Alexis Rose's Blog, page 37

What do the Caregivers Need?

I’m currently collaborating on a new book. As we were outlining the chapters, we added a chapter addressing the question, What do caregiver’s want and need when living with, caring for, or loving a person with a physical, emotional, mental, or chronic illness? I think it will be a wonderful addition to the book. This group is often left out of the care plan. They are our unsung heroes. The friends, family and support team who, without them, we would flounder.

When I was struck with PTSD  my whole world turned upside down.  As with any illness, it doesn’t just affect me, my illness affects my whole family. My symptoms can be challenging for my family, friends and support team.  They have taken the time to learn about trauma and PTSD and are right there to help me live the most “normal” life I can lead right now. No one, ever, makes me feel like I’m a burden. That’s my own personal demon that I fight and live with on a daily basis.

But what do caregivers need when living with, loving, befriending or working with a person who has a chronic, physical or mental illness?

My husband loves it when I go out of town for a few days. He has respite. People ask why don’t we travel together? Well, really, he needs a break. When I’m gone his worries are less. He deserves all the pizza, late night t.v., just hanging out, no worry days he can get. It’s what he needs so he can recharge. He doesn’t ask me to go out of town, but when a situation arises and he feels comfortable with my traveling companion, he encourages me to go. It’s just a couple of times a year, we stay in contact every day, and he’s thrilled when I come back home,  but he needs that respite.

He also belongs to an online support group for caregivers of someone with PTSD. At first, I will admit, I was fearful that he was talking to other caregivers. I soon realized that it was my own immense guilt I was feeling and transferring to him. I felt like, I drove my husband, who had no interest at all in computers or anything to do with social media into needing support from strangers online. I quickly got over that, because he needs support.  He needs to be speaking to people who get the day-to-day challenges of living with someone with PTSD.

When I ask my family, friends, support system what can I do? What do you need? The answer is always the same, and I think appropriate. They say you don’t need to do anything but keep healing. You’re doing great, you are doing exactly what you need to be doing. I think that’s the best answer to give someone living with an illness because our job is to cope with, heal, and live a contented life within our deficits. We have to trust our caregivers will get the support they need so they can have the same kind of happiness in life.

So, my question is: If you are (or were) a caregiver, family member, part of a support system, or a friend of someone with a physical, mental, emotional or chronic illness, What do you need?

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Thank you for reading my memoir, Untangled, A Story of Resilience, Courage, and Triumph

 

Anatomy of a Flashback

Time of year, breaking news of overseas conflict, wind blowing a certain way…whatever the trigger

There is no telling when it is going to strike

Are they alive or dead?

Is that pain real or echoes from pain long ago that

resurface with a memory?

It feels like I’m being held hostage by my mind

Doesn’t matter what day, time, or year it is…the anatomy of my flashbacks

Are those smells real or is that a smell from a place and time

when I was being held against my will?

Am I really hearing the sounds of helicopters, planes, cicadas or birds?

Or it that the sound coming from a place that no longer exists and

should never be talked about?

Then it passes and I pull myself up the rope

Out of the clutches of PTSD and the skeleton hands of the past that

keep trying to pull me down

The anatomy of my flashbacks

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image source: pixabay

Thank you for reading my memoir, Untangled, A Story of Resilience, Courage, and Triumph

http://www.amazon.com/Untangled-story-resilience-courage-triumph/dp/1514213222

https://www.amazon.com/Untangled-story-resilience-courage-triumph-ebook/dp/B013XA4856

Adventures of Yesterday

Adventures of yesterday

are the shadows that promise

there is light, just beyond the curve. 

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©collaboration; Of Earth and Sky. Alexis Rose, photo: Shelley Bauer

 

Thank you for reading my memoir, Untangled, A Story of Resilience, Courage, and Triumph

http://www.amazon.com/Untangled-story-resilience-courage-triumph/dp/1514213222

https://www.amazon.com/Untangled-story-resilience-courage-triumph-ebook/dp/B013XA4856

Really? Wow! You don’t look sick!

Many of us deal with an invisible illness (physical, emotional, mental), we don’t look sick!

Typically, if we are out and about or even within our own family,  if we see or know someone that looks outwardly ill or has a visible disability, hopefully, we feel compassion, give them space, and help them, usually without thought or frustration. Our very human nature is that if we can see it, it exists.

