The Battle Within Yourself: Being a Hostage in Your Own Body

This post isn’t some inspirational build you up false hope post. This is real emotion about what I am going through.  I don’t know if this is helpful to others.  But maybe it will help people understand what we chronically sick people deal with daily emotionally.  So read at your own discretion without judgement. This is what it’s like to be in the mind of someone who battles their health daily.

it never ends

I’ve been really down the last few weeks.  Hell let’s be honest I’ve been down the last year.  This past week was the anniversary of when my life came to a screeching halt.  In one day I became so sick that my life stopped.  I was hit with the stomach virus that left me with horrible vertigo and a world of hell.  This lead to the diagnosis of my Acoustic Neuroma brain tumor.  Needless to say it’s been very hard physically and emotionally.  I have moments of scraping myself off the floor and getting back up.  But ultimately it seems something else is always trying to knock me down.  At times I feel like the Universe is conjuring against me to see if it can break me again.  So much crap has hit me in this last year.   I was just put in the hospital again last week.  And it has worn me down.  It’s hard to explain what is going on with me to people who have not gone through it.  I feel like I have let so many people down because I cannot give what they expect of me.  I feel like my relationships are strained. I feel like I have lost so many people in my life because of my chronically ill body.  But on the inside of this chronically ill body lives a lively person with feelings, emotions, passion and desires.  There are so many things I want to do with my life, but my captor will not let me.  I have become a hostage in my own body.  Desperately fighting to get better so that I can live out my desires as normal human.  The only way I know how to explain to others what it’s like to be chronically ill, is being a hostage.

For many years I’ve suffered with horrible back pain. I have struggled with life trying to live it as much as I could while battling pain every second of every day.  I tried to do my best to maintain past jobs fighting through the pain. I tried to be a good friend and show up and be present in my friendships.  I tried to have relationships and give my all to them to prove that I cared.  I did these things while suffering every second of every day in horrible pain, while being a hostage I my own body.  It wasn’t easy. I gave all I could.  But for most people all I could give was never enough.  Eventually people start giving up on you because all you do is disappoint them.  And the reason you disappoint them is they have no idea what it’s like to live a life of pain where every little thing you do makes it harder.  They expect from you the same that they give or are able to give.  But the problem with that is someone with a chronic illness can’t always give what a healthy person can.  It takes twice much if not more to do simple things that they don’t even think about doing they just do them.  Like getting dressed, just for me to be presentable for public viewing takes so much effort and pain. By the time I am showered, hair done, make up done, wardrobe picked out and put on…well I’m utterly exhausted.  I have no energy left for getting out and having fun.  I can’t follow through on the plans I so desperately want to keep.  So friendships drift away. Relationships fizzle out.  And eventually you are sitting there all alone fighting by yourself.  You become scared.  Scared that you won’t be able to fight this battle alone.  At times you start to think you will be alone forever.  Because who is going to want to take on the huge challenge of being in the life of a person who is always sick or battling major health issues.  And in that moment you are reminded that you are a hostage.

run away

Who do you blame for this hostage situation?  You are angry and want to blame someone for the damage that was done to your life.  For all the things this pain and illness has taken from you. But there is no one to blame.  You didn’t ask for the health circumstances you have.  You didn’t do anything to get a brain tumor or a bad back.  And no one else did either.  There simply is no one to blame.  That doesn’t make it any easier.

