Poetry: I Didn’t Know…

 

I didn’t know back then that life would change forever. I didn’t know what pain was then. I didn’t know the sacrifices and allowances I would end up making. I didn’t know my hair could hurt. I didn’t know that I would have to give up the things that brought me the most joy because I just couldn’t do them any more. I didn’t know how my limits would change from one day to the next. I didn’t know I’d have to fight so hard for what I need.

I didn’t know I could be okay with wearing socks that don’t match. I didn’t know I could cry beyond the point of tears. I didn’t know how strong I could be until I was forced to be. I didn’t know I could live for weeks on applesauce and Sprite. I didn’t know I could get lost in Target. I didn’t know I could crack a joke and laugh in the worst of situations because I just couldn’t cry anymore.

I didn’t know I could lose what felt like everything and still feel as though I had everything I need. I didn’t know I could keep going past the end of my rope. I didn’t know that when I felt the most alone and exhausted, someone, somewhere would inspire me to fight one more time. I didn’t know I could sleep 20 hours and still be tired. I didn’t know I could fall asleep anywhere. I also didn’t know I’d regret it when I woke up.

I didn’t know that nothing beats stupid comedies or veggie tales on a bad day. I didn’t know just how much pain I could stand. I didn’t know how desperate I would feel sometimes. I didn’t know how much I’d have to learn. I didn’t know how much I’d have to advocate for myself because there was no one else to fight for me. I didn’t know how good fuzzy socks feel.

I didn’t know I could love God and hate Him at the same time. I didn’t know sometimes prayer would be all I’d have. I didn’t know some of my best friends would be people I’d never met. I didn’t know that I wasn’t alone. I didn’t know doctors could be wrong. I didn’t know that there were others going through this. I didn’t know there was support.

I’d say I wish someone had told me all of these things back then, but I do know I wouldn’t have believed them.

 

Article written by Staff Writer, Agnes Reis

 

Agnes is a nursing student in Minnesota. She was diagnosed with CFIDs in 1999 followed by fibromyalgia the following year, along with lifelong allergies, asthma and migraines. She can be found at brigid22.wordpress.com or @brigid22 on twitter, but cautions twitter followers that there’s a heavy dose of sports and nursing along with the spoons.

©2019butyoudontlooksick.com
  • Cheyenne Snodgrass

    This is beautiful and so real! I’m trying to show my parents what having fibromyalgia means as well as a few other conditions, but they don’t seem to understand. This is definitely something that will help.

  • Courtnee Swanson

    I joined this site because of your poem it made me cry as I read it . Thank you for helping me to not feel alone

  • Connie L

    That said it exactly. Thank you.

  • Natalie

    okay, how did you jump inside my head and express so many of my own feeling. Thank you for putting into word what I have trouble expressing myself.
    Natalie.

  • cassie stribling

    omg, i’m sure you’ve been told this over and over again, i thought i had written this myself. i’m 47 and was diag in 04, i also have seizures. i’m putting together a video, almost done, i wanted your permission to add this as the opening of the film, i would of course give credit to you on this piece, again with your permission. and as any of us suffering from this disease knows, the louder we bark the more attention well get. you can email me at…[email protected] or on facebook cassie collins stribling. looking forward to hearing from u…..

  • Very beautiful poem indeed. In our childhood days, we are really so innocent. There are so many secrets of nature which we don’t understand. That innocence looks very cute also. As we grow big, we face many problems and learn the ways of life. I also many a times miss that innocence that I had in my childhood.

  • sandy

    Wow! Incredible. I’m personally glad I didn’t know then what I know now…I don’t think I would’ve had the courage to face it. Today I take it one day at a time and it is bearable only because tomorrow MIGHT be different. When I lose focus of this hope it all falls apart. Thank you for sharing and reminding us all of the great things we have…like our favorite fuzzy socks!

