Wednesday, October 28, 2015

When reality slams into your face like a ton of bricks.

Over the years I've worked to get Dean to a point where he's stable enough day to day, in enough habits (which are the only way he "remembers" anything) each day to relieve me a little bit of all the little care taking tasks that I do. I'd like to one day have a life where I have SOME semblance of freedom to do things for ME. It seems, though, that in creating that daily routine of habits, I'm inserted into the equation because I live here! That means even if I'm the not one pouring his cereal, the fact that I am here in my living room while he does it and that he can say his few words to me, makes me a safety net for his independent tasks. When I am not here (now I'm more trying to put what I'm feeling from him and piecing together the overall impression I get from him) his anxiety level goes up? .....something happens to him.....that causes the habits that he's usually proficient at to become tasks that are flying all over place while he tries to catch and it's overwhelming to him. A good analogy would be if you were out in the woods at night, even with a flashlight, it would be an uneasy feeling....you'd be predator territory, outside the safety of your structure/cabin/home and roaming around not knowing what is lurking in your shadows. Now take that same scenario in the woods, with your flashlight, and add a friend. Suddenly it is 10x less scary to be in that scenario. Even if you and your friend are not saying a word to each other, the fact that they are has a safety attached.

*** I am that safety.***

Funny enough, Dean could walk alone in the woods with less uneasiness than he can live in a house.

So over the years I've worked to bring him to a stable place day to day. Every great once in a while I do something for ME that requires me leaving. I had to make a quick business trip to Washington DC a few days ago....the reason it had to be as quick as it was is due to Dean not being able to handle life without the safety net very long. I flew out on Monday morning, got to DC late Monday night, went to a staff meeting Tuesday and got directly back on a plane to be home Tuesday night right before midnight. I did just under 14 hours of flying (not including time changes) in two days and with time changes was pretty exhausted. It was a trip that I'm really glad I went on because the meeting I attended was a vital piece of my success in my new job. I gained a LOT of knowledge that I can only get when I'm interacting IN PERSON with a situation! I was stimulated! I felt like I was part of something! I AM a part of something! I loved learning about what I'm a part of! I felt alive!! Similar to the feeling I got in NYC but this was even more vitally a part of me since it involves my job. I really like working and being part of a machine that creates something, I like feeling like I contribute to something being better.

So I get back home after a day of feeling alive and part of an awesome machine with a purpose, at midnight, crawl into bed very tired, wake up early and get my son off to school, go back to bed....haha. Then upon waking for real and spending some time with Dean, he wants to know how my trip was and I of course want to spill out all of my happiness and share what I learned. I'm feeling great! .....for about 10 minutes. Then he gives me the cues of that's all he can take, he's reached his limit for listening and taking in my energy and information. Please understand, his heart was SO ecstatic that I'm back like he is humpty dumpty and he got put back together and now his life has it's engine and can run again. He truly missed me like he thought he'd never see me again. But after 10 minutes he just can't be a part of MY vitality. Because I love him and he's hurting, I now have to go through this grueling process of sucking my energy, happiness, and purpose back inside myself where it lives in a dark cave and can't see the light very often. It's this total sadness that just hits me! This is my life! That meeting yesterday that makes me feel so good isn't really my life -- it's my dream -- but when I wake up it's just not feasible. Yesterday's meeting causes me to make goals and plans and have desires and want to achieve and makes my heart beat! And today's reality makes me realize that I can't have any of it. At least not yet.

I know it's silly to ask if anyone else goes through this. This is what it means for many women who care for their wounded veterans and yet there are still a lot of wives that are not having to live this way. Wounds are different even if they have the same name. And those wounds take different amounts of time to get to certain stages of healing.

I'm trying to be patient. I'm trying to have faith that God has a plan in all this, there is a reason I need to learn this self-restraint and to wait for my time. I know from experience that when I'm supposed to learn something, I can get through it a lot quicker if I just figure out what I'm supposed to learn and learn it! Perspective on one's own life is often hard to have. We can more easily see others' challenges and solutions more easily than we can see our own.

And sometimes along the path of learning, I just need to take a few moment to see the SUCK in it all! Reality sometimes SUCKS!!! That is all.


