Confessions of an Unapologetic High-Maintenance “Spoonie”

 

pedicureI am unapologetically, standing proudly on my perfectly pedicured toes proclaiming that I am high maintenance. Where exactly is it written that just because I have Lupus, I have to accept the life of a bag lady? Over and over I hear the same thing from doctors, friends, strangers, facebook friends, and people who friend request me just because they think a higher friend count looks cool…. “you must not be sick if you can get your hair done, sit long enough to get a manicure, make it through an aerobics class, have a glass of wine, dance naked with a lampshade on your head” Ok, that last part may have been too much information, but the ridiculousness of some people’s reactions to my life warrant such over exaggeration. I am a girlie girl….I like pretty things, I like feeling pretty and I like pampering myself. If anyone deserves to feel pretty on the outside, it’s those of us who feel like our insides are anything BUT pretty. I like looking put together and normal to the outside eye, because anyone who is chronically sick, knows on the inside you are more of an out of control mess than the public relations department of BP.

Sure, there are the days that I drag myself out of bed, look into the mirror and realize I could frighten small children enough to go running home to their mother’s arms, crying about the scary ghost lady down the street. I could care less if my entire head looks like the “hair gel” moment of Something About Mary, or I look pale enough to play a very convincing lead in “Powder…The Sequel.” I shrug my shoulders at the fact that my body hurts so bad the only thing I can stand on my skin is an XXL t-shirt that announces to everyone proudly that I “drank the Rooster shot and lived to tell about it”. I hold back the tears when my 3 year old sees me dressed and out of bed and says “Mommy, you pretty, you not sick no more?” I hate looking at that woman in the mirror. She’s not me. She’s not the woman I have known all my life….the one that never needed sleep…never stopped….and had more energy than a room full of preschoolers with an endless supply of Fun-Dip. That woman was invincible. But she is gone…she’s been gone for some time now. Instead, I find myself stuck with a new version of me….the one whose body shuts down well before 9pm….who pays for days for a simple outing to the mall…..and whose energy level is more on par with a senior citizen with a bad attitude. My “me” days are few and far between, so when the autoimmune gods bless me with one of those coveted days where I look in the mirror and see “Steph” instead of “What Steph used to be”, you bet your last spoon that I’m making the most of it.

Yes, my hair IS highlighted four different colors….it takes a good 3 hours of sitting in the salon chair, my knees screaming and my fingers so stiff I resemble a zombie from the Thriller video. But guess what? My hair falls out. I have patches on my head that have hair and patches that don’t. Some days I am a 36 year old woman with a comb-over that could put Donald Trump to shame. After I take a shower on any day of the week, it quite possibly could look like I murdered Chewbacca in my bathtub…..so forgive me if I feel the urge to bleach the gray out of the hair I have left and feel pretty for half an hour.

spray tan boothYes, I regularly get spray tanned. If I could lie outside in the sun or fry my internal organs in a tanning bed like a normal high maintenance girl, I would…trust me…there’s nothing better than tan lines. However, both ways of sun-kissing my pale, Casper white skin send me into a flare tailspin before you could say the word “crispy”. Forgive me if I prefer to look in the mirror and see the bronze glow of “tan in a can” rather than the transparent, dark circle eyed, butterfly rashed, bruised up skin that normally looks back at me. White is not a color…..white is a bread and what I wore on my wedding day.

Yes, I work out. I even *gasp* teach aerobics classes. If I have to hear ONE more time “well if you can exercise like that, you must not feel too bad”. To this….I only have two heart-felt words. BITE ME. If your muscles have never ached so bad that you cry hysterically as you sit in a scalding hot bath at 3am, then you have no right to judge what I do to prevent it. I work out to live. I exercise to function. I sweat to be able to walk as you run. Working out is not a chore I do to wear a size 4 or to have six pack abs. I work out so I can drive to work….stand for longer than 10 minutes and pick up my son with arms that don’t collapse from muscle failure. If all my hard work gives me the illusion of a strong, fit and normal woman, then I’ll take it….and if that illusion makes me less sick in your eyes, well, then I’ve done what I set out to do. I have some women who have taken my class for ten years who just recently have found out that I am sick. I worked so hard for so long to not seem weak….to wear that bedazzled superwoman cape that makes me invincible. You don’t see the days it takes me to recover from one hour of exercise, or the tears I cry alone at night because I can’t tell you how much each bead of sweat costs me in time with my family. Ironically, I have so many more of them tell me that now that they know what I overcome on a daily basis….it gives them MORE motivation to push themselves to their own fitness goals. I remember one participant’s words well…. “If you can get up here and push yourself with all you go through, then there is no excuse for anyone, no matter their size, shape or condition, to not do the same.” She made me cry. She “got” it. Very few people “get it”. I was so overwhelmed with emotion I made the entire class do 100 lunges. I should probably apologize to her for causing her to be chased to the parking lot by a mob of angry spandex-clad class members in muscle failure.