  • Nadine

    that was amazing and so very beautiful thank you for sharing that with everyone it means a lot to just me and judging from the comments below to a lot more people as well…ps I LOVE to wear mis-matched socks ALL the time 🙂

  • kath laidlaw

    me to but we all have one big problem the people who need to read this will never see it  .The people who look at you and say BUT THERE IS NOTHING RONG WITH YOU YOU LOOK FINE TO ME . The people who say All you need to do is get a job . well basicly the narow minded people out there . I have a few wishes most i will not say as you all have the same ones but one is for all them people to have are pain for just one day to just see for that one day the curege it takes to just get out of bed in the morning let alone look after a family and a house and work ontop of that

  • Ann Reynolds

    I saw part of this and thought I had written it. My food was spaghetti and Pepsi every day for probably at least two years. I have had those awful migraine headaches since I was a teen and fibromyalgia as well. Most of the same things you speak of but I have an autoimmune disease and arthritis . My life has been limited but I just keep finding ways around those disabilities. I wish to tell you I think you are so full of courage to write about these experiences. I know it isn’t easy and many don’t understand what you go through . I’ve had some say I don’t know how you stand it, but I find that to be a chuckle, because I have no other choice. When people ask how I’m doing I say good, great, or something like that I really don’t want to feel the body and e perie ce it’s pain if I say something positive, I usually work up into feeling that way, and it is worth trying. Thank you for sharing this story of hope. Many will find out they have a diognosis this year and giving hope is the , but a story like this one can keep them moving. God bless you and your efforts to keep inspiring others with your dynamic spirit.
    Ann
    Ar<3

  • Only those that have lost everything, could really understand what it is like. When I read this, I know that it is part of the pathway, and I except it. God wants to be first, love the giver, more than the gift. Ar<3

  • Lesa Cunningham

    As all have stated their own personal gratitude for you taking the time to put our thoughts into words. I, too, appreciate your talent, compassion and thoughtfulness for expressing my heart. I live with RSD/CRPS – one of the most painful diseases out there and learning to live with a disease that has no cure, no end, no treatment is very hard to describe to anyone, so thank you again for putting our pain and emotions into words. God Bless, Lesa Cunningham

  • Tabitha

    You took the words right out of my mouth!! And now I am sitting her singing “the bunny the bunny woahh I ate the bunny!!” haha nothing like veggie tales to cheer me up!!

  • thank you so much for putting all our feelings and thought s into words!

  • Jenifer

    I didn’t know someone else felt exactly the same way as I do! I have FMS and CFS and this pretty much sums up my story also. Thank you, Jenifer B.

  • Chris

    I couldn’t agree more, Agnes. Thank you for saying something that I’ve had trouble putting into words. Unless others have walked in our shoes, they don’t understand how this condition affects everything and is unpredictable. What a blessing to read this… I cried too!!

  • Tracey

    I cried too, I forget there are some people out there who do understand, just not the people we need too! Lovely writing.

  • I think you looked over the shoulder of me at 3 am one of my nights and saw into my heart and mind. How better this could have been said is beyond me,

  • I loved reading this poem. It is always interesting to be able to relate to someone when you feel alone. Thanks for sharing! I get a lot of satisfaction from writing how I feel!

  • Gracie

    it actually made me cry, its like you read my mind… I wish people that aren’t going through this could understand what we are going through.

  • Michelle c

    Hi thanks so much for writing this poem…and being the other spoonie whos hair hurt sooooo much thank you for your thoughts, love and hugs

  • Janice

    Oh God, this is how I feel everyday. Thanks for sharing and giving word to what people with chronic pain live. I was diagnosed with fibromyalgia shortly after a car accident, and I don’t know what else to do, what else to try, meds, physical therapy, massage, chiropractor, anestesiologist…nothing helps. At this moment, praying is my only hope and what gives me strenght to get up when I don’t want to. Blessings to you.

  • Sharon

    You are so right and to the point on everything, especially your last line,”I would not have believed them”…And the fuzzy socks, Oh Yes! I love you for putting it all down in a way others can “feel”.

  • Ann

    This is so incredibly right on. A friend told me once: “Ann, don’t expect people to understand, they can’t.”

    People on this site do understand, & there is a comfort in that.

    Blessings to every single one of you.

