We're all in this shit together

We're in this together, man. In life, yes, but I speak to a less broad audience. Caregivers of people with living with PTSD. Veterans, more specifically. 

I sat in on a telephone conference today that centered on caregivers and their needs. It was called the "Forgotten Me". Now. I'm not going to criticize the fact that those who put on this conference were trying to accomplish something good. BUT. It sucked. It focused on breathing exercises and how to identify when you're stressed. Bitch, please. One universal fact of being a caregiver is stress. It just is. That's why caregiver burnout is a real and sometimes, damaging thing. While I can see the appeal is stopping to take a deep breath, breathing exercises are not going to heal my stress or eliminate my worry.  I suffer from "doitall syndrome". By that I mean I take it all on and I have this wild and arrogant view that I can DO IT ALL without any help. I mean, I'm superwoman after all, right? Haha. 

I can't do it all and when it falls apart is when I inevitably lose my shit. At least I'm consistent. 

Okay, so back on topic. During this conference there was a portion at the end where the individuals participating could talk and give feedback. As you can imagine, it was a lot of "well, I was SO impressed with the breathing techniques" and the like. However. There was one voice that was more vocal than the others. She spoke about being alone. It happens. I've talked about it. A lot. She also spoke about not having support. Again. VERY common. But, towards the end of the session, she came in swinging. She blasted post-9/11 veterans and caregivers. She went on and on about the WWII veterans and their lack of support and the Vietnam veterans. 

Now. She had a point. 

There is a divide between the older sect of veterans and the new. There just is. There shouldn't be. Veterans are Veterans. Brothers in arms. 

The system has failed our veterans in more ways than one. PTSD and TBIs are just now being fully examined. It's not a new occurrence, although the prevalence is higher than  in the past. I can see where the bitterness comes from. It should be directed towards the right people, though. Other veterans and caregivers are not the problem. We should be here to hold each other up and to commiserate together. The system is the problem. It's been broken for a long time. 

The good new is, we can work to fix it. There are advocates working to do that, right now. There are organizations working to right the wrongs. There are individuals who are there. There are people who care and dare I say, love. We can work together. Like I said, we're in this shit together. 

Partners and Family: The unheard voices

The other night, I read an article from CNN about the high suicide rates among family and partners of veterans with PTSD. A lot in the article spoke to my experiences. Now, here's the thing, the experiences that me and my family have had are NOT a reflection on my husband, as a person. I think it's easy to fall into blaming mode and look at the negatives, but, for me, I refuse to go down this road. My husband's fight with PTSD is not his alone and it does affect our family, BUT, we are a stronger family because of it.

However, I know that this is not a universal truth. Families are torn apart by PTSD and lives are lost. The statistics say that 22 veterans a day commit suicide because of PTSD and we are just now examining the numbers related to family member deaths. So far, they are astronomical. When PTSD enters our lives, it takes it over. It changes our loved ones into a different person and it makes them say or do things that they would never have done before.

When you read my writings, you'll notice that I refer to PTSD as a separate entity. For me, I've chosen to see it this way. My husband does not embody his PTSD, he lives with it. PTSD does not define him and it does not define my family. It has forced us to "a new normal", but in other ways, it has forced us closer. Communication has become the central of our existence. "Do you need to talk?" is an often heard question in our house.

But, I digress. Back to my original topic. We, as family of those dealing with PTSD are not super heroes. I get commended a lot for how I support my husband, but it's not worth of praise, in my opinion. I am just a partner. I am supporting him the best way I know how and I often fail. We, as family, are also not martyrs. We have our own thoughts, our own feelings and our own imperfections. It's easy to make PTSD the central focus of your lives when it enters a home. It's easy to ignore your own needs and your own feelings in the interest of healing. BUT, and this is important: PTSD never goes away. There is no cure. There is managing and there is time, but there is no absolute solution.

This truth makes it ever so much more important that, as support, your needs are met. You cannot do everything and you cannot fix everything. All you can do is minimize the damage. It is entirely acceptable to step back and say "I can't do this". It is entirely acceptable to say "I need a break" and it is entirely acceptable to NOT accept responsibility for everything.

