There are no easy answers, especially if family and doctors question this reality.

The only thing to remember is simple. If you can get free of physical pain, head aches, etc., there is still an opportunity for a full life, even with long term memory and processing limitations. Hopefully, the full NPA report will help you understand what currently is your condition so you can move forward within those limitations.

My best to you.

I've been at this almost two years, and I despite being able to go to grad school part time, and a internship for 12 hours a week, I feel like I'm still in that hell.

I totally get it when you say that your doctor saying you look better, etc, makes you're family think you are better.

My boyfriend think since I'm doing things in the real world, I'm better. Despite a huge increase in symptoms, visual problems cropping up, etc, he refuses to see that I'm still in hell, trying to convince everyone I'm trying on the outside, when I just want to give up.

It's become a big act for me.. go to class and put a fake smile on, go to my internship, fake smile... despite the pounding headache, the ringing tinnutis, eye pain, endless fatigue and back pain.... of course, I look just fine. Not to mention feeling useless, as I have mountains of coursework to do, but can only get a small amount of work done until my brain gives up on me. But yep, I'm "healed"!

Some might call this functioning, I wish there was a way for them to see how it feels from my perspective. This is not functioning, this is not living, this is merely existing in Hell and trying to fool others that I'm not, so they don't tell me I'm being negative, too focused on my symptoms, or my personal favorite, that I just need to stop worrying and I'll be good as new.

Ugh... I didn't mean to steal your thunder... But you are right, it feels good to unload with someone else who understands.

Prayers to you and your family. We're all here for you. You are never alone in your pain, struggles, and frustration here. Keep venting :)

I am so sorry you are having such a hard time :( I totally understand and know what you're going through. I know it's hard to believe right now but you WILL get better! If I look back to where I was at 4 months it was a LOT worse then where I am now. I still have a long way to go but I can only assume that in 4 more months I will be feeling better still. Think what another year or two will do for healing!

What you are now is NOT permanent! There may be some permanent issues but what you are experiencing right now is not it! Whatever the findings are on the neuro psych testing are also not permanent! Please remember that the people on this website are the ones still having issues or the wonderful people that chose to stay to help. A lot of people have gotten back on with their lives and just aren't coming on here anymore!

I know you don't want a doctor saying you're depressed however PCS does cause depression and it is a treatable symptom. You aren't sick because you're depressed, you have depression because you have PCS. Let's see if I can explain the way my NP did....

There are 4 reasons that emotions (depression, anxiety, etc.) and concussions go together and are worse because of each other:
1. emotions are a physiological response. a normal response to life which causes increased blood pressure, muscle tension, shallow breathing and all these can further aggravate your PCS symptoms.
2. emotion is a brain function so depression can be a primary symptom because regulation is off or out of proportion.
3. Concussions introduce life stressors that add emotional challenge and the brain is having a hard time dealing with it.
4. Concussion is taking away your normal stress coping strategies i.e. exercise, talking to friends, getting out of the situation.

If one gets better they both will get better. Hopefully you can get some help with the depression. The flare up that you're experiencing from your testing will hopefully get better soon and that will make you feel better all around.

I also totally get how frustrating it is when people say... wow you look so much better or you sound totally fine or if you just think positive you will better. Bull s*^$. If all it took was a DESIRE to get better and the drive to push to be better we ALL would have been perfectly healthy a long time ago. Why would anyone chose to live like this???? We are all some of the most hardworking, driven people on the planet which is probably our downfall ;)

I have a splitting migraine so have to go now. I just wanted to say I understand and I'm sorry you're having this day. Tomorrow will be better if you just think positively and if it isn't better at least you will look fine!

BIG HUG
CC

Thanks for responding and understanding Mark. Just such a relief to hear people understand and relate. Yes! To the car analogy. Even if it makes me sound conceited it is true that I was a high achiever type who now has to figure out life with impairments. Bizarre new world.

CC: not sure how you managed it but with your closing remarks you made me laugh! Haha! That's a miracle today. Thank you my friend. :hug:

Wow. Is there an echo in here? Lol. It's like hearing my thoughts. THANK you for relating with the fake smile etc! I am an award winning actress myself. ;)

Sorry to hear of your troubles,and I wish you well. I have PCS and am nearly at the 4 month stage, but am not too disheartened yet. I have 3 young children under 9 and it is a tough situation to be in. I met with my neuropsychiatrist today, and she advised that when you have PCS your tension/arousal levels are abnormally high, and when stress is put on you headaches, photophobia, fatigue etc increase. We feel stress and tension more but it is displayed in a different way through our symptoms. My symptoms have reduced this week, and I see this as the first phase of recovery. This is because I am avoiding the things that aggravate symptoms and have isolated myself more, rested before and after activity and as a result progress is made. It is a temporary condition, and you need to reduce stress and rest when needed to recover.

Flatlander,

My wife and I really understand your place. I have been there too, and the only thing that saved me was my wife and my kids. I did not want to go on. I was very depressed and anxious and my only goal each day was to get to bed time and my sleeping medication.

I also have found out who my real friends are. I was the social organizer and "action man" in my various groups of friends. I have not heard from some "friends" for over a year, and most just send an e-mail saying something like "when are you going to be better?" or "we should get together" but they don't follow up. My few real friends popped over once in a while when I really needed it, but I had to really spell PCS out for them because if you have never had a close experience with a head injury you just don't get it. Those few have stuck with me. I wish you lived in Ottawa, our kids could play and we could chat quietly once in a while. Your e-mail really got to me, remember you are not alone. Hug that boy a lot.
Take care, TommyB ; )
P.S. Please do something now about the depression. Anxiety and depression come with PCS and I know anti-anxiety/depression medication saved my life in month 1 & 2.