Thursday, September 17, 2015

Time & Season Changes

I am simply copying my facebook post of September 9th, 2015 to have a more permanent record of what's going on and to share with my readers what goes on with changes of the time/seasons.

TBI/PTSD fact of the week....things you may not know smile emoticon Weather changes (change of seasons) and shortening of daylight hours REALLY messes with TBI/PTSD symptoms! Constant migraines, general malfunctioning of his body (clumsy, off balance, pressing wrong buttons, doing abc when he was trying to do xyz, etc). Without season/time changes he encounters these problems more randomly, say 3 to 5 times a week, not all at the same time, and usually some wrench thrown into our routine caused it. But with season/time changes these problems are persistent and happening all together. All I can do is watch, bring meds, and try to be his extra hands while leaving him alone/giving him space.

Wednesday, August 19, 2015

"I wish blood would squirt out of my eyes"

"I wish blood would squirt out of my eyes", he says. "That way people would know that I can't talk or think or do this right now". I don't know what it means when he says "My brain hurts". My brain has never hurt before....I have never felt my brain before. I've also never felt my spleen before and he felt his during one (or maybe all) of the IED blasts. He felt all his organs during the blasts.

These are the things that make caregiving very touchy. Obviously I don't want to cause him pain and when I don't understand something I ask a question which then causes the pain I'm trying to avoid causing but I didn't know that a question would cause the pain until after I asked it and now it's too late. The part I get is the grouchy (in pain) bark of a response which puts me on edge. I realize that I'm on edge a lot and I don't think there is really anything to do about it. I don't blame him for me being on edge, if I was in pain all the time I can guarantee you that I'd be snapping at everyone! I just can't really help it that I've been jumpy and on edge when barked at since I was a kid.

We went to the beach for a four nights/five days. Sounds like a lot but it's the minimum really for Dean to get any pleasure from the trip. On the day we are leaving he has 3 panic attacks while packing because the stress is overwhelming. He says he's so glad to be going and will be so glad when it's over. He has always loved the beach, it's where we got married, we both have a special love for the ocean's beauty & power. The day of travel is exhausting for him. It takes at least the entire next 24 hours to recoup from it. Then he basically can do one "outing" each day. That means he can leave the hotel room to be in public for one hour each day and after that, he's exhausted. Sitting on the beach not around the public he can do for a few hours but eventually it's the sun that gets to him (light and heat become too much). So when we get to the beach on Saturday evening, he can't leave until Sunday evening. Then he joins us for an outing Sunday night, sat on a beach chair for a couple hours on Monday, a quick outing on Tuesday, and we left on Wednesday morning. The entire trip back on Wednesday is exhausting causing panic and exhaustion. Once home he'll be sleeping and recouping for a few days (I hope that's all it takes). He loves it and he hates it but we must do it because he loves it.

We are back home now starting the recoup process. He's taken his first and second migraine meds, he's been drenched in sweat, he's had his choking fit at dinner, and now he's out to smoke a cigar. I can see and feel that he wishes he could just climb out of his skin for a while and float around as a body-less spirit. I wish I could grant him that wish.

Saturday, August 15, 2015

Caregiver Transformation

A while back I would say that I finally hit bottom. I was contemplating suicide a lot, feeling like I couldn't do this anymore, there was no point to breathing anymore, not liking who I had become (not knowing who I was anymore) and feeling like being alive was just a detriment to my kids. It was getting bad. I felt no reason to leave the house, no reason to get dressed, and I withdrew from everyone and felt mostly anger and sadness.

I had struggled with my weight since my pregnancy 22 years ago but with Dean's injuries I was just throwing my health away by eating myself to death. I reached my heaviest at 256 lbs about two years after he returned home. I had no motivation to exercise or eat healthy. I was eating junk to FEED me some happiness that I longed for. Food was my happy place, my vacation from the shit I felt all the time, my pleasure, my new best friend. With the depression, I wasn't hardly getting off the couch but to walk to the bathroom a couple times a day. I was feeling pain in all of my body and really in my soul. I was disappointed in myself and didn't really realize that. I was in a position of blaming my circumstances for my actions.

