Tarlov Cyst Disease

A Moment From The Bottom

February 20, 2016
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I’m fairly certain this is me coming straight from the bottom because never in my life have I felt so entirely defeated.  So deflated.  So empty.  So withdrawn. So helpless.  I’ve had thoughts and feelings over the last two weeks that I’m not proud of, but I’m also not ashamed to admit to.  I feel like my body has declared war on itself and there is absolutely nothing I can do but stand by and watch myself unfold at the tear stained seams. This is without question the scariest, ugliest, loneliest, most frustrating challenges one could ever imagine.  And unfortunately, this challenge landed square in my lap (or my spine rather) and nearly everything that once made me “me” is slowly being stripped away.  Often times I look at myself and don’t even recognize who I am anymore.  My outer shell may be present, but the relentless chronic pain is slowly chipping away at everything else I have in me.  Happiness. Strength. Will. Hope. All slowly diminishing away.

I am not me anymore

Most people will wake up in the morning, come up with a mental checklist, and think about all of the tasks they need to tackle for the day.  Those living with chronic pain conditions don’t have that “luxury”.  Getting out of bed is cause for celebration and anything beyond that earns high fives & multicolored sprinkles.  Each movement, every daunting minuscule task for the day has to be carefully thought out prior to even taking that first step out of bed.  My cysts now control EVERYTHING in my life, everything in our lives’.  They are the driving force of every decision we have to make, regardless of how simple or complex.

Getting out of pajamas for the day, what type of clothes I can wear, getting in and out of the car, my daughters volleyball practices, dinner, what time I should try to sweep the floors, can I take a bath or a shower, deciding between a trip to the grocery store and taking my dog for a walk (because I can’t have both each day anymore).  And truly, regardless of how much thought I put into any of it, I know that at the drop of a hat any and all of it could change anyways.  This is not a “take things one day at a time” kind of medical issue.  This is a “let’s see what my cysts have planned for the next 5 minutes.”  It’s an all out, no holds barred, relentless assault on every inch of my body, especially during a flare up like now.

A few days ago I was probably at the lowest point of my entire life.  After nearly 24 hours of intense level 10, I must be dying, please call the ambulance, it hurts to blink kind of pain I remember while my husband was holding me, I said “I’m done.  I can’t do this anymore.  I don’t even want to be here.”  I didn’t have the courage to say I actually wanted to die, but it’s definitely what I meant.  I have never spoken or even thought those words before and frankly it scared the shit out of me.  Not only because I said it out loud to my husband, but because I truly meant it.  In that (very brief) moment, I legitimately felt like I didn’t want to be on this Earth anymore.  For those 5 seconds in time I just wanted the pain to stop.  I wanted the suffering to stop.  I wanted this roller coaster to end so I could exit.  I wanted better for my family.

Now before any friends or family put a 51/50 on me, rest assured… I’m NOT suicidal nor have I ever done ANY harm to myself nor do I any plans to.  Again it was a moment, a very brief moment where emotions and feelings and PAIN were running on all cylinders.  I’ve never battled ‘depression’ or thoughts like these, but I guess if I had to call “this” something thats what it would be.  Depression is setting in as it does for many chronic pain sufferers and its entirely unfamiliar to me.  I feel like I’m standing in quicksand and no matter how hard I fight or which way I move, there is no branch to grasp onto or hand to help rescue me.  My condition is quickly progressing and week after week I’m well aware that I’m worse today than I was yesterday.  It’s painful, life changing, and nothing short of depressing.

And it’s actually not even just about the constant pain though.  I don’t think I will ever be able to express the overwhelming amount of guilt I feel, especially during a flare up.  For the past two weeks, I have watched my husband take on far more than anyone should have to.  Not once did I ever have to ask or remind him to do anything, but he’s brought our daughter to and from school, done the grocery shopping, prepared every single meal, prepped our daughters breakfast and lunch during the week for school, dealt with all homework & school projects, cleaned, done the laundry, made sure I had warm towels when I get out of the bath, laid out my pajamas every night for me, given me fresh sheets to lay on, and is still there to cheer our daughter on during her 2X per week club volleyball practices.  This is all in addition to trying to work 40 hours a week.  My husband has taken on the roll of mom, dad, care giver, and bread winner.  I can’t count the times I have said “I’m sorry” to him.

