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.

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  • Geenah

    DITTO!!!!! ….Thank You! Love to You Sonja and to All of You!

  • Melissa

    I was nodding and agreeing and then at the end where you said your illness is your child for which there is no baby sitter.

    I’ve said this before. My kidney is my child. I have to think of it first. I can never lay it down for a nap, I can never walk away for a weekend without it. Its always there, and I always have to think about the medicine for it, the insurance, the job I have to hold for the insurance.

  • Andrea

    Wow. Your piece, AND the responses, make me feel comforted and sick at the same time. Why oh why do we all have to suffer like this?….. Nevermind— these illnesses are here, they’re ours, and they’re here to stay, so we have to be strong and get through it. We don’t have a choice, other than to band together like this & get through it together! Thank you, everyone, for all the words of understanding & encouragement—I think we all need it! <3
    Gentle hugs,
    Andrea
    Fibro-survivor (amongst many other things….)

  • Thank you my dear…this site was given me from my step daughter and I will thank her so much…not all of us have completely helpful families..this would be a good read for them all..you hit the nail on the head…so many of us live with these relentless issues….you can put some at bay..least till your body gets use to the drugs again and then “it’s back” …all the comments I read are great learnings…I heard compassion for each other in each one…I saw anger from people that are tired of the pain that has no cure…just ways to cover it up…speaking so that people get use to finish your sentences not really knowing that the reason is the way our battered mind works….not full out strokes that put you in the hospital to cause concern..but every bit as deadly … just no one can tell…. living with pain in your hands that feel like you were torchered with sandpaper…rubbing your hands raw till everything you touch is like hot metal…even the coldest of things. simple things.. making hamburgers from the meat in the refrigerator..cause such pain that we can no longer do it less the meat is warm.. but who can realize that…. we loose hobbies that were once our loves… pretty things we made…delicate things…now…working with anything without the proper meds…impossible…and even they make you “loose” your talent anyway… I bless the people who live their lives pain free… even tho they don’t know what we see or feel… it’s not their fault… no way to share the hell that we have enveloping us from the inside out.and not wishing it on anyone else anyway.. a few friends realizing we aren’t crazy….or hopped on non prescription drugs… our inability to walk a straight line not caused by how many beers we had…just medical issues that slowly drain our pride,embarrass us…but why speak…the tattoos as you said already let them know we are just “strung out” just sometimes we tire of it all.. it’s hard to fight every moment of our lives. mood swings to anger and feeling sorry for ourselves…does anyone…really care…

    yes.. everyone here and living with these “monsters”…those that haven’t heard of this site yet live with these things that are so debilitating…awful…just awful… we can care for each other cause we know… I saw the thought time and time again… all of you have my deepest sympthies cause I live with them too.. I understand as you all do

    I have fibro myalgia…diabetic neuropothy.. and small vessel syndrome.. to mention a few.. any of these a reason to live in hell..did we ask for them….no.. can others prevent their own..maybe…me…this is all I will ever know now.as the rest of you too…but our internal strength we keep going living…it won’t defeat us…ever!
    God bless you all and thank you dear for writing…and the rest of you…just for caring enough to listen

  • LOVED IT….

  • Janet Mainville

    This poem really spoke to me. I can relate on so many levels and it’s nice to know that I’m not alone in how I feel.

  • June

    I hear you….sending you a hug that will not hurt.

  • Mrs. Brown

    This touched me. My wish for you: Peace.

  • Sonja,

    Your post is so true. I can see and feel myself in your article as you speak. How many times I have said and had the same thoughts. Having a double whammy, Lupus and MS, I really understand totally. So many of us are in the same situation. Thank you for sharing. Lots of “spoons” and smile. 🙂

  • baileysmom

    Thanks so much for this poem, I am tired too. I wish you a pain-free day filled with sunshine

  • Jlo

    Ditto! This is exactly how I feel but, can never express it. Kudos!! Too Tired and Brain dead! : )

  • cindy owens

    Thank you for expressing what I go through every day. And oh, yes, the handicapped parking. Screamed at, accused, it’s all been said to me. I’m stubborn and refuse to give in to the scooter, like the 300 lbers. I try to walk – people think I’m drunk when I trip over nothing, and then can’t remember my phone number. I have MS. Need I say more?

  • nikki cook

    you write so beautifully & with such heart&soul,I am thankful you weren’t to tired to write this piece…:& I wasn’t to tired to read it…you are an inspiration to me,as well as others,im sure!!

  • Lara

    you get it.
    sorry you have it.
    here’s to the tender soul spot that you offered us.
    we hear you.
    and we thank you.

  • Jan K

    Boy! Does this describe so accurately how it feels to be a Spoonie. And the unending way that this health stuff sometimes drones on and on and on and…….

    But I do feel extremely grateful on the days that aren’t too bad. Granted, those days are far and few between. But those days do exist.

