The Luck of the Spoonies

 

Today was a lupus day. You know the ones that hit you like a ton of bricks the moment you wake up? You realize that your busy-for-a-spoonie-but-not-for-a-normal-person day yesterday has left you in a serious deficit today. Yeah…today was that day.

And then I had to play “Mom” to my two young boys. It all seemed too much and I complained about where the heck my spoons had gone. I went through our morning routine in pain. Everything hurt.

My legs hurt.

My head killed.

My arms couldn’t carry.

My hands couldn’t open.

I just needed a dark room and silence.

But I had to play “Mom” to my two young boys. As we were heading towards the time for my one year old’s nap I suggested to my three year old that maybe, just maybe, he and Mommy could lie in Mommy’s bed and read some stories. Mommy was tired and wanted to lie down.

“No,” he declared, “I want to play with my cars with you.”

Defeated and too tired to try to figure out the stealth negotiations of a three year old, I caved and accepted my car playing fate. I painfully carried the baby to his crib, kissed him good night and hobbled back to the front room.

I’m not sure if he saw the hobbling of my walk, or the grimace of pain, or the pure exhaustion in my face, but my three year old grabbed his stuffed animal sheep and said, “Let’s go lay down in Mommy’s bed.”

“Yes!” I said almost excitedly as he climbed off of the couch, grabbed my hand and took me to my room. We climbed into my bed and snuggled. He told me to close my eyes when I tried to ask him a question. He hugged me and we went to sleep. I slept for an hour only to wake to the sounds of the baby crying after his morning nap. I began to get out of my bed, but paused to look at the sweet boy that had helped his spoonie mother gather a few more spoons. I smiled as I brushed his hair from his head, kissed him on the cheek, and went and rescued his brother from his crib.

I realized this morning that despite the pain, despite the perceived deficiencies, despite the disease I’m lucky. I’m lucky in so many ways because I have lupus. I’m lucky because, despite what I’ve always believed about lupus affecting my ability to be a good mother, lupus has helped me to raise sweet and sympathetic children.

Lupus forces us to teach our children about the invisible diseases. It forces us to show them that just because a person looks ok, it doesn’t mean they are ok. They may be hurting inside whether it be emotionally or physically. We are able to teach our children that everyone deserves caring and love, patience and understanding, sympathy and support. We are able to teach our children that even if we’d rather play with our cars and other toys, that sometimes it is so much more important to help make someone feel better.

We’re lucky to have these invisible illnesses because we’re teaching not only our children, but our families, friends, acquaintances, and strangers that a person that looks healthy does not mean they are healthy. We’re teaching people to stop and think about others and realize that yes, that young mom of two that moans as she lifts her infant is struggling not because the baby is big (he’s not), but because she has something bigger, larger, more painful that is causing her weakness. We’re teaching them that stopping and helping her to lift those groceries or open that door can make a world of difference to a person that barely has the energy to care for her kids, and no energy to even feed herself.

So yes, on this St. Patrick’s Day I’m going to remember that I’m lucky, you’re lucky, we’re lucky. We’re lucky to have lupus because we’re forcing the world to do what the world has forgotten. Love one another, despite how we look on the outside.

Article written by staff writer, Sara Swati

About Sara: Sara lives in Chicago, IL with her husband and two young sons. She was diagnosed with lupus in June 2003 and a few years later Fibromyalgia was added to the list. In her former life (aka life before children) she was a high school biology and chemistry teacher, but had to “retire” early due to her illnesses. After years of infertility due to her invisible illnesses, she became pregnant with a “sticky bean” right before she left her job. She now enjoys the time she has where her children are still smaller than her and she has size as an intimidation factor…at least until they’re eight years old. She can always be found at www.mothershideaway.com/blog or Twitter @mothershideaway

