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.

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.

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.

Mother to mother 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

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.

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.

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.

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.

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.