I Understand
 

Ms Rrio,

I hear you loud and clear. It is okay to feel depressed and hopeless and forever changed. Living in constant pain and suffering does something to a person. Depression is normal. You are a human being. We are all the same really. In this situation we are all acting the same. We all feel this way. We all express exactly all the things you are saying. I so relate to every word you said and you certainly did not alienate me. In fact, I consider you a friend. I have appreciated your input and your honest expression of your pain.
I am afraid you are right about being forever changed (although you still have some hope you are early in recovery) that being said I know. I was terminated from my job. I could no longer do it. All my friends turned their backs too. I am not any fun for them anymore. The thing about you being responsible for your husband if he haves another heart attack because of the stress your adding is totally wrong though. What about the stress his heart condition has put on you? Why is he allowed to have a health condition but not you. The fact is that you now both have health conditions that are going to change your life. My life is completely different but it is still a life. I am still adjusting but in some ways I like myself more now. I am much more compassionate and considerate of others, I have found an inner strength I did not know I possessed and am impressed with. I don't expect so much from myself or others and it has given me a weird sort of inner peace that is hard to explain. My dad is terribly sick with Parkinson's disease with dementia or shy dragers (they don't know which one it is) but guess who is helping him the most? That's right me. I have showed him how to laugh about the memory problems and have been a comfort to my mom. I have had problems for so long I have actually been able to support them in ways that people who don't understand cannot. I want you to know you are going to be ok. Different yes. Different life yes. Different job or maybe you may have to get on disability. You still have a life though. Changes are hard. I know you are strong enough to adjust and bend with the wind. You have a friend in me and support anytime. God knows I go through the same thing all the time. I am here if you need me. Love to you. Be kind to yourself. Forgive yourself.

The dark night of the soul
 

We all have these and it is OK to feel it. Quite necessary, IMO to rid ourselves of the more negative feelings we have. We discover in those times we are not alone not truely. There those who genuinely care. We will be OK, maybe different than we thought but still OK.

This injury is so far outside the concept of how we as a society think of recovery there are some who just can not conceive of the difficulty. To make matters worse we are assaulted with the propaganda that there is a pill or treatment that promises a miracle. It creates an expectation that is unrealistic and not helpful at all. Regardless of what we bring into the moment we all have value and beauty. We are worthy.

I just wanted to reach out and say I think feeling depressed and overwhelmed by the thought of returning to life-work is part of the process.

I suspect that the emotional roller coaster of wanting to return to normal life- work and yet feeling overwhelmed by the idea is proof that we are not quite there yet.

It must be instinctual - to protect ourselves from putting ourselves in stressful situations. We actively try to figure out how much to exert ourselves until we trigger symptoms- but perhaps our psyche is also trying to protect us from exerting too much.

There must be a sweet spot-of feeling good and ready enough- to return to life-work.

I'm not there yet, but with everyone's support and guidance on this forum, I begin to trust myself.

I hope you are having a better time and trust yourself to feel and to know that you are where you are. And this is good enough for now.

MsR
 

Wow, I get you, I get it. I had a great career as an officer in the Marines. I was promoting ahead of my peers due to my record. I had high vis jobs with very senior officers at the Pentagon. I feel that I have descended to the very bottom if intelligence. My doctors say that well, "you have had a brain injury." The high tempo of working and keeping all facets of my life in life and running like a well oiled machine, being extremely fit, going going all the time is how I maintained. Now, I can't to that, not any part of it. I volunteer at a national park where I am not on anyone's time schedule, if I can't work, I don't. Being outside is really good for me. I volunteer in the maintenance department and do things that I can see the results of; cutting up downed trees, stacking wood, leaf blowing etc....I totally identified with the USMC, that was my life. My doctor said "jump and the net will appear" well, I guess it has. Acceptance has been the hardest part but I am making progress.

I think I avoid people at all cost because it don't want the pleasantries. I don't want to be asked how my appt went. The thing that makes me soooooo ****** is when my friend texts me and says "keep smiling" I so want to tell him to F-off but I realize that may be his discomfort with my situation. I find that to be true with with a lot of former friends. When people don't know how to react to something, they don't. My little sister got married and moved to Germany, I had my accident and she came home. I was my moms Lamaze coach for her and we have always been very close. Not anymore. That isn't me, it is how she is dealing with it.

In my darkest days I feel like they will never get better and they do. On my good days, I forget how bad it can get, and it does. Tat is just the way it goes.

Thanks for your post.

Again, blown away
 

Thank you just doesn't seem enough but, thank you :grouphug:

I laughed at being called Flatlander. That's awesome. So true too. Guess where I originally fell and hit my noggin? On the only hill in the city. Just kidding, it was on the flat parking lot.

I was watching my dog run away, and after 3 days I could still see him but I grew tired and fell down. Haha- also untrue but it's a standard prairie joke.

Well, it was good to purge all that negativity I was feeling, in a safe place, where people didn't judge me and in fact, related to me.

The fact that so many of you took the time to post replies is just amazing.

Thank goodness for this place and you wonderfully people who give of yourselves here. :hug: