My Roulette Kinda Life. You Just Never Know.

 

I remember going to the bright lights of Atlantic City and watching people play roulette. I would just walk around and watch people. I liked to watch the “high rollers” because they seemed so carefree with amounts of money that would make me sick, if I lost. For a moment, I would love to be able to be one of them and not have a care in the world, and be able to bet freely. I stayed long enough to watch the same older man, win big.


People were cheering for him, as he bet black. He looked like luck was on his side that night, but then he just broke even, no cheers that time, but no big disappointments either, he was safe. Just as I was about to walk away I watched as he lost it all. He looked frustrated and even a little mad, but he continued to play anyway. In a matter of minutes I saw such a wide spectrum of luck and emotion. I laughed to myself knowing I couldn’t even afford to play. I walked away and never forgot thinking “that is my life… a roulette wheel. I never know what I’ll wake up to, what I can do, or how I am going to feel.” It’s all a risk, an unknown.


I have heard the same judgmental questioning from many people in my life, when I can do some things and at other times can’t function at all. The most difficult things for me to deal with are the misperceptions and attitudes of other people. Before I developed more serious complications I did not appear to be ill, I still don’t look very sick. Family and co-workers accused me of being hypochondriac, lazy, whiny and yes, even crazy. Sometimes it’s the judgmental looks, or whispers that hurt more than when people actually ask. I wish they would ask so I can at least try to explain. It is hard because although I expect some judging or questioning, the people who seem to voice it most are those who supposedly love me and know me best. Maybe because they love me and know how good my good days are, they don’t understand when my bad days are so bad and it is such a drastic change. If they could just understand, I am just as frustrated with not knowing when I’ll have energy and strength to do the things I want to, as when I actually cant. I hate not being able to be relied on. Maybe that is why, when I can do things; I always give 100 percent, because I don’t know when I might not be able to.

I think what makes it truly confusing for those surrounding me or anyone living with a chronic illness, is that there are days when you feel like you could run a marathon. I look great, I have a smile on and I do more than most! Then as quickly as the energy came, it leaves in a flash, and you are left with nothing. You are completely depleted of any ounce of energy you had and are left with pain in its place. It is like living two separate lives, and it is so hard to plan your life according to an unknown schedule. You need to learn to accept help, even when you don’t want it. You have to learn to always have a plan B, and be prepared for the worst, while remaining positive and hoping for the best. It’s a difficult balancing act.

In my case, anything can set it off at anytime; doing too much, a cold, an infection, stress, or even the weather. It is living on constant thin ice, never knowing when the next crack will surface causing you could to start sinking. I think of it as that spinning roulette wheel, you never know where that ball could land. There are times when I am winning and no one would ever guess that I am sick. I have gone on vacations and hiked through jungles, I have performed in shows, and been the life of the party, I have exercised, worked, and played. Then it’s like in Vegas, when your next spin could be the big bet that causes you to lose big time. I need to know that I am taking that risk whenever I do something, and use up too many of my “spoons”. Sometimes I have no choice; I lose before I ever wake up. I had no chance at a spin. I am in pain, I have no energy, I can’t move or I have been in the hospital. There are times when you break even, and those have become the good days. The days when you get what you needed to and wanted to do done, and at the end of the day you are not hurting more than when you started.

The thing is when you are dealing with your health you can’t gamble, it’s not worth the risk. You are not given a choice. You aren’t rolling the dice… your disease is. So you have to learn to ride with the rolls of roulette and take it as it comes. I have gotten better at this, although it is always a battle. I hate not being able to do what I want to do. I think that just might be the worst thing about being sick, or at least the hardest thing to get used to.