manicure Yes, I get my nails done on a regular basis. Continually looking at blue nail beds because of a never ending battle with Raynaud’s Syndrome became more than I could stand. Slapping on a layer of acrylic with some hooker red nail polish makes me happy. If I have to look at swollen knuckles and numb fingers, at least at the end of those distorted hands, I have something pretty to look at. They really look nice when I have my head shoved in the toilet, throwing up every internal organ I have for a full 24 hours after my weekly methotrexate injection. They are also a nice visual contrast when having to tick off on each finger the number of pills I have already taken, or the hours it has been since I have been able to stomach plain water, or the number of days it has been since I have been able to sit at my daughter’s softball game for longer than 10 minutes without having to leave in pain.

The phrase I hear most from well meaning family and friends is…. “But you USED to (socialize party, stay up late, go to the pool, go on day trips, clean the house, etc). This statement is true. I most definitely did USED to do all that stuff and more. I used to be unstoppable. I simply am not that woman anymore. I can’t be. Nothing is the same. If I’m able to get ready and go to dinner with my family, I am proud of myself because I have once again….gotten the best of my disease……that day. The next day, it may come back with a vengeance and remind me that some days…I am at the mercy of Lupus’s will. I never know from one day to the next, or for that matter, one hour to the next, how I will feel. Just because I felt fine enough this morning to type this on the computer, doesn’t mean that in two hours, I won’t have to take a nap…..simply because my body completely shut down on me. Every day is a gamble and some days I feel like I am playing blackjack with my spoons. I see the cards that I’m dealt, and know how desperately I want to get to 21…I mean let’s face it…it’s not often that we win and the Vegas odds most definitely aren’t in our favor. So, some days I will tell the dealer to “hit me” and I get a queen and an ace and bask in knowing I beat the “house” for the day. Then there are other days that I have 18 showing and gamble on one more card…only to have that 6 of clubs show up and lose all my chips and spoons for the entire week.

I don’t look sick. I know it….I hear it constantly. If I stopped doing all the things that I have just talked about…would I look more deserving of your sympathy? I am assuming if I could see all of your faces, they would all be nodding in agreement. Good. That’s exactly my point. I don’t want your sympathy. I want your friendship…and I want you to realize that the small things that I do to make myself feel and look better are not done out of vanity….they are done out of an intense need to feel normal….to feel like you do every day of your life. I value the days I can look in the mirror and smile back at the reflection. Those days are few and far between for me. If there is one thing that living with Lupus has done for me, it’s made me appreciate the days I can wear heels, the days I have the strength to fix my freshly highlighted hair for a night out with a husband who has watched me cry myself to sleep for a week straight because I couldn’t tell him what hurt……because everything hurt…..it has made me live for those infrequent moments where I can show my daughter how to flat iron her hair and how to correctly apply lip liner.

So the next time that you complain because you’re having a bad hair day…..remember to be happy that it’s not falling out because of the chemo injection you took last week. The next time you complain about it being too hot outside to play with your kids….remember to be happy that an hour in the sun doesn’t send you into a flare that has you bedridden for days. The next time you say you are just too tired to go to the gym…..remember that there are those of us that would kill to make it through an hour on the Stairmaster without having knees the size of cantaloupes and three days worth of anti-inflammatory injections. The next time you complain about your nail polish not matching your outfit….remember that you have the ability to paint your own nails without your hands shaking so bad, your fingers end up looking like a CSI crime scene.
Yes, I’m high maintenance…and I make no apologies for it. I make the most of everything I do because it makes me happy. I would love to have time on my side….to not have to break plans with friends because I just can’t seem to wake up enough to shower…..and I would love for ONE day for you to walk a mile in my heels. Cause then maybe, just maybe, you would understand why the days that I can successfully put them on, I walk taller….I stand prouder….and I strut as much as anyone could possibly strut. I walk in those heels with pride beside my friends and family, because they know that tomorrow, those heels may sit alone in the corner of my room because I lost the battle that day.