I began to realize though that if something were to happen to me, what would Dean do? And even worse, what would my son do? All the other kids were grown and could take care of themselves but my husband could not take care of our youngest who's entire life had been filled with repetitive separations from his dad and whose only security had been in me. Even if I didn't die (I don't believe we control that at all), what if I got heart disease, had a heart attack, got type 2 diabetes, got cancer? Any of those things would so destructively affect my family and myself as there would be no one to help me either that I felt I needed to do something. I actually felt the immediacy of it. I felt that even if I couldn't control death or even sickness, there were things that I could strongly contribute to. I believe a healthy person could at least fight an illness better than an obese, depressed person could. I knew part of my depression was due to my shame in letting myself get this far gone.

What could I do? I'd been heavy for almost two decades.

I went to a wounded warrior wife retreat and met a thin woman there who I found out had had gastric bypass surgery and had lost over 100 lbs. and the best part was that it was covered by TriCare. I felt like this lifted a veil off my eyes! I thought "This was my ticket out of this hell"...and really I believed it would work for me wonderfully! I attended an informational meeting about WLS (weight loss surgery) and began the process of getting insurance approval for the surgery. Dean didn't like the idea one bit but I knew I had to do it or else I wouldn't survive. When you feel your choices are die by suicide or drastically change your body's internal organs and make sacrifices for the rest of your life, it makes that 2nd option seem like a good deal. Now I was motivated! Now I would do anything to survive!

To have my insurance approve the surgery would be a year long journey of tests and other hoops to jump through. I checked each thing off the list and got to the final hoop. I needed to lose 5% of my body weight. Ok...that was about 13 lbs. I could do it. I was almost at the finish line! The day (surgery) that would be the beginning of a better life.

With this new motivation I got up the courage to join a local exercise group. I surrounded myself with others who struggled and it worked well for me because none of the other ladies were skinny-minis. After a few months I felt like I was getting in better shape but wasn't seeing too much difference on the scale. I just counted it as going in the right direction and kept plugging away. I investigated the nutrition piece. I needed to make dietary changes because 1) I needed to lose 5% of my weight and 2) I realized that I should practice eating differently since after surgery I'd have to eat different for the rest of my life. I bought a nutribullet and began drinking my vegetables (I hate vegetables) and that was a big key for me! I had also begun drinking alkaline water which let me FEEL the affects of food on my stomach for the first time. That led me to giving up fast food and soda. These three changes jumpstarted changes on the scale. I was losing weight...which I had done many times before but could never keep it off. It's ok because this time I'd have the surgery and THAT would take over and assist me from my sticking point all the way to my end goal.

I had forgotten the exact number the scale needed to show for ins approval and with the differences in scales and times of day I weighed myself, I knew I was in the ballpark of my 13 lbs loss and so made an appointment with my doctor to get it documented. By the time I got in to the doctor the scale told a story that really surprised me - I had lost 30 lbs and really weight was just dropping fast now. Well I didn't think anything of that 30 lbs loss except that I was happy to be lighter......now for the surgery.

My insurance denied my request for surgery. After going through the psych eval, the sleep study, the nutrition classes, the swallow test, the gag reflex test, the 6 doctor visits with documentation that I "struggled with losing weight on my own", and now with my 12% weight loss I thought I was golden! But NO! My insurance said that if I was able to lose 12% of my bodyweight then I was able to lose weight on my own and so was disqualified for the surgery!

I was so freaking mad! I can't even explain how angry I was. I had worked my ass off for a year for this and now nothing? I had been able to get down to 200 lbs many times in the past but then always plateaued there until I eventually I would give up and eat the weight back on. I was sick of the up and down and up and down and the feeling like my weight owned me.

Now I had a different motivation though. The future of my family was resting on my success and I was already getting my nutrition in line and exercising so fine....I'll try this one last time!

I continued. I was succeeding and slowly got past my 200 lbs sticking point down to 179 lbs. I was ecstatic. Then some life happened and we bought a house and moved and my whole schedule and routines got all messed up. I struggled. Without all the supports I had built up around me, I began to fail again. I questioned why would this be happening to me again. Why could I not seem to do this ON MY OWN! Why did I need all this support? Was it the supports that were really doing the succeeding? I tried to keep a hold of my success as I slowly slipped backwards....creeping back up to 199 lbs. Shit! I gained 20 lbs this year??? OH NO, I was NOT going back dammit! I tried to build some new supports - that worked last time. Every time I built supports, they broke. A person flaked, a place closed, the class times changed, etc, etc. I felt that God was telling me "YOU MUST DO THIS BY YOURSELF". I didn't understand this at all! Or maybe instead of trying to understand, I was throwing an internal tantrum and telling God "But I don't wanna do it like that"! "I want help"!