My true friends have learned that plans are never definite with me until that morning, pending how I feel. I have come to use words like hopefully, maybe and likely. My family has seen that there are times when I am the life of the party, the happy hostess and helper. There are other days when I can only sit there and answer politely that I am fine, just not my peppy self that day. But what is worse about having to deal with your own highs and lows of a forever “pending illness” schedule, is having to deal with everyone else not understanding it. And although I am proud to say that great family and friends, who most of the time understand or at least accept my lack of commitment to schedules, surround me, there are times when it becomes an issue. I have to constantly explain time and time again how I am capable of things at one moment, but not at another. I have to fight feeling guilty for breaking plans; I so desperately want to be a part of. I don’t want to let people down, and I have to deal with knowing that people are questioning me. Is she being lazy? Does she just not want to do this? Don’t they know I would love to be just like them, and never have to worry, and always be able to keep a calendar? I want also to pick and choose what to do, based on nothing other that what makes me happy, but I cant. I then have to fight the instinct to not make plans at all. Then the only person I would let down is myself. It would be very easy to just not plan ahead, but then I would lead a very lonely, boring life.

I want to do as much as I can, but then there are times when I can only do so much. I have learned to deal with this; I am waiting for those around me to accept this. Sometimes I think it is harder for them to grasp this concept then for me, because I have no choice, this is all I know. A healthy person can “push” himself or herself even when tired or even sick. How can someone understand what he or she has never experienced? But someone dealing with an illness cannot “push” anything without dealing with the consequences if they can even “push” at all. The disease is in control, I have to accept not being able to spin the wheel and I have to just live with the results. Hopefully, those around me will learn to accept this too.

Essay written by Christine Miserandino, 2009 butyoudontlooksick.com

©2010 butyoudontlooksick.com
  • Jillian-Elaine Lindley

    I used to be a professional ballet dancer and you could have been writing about me.

  • thomas

    Waooow!!
    Nice blog, this will be greatly helpful.
    http://sbobetinfo.net

  • qtpie angelica

    Amen!!!!!!

  • Nadia

    It’s horrible when your illness is literally in your head, too, because you can never stop second-guessing the way you feel. “What if I really am just lazy??” Because mental illness is so stigmatised and often minimalised. It’s so hard to allow yourself to accept bad days.

  • Nadia

    My invisible illness is severe depression. I can relate to brain fog oh so well. >.>

  • Daylene

    Thank you, thank you, thank you. I have never been a healthy person. I was diagnosed with chronic asthma at 3 months old. In my 20′s I fought endometriosis on top of the asthma. Then 8 years ago I was diagnosed with congestive heart failure with cardiomyopathy. My heart function was only at 10%. I am now 48. My heart function has improved and am now at 35%. However, I still only have a certain amount of spoons and live the roulette life. My husband is a pastor and people have had a difficult time understanding this. So, one again, thank you for writing these articles. I have been sharing them to help educate our congregation about the daily struggles of living with chronic illness.

  • Marie

    oh, and Im only 49:)

  • Marie

    OMG I had to try to remember if I had written this…you were pulling out all the thoughts in my head. I live in isolation mostly because I don’t understand other people anymore, not just that they don’t understand me…I don’t relate to healthy vibrant people anymore, and my personality has changed to compensate for everything. Don’t get me wrong, I still live life each day to its fullest, but I also don’t have very high expectations either. If I get out of bed, dress, EAT! LOL, I know its a good day already ha ha ha… My cats keep me entertained and good company,…they seem to understand :) and don’t ask too much from me. But reading this made me feel like I was not alone, after all!

  • Hari Theocharous

    Hit the nail on the head!!!! Brilliantly written

  • Rachel

    So brilliantly put. thank you for this.

  • Kelly Wunschel Hathaway

    My husband & my children are the only ones who understand what I deal with. Thankfully my children are older so they fend for themselves :) the rest of my family are constantly giving snide or nasty remarks to the point that I’ve pretty much distanced myself from them & I have a few close friends that don’t really give me a hard time but get aggravate if I have to cancel.

  • Sasha Bella

    You hit the nail on the head. I can so relate to this. My dear husband who is supportive, even has difficulty understanding how I can feel so well one or 2 days, and on the next day I’m down for the count (so to speak).

  • IBelongInMaui

    There is so much truth in this! Another great essay I can relate to. The hardest part is people, especially lived ones, not understanding the ups and downs of the disease and how our abilities are so interconnected. I’m blessed to have a husband who understands- because most everyone else doesn’t “get it.” He looks long enough to really “see it” and can usually see me crashing before I can. Keep on writing, Christine.

