I’m tired…

More Dead Flowers by Bill Gracey

I’m tired of leaving my doctor’s office and coming home to the reality that I’m still going to be in loads of pain all day everyday.

I’m tired of waking up every hour of the night and realizing how much I’m hurting and how hard it will be to fall back asleep like that, only to do it all again in an hour.

I’m tired of finally believing we’ve gotten somewhere with my pain management, only to soon realize that I’m basically where I started.

I’m tired of being given all these fantastic ideas on different types of exercise that can actually help those living in chronic pain, while instead I’m being left in so much pain that I’m not sure how I’m going to make it out of bed at all.

I’m tired of getting up each day and not having the slightest clue how I’m going to make it through the entire day, never mind how I could possibly enjoy doing it.

I’m tired of knowing that someone who doesn’t suffer like I do 24/7 is the one who has the power to make my life more bearable, but doesn’t.

I’m tired of doctors who think that only treating “about 30%” of my pain is enough, when I’m only 20 years old and will have to spend everyday of the rest of my life with it.

And most of all, I’m tired of fighting so hard for so little.

19 thoughts on “I’m tired…

  1. Hi Katie, It is Thanksgiving Day here in America & my thoughts turn to you & how grateful I am that you share your art & your words with us. I too, have Marfans, & am really struggling with pain. If you email me at hopeyingling@hotmail.com I will write to you about my daily routines & the medications I use to help manage my pain everyday. I don’t have all the answers but am willing to share what I’ve learned over the last several years. I know we emailed each other earlier this year, but I lost some people from my contacts list & you were one of them. Hang in there and while suffering with chronic pain is a lonely feeling, please remember, you are not alone.


    • Hi Hope. Happy (late) Thanksgiving! I hope you had a good one.

      Thank you so much for your wonderful words of support. I will be emailing you in just a bit, thanks for being willing to share some of the things you’ve learned with me. I’m always open and willing to learn more. :)


  2. My girl I m so sorry you ve been having such a terrible time.As you re mom it s so hard to see your days like this and not be able to rescue you( it s supposed to be my job dammit!)At least I can give you tons of hugs and hopefully the courage to set your doctor straight.You shouldn t have to use your incredible courage on such basic things.You amaze me everyday and give me the strength to carry on also.I cherish you and wish I would have cooked the physical you as perfect as the heart and soul of you.And sweetie I will go vigilante for you! hope i figured out how to sign as myself instead of anonymous!


  3. Katie – I feel for you. I remember many times uttering the phrase I am sick and tired of being sick and tired. I have no idea how truly you hurt both physically or emotionally. I do want you to know that I am here in your corner. I am here to listen to you and be as supportive as I can while not walking in your shoes. Just know that I care and wish I could take your pain away.


  4. Sigh…. :( im so sorry dear Katie.. Im here for ya 24/7 since i to dont sleep never fear about what hr you ring/txt/skype/fb/twitter LOL Im bound to respond to one of them. So so so sorry. I hate that you live with pain, coming from one to another. I hear ya.


  5. Oh Katie, I’m so sorry. I do hear you – not because I know what it’s like, but because I suffer as a mother for that exact same reason for a child I brought into this world and who speaks your words. I hold you in my heart Katie and I hope that one day soon something will come up to improve this pain and suffering. No one deserve to suffer like this.xo


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