Article written by guest writer Stephanie Kennedy

About Stephanie:
I live in Fayetteville, NC with my husband and 3 always hyperactive and occassionally adorable children. I was diagnosed with SLE in 2001 at the age of 27 and in the time since, have added Scleroderma, Hashimoto’s and Celiac’s disease to the original Lupus discovery. In my day-to-day life I am a Community Relations Specialist (aka, marketing and creative hodgepodge facilitator) with a local electric cooperative and part-time fitness instructor. For the past two years I have served on the Executive Steering Committee for the LFA’s Fayetteville Walk For Lupus Now event.
©2019butyoudontlooksick.com
  • Claire

    Thank you,very helpful sharing.

  • GoodRealAnswer

    Very Expensive and spoiled women out there nowadays.

  • Brittney

    I am 23 and recently diagnosed with Lupus when i told my friends and family every one of them said you don’t look sick. My response was what am I supposed to look like? a ragged worn out 23 year old! at 23 i feel like i am 80.. i have not had a day where I wasn’t in tears at the end of the night. I get worn out by just walking from my bedrom to the bathroom! I just got started on a medication so hopefully that helps! and our story just made me feel so much better!!! and made me realize that even tho i’m “sick” I don’t have to let me stop me!!! Thanks so much and hope everything is well with you!!!

  • Marsha

    Thanks!! You did such a great job at explaining so many things I have been through! Thanks!

  • Jane

    I enjoyed your message. I could have written it myself. I get the same comments all the time, but you don’t look like someone who has RA or Lupus. I still have not figured out exactly what someone is supposed to look like. I have RA and Lupus.

    Thanks

  • cheyenne gray

    How much does your nails caues to get done for tomorrow

  • Charissa

    One word: AMEN.

    Let’s make it two: AMEN SISTER!

    🙂

  • Kim

    Thank you!!!! I feel so much better about my illness’s (Hashimoto and Adenomyosis). You really put the words I have been searching for out there!!!!

  • jeana weiss

    Thank you. I was NEVER a high maintenance person until AFTER I got sick. My friends finally get it that the better I look, the worse I feel. Who wants to look in the mirror and see how bad they feel?

    Most of my family, still do not get it. I thought about showing them the lab results, and trying to explain, but decided it was not worth the effort.
    (lupus/RA)

    j

  • Nancy Tucker

    I’ve been a spoonie for 25 years, and “high maintenance” has always been my way of being. Hair just so, nails….never a chip, perfect tan and pedicure. Ready to roll. Now, if I have the energy to get my hair like I want it, it’s magic. RA keeps me from doing my nails and I don’t want people to look at them, anyway. Lupus…no tanning, but the worst??? Well I saw the wonderful picture of the pedicured feet and began to cry. I had to have my great toe amputated earlier this year–osteomelytis. I am lucky I still have my foot and my husband is so understanding. It’s only a toe and my husband is encouraging me to go for a prosthesis $$$ just to make me feel good about myself. High maintenance? It tires me out, but the thought of painting my toenails again. It’s a confession I long for each night when I put my feet into bed. My husband? He’s a saint…Now if we could just manage that PAIN. Thanks for making me feel “not alone”.

  • tracey

    Wow…Wow!! I’m newly diagnosed with SLE and you have said it all for me in this article, so happy I found this website.

  • sam

    I too am a spoonie. Mine started at the age of 10. And everything you wrote…it’s things I wish I was able to articulately write, and once upon a time, may have been able to be that articulate, but now (chronic fatigue, insomnia, and the medications they have me on all compromise my capacity to (eg…now) articulate well) I am a total mess. Sure, some days I have a limp, some days I walk pretty close to normal, and others, I can barely make it with a cane, and yes, I am a little plump, but that’s no means to judge whether or not you’re sick. I used to work out when I could afford the gym, but there’s such a limit to it when any pressure on your foot places you in agony. Then you have to make a choice: medications or a gym bill. I do miss it though, because it did help me feel better (after a few days of recovery) but it took less and less time. And physio used to be something that offered at least some excercises and machines I wouldn’t have access too to help build up some strength in my knees so I can walk more than a few steps without my knee giving out… I admire your courage and strength, and that you have made it so far. You have every right to pamper yourself; any spoonie does. It doesn’t change the fact every day is a struggle. I have had those comments from family and even my boyfriend has trouble believing that every day is painful, because somedays I am able to puch myself and I just prefer not to complain so I hide it. So, of course, I must be “normal.” This is a struggle all spoonies will face. There needs to be awareness in the gen. public. I wish everyone the best, and for some days of relief!