  • Vickie Foster

    I am having a P.J. party today—ALL DAY! Guest list: My P.J.’s and Me! It was so good to come across this today, thank you .

  • http://crazy4yarn.blogspot.com Kim

    Yeah. Yeah.

    And the well meaning friend who’s a mad organizer and cleaner that recommended going gangbusters whenever I feel good, not understanding the idea of reserving a spoon. Or that vacuuming my stairs can lay me out for 3 days. That I’d rather leave the mess and pour some energy into positive interaction with loved ones, when so many nights I collapse and pass out before I even can talk to them. Or that the fog doesn’t allow me clarity to interact, and that interaction is as exhausting as cleaning when you wear your nerve-endings on the outside of your skin with Fibro.

  • MiniMorg

    Couldn’t have said it all better myself. I can totally relate to this-thankyou!
    Unfortunately I have not yet learnt to say ‘maybe’ to plans because even though my friends say they understand….they clearly get disappointed and whiny when I can’t.
    Here’s the bit that has not ceased to amaze me.
    I have also had “But you were fine last time and “you seem fine today”… from somebody else who also suffers from fibromyalgia and chronic fatigue! When I tried to explain I get really bad brain fog to them they hadn’t even heard of it being a symptom of fibro! :-0!

  • Rita

    Thank you so much for your stories. They always seem to hit home. I have decided Lupus is not going to beat me. So at age 56, my husband and I with a friend will be opening a new business.

    Yes, most would say I am crazy, considering there are at times that I can’t get out off bed or off the couch. I have decided not to sit and let my life fly past by. We know there will be days that I may not be able to help, or that I may need to work from the office or possibly from the house (on the couch), however, together we are going to make this the best new business.

    So I am taking a spin on the Roulette wheel, and will show Lupus that I am determined to grab hold and with my partners we will win the big spin.

  • Steph

    “I hate not being able to be relied on. Maybe that is why, when I can do things; I always give 100 percent, because I don’t know when I might not be able to.” <——made me cry. I understand it. I live it.

    Love you and what you have done for the Spoonie Community across the the globe.

    Thanks for sharing yourself, my friend!

  • Crystal

    Very true. I have Nummular Headaches, Migraines and chronic fatigue. I’m lucky to have found doctors who listen to me and believe me but I remember the first doctor I went to. When I was sitting in her office and a stab of pain hit I was crying and she just sat there staring at me. Later I learned she thought I was faking it all. Last month at a dr appointment when I had a ‘normal’ stab this doctor asked me all about it and he thought it was a severe one by looking at me. I plan on continuing to see him even after I move out of state, easy enough with my mom still here.
    I’ve gotten better so I’m more likely to come close to breaking even, but sometimes I can be doing wonderful and some gremlin spins the wheel and I loose it all. I go from talking and laughing with my friends to curled in a ball crying in a second. It does tend to scare people the first time they see it but most of my stabs are not that bad. When it is just a little shriek and legs jerking up most people think I saw a mouse.
    I’m very lucky in that my boyfriend is so understanding, we met when I was a little bit worse, and sometimes he knows my limits better than I do. He treats my like a normal person but will check that I’ve taken my meds if I’m spacey and make sure I’m taking care of myself or take care of me when I’m bad.
    It was hard when I first got sick, I was in my early 20′s and getting over being shy, starting to go out with friends. I was actually very lucky in the timing, I was getting financing approved to buy a house when I got sick. A few months later and it would have been a total disaster, instead I just continued to live with my mom. In someways being shy before made it easier when I was so sick and sensitive to everything that I could not go out, I just went back to being a hermit.
    When energy levels crash suddenly my mom says the bottom of my spoon drawer fell out. Usually after sleeping a few hours I can pick up a couple to make it till bed time. Some days I get so frustrated that I can’t do anything and I just want to scream, but the next day I might be great and can do everything and not even need a nap.
    Somehow I have kept my hope that I will get better (have a pain free day eventually) and tried to make the best of my situation. I knit a lot, that is what kept me sane when I was at my worst. At least I could look and see that I had made progress on something even if I had barely been able to leave the bed. I’m working on selling things online and have received disability so I can at least pay my bills now. When I need to lay down but not tired enough to sleep I listen to audio books, they can also distract from the pain. I’ve learned how to listen to my body, even if sometimes I’m having too much fun to pay attention to the little signs. For my pain I keep an ice pack on my head, when I go out I carry a zip lock bag so it is easy to stop at a gas station to get fresh ice. This has made going out easier. I wear a hat and sunglasses to dim the light, I now have a few hats I can choose from depending on how much of a brim I need, a couple even look good.
    I know everyone is different and there are lots of invisible illnesses and even more combinations but maybe we can try to be the best sick person we can be.
    Thank you for this site.