My suffering has been long and hard.  Dealing with one chronic issue is bad enough, especially chronic pain.  As if battling debilitating chronic back pain for 13 years wasn’t enough, last year in May I got diagnosed with my brain tumor.  I have struggled so much with this tumor that has taken so much from me. It’s taken my hearing on one side, my balance and ability to function normally.  It’s taken my quiet and peace of mind leaving me with constant nonstop horrible ringing in my ear.  There is never a moment that doesn’t have horrible sounds that torment me inside that no one else can hear.  At times you think you are crazy when you hear these sounds, but Tinnitus is a reality for many Acoustic Neuroma patients.  This tumor has taken away my ability to drive and work.  It took my ability to get out of the house when I want and my freedom to see my friends or even date.  The tumor was taken out and that is what I am left with after surgery.  This recovery has been a living nightmare.  Its worn me out physically and emotionally on top of the chronic pain I was already in.  As if that wasn’t enough before surgery I had an eye virus from hell that put me in the hospital for a week. I battled it for months and then it led to the diagnosis of another brain tumor, my meningioma. Then that wasn’t enough, after my brain surgery I started having horrible new neck pain along with my existing back pain that caused my arms and legs to go numb.  I found out I have a compressed spinal cord and pinched nerves in my lower back.  Now it looks like I will need surgery to prevent further damage to my spinal cord and to prevent me from being paralyzed.  I live in fear daily now that any move I make will be my last.  It’s terrifying to think one day you could be walking and the next you could be trapped in a body that can’t even move.  And if all that wasn’t enough…the very medicines I used to control all my pain from those issues are what put me in the hospital.  Now I’m weak with no energy at all. Since last week after I got home from the hospital I have been pretty much in bed.  I simply can’t function.  My body is weak and dizzy and falling over almost every time I walk.  Again I am a hostage.

When I was a kid I remember looking forward to being an adult.  I had so many dreams for myself.  You plan so many things out for your life.  Like being a wife and a mom and having a family that loves you and you who love.  Having a successful career.  I wanted to travel and see the world and learn about different cultures, eat amazing food and enjoy the beauty of this world. I wanted to be the kind of mother that raised amazing little humans who would make the world better one day.   But then you grow up and find out life doesn’t go as you plan it.  I never would of thought at 40 I would be suffering with several chronic illnesses, divorced, and with no kids.  All alone.  I thought I had control over my life and the paths I took. And I do to some point. But once again reality has reminded me that I do not have full control because I am a hostage.  I am a hostage to these health issues that torment me daily.  I am trying so desperately to escape this prison my body has created and trapped my soul in.  But every time I fight and think I’m winning it challenges me again.  I keep having more issues thrown at me.  And it utterly wears me down.  You look back at your life and all you can see are things you didn’t get to do because of your crappy health.  Because of this when new opportunities or people enter your life you get scared.  Scared that you won’t be able to live up to their expectations of what you can do.  Because you simply aren’t in control of your life anymore.  At times you push people away because you don’t want to bring your misery into their life.  You realize it’s bad enough you are suffering but as much as you want to live your life freely you also do not want to ruin another person’s life with your problems.  So you retreat and again you are a hostage.

Living a life in chronic pain or illness is not easy. It’s not just the physical issues that wear you out. But the emotional side of it.  You fight every single day with all you have to get better and get your life back.  But something keeps happening to remind you that you are a hostage and not in control. It utterly wears you down.  But with any hostage situation you have two options.  You can either allow your captor to control you or you can fight for your life.  I have been fighting for my life for years. This captor of mine is mean and hard to battle.  So I have to look inside and see the things I want and fight hard to escape this prison I was put in against my will.  I have to wake up each day and set goals for myself.  They may not seem like much to most people.  But they are huge for me.  Because when you are a hostage and someone is constantly tying you down and beating you up even the little steps you take to get out are huge.  Eventually one day with enough of those little steps you will find your freedom again.  But the one thing you have to remember is do not give up because you can’t become free in one day or with one step.  It will be hard and it will test your every ounce of being.  And though you want everything all at once you have to appreciate the small hurdles you’ve crossed. You have to see that there is no time frame you can set on freedom or your recovery.  But stay focused on the light ahead of your darkness.  Just take one step at a time and slowly but surely you will arrive at a place that is good with peace.  Eventually you will look back and see all the chains that held you back that you broke free from.  In that moment you will see that you are no longer a hostage but a warrior that is strong and full of light.  Because you fought an impossible fight and you won.

warrior woman

 

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Do Nice Girls Finish Last?