  • Robby

    I agree totally with everything you said, I am a guy so I don’t get my nails done (but this article might make me start lol), but I do so many other things for the same reason.
    But, what made me comment is you comment about having to take a nap, it depresses me enough that I have to lay down, (between my illness’ES and my med’s, and my insomnia), but to have my family complain about how many naps I take, really makes me feel depressed. I will have them read this, and hopefully it will help.

  • torie

    Wow! high five the majority of that article however i also teach aerobics and dance classes but currently been beaten and unable to walk or sit without being in pain so really down at the mo that I cant do what I love.

    also love my nails being done and tan always makes me feel better!!

    big spoonie hugs

    Torie x

  • Paula

    WOW!! I felt like I was reading my life story!! Talk about hitting the nail on the head!! Thanks for sharing!!!

  • Michelle

    I LOVE this article. It sounds so similar to what I do to maintain some semblance of normalcy. I can’t control the side effects of my meds or when I am holding 15 pounds of excess water or when I have a lovely bright red rash BUT I can control things like how I dress (most days, some days it’s dictated by my pain) and making sure my hair is at least clean & combed & well conditioned (I think having thick, curly hair actually helps on this) and no matter what I always keep my hands and feet well taken care of w/ polished tips & toes. These things I have control over and with so much beyond my control, I take pride in the things I can control and maintain.

  • God Bless you for putting into words what I have been feeling for so many years. I have Raynauds, fibro, ? scleroderma.. When your whole life changes because of chronic illness but others tell you “but you don’t look sick” or “just snap out of it” it just made me feel guilty for being sick. Thank you for these words of wisdom. I am a nurse and find that some health care professionals are the least understanding due to lack of knowledge. Now I may direct them to your website so they may be enlightened.

  • I do not have Lupus , but with fibro I hear you. Being a girly girl myself, I look in horror in the mirror each day. I do not recognize myself, sometimes I see glimpses when I work through the pain and apply make up , blow dry the hair and try to make it look better than what you described above. I recently could start getting my nails done again, but the pain it causes to do so often does not get over ridden by the Marylin red I get them painted in. I walk to stay slim as I can, but it hurts so much I wince, making it hard to motivate and of course I get the IF you can walk, why can you not work? I am shell of my former self inside and out and as I try to make myself smile , it fades quickly when I see my teeth with no gums left and soon to fall out and no money to get them replaced. But all I do to hang on to just a little bit of my girly loves is worth it to me cause it is all I really have left of me.

  • Dawna

    I really think you caught how we all feel. I have something called Paragesic Meralgia, which is a cross between Lupus & RA. I do have Discoid Lupus, and thankfully it has not progressed into something worse. I have all the aches and pains, depression, you name it. The good days and bad, but humor, faith and good articles by people like you keep me going. God Bless you…

  • Mary Wendler

    Wow, Steph! We get it cuz we got it! I don’t have Lupus, but FMS, asthma, hypothyroid, yada,yada! I am tired of killing myself for ppl who don’t appreciate it. My dishes waited for 3 days to be done, (fibro fog made me forget to buy dish soap) 3 days to do them, (I work fulltime, daugther was carless, extra driving and Christmas parties (3) this week to tend to) and my husband made a comment about how I couldn’t get the dishes done! Forget I got another daughter to doc, watched her kids while there, daughter #2 to college, went to work, cleaned and helped run a class on Sunday, AND the dishes were dirty cuz I freakin cooked too!!! Holy Crap!!! You preach it sister!!!

  • Carol Perdue

    OMGosh-I have found another person who feels just like me. You put into words what we all want to and want to tell others. I was diagnosed with Lupus in 2003 and I tell people that I do not know from day to day how I will feel when I wake up each morning. It’s not what I envisioned my life being like. Like you, I have very energetic boys. They’re older now, and that helps. I loved your inspirational blog. Keep up the great work.

  • Angie Waters

    Wow! That’s all I can say. You took a bunch od words right out of my mouth. I don’t feel anyone in my family really understands what I am dealing with. You explained it beautifully and I will share it! Thanks Steph!