Poetry: Tired

 

I tire of my body. I tire of my pain. I tire of the whirlwind scraping the walls of my skull. I tire of the weeping willow cracking and sprouting within thine eyes. I tire of courage. I tire of strength. I tire of personal earthquakes that make morning coffee a joke! I tire of cramping: calf, thigh, colon, uterine, thumb or otherwise. I tire of the pills, pills, the mountain of pills.

I tire of saying,” Let’s see how many spoons I have left tomorrow before I commit to any plans”. I tire of the stares as I role along , mohawked in the handiCRAP motor carts of the stores. I tire of doctors, nurses, interns, psychiatrists, plumbers, housewives, dog-walkers, & neighbors thinking I’m on drugs. In fact, I tire of being on prescription drugs just NOT the ones society ASSumes. I tire of my tattoos solidifying their judgments.

I tire of friends walking away. I tire of hearing,” I tried, but I just can’t handle you on_________(insert medication here)” “You’re just too much of a downer.” “You make me physically sick when you talk about the **** that is your life”, “It’s just too much to look at you after coma. It’s all I see now and it’s simply too hard.” I tire of reaching out and hearing the phone click dead. (oops, must’ve dropped you; DAYS ago) because THEY can’t handle MY suffering. I tire of hearing,” Don’t talk like that, you have to stay more positive!” when discussing logic in regards to my illness.

Likewise I tire of getting my rare visitors all on the same day, then nothing for weeks on end. I tire of the silent song of my cell phone. She sings so quietly, I need not even carry her. I tire of being the reliable friend & counselor of use only in what I can do to help others, I tire of wondering where they are when I need them.

I tire of being ” Of No Consequence”. I tire of art being my daytime companion until my husband or my mother check in. I tire of needing to “take a break” when out and about. I tire of being the victim. I tire of being the survivor. I tire of the morning migraines the I affectionately refer to as,” Nothing like an aneurism first thing in the morning.” I tire of all the medical equipment. I tire of my (un)health(y) journal.

I tire of not being able to drive, shop, dance, jump rope, ride a motorcycle, roller skate, wrench on hot rods, & go in a mosh pit. I tire of feeling 80 at 38. I tire of the bad news my doctors bestow. I tire of staring at the contents of my hope chest. I tire of hospital bills. I tire of stressing my loved ones out.

I tire of injections to make me “better” that end up getting me 5150’d due to an adverse reaction. I tire of the hot flashes, night terrors, flashbacks, fear, sweats, hopelessness & bad thoughts. I tire of being trapped in my mind and caged by my body. It’s a horrid place to live…

Tired. Tired like an overworked mother.

My disease is my child. Always tugging on my shirt sleeve. Constantly screaming for attention. Absorbing my time. Only this is a child I CAN NOT hire a sitter for so I can go out and have a time of it. My version of a “babysitter” comes in the form of opiates. Yes this can get me out of the house, but my communications with the populous are hazy and lazy. Too long to think up a response and even longer to ATTEMPT to get the words past the tip of my tongue.

I’m tired of being a mother to illness. Tired of needing spoons.

 

Written by staff writer, Sonja McDaniel

 

Sonja is a 38 year old female with an autoimmune issue undiagnosed for 13 years. Living in the SF Bay Area surrounded by a wonderful husband, a mom and all of our rescued critters. She is living proof that you can’t judge a book by it’s cover! Sonja is a self-described punk looking, art making, book reading freak! She goes by sacredjinx on our butyoudontlooksick.com message boards.

©2017butyoudontlooksick.com
  • I COMPLETELY UNDERSTAND!!!!! Im 27yrs old covered in tattoos gauged ears piercings like a MOFO 🙁 cant play my guitar right anymore…. diagnosed with M.S 10yrs ago …..

  • springdarlene

    I feel like that is all I say anymore, ” I’m tired ” but I just am and you put it so eloquently that it makes sense and explains how I feel from deep down into my soul…….

    Thank you,

    I have one pet peeve, when you are talking to ” healthy ” people and they tell you of their day and complain that they just couldn’t call you because they were just so tired…..come to my world and see what the word truly means…..as you can see from the time line, I had been in bed and asleep for a good 3 hours and am now awake since 11:00 pm and have not clue when I will be tired again but I still have to get up in the morning and function in the ” normal ” world , like a normal person….