prince will come
Nice girl in waiting…

Dating in general is hard these days.  But trying to date while dealing with a chronic illness or a major health issue well…that’s nearly dating suicide.  Before all my chronic issues happened like my chronic back pain I battle daily, and my brain tumor I’ve been battling for almost a year now…oh and we found another brain tumor too…but I’ll tell you about that one later.   So before all this crappy health shit happened to me I was married.  Married for 10 years in a not so happy marriage. I won’t go into the details of my marriage let’s just say it was bad.  But my ex and I have come to a place of peace and forgiveness and we are good now.  He’s the best ex-husband I’ve ever had!  So after being married that long the last time I was single was 1999 in my 20s.  I was healthy as a horse back then with no real issues other than an occasional cold or sinus issues.  I was prime time meat for the dating pool.  Dating was very different back then, before technology ruined it.  I have a theory that technology has taken out the romance out of dating.  The part where the guy actually tries to woo the girl and sweep her off her feet.  Why you ask?  Well now technology has made it so easy for a guy to order up a chick to his door kind of like pizza via online dating apps.  They don’t have to woo anymore when they can order a girl of the night with pizza and beer. It’s sad actually.  So newly single I was plunged into the world of dating with technology.  I’ll tell you when you are 40 and dating you don’t have much tolerance for crap.  And there’s a lot of crap going on in the dating pool.  Like I said earlier dating is hard enough but add major illnesses to the mix and it’s a disaster.

When I got diagnosed with my brain tumor last May I told myself I wasn’t going to actively try to date.  I was taking myself off the market and going to focus on me and healing.  But then there was one guy I dated for a few months last summer that I met through online dating.  Despite my promise to myself to not date he was so persistent.  We had been chatting for a while when I first got sick before I knew I had a tumor.  So we had time to learn about each other and he really had me thinking he was a great guy. I want to mention I gave this guy full disclosure about my health issues.  So he had a way out if he was not up for the challenge of dating a girl with major issues about to undergo brain surgery.  But he said he could handle it and he wanted to be there for me during this hard time.   So finally I gave him a chance.  It took a lot of effort and energy when I was so sick with the tumor to do all the stuff girls do to get ready for dates.  But I felt like this guy could have real lasting potential so I did.   He seemed so nice and the first month seemed like a fairy tale romance.  He even met my parents and had them convinced he was one of the good guys.  But I quickly found out that my douchedar (douche detecting radar) needed an upgrade.  It wasn’t working and it didn’t detect the douche through the acting he was doing.  During our dating he kept making me feel bad about being sick.  Yes, you heard that right he made me feel bad about having a brain tumor.  He made comments about how he didn’t think he could deal with someone who had health issues because he was healthy and never had been sick.  He told me I was weak.  He said he wanted someone healthy and strong, who worked out all the time.  I was unable to work out back then I was barely able to walk most days due to all the issues my tumor caused.  So being a gym rat wasn’t in my immediate future. It’s not like I was some troll, I was actually in good shape for being a brain tumor patient and had genetics on my side.  But I never thought that mattered to him because he had told me how amazing I was, beautiful, kind, loving, big heart, selfless, strong willed and all these amazing things you hope your partner sees in you.  But those good qualities weren’t enough, he also wanted a physically perfect Barbie.  He would rather have the perfect outside than the perfect inside.  Yes, this guy was a douche nozzle.  He hurt me.  And come to find out during all the times we were dating when I was too sick to see him, he was seeing others.  Yep… again douche nozzle.  So I made sure when I dumped him that I told him that I might not be at the gym lifting, but I was stronger than him. I battle things most people could never handle every single day and I keep fighting.  I keep getting back up after getting knocked down.  I will not let my illness define me.  I am more than some weak girl with brain tumors and a bad back that he saw.  I am a woman full of life with so much to offer. And I made sure to tell him he would never get to have all that again.  So that ended quite painfully for me.   But I had to focus on my brain surgery and recovery and I didn’t have time to cry over a douche nozzle.

But what I want to make clear here is that this is a guy who told me he thought I was his soul mate.  That he was falling in love with me and wanted to start a life with me.  I truly believed it cause he did act like that at first.  And no I don’t think it was to get laid.  He was still acting this way even after that happened.  Most guys if they are just looking for a bang will end the act after that.  I’m not sure what happened with this guy.  Or why he became such a jerk to a good person as he called me.  So I really did take a break from dating after this.  I’m still in my post op recovery and dating free.  I’ve been able to take a look at my past and see the lessons and grow during this journey of self-discovery and healing.  See I know I’m a good person.  I truly believe that there is someone out there for me who will love me just as much as I love them.  Who will be there for me during my times of need as I will for him.  But after a conversation I had yesterday with a guy it left me wondering…