Sometimes, out of pure surprise, when people find out I have PTSD, they say, “Really, Wow, you don’t look sick.” I don’t take offense to it because it is a natural thought. It’s not coming from a place of dismissal, or maliciousness. But, I do take offense when the next words are, “Can’t you just get over it?” There is something about those six little words that rub me wrong. I had a doctor say to me once, “You look fine, you survived, can’t you just get over it?” Strange, coming from a physicians mouth, and I’m smart enough to never go back to that person again, but, whoa, that stopped me in my tracks. I looked at her, and asked, “Did you really just say that?”

Some of the invisible symptoms of my PTSD are flashbacks, hyper-vigilance, and becoming extremely overwhelmed from triggers. I don’t freak out and run through the streets ranting, raving and screaming; but I do get out-of-sorts, can become kind of spacey, decisions become impossible and I’m sure I look shut-down and unhappy. Or, I look shut-down and have that ridiculous, I’m okay smile plastered sweetly on my face.

When I’m out with friends it’s usually not a problem because they are aware of my “tells” but if I’m with people who don’t really know me and what to look for, it can be uncomfortable for them. I don’t ever want to feel like the elephant in the room so I will try to talk about it if it’s happening or I have to leave. What I don’t want to hear, “Is why do have to respond to triggers? It makes you a victim again.”  Really? When someone who has a physical illness (perhaps asthma and gets triggered and has an asthma attack, do we tell them they are acting like a victim). If I’m putting myself in harm’s way, physically or emotionally then maybe someone can make that sort of judgment statement? I’m not sure, I don’t really judge illness when I’m not living inside of that person.

I recently had breakfast with my good friend. We have known each other for years. We were talking about how after my recent travel experience,  I realized that my family and friends have created a “new normal” for me because of my many deficits. When someone wants to hang-out, they tend to say that they will pick me up. When we go to restaurants, we tend to go to the same place so I don’t get overwhelmed with menu choices; even my boss will end a meeting if she sees my concentration waning. A two- hour scheduled meeting may end after fifteen- minutes. My breakfast buddy was nodding her head in understanding because she has had two knee replacements in the past year and has had to make changes in her life because of physical challenges. We were getting ready to leave, and wincing, my friend said her body was sore from the weather changing. My tongue-in-cheek response, was, “Really, just stand up, you don’t look sick!” We laughed and laughed because that’s how easy the thought and words can form when we don’t see someone’s’ challenges.

For many of us who have survived trauma (I expect it may be the same for people who have a chronic physical illness), we can be the master of minimizing our experiences, with our own tired, worn out mantras of, “I survived it, so what’s the big deal.” I know I have questioned ad- nauseum to myself and my therapist, why can’t I just get over it?  It’s tired and worn out because why would I just get over it? And If I could, I would have chosen that a long time ago.  I wouldn’t ever expect someone else to just be okay, would I? No, absolutely not. A person feels the way they feel until they have processed and passed through all the transitions of healing. And if there are multiple events it will take that much longer.

I am beginning to experience the depth of grief that still lingers inside of me. Part of the grief is sadness for the life I know I was never destined to have because my decisions were pre-determined for me for so many years.  But, in spite of that, I chose to make a good life from my lied to, tattered soul. Part of the grief is sadness for the life I had for the first twenty years.  For the pain, the suffering, and the squashing of my potential.  I’m proud of what I’ve accomplished in spite of what happened to me.

So when others say to me, Why can’t you just get over it?  You survived and have a good life with a great family and lots of great friends and support. I say, “Yep, I did survive because I stuffed all the feelings, emotions, abuse, terror and pain down as deep as they could go.” The plan was never to resurrect any feeling or memory. But PTSD doesn’t work that way.  I have complex PTSD. It’s an invisible illness, which because of the severity of my trauma will most likely leave me with symptoms (although now more manageable) for years and years to come. 

I know I don’t look sick, and I probably will never get over it, But I have learned to live with PTSD. Yes, thankfully, I did survive. Just surviving doesn’t suit me any longer, living and thriving is my gold-standard now.