  • Aimie

    It describes my life today.

  • Pingback: Choices…. | Silks'n'Sweets

  • http://butyoudon'tlooksick amy anderson

    I just could not believe this when I read it! It was just like it came out of my mouth. One of the responses said that it should be given to the doctors to give the family members and friends. That is so true!
    Amy

  • http://dogkisses.wordpress.com/ dogkisses

    Hi Christine,
    What a wonderful essay. You speak to chronic illness and all that comes with it in a way that is both easy to read and encompassing.
    I relate to everything you’ve said here — so thank you. I feel like at least one person totally understands what my life is like, even though you are a stranger.
    I have Chronic Fatigue Syndrome and fibromyalgia. I have other illnesses too, but those two make the top of the list. Sometimes I’m in so much pain and so fatigued that when it is time for my medication, I continue lying down, even though the medication which helps the pain — therefore giving me a chance at living– is only a few steps away. I finally make myself get up and take it so I can function.
    Plans? Sadly, I guess, I gave up on them.
    Thanks again for the wonderful essay.

  • Kate Sousek

    Christine, you are so good at putting this all into words! I feel the same way. I also had a tough time of it early in my diagnosis, as a teenager, when some people didn’t even believe a kid could have arthritis. It’s taken me 17 years to figure out that I really am sick, and my daily activities depend heavily on what turn my disease takes, even from hour to hour.
    Kate Sousek
    dx: seronegative polyarticular juvenile rheumatoid arthritis

  • Jen Martin

    Again Christine…You rock! Our Inspirational Hero!! I always ask where is the old me? But I’m always here, just different variations, and it is difficult for others to accept. Now, I need to remember that and not be too hard on myself. Keep in mind, perfection is imperfection…**bighugs**

  • Dottie Balin

    Christine,
    Thank you for your beautiful writing. Your web site is terrific. I have Lupus,MS and Fibro. I look forward to your email everyday. I also can relate to this, as my family has a hard time understanding my illness as well. I wish they would just understand instead of ignoring my problems sometimes. They mean well, but just don’t get it. Thank you again, keep up the good work. Spoons forever !!!
    Dottie

  • Veronique Henner

    Once again, Christine explained in her words EXACTLY what my life is about. from the days you’re a Dancing Queen to the days you can’t leave the flat; from the trips to the jungle to the days you just sit in pain and pretend you’re OK. The day you excel at work to the day you call in sick. Every moment of my life are planned a week ahead and yet I do not control anything. And from “you don’t look sick” to “no, you’re not cancelling again!?” , having to explain yourself all the time, again and again… I’ve suffered from Fibromyalgia since I was a child, that’s almost 33 years of apologies. It makes it all more painful, frustrating, enraging, exhausting. Hopeless. And then, because you’ve decided to not let yourself be wasted by an unfortunate condition, and with hard work, you finally build yourself a network of doctors, workmates, friends who understand, or if they don’t, who don’t judge, accept you the way u are, support you and for some them, even protect you. Thus give you hope, and that’s what makes ur life so beautiful.
    THANK YOU CHRISTINE.

  • Manda Blackmon

    I can’t thank you enough. I have Ehlers-Danlos and was recently diagnosed with Osteoarthritis. My husband just didn’t get it and I felt like he wouldn’t even try. I sent him Roulette Kinda Life and apparently it made a difference. I cried for an hour after I read his post on it. He finally gets it! or at least he’s doing a good job trying to. I would scream “Thank you!” from my roof top …if I could get up there and if you could hear me. ;o) In one short article you have done what I couldn’t do in 8 years and I will be forever grateful to you.