It occurred to me that He wanted me to do this on my own (with Him as my support) because He knew I would then carry the strength within me that I had done it on my own, I could do it on my own, and no credit could be given to a trainer or my friends or my gym or classes but it was ME. It was the same words but reframed in the loving way of God rather than of the earthly way of me who wasn't getting what I wanted.

Many, many months prior I had purchased 21 Day Fix from an infomercial on TV. I took it out of the box and read through it. I realized that it would be challenging but it wasn't impossible. I actually could do this all on my own at my house. I even had a spare room with enough space! All I needed to do was to press play everyday and show up. This time though I was carrying the emotional weight of my family's future on me. I needed to do this for them! For me, but for them. I had to survive and become able to fight future battles that could wait in the shadows.

I did it. At first it was sparse, and I got better and better at doing it consistently. I stuck with it. I saw weight loss EVERY WEEK! This really kept feeding my motivation! My clothes were getting looser every month! Wow...I was doing this! Along the way I had to make other psychological, emotional, and mental changes which were 100% necessary at completing this transformation. I learned that from the beginning, my weight wasn't about my weight and it wasn't about the food. It was about my hiding from feeling bad, lonely, unlovable, unworthy, and ashamed. My eyes were opened to how I spoke to myself and about myself. I realized I would NEVER talk to any other person that way, I'd never talk to my children that way, but inside was this hurt child and I was talking to HER that way!

I've been writing an entire blog about my journey but I will end this blog entry with a quick summary. Through this journey with Dean's injuries and the loneliness I faced, the grief over the loss of my future and of my best friend/partner/lover, the emotional turmoil I'd hidden about my new role and my new future.....the pain goes on and on.....but I didn't allow myself to feel any of it with any depth. I knew it was there but I just distracted myself with tasks, I fed myself pleasure, and I just denied. Along the way I had listened to Brene Brown's book on tape about vulnerability (Daring Greatly) and that really helped me see what I was doing to myself. I learned that deep down I didn't feel worthy and I had to remedy this.

Now....I've lost a total of 110 lbs. I got a tummy tuck to remove all my excess skin. I found my self again. I am not at the end of my journey....I'm in the middle of it....and the journey surely changed many times along the way. I do not suffer from caregiver fatigue anymore. I learned that I have to put me first. I matter. I am worth being healthy, feeling vibrant, being alive, and being happy. I learned that other people cannot make me feel those things or have those things, they only come as a result of ME giving it to myself! That is freedom right there! I will never NEED anyone else to fill me up. I fill me up with God's help! No one else gets the credit to my success. Now I get it!

Here is a link to my very unfinished blog about my self-discovery through weight loss, in case you find it helpful: http://journeyofself-loveandrevelation.blogspot.com/

Dean being vulnerable and feeling grief

For the past couple months we've been working on relationship issues as my years of burnout have so caught up to me that I had to go find myself and put me first and that led to this weight loss and stuff.... (I've had a major caregiver transformation that I'll post about later). Well my weight loss and transformation changed a lot of our relational dynamics. So we've had to do some readjusting. In this readjustment period some things have come to the forefront for him and he's actually expressing them to me.

Like his artistic side - I am not artistic, I don't really 'get it' except through him, but apparently when you are an artistic person you SEE the world differently, you notice beauty, you see it and hear it, you are tuned into it. Beauty is even seen in sadness or despair sometimes; an artistic person SEES the beauty in everything. That is Dean. Well now the grief of losing this part of himself has come to the surface. He's really feeling it! He's really missing it and longing for it. He's longing for a connection to that part of himself that he lost. It's heartbreaking to witness. 

Because we are working on our relating to one another, he's been focusing more on his emotions, feeling them, not hiding them, sharing them with me, and being vulnerable. This is amazing to witness and share with him. It's helping both of us a lot! It's also hard on both of us. It's hard to see him struggle with vulnerability and trust in this way but of course it just makes me love him even more (if that's possible) because he's strong enough and brave enough to go there. This is affecting intimacy in a very positive way.