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image source: Pixabay

 

Thank you for reading my memoir,  Untangled, A Story of Resilience, Courage, and Triumph

http://www.amazon.com/Untangled-story-resilience-courage-triumph/dp/1514213222

https://www.amazon.com/Untangled-story-resilience-courage-triumph-ebook/dp/B013XA4856

The Book Shelf Shout Out

I have the pleasure of being on the award-winning, Two Drops of Ink literary blogs bookshelf. To my great surprise, they chose Untangled for a Bookshelf shout-out yesterday. Are following Two Drops of Ink yet? https://twodropsofink.com/2017/04/01/the-book-shelf-shout-out/

Two Drops of Ink: A Literary Blog

As many of you know, we started adding several new features on the site this year. You, our dear followers, readers, and contributors, have given us your blessing and let us know that you like these new ideas. We appreciate your feedback. It’s important to us.

Personally, I’m loving “Hump Day Humor,” and we are getting some great feedback, comments, and views for those posts. We are also doing a “Sunday Spotlight” for our published contributors that will serve to further expose their writing, blogs, and personal links to social media, books, and other creative outlets. Yes, that’s right, we help to expose writers media outlets; that’s the beauty of our collaboration with other writers, authors, and bloggers – it’s purely win-win.

Today is our inaugural post of “The Book Shelf Shout Out.” This will be a once a month post (on Saturdays when we generally take a…

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The Steps of Innocence

As she dances the steps of innocence

even the  waves and birds stop

and watch in awe.  [image error]

©collaboration, Of Earth and Sky: Alexis Rose, photo: Shelley Bauer

 

Thank you for reading my memoir, Untangled, A Story of Resilience, Courage, and Triumph

http://www.amazon.com/Untangled-story-resilience-courage-triumph/dp/1514213222

https://www.amazon.com/Untangled-story-resilience-courage-triumph-ebook/dp/B013XA4856

Interview with Alexis Rose: author of Untangled, a story of resilience, courage, and triumph

I had the absolute pleasure of being interviewed by Vilina. She has a beautiful blog with a wonderful message. Here is the link to the interview. Be sure and give Valina a like and a follow: https://vilinachristoph.com/2017/03/29/interview-with-alexis-rose-author-of-untangled-a-story-of-resilience-courage-and-triumph/

Vilina Christoph

Today I am introducing a new feature on the blog – guest posts and interviews from other authors and writers. These would normally be people who have been through and have overcome certain adversities in their lives. They will be sharing their stories, practices and messages of transformation.

Our very first guest is Alexis Rose, an author of the incredible memoir Untangled, a story of resilience, courage, and triumph. I found Alexis’s blog and her articles instantly captivated me. I went on to buy and read her book too and since then I’ve been feeling very connected to her and her journey of transformation.

Here’s Alexis own words:

Tell us a little bit about your life journey.

Up until 2009 I had a good career in the field of staff recruitment and marketing. I loved my job, and was getting to a point in my career where I felt…

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Sitting in a place of peace; Oh no a flashback; Sitting in a place of peace.

I’m sitting in this place of peace. Listening to the water splashing over the rocks, over this mini rapids. The water sparkles like diamonds as the sun plays upon it. The eagles and other various birds are flying overhead and occasionally landing on the bare branched trees in pairs of two or three. Sometimes they rest on the rock and also seem to be gazing out over the restless water. Next to me in the tree, I watch a spider lord over her intricate web that is filled with little bugs trapped in her silk. Off in the distance, tall purple flowers are swaying just a bit in the breeze. My triggers are reset. I am at peace, not judging, not thinking, not talking, and just resting.

Then out of the blue, it happens. First, it comes as a sort of uneasiness in my stomach, and then the diamond reflections on the water became cartoonish, the bugs in the background are the noises of the forest in a different time and continent. A wave of emotion takes my breath away and my lungs seem to stop with fear as the world starts to morph. I can feel myself being pulled away.  In my distant mind, just before I’m hurled into the past, I can hear myself think just sit with it until it passes. I feel myself stand up, watching, reliving “it” happening. Whatever the “it” for this particular flashback brings. 

