Letting The World Turn Without You…

 

The hardest lesson I’ve had to learn in living with chronic illnesss is that I can’t do it all. I’m a overachiever by nature. I want to do it all, have it all, see it all, be the girl who never says no. Letting people down, and of course, myself down, was the horror that I feared more than anything.

Of course, as we all know, trying to do it all and be everything are pretty unrealistic expectations for a healthy person, let alone one one with chronic illness. Not that that stops anyone. In fact, it took a concussion to slow me down.

Not right away, of course. It’d be far to easy if I were to just learn the lesson life was trying to teach me just like that. If I’d have just stopped in the beginning when I first needed to, maybe I wouldn’t be in the boat I’m in now.

But, no. I couldn’t let go of anything. I had to keep going at my hectic pace, taking care of everyone and everything, doing it all. I am the classic overachiever, after all. No matter how sick I got, I couldn’t let go. I couldn’t say no. It took 9 months of hell and finally, activity restrictions, before I slowed down.

Even with the doctor’s orders, it was still a struggle to say no, to step back and have others do it on their own. What if things went wrong? What if they blamed me for not helping? And like so many times, it was song lyrics that spoke to me, this time from “Jesus Christ, Superstar.” “Let the world turn without you tonight. If we try we’ll get by,so forget all about us tonight.”

And it clicked. I didn’t have to be responsible for keeping the world turning. If everyone tried, they would get by. I didn’t have to forget about them, but I could take a step back, I could watch from the sidelines. I could learn to trust people and that they could do things on their own. I could learn to let the world turn without me.

I’m not saying I’m perfect at it. It’s still hard for me to sit on the sidelines and watch instead of be the one leading the charge. But it’s been a learning and growing experience. The more I slow down, the more I am able to experience; it’s just from a different side of the coin this time. I’ve learned to pick and choose what I really want and trust others with the rest. If we all work together, we can keep the world turning.

 

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
  • Andrea Uribe

    I’m sorry, I don’t speak english very well.
    In the Beatles’s song “Hey, Jude”, there’s a part that say: “Don’t curry the world upon your shoulders”. It’s a great help for me.

  • Nancy

    I have Partial Complex Seizures and at 59 am now retired.  I live on disability and 1/2 of my sweetheart’s social security as he passed away 3 1/2 yrs. ago.  I would love to have a part time job, but I lose my jobs constantly, due to what I call “Silent Discrimination”.  So I share your loneliness and depression.  I can’t even be a “normal” grandma, as I can’t pick-up my grandchildren, take them to the park, go shopping, go out for ice cream, stay with them for the night, so as they get older, I’m just “a relative”.  It’s sad to hear about your chronic conditions, I get angry and frustrated also, as I too am one that wants to “fix” it all.  So I am doing my best to let go and let God be in control of my life.  I hate to say it, but I’m glad I came across this website, as it reminds you that you are not alone, there are people out there, with so many debilitating conditions.  Many of which are much worse than mine.  I pray we can all connect, and instead of being depressed look to each other for words of encouragement and what we can do to find joy in each and every day.  I know I have much to be thankful for and need to focus more on that than on myself.  Thanks for listening to me.

    Nancy

  • wendi

    I share most of your physical ills; today I found out that my hypothyroidism lumps are probably not cancer–but i have to go in every 3 months to check. I was disappointed. I was hoping for cancer, something to get me out of this. I don’t think I can spent the next 20 years like this, watching myself grow increasingly lonely, depressed, an unable to do all the things I used to. Kids are grown & gone (my son initially left because he said I made him depressed); husband tolerates me, but he resents having to do the things he never knew I did! I pretend in front of them that I’m fine, but of course I’m not. Have any of you ever felt this desperate?