    Thank you for sharing this.

  • Cindi

    Wonderfully Written,Really Gets to the Heart,It got to mine.My poems on “Crafts & Hobbies” truly Pale by comparison.You are A Very Talented Person.I`d be Happy to Give you my Phone # & address and give you a call & send you a Card.I CARE & Already Prayed for Everyone on this Site Tonight,When I mistakenly thought my pain would`nt keep me up.On a new pain Med not Working.If ya want my Phone # & or addressJust let me know.I din`t want to Intrude,Id like to be a Friend that Calls you! Take Care,Be Safe.Keep Writing & Drawling,The World needs more ARTISTS. fRIENDSHIP,pEACE,gENTLE hUGS,Care,Concern,Understanding,Very Best Wishes & More Prayers for You,Your Family/Friends & Pets. cindi

  • Shawna

    Thank you – this is going with me to yet another doctor’s appointment tomorrow – and hoping it helps him “get it”.

    Gentle hugs…

  • Thank you, Sonja, for putting how I feel into words that anyone could understand, if they wanted to. I have the exact same feelings as you and sometimes I tend to forget that there are other people out there that feel the same things that I do. It’s so hard to explain this to some of my loved ones and I wish they could read this and know that I feel just like this. All the time, not just occasionally. I wish you well and again thank you so much for sharing this with the rest of us.

  • Wendi

    Yep,you nailed it. It seems very therapeutic to vent that that. I’m going to give it a go,I hope you don’t mind.

    I tire of having to choose between cleaning the house or spending time with my daughter because I can’t do both. I tire of missing most of my life and my familys’ lives because I’m too sore,tired,nauseous,anxious,have another migraine,can’t get out of bed, new meds have screwed me up, or I’m depressed.
    I tire of being judged by strangers and even worse by those that are supposed to love me and be supportive. I tire of feeling like a failure because my body has let me down.I tire of morning stiffness that lasts hours/days/weeks/forever. I tire of walking worse than my 99 yr old grandmother because my feet are so sore I can’t stand on them. I tire of odd/painful skin sensations-it feels like my skin is burning on a stove element. I tire of “nap jerks” so violent my husband wakes up. I tire of restless leg syndrome. I tire of food sensitivities that no one can do anything about or even help me figure out. I tire of STUPID, uninformed, doctors that don’t listen. I tire of medical test after test.I tire of all the symptoms that are reported with fibromyalgia-and having almost all of them. I tire of the other disorders/diseases that go with fibromyalgia-and having many of them. I tire of having to constantly explain to co-workers why I feel/look/act the way I do. I tire of the sceptical looks and rolling eyes.I tire of having to justify time off at work. I tire of having to explain what fibromyalgia is… and isn’t. I tire of the uneducated and ignorant that don’t want to be educated but feel they have the right to judge. I tire of the advice,”well if you just tried harder,ate better,exercised more, had more will power or a stronger mind,went to bed, stopped thinking about it so much it would get better.” I tire of people who are healthy thinking they know how it feels or what is F_ _ _ ing best for me!!!!

    It is therapeutic. We should all try it.

    Thank You Sonja

  • I know what it is to be tired too. The subtly varying cadence, the repetition, and the beautiful imagery trapped within the sentence structure describes it to a ‘t’.

    Oh, and your husband loves you so much. I know because he told me ~;)

  • Chris Morgan

    You know how much I love you, for I am quick and certain to tell you often. I want nothing more than to ease your fatigue of all of this. Sending you healing, from my painful brat to yours. Loving you always in all ways. Chris

  • alice Adams

    I am tired of being tried also. I identify with alot of what you are saying! Thanks for sharing!!!! Hope your tom is better than your today! Wish you lots and lots of spoons!!!!!

  • Lori Gonzales

    Sonia,

    That is an absolutely beautiful expression of your feelings, and how exhausting it is to have a chronic, invisible illness. In some strange way it is comforting to hear that there is someone else out there that actually “gets it” Like you I have lost the majority of my “friends” and even people with good intentions go on with their lives, while mine just stands still. There are times when I feel so alone and isolated. I wouldn’t say I’m happy that there are other people out there that are sick like me, but it gives me piece of mind to know that I am not as alone as I feel. Thank you so much for sharing your feelings, and putting into words what has been jumbled in my head for a long time now.

    Good luck to you with your health. Remember that you are not alone, and also that people who can’t handle you at your worst, do not deserve you at your best!

    ~Lori

  • Vicki

    What a beautiful way of putting how we all feel. I really needed to read that this morning. It was very much a struggle to get out of bed and get moving as this past week had been overly busy and a bit short on sleep. I was feeling awfully put out about having to get up and face another day. Thanks!