    I have been sleep deprived for 10 years and my memory is so nonexistent , I am ashamed and people now just think that I am avoiding doing whatever I forgot to do with them.

    I wish I could write like you do and explain everything so people could understand better but that is why I keep coming here….

  • sandy

    Love it! Hits home.

  • Nadine

    thank you for sharing that….it was beautiful

  • Tempella

    I see where she’s coming from but truth is most don’t want to understand unless they’ve been through it. I don’t waste my time trying to justify myself in any way to anyone about anything- it’s not worth the time & trouble & most really don’t care!

  • Christine Barnette

    This is a very poetic discription of how most of us feel, most of the time living with a chronic disease.

  • Amazing!!! I shared this on Facebook.  I am trying to explain my recent diagnosis of SLE Lupus to family and friends.  I was diagnosed just three weeks before my 40th birthday.  Everyone likes to say, you need to get up and do more, get out of the house you will feel better.  But going out makes me feel worse and triggers a flare. I hope they read this and understand a little more. 

  • Sonja, I can relate to your words so much. I have had so many people walk away from me because they ‘can’t handle’ me when I am sick. But I’m always sick, I have MS, there’s no cure, no solution, no pill I can pop to put on a happy face and be chipper for everyone else. People have even had the gall to tell me I just need to practice smiling more and not let ‘it’ get me down. ‘It’ is constant pain, weakness, exhaustion and fear- watching my body betray me. I get so angry sometimes I feel I can’t breathe.

    Thank you for sharing your words, I feel so much less alone after reading them. I’m wishing more spoons reach you soon.

  • Maureen

    Sonja, I can relate and so feel your pain and exhaustion. I wish you peace of mind and body! I wish you many extra spoons for your long days!

  • Springdot

    Sonja – I’m sending you a (gentle) hug. Your writing is very moving. May you get more spoons soon xx

  • Rachel

    @Amy: I am sitting here CRYING…THANK YOU!!! THANK YOU!!! As a 21-year-old who has CP, hydrocephalus, Chiari malformation, RA, epilepsy, and migraines…I am SICK of hearing older adults say that “you’ll know pain when you’re older”…”the pain you feel now is nothing compared to what you’ll feel in 50 years”…

    I have had over 8 brain surgeries from late January-mid-March for an infection that almost TOOK MY LIFE (and 2 more, previously). I work in retail, which means I am on my feet daily–not a picnic on days when the RA is bad. I have NO short-term memory anymore because of my surgeries. (That’s another one–“you’re not old enough to have senior moments!” HA. HA.)

    When I am hospitalized, morphine–in any dosage–is the equivalent of a placebo as far as effectiveness goes. It used to work but I’ve since built up a tolerance. I take Dilaudid now.

    Who says I don’t know pain?

  • Amy

    My husband & I agree. My son agrees; he is tired also of people who act like his parents are lazy fat slobs who should “get a life.”

    Personally, my faith is a big help, but there are more than enough times when I wonder where God is in all this, & I echo the times Job said he wished he’d never been born as he listened to people tell him he must be secretly doing evil things or God wouldn’t punish him. SATAN punished him. God allowed it, I think because in the life of every human being, at some time, whether briefly or for ages, we will either experience this or know someone who does.

    It’s not a whole lot of help sometimes, but it is better than nothing.

    I am tired of one more thing: Old people who think young people can’t possibly be sick & who extend their old-person-to-old-person “I’m sicker than you are, nanny nanny boo boo” contests to the 10th or higher power on anyone under 65 – the younger you are, the worse it gets; I’ve seen them victimize 5 year old juvenile rheumatoid arthritis patients who are wheelchair bound! I encourage all people to defend young people from these attacks. It’s bad enough they started ragging on me when I first got sick in my mid 30s, & that they’re still doing it as I approach age 59. That’s way too long. Kids who get sick before they even go to school get crapped on for way longer. Even if you’re sick & fighting this, remember those younger than you & give ’em an earful for the kids & teens who are sick with chronic illnesses that these negative geezers can’t even begin to comprehend.

    I’m a nurse; I know how sick old people get; I’ve been a caregiver as a kid & as an adult. But they are NOT the only sick ones.

  • Sometimes the only way to express what we feel is through poetry. ~ Peter