Category Archives: despair

Measuring life in hours…

It’s been a while since I posted about chronic pain primarily because I still feel like a whiner even on my own blog, somehow. I’m blaming German stick-to-it-ed-ness and the fact that my grandparents lived through the depression as farmers in the Dust Bowl and probably ate pickled tumbleweeds without complaint. They were the boss.

I have a new medication. It gives me about three hours of low pain twice a day. This is good news. I now have six hours a day where I can be productive in a way I haven’t been in a while. There are some side effects. I can’t concentrate very well and I get super tired. I forget things and get flustered and double book and am generally not the best friend in the world to anyone. However, I get six hours where I can crochet, or read, or do chores, or play with the kids. Six hours when I can see movies or friends.

I am not sure when I began measuring my life in hours. I suspect it started after Michigan when I first got medication that gave me some relief. All I do know is I now think of my days in terms of how many low pain hours I can get. Do I schedule a movie? A party? Dinner with a friend?

I am blessed to have these hours. I have far more hours now than I used to. I am also sad I don’t have more hours and envious of those who do. You healthy people with your bodies who don’t prevent you from being anything you dream of. You people who can be at parties all night, see any movie you want, go to a rock concert or night club. Your vibrant lives flash before me and make my previous self cry out in recognition and despair.

I miss you! She says. I used to be like you! I want to be like you again! 

You don’t measure your life in hours. You may not even measure it at all. I know I didn’t used to. I had the luxury of a limitless existence with nothing but my own ingenuity to stop me. Now I struggle to carve out a happy existence in a world increasingly defined by limitations.

I envy the freedom of your limitless hours even while I am happy you have them.




I’m so very tired. The only time I don’t have a headache is when I have had too much to drink. Even my sleep is invaded by the invisible drum chorus in my head, pounding endlessly like waves upon the shore, eroding my strength and forebearance.

There is no where to share my despair. All the compassion has been spent, I have exceeded my allowance.

This is never going to end.

This is never going to end and I am trapped inside it, alone.

I want to give up, to give in. To tell the pain it has won and just slide into its throbbing darkness. I want to sleep and never again battle the waking hour, never again force myself to rise and walk when each breath, each step, resonates in my head in an unending rhythm.

I want to wave the white flag and let my consciousness succumb to the overwhelming clashing of blood and vessel in my brain. I want to blithely sleep while the vessels constrict and gorge, over and over, the rhythm of my foolish heart playing it’s swan song for an audience of one.

I want to release it, vent it, let it go.

I want this to end.

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?

Life by candlelight.

It wakes up before I do, wresting me from unconsciousness with a thick unstoppable thumping.  I feel the fearsome pounding knocking at my dreams, pulling me from sleep with it’s tenacious teeth. Before my eyes even open I know the world will be too bright, too loud, too much.

Once awake I have to convince myself to move.  I know I will probably end up vomiting before I am even dressed as the act of sitting up causes waves of nausea to shoot through me.  I climb out of bed and stumble towards the bathroom, wishing I could teleport, fly, or maybe even sleep forever.

The light burns in my eyes as my stomach heaves from the motion.  I struggle through teeth brushing, a hot shower, and the donning of clothes.  The act of getting up has exhausted me.  I nearly convince myself to go back to bed.

If I am lucky, I will get better enough to move about the world in dark glasses. If not, it will be me in my room with an oil lamp on.  The stronger my headaches get, the more often I resort to candlelight to make it through my day.  The soft flickering glow caresses my fragile eyes instead of piercing them.  I have learned to read by candlelight, write by candlelight, crochet by candlelight.  I mute my screen to nearly black to work and write on the computer.

I have tried so many things, medications, therapies, treatments.  None have worked.  At this point I wonder if I will forever have to live my life by candlelight.