It passes. The water becomes fluid again, the breeze touches my ice cold skin in the burning sun, the muscles in my stomach, head, arms and lungs ache from being contracted and I am standing. I wonder what did I do wrong in this place where just moments ago, I felt wonderful, restful and safe. How did it turn into a place where I was no longer grounded, hurling through the past. Why wasn’t I still there with everyone else who is gazing at the rapids? How is it that I can turn a normal, beautiful moment into the ugliness of a flashback. I ask myself, what’s wrong with me?

 I want to turn and walk away. But, I don’t, instead, I look at this nature filled place I’m visiting, sit down and understand that I had a flashback, I was triggered by something (the wind, sounds, the light hitting the water in a certain way, etc.) For me, this is how my PTSD manifests itself. That’s what my struggle looks like right now. It’s frustrating, but I’m not going to let it take the beauty out of the world around me. I’m not going to hide from the many, places of peace and remember the feeling of contentment, calmness, a perfect moment. 

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Thank you for reading my memoir, Untangled, A Story of Resilience, Courage, and Triumph

http://www.amazon.com/Untangled-story-resilience-courage-triumph/dp/1514213222

https://www.amazon.com/Untangled-story-resilience-courage-triumph-ebook/dp/B013XA4856

She Listens With More Than Her Ears

She listens with more than her ears.

The light from her soul and the joy in her heart

illuminate the world around her.

Silently saying a prayer

she feels the comfortable beat of her heart

as she flows to the music within.

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©Alexis Rose, image source: Pixaby

Thank you for reading my memoir, Untangled, A Story of Resilience, Courage, and Triumph

http://www.amazon.com/Untangled-story-resilience-courage-triumph/dp/1514213222

https://www.amazon.com/Untangled-story-resilience-courage-triumph-ebook/dp/B013XA4856

 

Do You Have a Corner Coach?

“You’re a hard stick.” I hear those words each time I have blood drawn. Yesterday, after four sticks, for five tubes of blood, and a very upset phlebotomist, I found myself cheering her on, telling her she can do it, she’ll have a great day once she’s found a vein, all you need is confidence. I was determined to have her shake it off and find a vein because she was the only one working yesterday; she couldn’t pass me on to a co-worker and I was not going to come back another day, to hear the same words, “You’re a hard stick.” That’s the kind of stress I prefer to only have once a year if possible, not two days in a row. She finally found a blood-giving vein and off I went, hoping to never lay eyes on her again!

I love the term corner coach. I used it with my kids growing up. When they were nervous about a test, activity, any kind of fear before the unknown, I would encourage them on, telling them, I’ve got you, I’m your corner coach. It’s a term I’ve used with my kids, but haven’t asked for it in my own life until recently.

I whole-heartedly believe that learning to live with a chronic illness takes support. Support can come in many forms. It can be family, friends, pets, therapists, a supportive blogging community, whatever feels safe and supportive. Making changes, transformations, living with an illness, healing from trauma is a lonely journey, but as I’ve said many, many times it doesn’t have to be an alone journey.

I work very hard to accept that I’m living with an illness, I’m living with PTSD. It doesn’t define me, but it is part of what I cope with on a daily basis.  With this acceptance comes doubt, nervousness, sometimes feeling defeat and extreme exhaustion. There are times when I just want to sit down in the middle of the ring, have the referee give me an 8-count and quit the fight. That’s when I need a corner coach.

There are times, when I look at my therapist and say, “I just need you to be my corner coach right now.” He gets it, says all the correct, “I’m proud of you, you can do it, you’re doing great, you’re kicking-ass kind of things. I’m then able to stand up and can get back into the ring of life again.

There are times when I say to my friends, I need you to cheer me on right now. It’s easy to trust my therapist and ask him to do that. It’s been a steep learning curve to ask my friends and family. I always had that role. The happy, you can do it, I’m right there beside you role. But I’m learning that I have to ask my friends and family for that kind of support. To infuse confidence, to see me, hear me, rest with me, hold my hand, go out and play a bit.  It’s what I need right now.

I’m exhausted from eight years of complex-PTSD, but I’m stronger and determined to feel times of contentment and peace more and more in my life. One of the reasons I’m stronger is because I know I need to have corner coaches.  Do you have people or animals in your life who will get you back in the ring, or sit down beside you and rest with you, letting you know that you’re okay? Do you have a corner coach?

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image source: pexels

 

Thank you for reading my memoir, Untangled, A Story of Resilience, Courage, and Triumph