[JulieRN]

Hi All...
This PCS has be baffled. The more I try to figure it out, the less I understand. I've always been the type of person who NEEDS to understand the why's and how's (that part of me is unchanged lol).

There is no rhyme or reason with this syndrome, to a degree. I definitely see triggers which is helpful so that I can avoid/identify them.

I can NOT stand the TV being loud, too many people talking to me at once, multitasking and most recently...the drive thru at fast food restaurants! I can't seem to make my mind up fast enough

As of late, I have noticed my balance declining...rapidly. This is really scaring me. I've been going to the gym 3 times per week...2 miles on the treadmill, 2 miles on the elipitical. When I'm running on the treadmill, I feel very unsteady...like I'm running side to side. On the eliptical it's better, but I lost my balance and fell off of it last week. GEESH! I'm 45 years old, 5'2" 115lbs. I feel great when I'm exercising, but then I am WIPED OUT for the next day. I refuse to give it up because I'm stubborn and feel it's the only thing I kinda have control over these days.

I'm getting so sick of snapping at everyone as well...my boyfriend, my kids...I get upset over the tiniest little things. I've tried to remove myself from the situation, but it's not always possible...especially with my nine year old son who likes to push my buttons Nothing worse than having your son stare at you wide eyed with tears in his eyes..that's when I know it's "me"....

For those of you who are unaware, I sustained my injury in 7-10 at work..the left side of my skull was impaled by the corner of an overhead metal filing cabinet. I became symptomatic within the hour...it's been a battle since. I have not received ANY care for my PCS and am waiting anxiously for approval to see a Neuropsychologist.

I've begun to pull away from my very best friends because I feel like I'm a burden, not really fun to be around and so sick of my symptoms getting in the way of my life

The dizziness, headaches, fatigue, tingling across the top of my head...they're back...with a vengeance. All I want to do is sleep. My memory is getting worse. Now I'm dealing with cold intolerance, twitching and I swear I am having focal seizures. My symptoms can last for days or weeks and then go away...they come back one or all and last for however long...the severity differs...yesterday, they all came back and I feel just like I did after my injury...

I'm trying to help myself as much as I can...is there anything else I can do?
I feel lost and frustrated...but I'm not even close to giving up. That will never, ever be an option for me. I want so badly for this to just GO away.

[Mark in Idaho]

JulieRN,

Sorry to hear you continue to struggle so. Your stubbornness may be exacerbating your condition.

First, have you hired a Work Comp attorney? Sounds like you need a good one with experience in brain injuries. Check out www.tbilaw.com for a good referral.

You need to have a good sit down conversation with your 9 year old. Maybe you can watch the "You Look Great" YouTube videos together. You can also read some of the TBI Survival Guide with him. If he is missing his mom, he can play a big part in getting her back, even if it is the broken mom.

Once he understands that you are trapped in your broken brain, he may be better at not pushing your buttons. He is old enough to start making some adult like choices. You will be surprised how he can grow up fast if he understands.

You exercising may be prolonging your condition. Holding on to the old you may be counter-productive.

Have you explained all of your symptoms to those around you? Trying to suck them up and hide them is confusing to those friends, etc. Explaining what is happening inside your brain at the moment can be a big help: Like, "That is way to much visual stimulation." I like the term John's therapist used. He gets flooded with too much.

Tell them all how they can help you. DO NOT LET STUBBORN PRIDE STOP YOU from asking for their help, etc.

Also, don't let that same stubbornness prevent you from taking better care of yourself. Only you can tell what is happening in your head.

It is a major milestone when you come to grips with letting go. It does not mean you are helpless. Just that you need help sometimes. Even a 9 year old can help you.

You said <I can NOT stand the TV being loud, too many people talking to me at once, multitasking and most recently...the drive thru at fast food restaurants! I can't seem to make my mind up fast enough >

You can take control of these things. Tell people that you can only tolerate one voice at a time. This is not up for discussion. If you have to hell "STOP" Then in a softer voice, 'Only one voice at a time." Lowering your voice after getting their attention will show them that you are in control of your behavior. The TV can be turned down.

