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Support Pals Discuss: What PTSD Means To Me

Dear Friends:

This is a selection of stories from the Gift From Within writer's group. These stories are personal, poignant and will help supporters understand what life is like for the trauma survivor with PTSD. Survivors need your understanding and support. Becoming an informed friend, loved one or family member means a great deal to those dealing with PTSD. Thank you.


Patti & her assistant, Charlie
GFW support pal member and manager of writer's group.
PATTI

Waking in the middle of the night remembering being awakened so many times before, from a sound sleep, by an angry fist beating into his pillow next to my head. Having the same emotions I had then, the same physical reactions. Heart racing, fast, shallow breathing, searching my confused mind for some reason for his anger...was I snoring, was I breathing on him, did I accidentally touch him? Is he going to hit me? I'm back there with him, even though it's years later and the man lying next to me is safe, patient, never angry, never scary. My body and mind can't forget. For a few disorienting moments I'm still there, and the man lying next to me is not my new husband, but the one I feared every moment when I was with him for so many years. I pull myself back to the present. Why can't my mind and body forget? Why can't I move on? Why do I keep going back to that unsafe place? I don't do it on purpose. I was sound asleep. I didn't do anything to make myself go back. I get up, thankful that my husband is a deep sleeper. I go to my office and quietly cry. And then I write. I want to write it down, to remember, even though it's painful. I want my story to help others. Oh God it hurts. Help me to write it down. Am I really safe? Can he find me here? My body hurts, my head hurts. It's so hard to concentrate and get anything accomplished. Everything feels scary. I don't want to be a burden to my husband. I want to be able to let loose and have fun and relax. Relaxing just seems impossible. My ex almost killed me in so many ways. I was already traumatized by my childhood. He took what healthiness was left and stomped it and scarred it and now it's just so hard to keep going. This is PTSD for me.

M.A.

Sometimes, I quiver like a lightning bolt went through me when a door slams, a cell phone rings, a train passes me, or a car horn honks. Then I upset with myself for my reaction or just angry at the noise in general.
I find myself checking my surroundings, especially in a crowded room; always at the back looking for safety. Sometimes I look behind me or in a rear view mirror ten times without realizing that I have looked once.

K.G.

Being a family member of a sufferer it means a lot.

PTSD use to mean anger, arguments, confusion, embarrassment, frustration, and a lot of crying.

PTSD came into my home full of rage and devastated the world as I knew it. The ugliness which came with it was foreign to me.

Had I changed? Why does he act like this now? Why is he so angry? What am I doing wrong?

PTSD violated me. It took a confident woman and destroyed her. It caused me to feel helpless. I hate PTSD!!!! It was not invited into my home, but it was here. Not fair!

We did the right things, we were good people. We were living a fairy tale life. Why did that freaking PTSD have to ruin my life? I want my perfect life back! Damn you PTSD!

That is what PTSD meant to me two years ago.

Now it means education, compassion, understanding, advocacy, and empathy.

The rage PTSD brought has subsided. The ugliness has rolled out like a slow moving fog.

I never changed! He was a victim of war! Neither of us did anything wrong!

PTSD may have violated me, but I will not allow it to break me. It may have shaken my confidence, but it is being found again. I am not helpless. I still hate PTSD!!!! It is still in my home. Not fair!

We do the right things, we are good people. We don't have a fairy tale life, but it is pretty darn good. PTSD hasn't ruined my life? Our life is not perfect, but it is pretty darn good.

Forget you PTSD! You did not win! We are learning to live with your existence. So there!

You are still ugly and mean, but you are controllable for us. There are days when you may have the upper hand, but you will not dominate our life.

PTSD you have taught us:

You create victims who can become survivors living and coping with your existence.

You are no reason to be embarrassed. You are the reason for advocacy.

You are what happens to good people in extraordinary circumstances and bad situations.

PTSD means to understand exactly what the marriage vow "for better or worse" is about.

CANDICE

PTSD means living alone in my head without being able to explain how I feel to anyone. And If I try to explain they don't understand..."you need to move on." It means always being afraid: unable to trust, always waiting for the other shoe to drop, the blow I didn't anticipate. It means not being able to "read" people in a positive way...I don't see the overture of friendship cause why would someone want to be my friend. I can always see the negative actions or thoughts. It means living with sleepless nights and nightmares that haunt my days. PTSD means a half life, a life of loss, a life of land mines, a life that I am only now beginning to understand and navigate. I don't remember a time when I did not have PTSD. It has been my whole life.

LIZ

My name is Liz and I have had PTSD since I was 4 yrs old which began with a major trauma with a head injury. I was catatonic and didn't speak. This was followed by growing up in a war zone common to families with alcoholic parents, where violence and neglect was prevalent. I never knew or felt love.