  • Diane

    I was super-mom to my kids and their friends, and though I’ve been sick for almost 35 years I still had to do it all; keep the house clean, care for the kids, cook, shop, school activities and meetings, on and on ad nauseum. I don’t look sick, so nobody understood when I had to leave the kid’s school play because the perfume many of the women in the room were wearing was making me sick. I couldn’t just sell Avon to my friends, neighbors, and family; I had to turn it into a huge Christmas fundraiser for the school my kids went to. I had to host the huge family holiday dinners at my house, always pushing, pushing, pushing. Finally my body rebelled and said ‘SIT DOWN!’ It has taken a long time to learn my limitations and to say no when I need to. I’ve had to learn to ask for help and let things be, rather than going behind and ‘fixing’ what someone had done differently than I did it. Several years ago I found the Flylady system for getting things done, and one of her quotes hit me right between the eyes. ‘Even housework done incorrectly still blesses the family.’ Now I don’t fret as much. If someone does something so I don’t have to, I let them do it their way and appreciate it. Thanks for sharing.

  • Tana

    This brought tears to my eyes. I too have always been an overachiever and caregiver, giving my all to my kids, family and friends. Until 6 yrs ago, I still trudged on pushing past my limits until the last few years. Now I struggle, most days I have no spoons, of course I don’t have many to start with either. No one really seems to understand. I have been judged by many as lazy and just trying to be waited upon…even sadder is that I don’t have help, or anyone I can voice my struggles to and really hear, understand and just be there without judgement.

    While help would be nice on occasion, I would feel like a burden anyway so not a huge big deal. But having empathy, an ear and understanding would be awesome!

    I ache for you as I know what it is like to “let the world turn without you” I have learned to accept it, but it seems when I finally feel I know my limits and accept it many jump up to run me down and I start pushing myself ever harder again which only makes my invisible illnesses worse. Though I wish you did not have these struggles, it helps knowing there are others going through what I am. Thanks for sharing! {{{HUGS}}}

    God’s Blessings!

  • It’s a horrible feeling seeing people do what you want to do with your life. The pain is overwhelming both physically and emotionally. Looking at pictures of people making memories with no physical limitations is the hardest for me.

  • Melody Ream

    I need help. The three toughest words that I still struggle with saying even when every fiber of my body is screaming to stop and let someone else take over.

    Thank you for sharing what so many of us have experienced or need to learn. The earth will still go on without “me” being in charge of my little world.

  • Jacque

    Thanks for the message. While I’m not new to disease and illness, I am new at the chronic illness and all that involves. I can no longer work but need the income, I can no longer be around my family but miss their hugs and laughter. I can no longer be the person I was and will never be. Your messages help. Thanks

  • Christina

    Thank you!

  • Judee Hill

    I could have written this myself word for word. Thanks for sharing.

    I now only hope to help others by learning from my experience and possibly to convince them to know when to ask for help. I waited too long, but mainly because I was too ill to know who to ask at the appropriate time.

    I not really sorry for all I have done, but should have learned earlier to pace myself & slow down gradually, rather than be knocked down.

    My brain tells me I can do it, but my body speaks up quickly to correct that notion! ;=)

  • Linda

    What wonderful words of wisdom from such courageous women. I hope you all realize how strong each of you are and how special you become with your words of wisdom. We all learn bravery with chronic illness and oh how humble we all become.

  • Sherylee Harper

    I fought like Hell to stay on my job for 3 years; doing, running, data input, filing, meetings, etc. It was like I had thick mush in my brain and I was trying to run in Loon-Shit (http://www.trackshare.com/forum/showthread.php?p=448356)(http://www.trailpeak.com/trail-Drumheller-MTB-intown-rides-near-Drumheller-AB-5980) and sinking slowly. I was exhausted all the time, my work deteriorating to the point it had to be edited and scanned by co-workers. I did not want to let go. I needed the socialization, the paycheque, the interaction with other human beings and I was scared to loose it. Finally after months of short term illnesses, working, then sick again and a drug reaction I let it go. I threw it away and I felt such overwhelming lightness, freedom and relief after I accepted I was not the be all end all. It took months of sleeping when ever I felt like it, laying around, seeing doctors numerous times, changes of drugs and eventually getting ‘disability status’ and pensions.