I bet your fast food drive through struggles is based on three things. Those in the car with you are being indecisive or talking at the same time. The voice on the speaker is garbled causing auditory overload in your brain. And, you think you are holding up the system, the cars behind you and those waiting for your order. My wife has this struggle.

Maybe you should park the car, get your order ready on a note pad, then get in the drive through line, Or,,,, Go inside to the counter.

I know that women hate it when men try to say, "Just do this and so." But you need to find some new ways to get through the day. I do feel your pain. I have been living it for 11 years.

Take these ideas one step at a time. Write them down for others to read so they can help you.

Yes, it is a tough road, but there is light at the end of the tunnel. Even if the light is just getting better at learning how to cope better.

If all else fails, Stop to Think. That means stop everything else. Then take a deep breath and relax. Then, with it all stopped, try to think. Stress is your enemy. Use the quiet passing of time as your friend.

My best to you.

[nightnurse30]

Oh julie, sorry to hear of all your struggles. I am gonna share with you the same thing my therapist said to me. "you have to take better care of yourself and stop sabotaging your recovery". Now i initially took great offense to this. But when i thought about what she meant by it, and actually stopped and just rested and stopped pushing myself (mentally, physically, and socially), i started to see some improvement. She pointed out things i complained about or situations i put myself in where it caused me to have such a big setback and said to stop doing that.

Example....going out to dinner. All the small chit chatter going on, fan on the ceiling, car alarm going off outside the restaurant made for a very painful few hours. She asked why i didnt excuse myself and leave and i said i wanted to be normal for a few hours. Well, clearly it was causing me increased headaches, dizziness, and fatigue. So i have stopped doing social things with friends because i am just not well enough to do them. Yes i am becoming isolated, and it sucks, but i got this brain for the long haul and if my friends are true friends, they will be there for me during this and when im better. your friends will have a hard time understanding, but always a good idea to clue them in to your symptoms and encourage them to research the condition to understand better.

I am a workout junkie myself, and i understand where you are coming from with wanting to workout....but when you can directly associate your being wiped out with running....its a huge sign that your body is not ready for that just yet. Think about each pounding step as you run is giving your head a little jolt, it may be preventing your brain from healing. Try taking a week off and truly resting. See if you see improvement in your balance issues and headaches If you feel a little better, you will know thats what your body needs to heal. Good luck!!

[xxxxcrystalxxxx]

Originally Posted by JulieRN

Hi All...
This PCS has be baffled. The more I try to figure it out, the less I understand. I've always been the type of person who NEEDS to understand the why's and how's (that part of me is unchanged lol).

There is no rhyme or reason with this syndrome, to a degree. I definitely see triggers which is helpful so that I can avoid/identify them.

I can NOT stand the TV being loud, too many people talking to me at once, multitasking and most recently...the drive thru at fast food restaurants! I can't seem to make my mind up fast enough

As of late, I have noticed my balance declining...rapidly. This is really scaring me. I've been going to the gym 3 times per week...2 miles on the treadmill, 2 miles on the elipitical. When I'm running on the treadmill, I feel very unsteady...like I'm running side to side. On the eliptical it's better, but I lost my balance and fell off of it last week. GEESH! I'm 45 years old, 5'2" 115lbs. I feel great when I'm exercising, but then I am WIPED OUT for the next day. I refuse to give it up because I'm stubborn and feel it's the only thing I kinda have control over these days.

I'm getting so sick of snapping at everyone as well...my boyfriend, my kids...I get upset over the tiniest little things. I've tried to remove myself from the situation, but it's not always possible...especially with my nine year old son who likes to push my buttons Nothing worse than having your son stare at you wide eyed with tears in his eyes..that's when I know it's "me"....

For those of you who are unaware, I sustained my injury in 7-10 at work..the left side of my skull was impaled by the corner of an overhead metal filing cabinet. I became symptomatic within the hour...it's been a battle since. I have not received ANY care for my PCS and am waiting anxiously for approval to see a Neuropsychologist.