I lived alone in my head all my life and I have decided I don't want to be there anymore. I realized that I'm the only one that can get myself out and that it would take effort on my part. I don't expect anyone to understand my symptoms but I must reach out and say "Today's not a good day and I really need a hug". I get so many healing hugs that way, but I must put myself out there and make the effort to ask because nobody can know what I feel unless I tell them. I listen to support, and lovingly disregard advice from people that want to "fix" me. I must make an effort to trust, and I must acknowledge the good in people and tell myself that people really aren't out to get me. I must make an effort to see the positive in people. I must accept the "dark half" of my life that is healing slowly as something I can't change but I also must rejoice and live the other half to its fullest. I must make an effort to look at my losses as building blocks to grow from and feel grateful and blessed for what I do have, like a safe home, a warm and comfortable bed, hugs from friends or my sons, my beautiful dog, and a chance to identify with others' pains, whatever they are.

PTSD is a gift that allows me to know what real love is. I must accept myself for who I am and know that this is the cross I bear.

ANONYMOUS

What PTSD Means to Me -
I have had symptoms since early childhood, then more traumas on top of the symptoms, with this repeating many times. I know I am not alone in this.

Nearly four decades later, PTSD and other health conditions have resulted in disability. I am coming to terms with this slowly. It represents significant losses in all areas of my life and significant adjustments.

Coping with symptoms takes most of my energy. PTSD and the other conditions do not take time off. Simple things are hard. I want to feel happier than I do. I didn't ask for any of this, nor does anyone.

The experiences that have caused me to have PTSD were (are) mainly in my family. There isn't support for me there.

On telling others whose support I desired -

I chose four friends and two extended family members to tell what I am experiencing. I did this over the course of about a year and a half. Most listened and were initially kind and supportive. Shortly thereafter they all said and did things I know they intended to helpful, but weren't - Don't think about it too much, Let it go. Don't let them get you down. Forget about the people that hurt you. Put it in a box and put it on a shelf. I've been through difficult times too and look at me I made it. Get back to working and you'll feel better. Let's go out to lunch. Would you quit talking about it already.

One extended family member forgot that I told them.

One friend pledged ongoing support, but within a short time the topic of PTSD seemed off limits. With that person and some others I got the message that only positive topics were allowed. Though I didn't want to talk about my PTSD all the time, I did need to talk about it some. I did need them to be interested and know what I was experiencing. I did need to feel safe and accepted. I did need their support.

I tried again. I explained how PTSD is different than a period of discouragement or painful recollection. I gave information about it to two friends. One friend commented that she could see me in what was described in the information. I felt acknowledged, though we have not been in touch much since then and when we were did not talk about PTSD.

I chose the people I spoke with because some had been through similar things as me and had confided in me, with some bonds of closeness had been expressed, one I thought to be knowledgeable, and some had been around my family enough, I thought, to understand.

I had reflexively supported all of these folks with difficulties they shared with me and I assumed that would be reciprocated. It has not been and this is a source of pain; my wounds are wounded and there is a loss of the relationships. There is more for me to heal. I don't think any of them intended for this. I didn't intend for this. I needed something very different.

I wonder about what happened. Did they understand that I was asking for support? Why did they think the things they said and did would help? Was I expecting too much? Were they frightened? Was it too similar to their experiences? Did they become angry? Did they feel put upon? In what ways did I overestimate the relationships?

What would I do differently today? I would ask more of these questions before hand, and then make decisions about with whom and how I would share. I'd ponder the possible responses more and assume less. I would have a plan for how to cope if the support I needed did not come to be - though I would still feel harmed maybe it would be less so and maybe the loss of relationships would be avoided. I would work more in therapy on all of this before telling others - maybe even practice the possible responses - positive and negative.

NANET

As a spouse of a soldier with PTSD you go through the many ups and downs with them. It is hard sometimes to be their rock and their punching bag (figuratively) at the same time. When they are down they lash out at the ones closest to them, unfortunately, with a great marriage, like ours, this ends up being the spouse. We try desperately to not take things to heart, but some days are just as hard for us also. Sometimes it takes only a moment for their mind to set back, or sometimes it takes a memory we have no knowledge of to trigger them. I have been to counseling sessions and heard "stories" that break my heart and know there is nothing I can do to ease the pain, except be there for him.

I have seen him improve and setback. A constant battle it seems for the soldier. Now with the military having the bright idea to dismiss those diagnosed with PTSD - indeed another setback. It breaks their spirit, drive, self worth and trust. Especially after having been told things have changed and this would not occur.