  • Jo

    Thank you, my sister and I both have a chronic illness and as others said – this is exactly how you feel all the time.

  • http://www.explore-oil-pastels-with-robert-sloan.com Robert Sloan

    This one is great, Christine. It’s so true — your metaphor of the roulette spin is elegant because that’s what it is. None of us asked for this. None of us even went to a casino and decided to bet our health against something — just being born is that bet.
    Parents don’t always get healthy children. Sometimes when they count fingers and toes, the count is off and the child isn’t normal.
    I’ve been called hypochondriac all my life and called crazy and even the dang doctors all thought it was psychological because my circumstances were so rotten I should’ve been depressed and insecure. The thing is, no one could comprehend how physical it was. They all read my scoliotic posture as body language. They accused me of “pretending to limp.” The fibromyalgia goes so far back I can’t remember not having it, so every time they raged at me, they cut off any good days I was having.
    I have trouble comprehending how I survived my childhood and the more I know about what was wrong, the more I know how narrow a line of survival I was walking back then. I could never keep up. I could never keep a schedule. I could never even manage to get up in the morning and function — of all the things that were consistent, that’s the biggest.
    I can count the days I could function as soon as I woke up on one hand, in over 50 years of living. Yet no matter how consistent it was that I fell over, stumbled, couldn’t move, fell apart and could not function, none of them ever believed anything was actually wrong. Your essay brings back how it felt growing up with people who believed I was physically whole and mysteriously depressed.
    This essay is wonderful because people who have to live with us or who love someone who’s got chronic disease do need to understand what it’s like. The worst, other than losing my family, was when medics — doctors, nurses, aides — didn’t believe it when I reported symptoms.
    I hate not being able to plan anything. I hate not being able to be reliable or complete things on time no matter how well I schedule them. I gave up on it entirely and just set priorities, then do whatever’s actually in reach for that day or that hour.
    Then hope it’s enough, because when it’s not my life falls apart. I wound up evicted too many times. I wound up losing jobs. I wound up homeless. I wound up losing important necessary possessions and having to replace them repeatedly from moves that went bad.
    I’m moving again now and struggling with an entire month to pack, with trying to do that myself so that when we get there, I’ll know where it all is and have less trouble settling in.
    There is something like this that I found in a movie and a book, Stephen King’s “Shawshank Redemption.” When he sorts out how he feels about the false accusation of murder that got him thrown in jail, Andy Dufresne says “I was in the path of the tornado.”
    That’s what it is.
    It’s luck and that kind of bad thing can happen to good people as easily as anyone else.

  • Lara

    This describes my life in a nutshell and I agree it is very difficult trying to get others, even when they love you and support you, to fully understand. I think that empathy may only go so far with most, as they haven’t experienced the roulette effect. Thank you for helping us to feel that we are not alone by sharing your experience.

  • CJBlackmon

    My wife dealing with day to day issues, I have never really understood this completely until you so eloquently described it. I am a healthy man, and my family members are all in perfect shape and with the exception of my grandparents (who are in their 80′s) no one takes medications. Seeing my wife who is in her early 30′s, it’s hard for me to comprehend that she is in serious pain. I am the first to admit when I am wrong, and I try hard, not only as a person, but as a husband, to always see the other person’s points of view, get on their side of the table, but I could never get past her age, and comparing her to myself, and thinking “she’s too young to have health issues”. It was difficult for me to percieve and accept the pain that my wife feels on a daily basis. The part that hurts the worst is when you described yourself as “not being believed” and also being called a “Hypochondriac”. I openly admit that have joked with her as being a Hypochondriac, and I feel ashamed for even thinking it, much less saying it. You have really opened my eyes to what one goes through at home and often times deals with…alone. Thank you for your writing, and it has certainly changed my views towards the daily challenges my wife contends with. I never knew that there were others in the same situation. This has made me look deeper into her illness, and be supportive of her in every way I can, as she has always been for me. Every husband should read this for a broader understanding. Again, Thank You!