I've begun to pull away from my very best friends because I feel like I'm a burden, not really fun to be around and so sick of my symptoms getting in the way of my life

The dizziness, headaches, fatigue, tingling across the top of my head...they're back...with a vengeance. All I want to do is sleep. My memory is getting worse. Now I'm dealing with cold intolerance, twitching and I swear I am having focal seizures. My symptoms can last for days or weeks and then go away...they come back one or all and last for however long...the severity differs...yesterday, they all came back and I feel just like I did after my injury...

I'm trying to help myself as much as I can...is there anything else I can do?
I feel lost and frustrated...but I'm not even close to giving up. That will never, ever be an option for me. I want so badly for this to just GO away.

Julie RN,

I can so relate to you in many ways. I have been pushing myself since the day my symptoms started. I didn't go to the ER right away. I tried to shake off the injury because I think I knew I was in trouble and also in shock...lol

I did go to a walk in clinic later that day. I drove myself but dont remember much about the ride over. I walked in and they took me asap.... I know that is never a good sign.

My husband has to yell at me to relax because I push it. I take a good day (which is rare) and I will try to make up for all the stuff I haven't done. I also tried my walking and the gym again. It gets me no where. I clean my kitchen floor and then sleep for two days or deal with the pounding headache or the shooting headache whichever decides to show up..lol.. The whooshing sounds in my head are pretty loud sometimes. So loud I lose my balance. So I am stepping back....again. I will rest and try again but little at a time.

You also need an Attorney. I would be in big trouble without one. They contested my treatment and I had to have a hearing. Your Neuro should be pulling you from work and you should be resting. I know it's hard I understand that...but in the end we're slowing down progress.

Good luck!!!
Crystal

[Jeffrey]

The thing about a rollercoaster is it needs to straighten out & slow down before the ride is over and you disembark.

I pray that the analogy (extended) applies to us all.

[Mark in Idaho]

My PCS is like The Giant Dipper roller coaster at Santa Cruz Boardwalk. It slows down but you can't get out until it is in the middle of a 180 degree turn. Maybe that's my problem. I rode The Giant Dipper too many times. LOL

[JulieRN]

Originally Posted by Mark in Idaho

JulieRN,

Sorry to hear you continue to struggle so. Your stubbornness may be exacerbating your condition.

First, have you hired a Work Comp attorney? Sounds like you need a good one with experience in brain injuries. Check out www.tbilaw.com for a good referral.

You need to have a good sit down conversation with your 9 year old. Maybe you can watch the "You Look Great" YouTube videos together. You can also read some of the TBI Survival Guide with him. If he is missing his mom, he can play a big part in getting her back, even if it is the broken mom.

Once he understands that you are trapped in your broken brain, he may be better at not pushing your buttons. He is old enough to start making some adult like choices. You will be surprised how he can grow up fast if he understands.

You exercising may be prolonging your condition. Holding on to the old you may be counter-productive.

Have you explained all of your symptoms to those around you? Trying to suck them up and hide them is confusing to those friends, etc. Explaining what is happening inside your brain at the moment can be a big help: Like, "That is way to much visual stimulation." I like the term John's therapist used. He gets flooded with too much.

Tell them all how they can help you. DO NOT LET STUBBORN PRIDE STOP YOU from asking for their help, etc.

Also, don't let that same stubbornness prevent you from taking better care of yourself. Only you can tell what is happening in your head.

It is a major milestone when you come to grips with letting go. It does not mean you are helpless. Just that you need help sometimes. Even a 9 year old can help you.

You said <I can NOT stand the TV being loud, too many people talking to me at once, multitasking and most recently...the drive thru at fast food restaurants! I can't seem to make my mind up fast enough >

You can take control of these things. Tell people that you can only tolerate one voice at a time. This is not up for discussion. If you have to hell "STOP" Then in a softer voice, 'Only one voice at a time." Lowering your voice after getting their attention will show them that you are in control of your behavior. The TV can be turned down.

I bet your fast food drive through struggles is based on three things. Those in the car with you are being indecisive or talking at the same time. The voice on the speaker is garbled causing auditory overload in your brain. And, you think you are holding up the system, the cars behind you and those waiting for your order. My wife has this struggle.

