Category Archives: Another Fucking Growth Opportunity

Life without Margin…

It was supposed to be a day of rest. Having come off of two days of high energy and low pain levels I knew another flare was coming. I planned to do a load of laundry, sit in the car while my newly permitted teen drove, and make a good dinner. The rest of the day was to be spent expending as little energy as possible and dealing with the aches and pains of activity.

I had my coffee, I took out the dog. The pain level wasn’t too terribly bad, about a 6. All over body aches, joint pain, headache. Your basic flu feeling.

I came upstairs to luxuriate in my bed, watch a show – my hands hurt too much to hold a book up for reading – and snuggle my dog. I came up stairs slowly, muscles aching with each step. I came to the door and low and behold there was my cat, peeing on my bed.

Suddenly my day of rest became stripping the bed linens off to see if her commentary had soaked through to the mattress protector underneath. It had. Then it was gathering up the whole kit and kaboodle, getting it into baskets, getting out a fresh protector, fresh linens, new blankets. Of course everything was on different floors of the three story house because laundry is in the basement and I live on the highest floor.

Up down, up down… can’t keep going. Get the sheets on… get the blanket on… kiddo, please help me with the pillows.
I’ll pay you to do the rest.

And I’m done.

Living with chronic pain is like living paycheck to paycheck. You may do just fine so long as everything happens as expected, so long as you can forgo some things and appropriately prioritize others.

However, as soon as the unexpected strikes you are borrowing on credit and you will have to pay for the expenses another day, or several other days. As for interest, you can push yourself into another flare up and lose days, weeks, sometimes more to lowered energy levels, high pain, medication side effects, etc.

It’s life without a margin, without a safety net and believe me, it sucks.

The shadowboxer *amended

I have been tentatively diagnosed with trigeminal nueralgia. It’s a clinical diagnosis, meaning they won’t know for sure until we rule out everything else, but the signs are pointing to this baby as the likely cause of my issues.

Trigeminal neuralgia is traditionally called the suicide disease because of it’s recurring, unpredictable, and intense episodes of explosive pain.  I have decided to rename it “The shadowboxer”.

When I was just out of high school I got a job working at the Wendy’s on Colfax and Emerson.  Each day during my shift this homeless man would walk past the windows in our “sunroom”.  He was always boxing an invisible opponent, which on east Colfax isn’t the most uncommon sight ever.  However, I would see this guy get hit back by his invisible opponent.  His head would snap back, he would buckle at the stomach, sometimes he would even get knocked down.  Every time he would stand, reposition into fighting stance, and keep on punching.

Well now I have an invisible opponent of my own.  I get hit or kicked in the left side of my face several times a day.  The rest of the day I spend feeling as though my face has a headache.  My left cheek always hurts, my left eyebrow is sore to the touch.  I have decided I will also continue to stand up, reposition into a fighting stance, and keep on punching.  Hence the name change.

I never know when these boxing matches are going to occur.  The wind can set them off, sounds can set them off, trying to sleep on the left side of my face can set them off, chewing can set them off, etc.

To be frank, I am terrified to leave my house.  I don’t want to become an agoraphobe, but the thought of being out and about when one of these matches comes on is scary.  I am embarrassed by them, they turn me from a smiley fun person into a tense curled up ball of pain and misery.  They make me cry.  Sometimes they hurt enough I have to bite onto something to stop from screaming.  So imagine my horror at the thought of doing this at a party, during the class I teach, while picking my children up from school, etc.  I don’t cry in front of people easily.  I hate crying in front of people.

So, how did this all come about?  Why the sudden change from headaches to the Shadowboxer?  It turns out that people with trigeminal neuralgia can be misdiagnosed as having migraines for a long time before the traditional symptoms manifest.  It also turns out that trauma can cause an onset of otherwise dormant symptoms.  Well, three or four weeks ago I fell on the ice and hit my head.  Three or four weeks ago a tow truck ran a red light and T-boned my car.  I have no medical training so I don’t know if that is why I am suddenly where I am, but I can tell you those events coincide with the pain timeline.

How can you help?  Please don’t offer me advice, unless you have trigeminal neuralgia.  Please do offer me love.  Please let me know if you have somewhere I can retreat to at an event you are inviting me to, if an attack occurs so I don’t have to worry about embarrassing myself and everyone else at your party.  Please reach out to me, visit me, send me notes.  If I cry when we are talking, please just let me cry.  Please don’t tell me how much better it’s going to be.

Trigeminal neuralgia has been described as one of the most painful and debilitating diseases in existence. I got to have that conversation in the medical office when your doctor looks at you, puts on his “Bad News” face, and says “I can try medication and if that doesn’t work, surgery, but if this indeed what you have, it’s a lifelong, debilitating condition”.  So I am not really wandering around feeling like things are heading towards better.

