Lies I Tell Myself: VII

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Lies I tell myself. “This is all a bad dream…”

There are days in my life where everything is so absurd that I am positive that I am stuck in a bad dream and I desperately want to wake up.  This past week has been full of them.  I was supposed to get a upper endoscopy and a colonoscopy and the day before I get a phone call that I now need a release from my neurologist because of my seizures and tachycardia.  From the patient point of view all I know is that when I eat my stomach reacts painfully, at times regurgitating food I ate hours prior.  Then when it empties it is like having a baby pass from my stomach to my small intestine.  From there it can sit for days…until it eventually moves into my large intestine.  It just grows until my abdomen is tight and painful.  I will spare the details of the end of the journey, but know that I would rather not eat than experience this everyday, all day long.  I have dealt with this for six weeks.  I had a seizure and I haven’t been quite right every since.

I have lost close to 20lbs, but have managed to add some weight on.  I don’t want to be sick-thin.  I am having trouble taking my vitamins and it my energy levels.  I have calmed down my level of activity at PT and Dance because I have been having issues and falling.

All of this seems unreal to me as I look back at what I just wrote.  It feels like last week I was living a normal life and now all of that is gone.  In reality, it has been almost three and a half years and I simply have recollections of feelings and notions of events that have no grounding in time.  Of the physical horrors my body commits all too often, it is the existential horror of not having a firm grasp on the passing of time is beyond my greatest fears.  I always wonder if I will recognize my daughter in ten years.  Will she stay twelve in my head forever?  Seems like I saw her yesterday but she has been gone for almost a week.  I literally have to go through social media and my memory logs and question people who I may have been around to figure out what is happening in my life.  I rely on my phone to tell me everything I have to do, when it needs to be done, where to go to do it, and all the people who are involved.

Still, every morning right before I open my eyes, I feel the stiffness of my joints, I assess the level of pain in my head and neck and shut off my CPAP and realize THIS IS MY REALITY and my dreams are only a temporary respite from my daily issues.  Every night when I go to bed, I pray that I wake up to something different…just not worse.

This is my reality that I have to accept again every morning.

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Lies I Tell Myself: VI

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Lies I Tell Myself: I don’t need to write that down. I’ll remember!!

One of the biggest problems that me and my neurologist struggle with is that in the heat of the moment, I don’t really remember that I have lost the ability to remember much, so I think I will remember like I used to, but later I learn the errs of my ways…again!  The worst partis constantly feeling bamboozled by my brain?

I have a phone that takes notes in at least four different ways, I keep a memory log (which I often forget about!), and I always have paper with me.  No reason I should not have access to all of the information I receive, but that old part of me just swears that we got this, meanwhile, my whole brain is on fire as I think too hard about what it was I forgot!

This process has been repeating itself since as long as I can remember…which isn’t long,  so I can’t really give an answer.  I suspect that it has been at least since the surgery, possibly since a little before.  Memory was one of the first major symptoms behind the pain and nausea.

My phone calendar is full of therapies, appointments, naps, meds, and more therapies.  I am trying to get better at remembering, but am considering having a pin made that says “if I didn’t write it, you didn’t say it”.  Not sure how people would take it.  I realize my inability to remember their super important information is anathema in their eyes, but I am not the person everyone remembers and wants me to be from 2014.  Trust me, if I could go back I would, but, that isn’t how it works, so here I am.  Thinking I am in 2014 in my head (because time hasn’t really moved for me) in terms of cognition and 2016 in terms of time.  I feel like the world went on without me when I remember that I forget.  Every time I remember that I can’t drive it seems like I was driving yesterday (I was not!) but it seems like it.

These are the worst because they bring up three years worth of misplaced emotions and fractured memories.  I can’t drive because someone drove into the back of my car as I turned into church to use the restroom.  Such a simple act changed my whole life.  Ruined my dreams, stopped and reversed my vocal progress, and made into what I am today.

However, the blessing is really in the fact that I don’t have to carry the weight of my emotional burden everyday because I just think I am on a day off from work or it’s the weekend.  It still has not permanently seeped in yet that I don’t actually work, but that is ok!  Things take time and hopefully as my life shifts I will just find a new “work” that I do and maybe keep a note telling me to write things down!

A Fuzzy Friend

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I am human and I love dogs.  I have been this way my whole life, but right now, I am not in a situation that allows me to have pets.  That is probably good for now, considering I may not have the energy to properly care for a pup.  That doesn’t staunch my desire at all, though.