Maybe you should park the car, get your order ready on a note pad, then get in the drive through line, Or,,,, Go inside to the counter.

I know that women hate it when men try to say, "Just do this and so." But you need to find some new ways to get through the day. I do feel your pain. I have been living it for 11 years.

Take these ideas one step at a time. Write them down for others to read so they can help you.

Yes, it is a tough road, but there is light at the end of the tunnel. Even if the light is just getting better at learning how to cope better.

If all else fails, Stop to Think. That means stop everything else. Then take a deep breath and relax. Then, with it all stopped, try to think. Stress is your enemy. Use the quiet passing of time as your friend.

My best to you.

Hi Mark,

Thank you SO much for your response and your very encouraging words of advice. I do have an Attorney, hired him within the first month of my injury...for that, I am grateful! I can't imagine WHAT I would be dealing with if I didn't have him! The process is frustrating and I know that I've taken on way too much of this myself. I need to try to change this and I don't feel that I have control over it...I'm very compulsive and though I've always had a stubborn streak, it is SO exacerbated since my injury. I hate the fact that I attribute any symptom to my injury as it feels like I'm making "excuses" for my behavior. I know I have a longggg way to go, but the comp. carrier has FINALLY agreed to give auth. for me to see Neuropsych...my Atty. hopes that the appt. will be before mid December...and I've been out on STD since July...Comp. has even picked me up again....the system sucks. Period. And I am so motivated to be healed and to the point where I can return to the workforce and advocate for people who have to go through the Worker's Comp. process. There has to be a better way because this truly isn't it.
My Son is getting better with pushing my buttons lol, thank you so much for the pointers. He is very intelligent and interested in "helping" me....I've become less concerned about how other people view me and more interested in healing. I am continuing at the gym, however, I've tailored my workout to not completely wipe me out. I'm off of the treadmill and doing the eliptical at a slower pace. It makes me feel good and throughout all of this...I quit smoking I can not express my gratitude to you enough...and I am slowly coming to terms with the "new" Julie...trying to accentuate the positives of the new me.... I'll keep you posted on my Neuropsych progression....

[tamisue]

Julie-
Send your friends the TBI guide (Mark recommends to everyone-it is awesome!) Also the tbi videos on youtube. I've sent to family and friends. If they want to help and can, let them. It will help you not feel so lonesome and isolated (which I had huge trouble with) and they can feel useful. I know people ask to be nice, but if you know your friends are asking with honest intent, let them help. Best of luck to you!

[xxxxcrystalxxxx]

My friends scattered like cock roaches after you turn the lights on... I cant blame them... I guess... I cant do the things they can do. I also tell myself that they cant be such good friends if this is what happens. My family doesn't understand too much. I dont see them too much either. So I roll with the punches. My husband is very understanding.

I have one coworker who checks in on me. My bosses (all MD's) haven't even called to see how I'm doing. My office manager sent a letter wishing me a speedy recovery and told me to send a check for almost 800 bucks for my health insurance.

I dont think even when I'm better that I will continue to work for such inconsiderate people........

[greenfrog]

Dealing with the responses of friends, family and co-workers can be a frustrating issue, for sure. Some people are insensitive, ignorant, lazy, self-absorbed, and/or missing some basic human decency. Others are somewhat caring, but can be unsure about what to do and say, especially given the challenges surrounding this type of injury, so they sometimes default to the sidelines. The best are those who simply care, take some time to get informed, and look for ways (large and small) to help out or express some fellow-feeling without making a big deal about it. People in the latter category are rare gems, in my experience.

What I find works best is to note how I feel about the responses of others without getting emotionally ensnared (at least not for more than a short time). Things that help: talking about it with my girlfriend, meditation, taking good care of body and soul, and focusing less on others' responses (or non-responses) and more on being the person I want to be through all of this. My goal is to put myself in the best possible position to recover, which means proactively reducing stress and the situations/people that perpetuate it.

As the saying goes, "Lord, grant me the serenity to accept the things I cannot change, the courage to change the things I can, and the wisdom to know the difference."