Commanding officers who once said just a couple months ago what a great troop you were and how they wished they had 100 more just like you, now sign paperwork to dismiss you behind your back and say "in their medical opinion" due to their "injury" they cannot be deployed again or apparently even needed. As the call made prior to this Commander was disregarded to speak with him about the MEB dismissal, as I can only assume, they don't have time for these soldiers anymore. I wonder also . . . just what is that Commander's medical background? I know he does not have MD after his name.

Am I angry? You bet! I have the personal perspective of watching someone do their best every day, work every day, function without psychiatric drugs or hospitalization, still keep those beneath him in rank on track and doing the right thing, only for this man to be told he is no longer needed. I am disgusted and dismayed at the same time.

There is nothing we can do know except wait and play our own cards when the time comes. We are not and WILL NOT sit by and watch this go down without a fight. When you give up the fight, you give up your will.

PTSD is an ugly disease. It takes away pieces of your mind and for some, forever changes their lives. You pray for the husband you knew before the PTSD to return, knowing they will possibly always be different. PTSD can also strengthen relationships if both parties work diligently together to help each other through. It was not something we had ever planned on, but it is here just the same and we will work through this as with all obstacles in married life.

ANN

I find it next to impossible to really share with most other people with no experience or even background on PTSD... about PTSD, that is. I share whatever I can with whomever I can, in therapy, support groups, friends and so on and I just let the chips fall where they may. If the person is sympathetic, interested and supportive that is great, we then can both share about what is important to us and we feel comfortable disclosing. That is in general. But when it comes to PTSD I cannot really think of hardly anyone in my life that has ever really 'gotten it' who has no experience of it or at least some background knowledge about it. So I share what I can with them and leave the PTSD sharing to this group mainly; and the few people I know in my personal life who have PTSD. I don't feel I am hiding anything from them nor do I feel isolated from them but I don't expect any real understanding from them. It is usually too hard for them to process that such horrors happen to people in the first place and in the second they have no frame of reference in their lives for the experiences that come with PTSD. So again, I share what I can where I can; and the effort to reach out to others is almost always worth the risk I have found.

SHANNON

For me, personally, PTSD means never feeling safe. It means being afraid to leave my house, having to check door locks and window locks repeatedly through the day and night... feeling that my life as I once knew it is over and all that exists now is remembering trauma, feeling that it is still taking place, and waiting for more trauma, pain, physical injury, and death... which seems certain to happen.

PTSD, for me, also feels like a daily argument inside of my head and emotions. I am constantly wrestling with fears that I try to define as being irrational or rational. On better days, I feel and think that my fears are irrational and, as such, I can have a somewhat-good day - meaning I can make phone calls to family, be on the computer, read a little, do light housekeeping, cook my husband dinner, etc. For me, that is a good day. On bad days, when I am convinced that my fears are rational, my mind and emotions can't seem to deal with that and instead I spend those days in a state of panic, often moving from one flashback to another...and finding myself, minutes or hours later, in a different room curled up in a ball or sick and lying on one of my bathroom floors. On bad days like that, I cannot seem to function... don't eat, don't shower or change into daytime clothes, and can't focus on a book or TV... it's almost like being in a coma of sorts.

My husband sees all of this and, years ago, suffered from PTSD coming back from the Iraq war. Though his symptoms were very different than mine, he understands and is of great help to me - especially during my bad days. My family does not see all of this, however... they receive an e-mail here and there from me and/or phone calls, and since I sound fine, they don't seem to understand that I am not fine and not my former self at all. Not sure if any of you can relate to that? But that is my personal day-to-day battle....

CONNIE

Hello Fellow Travelers,

I have been at this now 21 years, yet there are times I feel like what we call in 12-step meetings a "New Comer." It does get better the more attention I am willing to give to healing. But when I make a change in routine or lifestyle I am back to square one. The hyper-vigilance is not as harsh, nor is my startle responses, though there are times I am out of my skin. Other times I become so nauseated and get a bit freaked about why. It just seems to be a part of the panic. I go through cycles, three to four weeks I am on top of the world if not a bit grandiose in my thinking, then there is a week to two weeks where I do not want to think, be around people, I cannot even stand my own clothes touching my body. Taking a shower is unheard of; I have to really convince myself that I do need a shower. I spent those days glued to the television, browsing the internet, doing what I call pretending to work. Somehow I can focus long enough to get my school work done and get better grades than when I feel good. Thinking it is because I have to focus, the other times I feel like someone with a remote control switching channels.

I quit explaining to my family or expecting them to understand. My step-mother told everyone I was still on drugs and drinking, my father believes it and has disowned me at least a dozen times in the past five years.