What I need is the ability to express that.  I understand the first knee jerk reaction to someone saying life sucks is the sun will come out tomorrow.  I get it.  It’s a reaction I initially have too.  However, a good friend of mine long ago taught me better things to say.  Here are some examples, if you ever find yourself at the opposite end of anyone facing anything like this, like me.

1.  That sucks, I’m here for you.

2.  I love you.

3. I am sorry things are so hard for you right now, let me know if you need anything and I will try to help.

4.  Hug

5.  I will totally come hang out with you where you are the most comfortable.  I will not be mad at you if you can’t make it to my parties etc.

6. If you want to spend the day watching movies in bed, I will come do it with you.

7.  I will not be embarrassed if you have an attack while we are out.  I will try to get you somewhere you feel safe and I will wait it out with you. Fuck everyone else in the room, they can just deal.

Also Please bitch to me about the things that are going wrong in your life.  I don’t care if you think I am worse off, I care about you and I want to be a person you can talk to. 

Believe me, “well that sucks” is exactly what you need to hear sometimes.  I am working my ass off to get better, to stay cheerful, to keep going.  In the morning I start the day with Pink’s Try, because I do just have to get up and try.  Every day.  When it hurts too much I curl up with my mom or dad or cat and I cry.  I am doing everything I can to get better physically and to make it through this mentally.

But I need you guys.  I do.  I just can’t always go to you, call you, make contact with you.  So please continue to love me even as I seem to disappear from your lives.  It’s not my intent to leave you.  I just have a really scary new opponent in my ring and my match is far from over.

I don’t want to live like this.

I have lived with headaches since I was 12.  I learned how to manage them, push them to the background, concentrate on learning and living anyway because it became very clear early on that I didn’t really have a choice.  If I was going to live, it would be with headaches.

These headaches are different.  They have no warning, they come out of nowhere, and they hit me in the face with such force that I can’t use any of my breathing or personal management techniques.  All I can do is curl up, shake, and cry.

I’m afraid to go anywhere alone.  I was grocery shopping the other day when one hit and I had only enough time to check out in the miraculously empty line with only two of the dozens of items I was there to purchase.  Then I left the store and stumbled the block and half home in tears, swaying like a drunk woman.  When I got home I just curled up in a ball in my mom’s lap and sobbed until the headache went away.

It took over twenty minutes.  Twenty minutes of such intense pain felt like a lifetime.  There wasn’t anything I could do, nothing I could take.  I just had to lie there curled up like an animal, reacting like an animal. When it was over I was exhausted, horrified, embarrassed, scared.  Also hugely grateful that I live with my mother, because really no one else’s lap would have done.

I don’t know how to live like this.  I don’t know what kind of life to build.  Is it safe to drive my children anywhere if one of these headaches can strike with no warning at any time? Is it safe to go anywhere with them alone?  What kind of emotional turmoil will I put them through when they are alone with me the first time this happens?  The second.  How about when this becomes normal for mommy? When it’s just “Oh look, everything in our lives has to stop because Mommy has another one of her headaches.”

This is not how I imagined my life would be.  Ever.  I don’t know where to go from here.  I have been trying not to cry for three days.  I am a complete loss.  Sometimes I wish I could jump off a bridge, start a fight with a mama bear, go skydiving without a parachute.  I know it wouldn’t be easier for kids, or my family, or my friends, but let’s face it, it might just be a fuck-ton easier for me. So much easier that I sometimes wish I could forget about my children, my family, my friends.  So much easier that I sometimes dream that I get murdered and wake up relieved.

I won’t jump off a bridge, go skydiving without a parachute, or try to get murdered (though how one tries to get murdered is a little beyond me). I learned long ago that apparently giving up just isn’t within me.  Also, the sunniest parts of my life are the little arms around my neck, the kisses on my cheeks, even the notes they leave me saying “I’m sorry you don’t feel well mommy, I love you.”  Although those notes are a double edged sword, because God why can’t the notes read “Thanks for being Super Woman mommy, you rock!”.   I don’t want to be the mom who teaches her children to care for sick people, because she is always sick herself.  I don’t want to be the mom who knows that she is going to let them down again and again and there is nothing she can do to stop it.  I want to be the mom that somehow manages to make a cake shaped like a teenage mutant ninja turtle, sew ninja turtle costumes for all the guests, and throw a party with a volunteer dressed as Shredder for the kids to defeat.  I want to be the mommy who can volunteer to supervise her daughter’s first boy/girl dance, and can join in taking a martial arts class with her so when that boy gets a little to handsy she can deck him one.

Right now I can’t see a future where I am able to do any of those things.  Right now I see a future where my body, despite my own determination and will, just breaks me without warning any damn time it wants to.

What do I do?