Yesterday on Facebook a friend of mine made a post about her online dating first date and how the guy didn’t properly represent himself like he did in his pictures.  We’ve all had that happen.  Attraction is important to most of us.  But that doesn’t mean you have to be a jerk about it if you aren’t feeling it.  This guy on my friend’s post was saying things like go to the bathroom and ditch him. I quickly spoke up saying that would be rude and there is no reason for that and she should just be kind and say she’s not feeling a connection.  So this guy who was encouraging the rude method started debating this with me.  Ok well I’m always up for a debate, a friendly one.  After many exchanges and me sticking to my guns about why taking the high road and being kind is always the right way, he was still on his mean method.  He said to me you must be single. I told him yes proudly and I’m going to stay that way till someone amazing comes along who will treat me with the same respect I treat them.  That concept seems easy enough, respect.  He later told me I was too nice and guys can’t deal with that, nice girls.  STOP hold up a second here!!!  See I have a lot of guy friends and I am always the shoulder they come whine and cry on when their relationships go wrong.  So I’ve consoled many a grown man sad over a bitch that did him wrong.  I’ve heard the words come out of their mouths “why can’t I find a nice girl who is pretty?”  Of course I’m always thinking well hello, right here.  But I don’t date my friends…they are like brothers.  Also I’ve had that experience with a couple very close ones and it never worked out and it strained the friendship a bit, but we later recovered it.  So I would never put my friendships at stake unless I really felt he was the one. Because I value my friends.  Anyway, this guy was telling me that since I’m a nice girl I’m going to be forever single.  Because men just can’t handle a nice girl.  These words made me rewind my brain to all my past boyfriends and dating history.  I thought about it, hard!  And I have to say he was kind of right.  In most of the cases I was way too nice to the guy at first.  I’m sitting here thinking but they always say they are tired of bitches using them and hurting them.  They just want a sweet, loving, kind nice girl who is also pretty. Again…Hello I’m right here!  So I’m stumped.  Men say they want one thing, but their actions say otherwise.  It does seem to me that the girls who play games, and do the bitch routine wind up getting the guy. They get the ring, the dream wedding and the fairytale future.  At least it seems that way.  But I have a big problem with the bitch method.  See the thing is, I’m a nice person.  I’m nice to everyone, until you give me a reason not to be.  I treat everyone with respect and kindness.  I don’t understand people who play games.  It’s not in my nature to use people or play mind games with them.  I try to leave people better than I found them.  So being anything but who I am seems like it’s fake.  I’m just not going to change who I am to find a guy.  Because I know that eventually the right guy will see me, all of me and appreciate all that I am.  I don’t want to get the guy by pretending to be something I’m not.  I have integrity.  Plus, I really don’t think upping my bitch game is going to give me the kind of guy I want.  But I’m still left with the question roaming around in my head “Do nice girls finish last?”

I don’t have the answer to that question yet.  For now, I’m still focusing on my recovery from brain surgery and don’t have time for all the dating drama.  But I hope to find love one day and a partner for life.  And this conversation with this guy makes me wonder if I’m forever doomed to be single because I’m nice.  I’ve certainly had enough people in my life tell me I’m pretty, beautiful, hot, sexy and all the things we love to hear about our looks.  So I’m pretty sure I’m not a troll, and I’m nice too!  Oh and I’m a bad ass cook!  I’ve

shelly train tracks
See I’m not a troll.

been told I’m smart and funny.  I’ve been told by many a guy friend and even past exes that I’m the total package. Then what is wrong?  Why am I not a keeper?  The only answer I can come up with is I haven’t met the one yet.  The one that sees me all of me, my soul.  The one who sees all my imperfections and sees past them to all the beauty inside and knows I’m perfectly imperfect for him.  So I’m not going to let this whole nice girls finish last crap get to me.  I’m going to continue to be the good person that I know I am and treat others with kindness and respect. Because more than anything I believe in the law of attraction, what you put out in the world will come back to you.  So here goes, my positive loving vibes going out to the universe. I love me and I show love and kindness to others.  One day my prince will come and it will be amazing.  Till then I’m going to be who I am and know all good things come in time.  One day I will prove that nice girls don’t finish last, we just don’t settle for the first thing that comes around.