I think that there is a part of me that wants to take care of someone else.  I want to be the caregiver instead of the cared for.  I suppose I would love to see myself in the stronger roles in life.  Still, this isn’t the right time, so my dream will remain a dream.

So many people I know with chronic illness or pain have a fuzzy companion and I think part of it is also just having a companion that never tires of your voice and loves snuggles.  Humans are wonderful, but sometimes my neediness is too much for them.  I suppose a dog would enjoy me talking to them since they would have my full attention.

Forging relationships and trust with animals has always been easy for me and I just miss having that comfort.  As a child life was unpredictable and often frightening, but there was something about the dog that was reassuring.  He  offered and reciprocated love and compassion.  A love untainted by annoyance or anger.  Dogs are such precious gifts.  Cats are too, but I need more attention and affection than a cat is often willing to give.

Either way, I have to wait until I get situated in my own place again.  Then I can go down to the pound and rescue a doggie!

I am no doctor, nor am I a scientist, but I can tell you that your support system can also include the animals that help bring you peace and calm.  People are a wonderful blessing and a valuable resource when it comes to major life changes, but they are human and no person can take on everything.  Having a pet that helps to cheer you up or make you feel loved and safe helps bring balance to many lives and I think in the future I will benefit from this.  For now though, I am going to dream of the lil guy who will someday get 30% of my snuggles and love!

7 Stages of Grief For Chronic Illness

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The contents released in this series were inspired by this article: The 7 Psychological Stages Of Chronic Pain which I found last week while surfing the net (dig my lingo, guy) looking for how different types of losses cause different types of grieving.  When we lose a loved one, we are faced with the finality of death.  It is often a hard reality for most of us who have experienced the actual passage from this life.  Time usually helps these wounds close over and they become tender spots in our hearts.  Memories that can bring back tears and smiles.

When we lose our home or job or car we often feel violated, ashamed, or helpless.  I have lost all of these things and they can bring alone a grief that is very dark and scary in the beginning, but as life continues on and new opportunities arise we make it through the ending part of the grieving process and begin fresh again.

When you lose your memory the process becomes more challenging.  When you are in chronic pain the process becomes longer.  When you have a degenerating disease it just becomes a mess.

For me, the memory loss is awful because I am constantly being reminded that I forget things and it is like I am in a constant state of being shocked about something I already knew but forgot.  I don’t know how often I tell people the same things over and over.

The addition of chronic pain makes the anxiety in my life miserable.  See, I could be having a fairly painless day, but I know it’s coming.  Maybe a day, maybe a week. I am going to have an amazing headache.  I know in my heart that it is coming and it’s hard to tell myself to just enjoy today.  I feel like I need to prepare to feel the wrath of the Palm of God pressing the crown of my head onto my neck.  Then, like yesterday when a pre-headache symptom appears, I am just counting the hours until I am debilitated.

My body hasn’t died.  My body as I knew it and loved it are simply no longer present and I have been travelling a river of tears trying to get back to a dream.  I think my old body would want me to learn to love my new body and take the time to explore it’s bells and whistles.  It’s hard.  I just don’t know what I am or who to be.  That’s ok.  If this sounds kinda familiar to you, I encourage you to read and comment about your experiences over the next 7 posts.  It honestly is nice to know we are not alone.

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“I can’t believe it’s been a whole year!  I just got a promotion, what have you been doing?”                                     “Surviving!”

The world at large does not have a thorough understanding of recovering from brain surgery.  While their lives breeze by marked by accomplishments and milestones, my days are monotonous and almost indistinguishable from one another.  My memory started fading over a year ago, and I only have vague recollections of what has been going on in my life.  I have not achieved anything, and it makes for very awkward conversations.

Dreaming…

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Dreaming the dream!

Life is full of dreams.  They change and mature as we grow and sometimes when we are on the cusp of achievement, the dream dies.  I felt this way last year when my doctor told me I would need brain surgery.  Everything that I had worked for was snatched from my hand and I was left with what felt like nothing.  I could no longer sing arias or even hold my guitar.  And when I could hold the guitar, my fingers wouldn’t always cooperate.  After surgery, I got a ukulele to help me with retraining my fingers to listen to my brain.  It has been the most comforting item during this period of my life.  When everyone is sleep and I am wide awake, I can sing and play and feel like my voice is still relevant.  I may never go back to school.  I may never perform a solo again.  I may never be what I thought I would be.  I will sing though, and I will imagine all the people whose hearts I could have touched.