Sorry you have a wife who is completely useless.  Sorry it takes me so long to get out of the car.  Sorry I’m on my fourth day straight in pajamas.  Sorry you had to take another night off work because your wife couldn’t function.  Sorry you just worked 11 hours and now have to drive Makena to school.  Sorry you had to cook dinner… again.  Sorry you had to fill up the truck three times this week because of all the extra driving you are doing.  Sorry we can’t eat out tonight.  Sorry we can’t go see that movie you have been wanting to see.  Sorry you felt the need to stop working out because you thought it would make me sad.  Sorry your family has to come over here again to visit with us.  Sorry you have to do the cooking & cleaning before the family comes over.  Sorry you can’t sign up for that extra training that would look so great on your record.  Sorry this isn’t what you signed up for when we first got married.    Sorry you have to see this.  Sorry for breaking your heart again with my tears.  Sorry.  Sorry.  I’m sorry.

I won’t ever get started on the mommy guilt here, but believe me it’s present and accounted for as well. Luckily I am able to hide so much more from the kids.  They don’t see or understand 1/4 of everything thats really going on.  Chronic pain sufferers have a talent for smiling through the pain and pretending everything is awesome.  For the most part, the kids just know my back hurts and are pretty unsuspecting of anything else.  On days I am at my worse, I go to our bedroom and my husband just tells them I’m sleeping.  Thank God they don’t have to see the same as my husband.

So what now?  I suppose when you in my current position, there is only one direction you go can right?  For weeks now I have been sinking to the bottom.  I had my phone turned off, no desire to check emails, no social media, no phone calls, no texting, no desire (or energy) to do anything.  I first went off the grid because it hurt too much to look at my phone or sit up by the computer or to even talk.  Then I stayed off the grid because there really was nothing to say.  Friends and family show their concern and ask “How are you feeling?” and I’m simply tired of lying.  No, I’m not fine.  I’m not doing good.  Things aren’t getting better.  I’m not “fighting” or staying positive.  I haven’t spoken to my neurosurgeon.  My latest procedure sucked but I don’t want to tell you why.  I also know that at any given moment if I’m face to face with someone and we really “talk”, I’ll be in tears within 20 seconds.  Nobody wants to see that.  People who love and care about me don’t want to see me in pain.  People don’t REALLY want to know the truth.  Instead I chose to withdraw, to be silent and stay hidden.

Chronic Pain Disease Quote

I’m embarrassed.  I’m angry.  I’m frustrated.  I’m scared.  It’s getting harder and harder for me to pretend though.  So to my friends, family, and followers who have taken time to check in on me… I’m sorry I have left you in the dust these past couple of weeks.  It wasn’t my intention to start with but believe me, I’m actually doing you a favor.  It ain’t pretty right now and until this flare goes on an upswing, I will be laying low key as much as I can.  Please know that I am well taken care of, safe, and have everything I need.  I’m working on building up that energy to come out fighting again!   With any luck, the pain will begin to subside long enough for me to catch my breath and regroup to get my head back on straight!

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4 Comments

  • Reply
    Amanda Albury
    February 21, 2016 at 6:53 am

    Love you friend… Hugs!!!

  • Reply
    Blair
    February 22, 2016 at 2:46 pm

    Life sucks sometimes and it’s ok to feel the way you are feeling. Sorry you are going through this.

    Psalm 46:1 God is our refuge and strength, a very present help in trouble.

  • Reply
    Kristen
    February 22, 2016 at 10:55 pm

    I’m so so sorry for your extreme pain and the way it has done a complete upheaval on your life…truly I am. I don’t mean that in an insensitive way…I’ve been thinking about you a lot. You’ve educated me so much and I’m so grateful for you…praying for relief for you.

  • Reply
    Eleanor
    February 29, 2016 at 7:10 pm

    I’m so sorry for your pain & for the disruption to the life that you were loving & enjoying. I can only imagine how frustrating & disheartening this is to face every day, on top of the pain. Many prayers for relief of your pain, and a return to some normalcy for you.

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