  • Iris

    Thank you for writing such a moving article. You express so well ,just how so many of us feel. It is good to know there are others who truly understand what our chronic illnesses are all about and that we are not alone in our thoughts and feelings. This website has helped me find strength to endure very painful, difficult days and hope for brighter days Thanks spoonie friends!

  • JUDY

    BRIGID-MANY THANX FOR EXPRESSING HOW A LOT OF US FEEL ABOUT OUR INVISIBLE ILLNESSES. I, TOO, DID NOT KNOW HOW MUCH PAIN I COULD ENDURE OR THAT I COULD BE UP ONE DAY, AND IN THE DEPTHS OF DESPAIR THE NEXT. AWESOME POST! GOD BLESS! JUDY

  • Carolyn M Vella.

    Oh, thank you so very much for writing what we all feel. I wish we did not have to feel this way but look what we have learned.

  • Alisha

    I absolutely love this. It really says just about everything we need to, but usually can’t say. Thank you much!

  • Agnes,
    Thank you for writing this very true and relatable article. I guess I have said so many of those famous words too,” I didn’t know…” Your words are very powerful. Great job, continue to let us “know.” May you have many “spoons” and be well.
    🙂

  • Kelly

    You’re a beautiful writer, I hope it makes you feel better to know that you’re not alone. <3

  • Rinjii

    Everything you wrote is exactly how I feel. I never knew so many things about the world, the medical professional, myself and my family and friends before I become chronically ill. Even though it’s incredibly difficult and there is a lot to mourn, there is also humor and joy and friendship and love and support and prayer.

    Beautifully written.

  • Well said. So true about the prayer thing and everything else. So right on the target for many of us living with chronic illness(s). I also liked Becky’s comment. i think alot of us were in the fast lane before all of this. For me, i didn’t want to slow down at a young age, but your comment made me think a bit about the bigger picture.
    Thanks

  • Karen

    Thank you for putting into words what we all feel on a regular basis

  • Kayla

    Love this!

  • Suzanne Spoonemore

    It amazes me how I can come to this page n you guys always explain me, my daily life, and the way that this illness has debilited me so. I love all you guys, AND JUST WANT TO SAY “tHANK YOU”!

  • Amy

    Veggie Tales and fuzzy socks- now that’s perfect comfort.
    Thanks for sharing this. Very well put.

  • Evie Kolbeck

    Wow!!! What a powerful message. My husband has MS, Fibromyalgia, other chronic pain and is developing more and more severe allergies. I am his caregiver — this poem fits the way that BOTH of us feel. Thank You so much for sharing!

  • Michelle

    oh….except for the sock thing….hee hee I still have to match 🙂

  • Michelle

    OMG……I have felt and thought these things every day!!! you have a gift of words and I thank you for sharing them with us!

  • Becky Bailey

    Beautifully written, you took the words right out of my mouth, all these diseases have taught me compassion however, something I didn’t know I had before, to the extent I do now, and they have taught my children at a very young age compassion, I’ve suffered a lot, learned a lot, and despite the nightmare I live in, I am thankful for those lessons, for the simple things in life, I think it’s true sometimes when God closes a door, he opens a window. It makes you slow down, because you have no choice and embrace all the simple moments and be so happy for them. I spent my life before becoming ill on the fast track, working 60-80 hours a week, letting my life pass me by, because I was always working. Now I can’t work, I wish I could, just not as much, but this has all forced me to look at my priorities, enjoy the little things in life, and has allowed me to be much more in touch with those that I hold dear, that are now taking care of me, it has taught me, love, support, compassion, and most of all it has taught me it is OK to ask for help and not to do it all myself. It’s a life changer, but I believe God has a plan and his was for me to slow down and smell the roses, I could do without the pain and the sickness but hey, you can’t have everything, right?

  • *hugs* Thank you for sharing, you wrote about yourself but so many of us can relate.

  • Dorie B

    Pain is a teacher I often wish I hadn’t met. The lessons can’t be unlearned.

    Yes, I need to pray and meditate more. And dust off Rack, Shack and Bennie.

  • Ann

    I thought I was the only one who wore mismatched socks!:)

  • *hugs*

    Thank you for writing this 🙂