Believe me, I have to remind myself of these things daily. I love my husband with everything that I have. I love him as he was and as he is. PTSD is not the central theme in our house. Love is. We are not perfect. No one is. I'm not coming to this post from a place of "haha, I'm doing this so much better than you", because, well, I'm not. I have struggled with intrusive thoughts and I am being treated for depression.

The good thing is, it gets better. YOU are important. YOU are worthy and YOU need to care for YOU before anyone else. There are resources. There is help. There are others. Sometimes your best resource is the person who has been there and understands your challenges. Step up. Speak out and demand to be heard. You deserve it.

Disillusionment

Tonight's post is brought to you by the letter "D". For disappointment. And for disillusionment.

Let me explain.

My husband....yep, him again..... was part of one of the most vaunted establishments in our country. The United States military.

Here is where I'm going to pause and warn you all that this is going to be bitter and it's going to be sad and it will probably offend someone. I'm okay with all of this, though. Bitterness, sadness and being offensive all falls under the heading of "allowable" emotions when dealing with what life has thrown our way. So. Sorry, those of you I offend, but this is real life and real life is messy and offensive.

Back to what I was saying. The United States military. You hear those words and for so many people, it brings to mind honor and courage and well..... commitment. Heard that before? For me, it brings bitterness and anger.

I'll tell you why.

Because, to the military, my husband and his brothers were and continue to be, disposable. They took a strong, young man who had so much promise and wrung every bit of usefulness out of him that they could. Which, I get it. That's the way it works. BUT. The kicker? They used him, wrung him out and then abdicated  all responsibility that they had towards him.

Disappointment.

In this process, we start questioning more and more what that damn honor that comes from serving looks like and well, it's not what it was presented to be. My husband, literally, risked his life for this honor and ideal. He sacrificed years of his life, because, let's face it, disability takes it's toll on a body and he has yet to gain this status. At least in the eyes of our government. He is my hero and my children's hero and he will always be. He fought a war that well.... he shouldn't of.

Disillusionment.

This, folks, this is the dirty secret of war. This is the elephant in the room of veterans. It hovers, man.

It's rarely discussed. There are reasons for this, of course. How can you embrace the fact that you wasted your life for someone else's dirty games? How long can you sit and contemplate this before you break?

So, it stays rarely talked about, but it's always there. I walk into the VA hospitals and Vet centers and I see the defeat in our fallen warriors eyes. I see it everyday sitting next to me.

You should be ashamed, America.

Love in the face of war

Well, I blog a lot about our struggles, because, well, we struggle. Mental illness is not all it's cracked up to be, folks. Even with all the struggles, though, there is so much good.

I tend to focus on the negatives. It's a personality flaw of mine, I suppose. I do it to protect myself, but in protecting myself, I sabotage myself. It's a vicious circle, I know. So, today, instead of nurturing the negatives, I thought I'd look on the brighter side of life.

My husband and I are about to celebrate our 11th wedding anniversary. Which, is, incredible. We've been through a lot, my friends, and that is oversimplifying in the extreme. We've, literally, been through a war and we keep fighting that war every day. Even though we have been drug through hell and back, our marriage has been strong and steady. It's been the one constant in my life for these past 11 years.

My husband has been my rock and my inspiration and he's been my world. He's encouraged me, in so many ways, to be who I really am and not who other people want me to be. And through it all, through the very dark times and through the war, he's showed me love. Lots and lots of love. I can't say that I would be the person I am today without him.

All of this seems trite and cliche. It seems like a sentimental rant, I get it. What I need for people to understand, though, is that even through all of my husband's problems and through his internal war, he can still step outside of himself enough to show me what I mean to him.

So, I mean, 11 years. It's an accomplishment. It's a huge milestone. And every day, every hour, every second of those 11 years has been precious to me.

One day at a time.....

How does that saying go..... the best laid plans of mice and men?

I can relate. It seems like, in PTSD land (which, believe me, is not as fun as it may seem), things never go the way that you want or the way that you plan. Things can be going so great, so well one week and the next, it's just not. It may seem melodramatic, but it's the way that it goes. "One day at a time" is the motto du jour. We cling to the motto. It's silly, but that one phrase brings comfort. It's like throwing a warmed blanket over a chilled body. We have a bad day, a bad week, a fucked up month and we look at each other and one of us utters "one day at a time" and it's like we just released our breath that we didn't realize that we'd been holding. Our lungs fill back up with fresh air and we move on. 