Wednesday, June 24, 2015

Sadness, Loneliness, and Back Pain

 I'm a master at not experiencing my feelings, at putting them aside and trudging on with the day. "How are you doing"? and I can say "Fine" so convincingly that no one would suspect a thing. I can say "Fine" so convincingly that I don't even think anything is wrong!! Yes, you heard it right, I hide my feelings even from myself.

When a feeling creeps up, I move to my head where I analyze things, organize things, focus on other things, decide to write about it (yes, I'm in my head right now), and do anything to not FEEL it.

The problem comes when I learn that after the years of self-care, weight loss, healthy choices and strength building I've done, I have a particular muscle in my lower back (iliosoas) that my massage therapist is convinced it giving me problems because I hold my emotions in. This particular muscle will hold your emotions for you even and then cause you pain. What a nice little muscle....not.

I've made it my small goal to try to experience my feelings which brings me to sadness and loneliness.

This morning, like every other morning this week, and like so many mornings every month for years, I laid in bed waiting for Dean to wake up and want to snuggle, cuddle (I hate those words), or otherwise just notice me and want to touch me. It's the closeness that I miss and that's not to say that we don't touch each other throughout the day. But the morning and the late evening are the two times a day that he's not wearing his dirty, smelly farm clothes and is freshly showered. So...every night I wait, ask, and hope he'll take a shower and THEN want to touch me before I fall asleep and every morning I do the same.

This morning was no different...really. My alarm went off at 6:30 and I laid there playing on my phone, falling back to sleep, snuggling next to the sleeping log, etc for TWO HOURS before I finally gave up and realized that he wasn't going to wake up and reciprocate. I was up for not 15 minutes before he was dressed and downstairs! Some would say that that cannot be a coincidence and wonder if he's avoiding me even if only subconsciously (I wonder the same thing). He said that what woke him was me not being there. So apparently when I'm giving up and getting any attention/intimacy/closeness from him and get up, that action starts his brain coming out of sleep. By the time the coffee has brewed downstairs, down he comes fully dressed in his stinky clothes.

Sadness. Aching loneliness. I know it's in there but I'm not experiencing them....I'm merely talking about them which really is only making me mad because sometimes this TBI/PTSD situation we are living just makes life feel cruel! If it were a person, I'd beat the shit out it!!!

And now my feelings have fully transferred to anger which is a way more comfortable spot for me. I'm sure my back will yell at me later.

Thursday, May 28, 2015

My son came home last week from deployment. I didn't realize all the emotions I was holding inside of me until I got that text of the picture of his plane landing in Oregon. I knew he had made it back to the States safely but until that plane touched down in Oregon I hadn't felt the flood of relief!

Dean was so relieved too but for him that flood of emotion came yesterday when my son came out to the house to see us and Dean could see him, touch him, connect with him for the first time in a year! Dean was so happy - like happy to his soul. When he gets that level of happiness you can see it in his eyes! They sparkle with a peace and joy that can't be faked. It's pure giddiness!

He of course doesn't let on that he's so happy. He just enjoys the moments with that sparkle in his eyes. Once my son left I got to embrace the flood of joy that Dean was hiding inside as I watched all the stress and worry leave his body! His son was home! It reminded me of the way Dean looked 5 years ago when his unit finally returned to Oregon. He wasn't completely off the hook from the guilt he put on himself until they laid their feet on Oregon soil. He does that...puts the responsibility of others' safety onto his own shoulders. It's funny how even though I know he does that, I can't see it until it's come full circle and the guilt floats away.

When my son left for his deployment I was worried, of course, and knew I was saying goodbye to THAT kid because whoever would return would not be the same. Throughout there year there were times that my worry spiked when I'd hear of something happening where my son was stationed. The entire time he was gone, Dean always acted and told me that he wasn't worried, that it was because I was the mom and because I hadn't been there so I couldn't understand what he knew. That all made me feel like I was experiencing the worry by myself which I hated. Yesterday reminded me of the ability Dean has to keep his feelings locked up tightly from me to see or feel. Now, at least in retrospect, I know he was worrying with me.