    Agnes Reis, thank you for putting it all together. The way you have expressed this sadly common occurrence is dead bang on! Thank you.

  • Zebra Princess H-EDS

    Agnes, I could have written almost the same piece. I, too, was the perfectionist overachiever that couldn’t say “no!”. I don’t remember when I discovered that the world truly could go on without me. It probably was while I was recovering from one of 34 surgeries to date. Outside of my sphere of influence, very few people know what I go through on any given day. And yes, I must pick and choose what I want to be involved with. Thankfully, my biggest supporter is my DH. He’s been there for me for almost 26 years now. I am truly blessed in that aspect. Thank you for writing such a wonderful article.

  • What a great article, Agnes. I also am an overachiever. I was the one to take care of it all. Do it all and fix it all. With Lupus and MS plus many other side illnesses I did have to learn to let other people help me. It is very, very hard. Especially if you are a control freak (like me). I still do more than I should, but I feel that if I don’t keep up, I will get more ill and weaker. Sometimes I feel that the things that we achievers do are incentives to keep us going in mind and body. I have learned to pace myself in order to get things done that I want to do. So, thanks for sharing your story, I’m sure it has helped many people understand what it means to have a chronic illness and give up some independence with the help of family and friends. May you have many “spoons” in your life. 🙂

  • lara

    Back in the day, before chronic illness, with my last pregnancy I was confined to bed at the 6 month point.
    With 3 children already, my husband gallantly stepped up to the plate and I laid in bed.
    I remember one moment that had the same ring of clarity. He was crouched down, sweeping the carpet with a broom and dust bin, and I waddled up behind on the way to my bed from the fridge and said, “It would work better if you used a vacuum.”

    I’ll never forget the look on his face as he gazed up over his shoulder at my towering girth. One of sarcasm laced with futility topped with defeat.

    At that moment, I realized that it didn’t matter how it got accomplished. His way, my way, or the highway; whatever way it would be fine.

    It opened a door for such serenity for me. I now longer had to worry if things weren’t perfect. Harmony was more important. Yielding to rest and avoiding pre-term labor was paramount. Not whether or not all the dishes were put away where any sane person would be able to find them ever again.

    That life lesson prepared me for my predicament now-life sans spoons. Pacing my self, letting things go, appreciating help, spending time with family instead of fretting over housework….it all adds up to life is short, we can’t control it, we are not perfect and weren’t meant to be.
    Do what you can do the best way you know how, and be content with that.
    thank you for helping to remind me of that story!
    la

  • Louise

    Agnes thank you for writing so eloquently. I too have had Fibromyalgia, asthma, cancer and many other health issues over 20 years that have left me unable to work for pay. I love being able to volunteer when and if I can. The hardest part of being chronically ill is learning to say “No” or “I need some help”.

    I live by the motto of “Practice Random Acts of Kindness”. I love your last sentence.

    Cheers,

    Louise

  • Michelle

    I am also a classic overachiever and almost 2 years later I still struggle having lost so much independence and having to rely on my mom & husband to do everything for my kids instead of me lots of days…I feel useless and miss my old self. I can’t work….I can’t walk any distance….and i can’t play with my kids.

    thank you for sharing your story…..

  • Hi Agnes,

    I ran the chaplaincy department of Australia’s largest hospital, while being a single mum to two kids with Asperger’s, and being myself a lupus patient.

    When I came to a screeching halt – very little changed for anyone except me. The family got by with mum having to sleep most of the time. The person who’d been my deputy took over running the department when I left first on sick leave, then on “temporary retirement”.

    My new job – only part time, as minister to a very small church – is great and nowhere near as demanding. But I’ve also learned how much of he demands from my last job were ones I’d placed on myself, rather than the job placing on me.

    I still like to try to be superwoman, but I’ve learned that it’s better to be functioning woman more of the time.

    Thank you for your story, Agnes. It helps make people like me feel less alone.

    Iris