  • Kathy D

    This says so much that applies to so many of us. Thank you for sharing your wobderful talent with words for so many of us

  • Betty

    This is a beautiful example of what most of us feel each and every day but if I might add to this I am tired of the people who look at me and say “but you look good.” Or the people who give me the evil eye when I park in the handicap spot. Why I wonder doesn’t anyone ever say anthing to the person who gets out of there car weighting 300 lbs and assume they deserve the spot, but because I weigh 125 I don”t?

  • Lisa Zaret

    Thank you for saying what I could not put into words myself!! I am going to share this with my family in hopes of explaining what it is like to be me everyday! Much love and hopes for health, happiness and energy!

  • Michelle

    Amazing….I am as tired and tired of more when you add in caring for my 3 & 7 year old daughters. Thank you for putting this into words for me to believe.

    Warm hugs & spoons to you!

  • Beautifully written. Thank you for using your precious spoons to write this poem. I pray that God will give you peace and comfort and extra spoons to enjoy.

  • Karen

    Thank you for putting how we spoonies feel into words. I pray for a day of even just one extra spoon for all of us.

  • Pearl MacDougall

    Thank you for putting into words what most of us feel in our hearts.

  • such a beautifully true and expressive write!

  • Alonda Roberts

    I have wished for months that I could put all of this into words for my friends and family to understand. I have been in a “flair” for the last two months and unable to get anyone to understand and I am “tired” of explaining. Thank you so much for posting this, but at the same time I am so, so sorry that you have to endure this. It is not fair, but all of us spoonies will do it together. Sending you Gentle HUGS!!!

  • Patricia Huntress

    Did I write this?….I don’t remember writing this? This is almost exactly how I feel. I’m just so tired of being tired. Know you are not alone and even though friends and family may not totally understand, though they say they do…..we do!! The nurse at the doctor’s office last week told me “At least you are able to go to work this year because last you were so much worse.” I could only agree, but that’s all I’m able to do. No going out with friends, nothing but the recliner or bed when I get home. No life. Don’t get me wrong. I’m very grateful to be able to do what I do, but yes, I’m tired of being tired and not being able to do anything more than the necessary and sometimes not even that. Anyone have some extra spoons?

  • Thank you for this. Many, many hugs to you.

  • Christina M

    As a mother and someone who suffers from an invisible illness, I would never refer to this as a child. I agree with everything else you wrote, but with all the needs for attention a child brings great joy. I haven’t had a single day of joy with these illnesses. It’s a parasite and I’m the host….it has stolen my life and continues to do so. My children are my only saving grace.

  • spoken as only a true sojourner of pain can. god bless you, and give you rest.

  • Deborah Brent

    I feel your tiredness. Here’s a gentle hug for a better day [[[ ]]].

  • Thank you for this brilliant work.

    It feels good to read it and know I’m not alone in resenting the expense of that unseen, unpleasant other, the dependent who never gives you peace. I don’t see it as a child though. More like having to support and live with an elderly abuser who will not let anything rest or give a moment’s peace. No one so rewarding as any real child would be.

  • Cried…..hit home with me

  • JUDY

    SONJA-MAY I SAY WOW! YOU HIT THE NAIL ON THE HEAD! THAT’S HOW I FEEL ALL THE TIME! MANY THANX FOR PUTTING INTO WORDS THE FEELINGS I HAVE, BUT DON’T KNOW HOW TO ‘POLITELY EXPRESS. MANY,MANY HUGS TO YOU! GOD BLESS! JUDY

  • Tubagurl

    What an accurate piece! I’m 43, living a semi-retired “Alternative” look. My boots are too hard to put on, forget fastening jeans or cool clothes with hooks and ties. Makeup? Well, eyeliner is still easy to put on, smudgy and smeared! Sometimes I can’t brush my hair and it looks a little punky, but my husband takes care of that. The looks people give me when I pull into a handicap parking place with Apoptygma Bezerk blaring, is priceless! As everyone before me said, “Thank you!” for this piece!

  • Charley

    Wow, this so sums up for me how I’ve been feeling lately, JUST TIRED. Struggling to get to sleep, struggling to get out of bed. Thank you for you words and I WISH you less tired times. But we know how that is…winkwink!

  • Sharon Antes

    I wish all of us a day without pain today……I have felt your words so many times but never wrote them down. You wrote what a lot of us feel on so many days…..Take good care and Thank you!

  • Apryl Lightcap

    Thank you. Thank you. Commiseration on every level. Read on a day when the thought of writing is scary – you gave the words. Thank you.

  • you sum it up very well,made me cry but thank you very much is amazingly beautiful and so are you xxxx

  • Wishing for one big magic cure for all of us who suffer in ways big and small, but especially for you. Your life has been robbed of so much. Big hugs to you.

  • Dee

    I’m tired too. Thank you for putting my feelings into words. I feel that only my beloved spoonies understand.
    Be blessed,
    See
    Dee

  • Love this, I can so relate *hugs*

  • Beautiful, beautiful write!

    I am going to share this for sure!

    *hugs*

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