  • Pam Marion

    Describing my life is difficult and this story just did it perfectly. Thank you for putting my thoughts into words for everyone to see….It is so miserable having to explain over and over. I have finally shut everyone out and feel like I have become a hermit…

  • Vanessa

    Perfectly said… This is how I am going to describe the roller coaster of pain I am on… It makes things easier to explain to those who just can’t grasp the concept.

  • Deb

    If only the people who don’t believe us would read this. The ones who give us the looks and call us hypochondriacs. I have emailed some people in the past with other great articles from this website so they could understand me better (it isn’t only me!)but only one out of say seven people called to say they know me better and what I live with. I think most saw a few lines and deleted it. I am not a whiner, I just want understanding among my family and friends. It is so frustrating.

  • Stacey

    Fits all of us with chronic illness I’m sure.
    Good read.

  • http://www.explore-oil-pastels-with-robert-sloan.com Robert Sloan

    Christine, this essay is so beautiful. It’s as good as the spoons one. It goes right to the heart of it.
    I hate it that I can’t trust myself. I hate it that no matter how much I want to do something, there are too many times I just can’t do it. I hate it that now that I have nothing pressing my time, now that I don’t have school or a job, I don’t have any more time than someone who was working or going to school — that I have all the time in the world and hardly any time at all.
    I can’t count on doing anything that has a plan or a deadline. I was going to start doing some Blue Wool lightfastness tests on oil pastels in April and it’s now up in the air whether I’ll be able to or not. I may have to start those in May. I may have to start them in June if I’m not up to doing it. This bites.
    Thank you for reminding me that it’s not just me. It’s a rough situation and it bites.
    Robert

  • http://joanna-herlifeinanutshell.blogspot.com Joanna

    It’s like you tapped into my brain… through the past 5+ years of my chronic daily headaches, I have had to plan day-to-day, cancel last-minute, feel guilty, been told not to feel guilty, feel guilty for feeling guilty… I am going to share this post with friends, family and my fiance.
    I also thank you for putting our collective struggle into the perfect words.

  • Patrice Howe

    Christine you have perfectly explained this disease. You should print this into a card and have every doctor give it to their newly DX’d Lupus patients. Maybe then their families might understand the hell of this Lupus. Maybe the newer patients could save their energy on feeling well instead of expending it on explaining to their loved ones.
    Thank You for a GREAT essay.

  • Teresa

    Your story fits me perfectly. Even though there are times I feel my family dosen’t understand. I have been dealing with this for over 20 years and having to explain or apologize is getting old. Thanks for your positivee posts.

  • Karen

    I couldn’t have said it better myself, having CF. I am sending a link to this to hubby, friends and family so that they may get an inkling of what we have no choice in dealing with every single day of our lives.
    You are a talented, eloquent writer, Christine!

  • Mom

    I loved your story- I hated the reality of it. I hope you know that I do understand, but I still get disappointed, not over the broken plans, but just that I miss you and want you to be healthy and happy.

  • Bonnie Holmes

    This is the first time I have heard anyone else put into words what I feel everyday. It’s amazing! I feel like you were in my head when you wrote this.

  • Becky

    You have written what I can’t verbally put in words. Thank you!

  • http://sporkworld.tumblr.org Millie Niss

    You hit the nail on the head… I hate being “unreliable” but as you say, when you are sick your choice is between being unreliable and being completely absent…

  • http://jasminepw.blogspot.com Jasmine

    Beautifully written. I can totally relate.

  • http://ichglaube.blogspot.com Nicole

    Thank you for putting this so eloquently. I have had a chronic illness since birth and developed fibro in the past year. My husband gets so confused why for a couple weeks I’m happy and energetic and then, seemingly out of nowhere, I’m telling him I need a break from going out and instead want days and days of just relaxing in front of the TV. He is learning to not measure my abilities/energy in relation to his own. I can have good days, weeks, maybe even a month, but eventually I will probably have a day, a week, or a month where I barely get by. Right now I’m in a barely get by sorta section, sick and achey. I do the bare minimum to keep my life chugging along, hoping to avoid a trip to the hospital. Almost always happens in April, and I’m usually better by May (fingers crossed!).