Some days, though....... some days, no matter how much we seek that comfort and fresh air, it's just out of reach. We can feel it brushing our fingertips in a maddening tease, but it stays there, taunting us. That one day  remains elusive. 

So, we get back on the roller coaster and we ride that bucking bitch called PTSD and we grit our teeth and we do what we have to do to get our "one day at a time" clarity. 

That's what fighting for a relationship in the middle of PTSD is like. 

A little direction

If I could ask anything from this whole experience? journey? whatever you want to call what we're going through, it'd be for a manual. An instruction sheet on how to handle things. I'm not just talking about things like, triggers, although, let's face it, that would be nice. I want a manual that details exactly how I should react to outbursts, how to soothe a rage, how to make things easier. I want a detailed, outlined, full proof direction for my life.

I started this blog with the intention of helping other people in the same place that I'm in. Which, I know, is a lofty goal, but as time goes on, I find myself using it more and more as a sounding board for my own travails and obviously, for the obstacles that my husband faces.

You see, when you're sent home with that imposing PTSD diagnosis, no one explains to you what comes next. No one says, here, let me tell you what comes with that diagnosis. They don't tell you about the mood swings, they don't say anything about the anger and they sure as hell don't tell you about the fear. They don't tell you how to comfort your husband when he's struggling with facing his dark thoughts.

I wish they did.

They sure as hell don't tell you how to rebuild a broken person. I want a diagram for that. I want to know which piece goes where. Right now, I feel like I'm playing a giant game of Operation and I'm losing. That annoying buzzer and vibrations that sound after you touch the sides? Yeah, that's my soundtrack.

There are always the good times. I'll never deny that. And love. My life is full of love. My husband is a strong, capable person and his diagnosis will never define him.

For me, though, I want to be a better partner. I want to have a clear direction. Instead of muddling my way through murky waters. I wish there was a manual.

PTSD does not equal weak

Last night, on Facebook of course, because all the good fights happen there, a family member of ours said some very hurtful and untrue things. This family member chose to equate someone who lives with PTSD to someone who is unable or unwilling to deal with the world and they then went on to say that life happens and "just don't focus on the negative". Now. I'm sure that those of you who have PTSD or live with someone who has PTSD has heard this drivel before. I'm here to say, it's pure unadulterated bullshit. It's not just bullshit, it's bullshit with a capital B-.

My husband, who is the center of my world, has PTSD and not just PTSD, but combat-related PTSD. He has flashbacks, nightmares, anxiety, depression and many other psychological issues. However, he is also physically disabled, as well. I could list all of his physical manifestations, but I think the psychological gives you a pretty good idea of what he deals with just on that end, on a daily basis. I look at that list and I think about all he has to deal with just to wake up in the morning and face the day and I think to myself, how the hell does he do it? Well, folks, inner strength is how he does it. He has an insane will to live and an insane will to overcome this beast of burden that shadows over our everyday lives. He doesn't always win the fight, though. There are some days when all he can do is sit on the couch and stare at the tv and that's okay. The universal truth is that no one wins everyday. We can only do our best.

His best is 100 times harder to meet than an average person's best. His PTSD also presents memory issues and an inability to decipher what is real and what is not. I'm sure you can see how this can lead to a whole hell of a lot of frustration. But, you know what? He does all he can do to keep that frustration from turning on us, his family. He fights every day to do things that normally people think very little about. A trip to the grocery store is fraught with all kinds of challenges. If the store is crowded, then his anxiety is amplified, because crowds and PTSD do not mix. If the store does not have exactly what we need at the time, then his frustration is amplified and not just because of the inconvenience, but because small annoyances are amplified with PTSD. If the kids are misbehaving while we shop, then his tension level is higher, because what seems like normal misbehaving kid behavior becomes an even bigger issue with PTSD.

So, no, having PTSD does not mean that a person is unable or unwilling to face the world. It means that the person who has PTSD has to fight that much harder to be a part of a world that doesn't make sense to them. PTSD alienates and it makes the person who has it have to adjust to fit in. PTSD does not equal weak. Living with PTSD means strength.