I use to drink and use meth to control my mood swings until it quit working. So, I did let my mother, siblings and children go on their way, none are involved in my life now.

The first 10 years was the roughest in all areas of my life. Fear is what PTSD is for me, being alone, misunderstood, shunned, made fun of, especially getting told that I should not have to keep rehashing the past, I should let it go and get on with my life. "Just pull yourself up by the bootstraps." My boots are worn out and the straps have been irreparable for years. It took me nearly 13 years of recovery before I sought help, began taking medication and quit, had a plan for suicide, felt like I was hallucinating, began understanding what insane felt like in all its glory. Went back to county mental health and continued my road to recovery.

PTSD is being alone in a cavern, vines growing over the entrance so it blends into the surrounding vegetation. Only I have the way in, the path to get there, only I can traverse the dangerous path designed to keep strangers out. There are those who swear they know what it is like, swear they will be there to help, promise to understand and love me no matter what. There have been few I have shared the cavern with. What I knew to be true happened. Abuse, torment, torture, in my cavern. Removing the problem is a lot like getting rid of the flu or some other virus. If not careful it will return. Now I watch for the warning signs, the cue words, promises and over stating the understanding. Few get to come visit me in the cavern now, with me as the guide, slowly the path is traversed. A step at a time, with the first hint of trouble we turn around and go back. Only rarely does the person get to move on the path towards the cavern. That is my safe place, where I can scream and throw things, dance, sing out of tune, laugh at the silliness, cry until I cannot cry anymore, do what I want, when I want. Yet there are times I forget the rules are mine, the space is mine, and no one can get in without my permission.

JUDI

Hi all,
One very big problem I keep on having is triggers.
You see I was bullied very badly in the fire service, well it was in a meeting with other members, and I got yelled at to the point I froze, the yelling went on for 2 1/2 hours. Re the bullying was over doing some cleaning, I did extra cleaning and this other member did not like it, well it just over 4 years ago.

Well it also opened up a can of worms from my past, sexual abuse from my dad; well he was in the fire service when I was very young.

So to the fire service is a really big trigger.
I think they are all not nice people. But the bad thing about this I live in the bush, (the country forest all around me) so it is a normal part of life to see the fire trucks.

I get the person that bullied me stalking me, so I do not walk my dogs any more.

Now why I get triggered so badly, the fire station (I think you call it fire house) is just 5 house away.

I am no longer a member of the fire service, and I am unable to work.

I try to hide away

I get the feeling that I have done some thing wrong, as I have had no support from my local area.

I had a legal case; I had a very good out come. But it does not take away the PTSD, the fears and feeling.

I also find it hard that "normal" (sorry to use that word) just do not understand, the number of times I have been told just get over it, and then all so my partner family think the same. So at times I feel the world is against me.

You see my partner was a member of the fire service, well it got to if he did not leave, there was not going to be me and him.
So he did, as my psychologist all so told my partner, that it would be better for my health.

Well now he has not been in the fire service for over a year. But his mum gives him birthday card that have pictures of fire trucks, and things it funny, as it triggers me. My partner is not strong enough to stand up to his family.

LISA

I don't tell others what's going on unless it's absolutely necessary. When those rare times come up, I don't mention PTSD. I merely attempt to explain my behavior as a characteristic such as being hyper vigilant. It is not often at all that I am questioned further. I've found that if I tell people this is just who I am, they readily accept that and don't ask any more questions.

I used to be very hyper vigilant and had a great deal of trouble with crowds. Not having my extended personal space was difficult to the point of panic. I checked the doors and windows several times throughout the day, checking twice if I had been out. My heart ached constantly too. It wasn't depression really; it felt more like a physical sensation of chest pain. I fell into routine on an obsessive compulsive level.

Sadness is part of it too. I can be lying down on the couch not thinking of anything watching a movie and the slightest tender moment has me balling. I seem overly sensitive to things that are done or said by others.

I dread the phone ringing so I've turned the ringer off. I only know someone has called when I listen to the message machine and I do that on my time. I hate visitors. I don't hate people but I can't handle the unexpected or knowing I have to pretend to be okay.


Additional Resources:

PTSD Etiquette: finding the right words
Meditations
Webcasts
Support Pals Humor Grab Bag
Support Pals Share Inspirational Stories
Support Pals Share Favorite Healing Ideas
Support Pals Book Reviews
Support Pals Talk about Finding A Therapist
Support Pals Talk About Living With PTSD
Support Pals Share Favorite Books and Music
(FAQ) on PTSD with Dr. Ochberg

list of International Support Groups
Retreats and Respites
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