©2024butyoudontlooksick.com
  • Amy

    I enjoyed your story. I was raised with one handicapped person who walked without ambulatory aids despite being told he’d never walk at all (my uncle), & even when he contracted renal cell cancer, worked every day he possibly could. He died when the renal cell cancer recurred & spread throughout his body; he was only 51. His courage always inspired me. I was also a caregiver for my GM, who’d been courageous beyond the imagination of most of her family, since age 9 when she lost her mother. When my GF had a massive heart attack, she did what was necessary to raise 3 small children at a time when there was no health insurance & no sick time, short or long term disability, even SSDI didn’t exist then. He returned to work as soon as he could, & despite severe congestive heart failure, worked the 12 hour days of that era, helped his wife reach out to their family members, helping them & anyone else they cold, during the Great Depression. He died at age 51. When my uncle was hurt in that severe car accident, it was my GM who “just knew” in advance, & she just packed everything up & moved 5 states away, where his company had stationed him, to take care of him. She ended up living there for 5 years, raising my cousin (4 at the time of the crash), enlisting family aid, directing care of her home while she was there. I always had some sort of spiritual link to her, I can’t explain it any other way. Despite her preference for boys, I was the one who “got” her when no one else (including my mom & 2 uncles) ever did (the cousin she raised was a close 2nd in his closeness to her). My GM probably had fibromyalgia. I remember she had chronic widespread pain, & such a severe case of divericulosis that she had to have surgery for it. Despite losing much of her sight, dealing with pain, & feeling just plain lousy, she was mentally sharp, VERY intelligent, & often aggravating because she had such insight into life that she was nearly always right! She also had an oddball sense of humor. She’d give us instructions for when she died, & add, “I swear, I’ll haunt you if you don’t do this!” I’d always remind her she didn’t believe in ghosts or haunting & she’d tell me she’d make an exception if necessary! 😉

    Mom & I bore the primary caregiving responsibilities for my GM, & later for my uncle in his last days. We also cared for each other. After my GM went home to the Lord, Mom was fine for a good while as DH & I traveled with the military. It wasn’t until our miracle baby & when she’d had some time to enjoy him, that Mom’s health started to decline. Eventually. our son would begin his caregiving career, but without the nearly 20 yr hiatus I’d have, since my husband & I both have different causes for our pain, but I’m on disability. DH isn’t, yet I care for him (it still amazes me they consider him less disabled than I am!). Mom’s gone to her reward 2 years ago now.

    Our son made a few close friends at our church & online. The ones from church were, like him, caregivers, as are or were most of his online friends. All of them are compassionate, looking beyond the external appearances. They are passing on the awareness that you don’t have to look sick to be sick.

    I will say that I’ve met ppl who don’t deal compassionately with chronically ill, & most of the time, I understand why. Those of us on these boards are generally the fighters. We seek other fighters, to help us deal with the progressive losses. We don’t embrace the losses as much as we deal with them & change our life plans to accommodate them. We accept them, yes, but we don’t embrace them. There are many others who embrace every decline in ability as more proof of how sick they are & how much they need a given person, how much help they need. Nurses call it “taking on the sick role.” These are the whiny, clingy, “You can’t leave me, I need you” people who are travel agents for guilt trips. They suck the life out of their caregivers. These aren’t people whom you help solely because you love them; they’re not people who’d go to a NH willingly & adapt somehow if you became too ill to care for them. They’re the ones who’d demand you keep them home regardless of how sick you are; the ones who tell you that you aren’t really sick & are just trying to take attention away from them; the ones who, at the first sign their caregivers aren’t fulfilling their every whim (e.g., by getting their nails done or seeing a movie or, God forbid, spending time with a friend-a sure guarantee of retribution), whine to the point where their caregivers get caught in a constant cycle of guilt, remorse, rebellion, shame, & return to guilt. These are the caregivers who don’t outlive he person for whom they’re caring most of the time (this sometimes happens with more positive folk like us, too, but it isn’t as common). These are the folks who don’t dare have a life outside the home.

    The only people who can talk any sense into those who’ve taken on a sick role are those who have the same thing or worse & have kept fighting, but even then, it’s not easy. And all of us are at risk & need to examine ourselves honestly, rejecting the temptation to give these feelings, these illnesses, that much power over us. It takes a lot of fighting to push this away, but we must. Compassion fatigue is a caregiver risk even with a patient who fights a chronic illness, we mustn’t wear out those who help us. That’s the 2nd important lesson we can teach our kids: Tough love doesn’t let a fighter cave in & take on the sick role, & more important, time for a caregiver’s own live, happiness, & well being makes for a better caregiver!

  • Annette

    This is wonderful and articulate “words of wisdom”, that made me cry also. What a gem you have in that sweet little boy! As I was diagnosed in 1984 and my daughters are grown (19 & 23), they know all too well that sometimes I can’t do what they or I want no matter how hard I try, and have learned to accept my limitations — even requesting that I don’t attempt to do so much. Especially after being in 2 seperate months-long comas (nearly dying multiple times), and then after finally coming home, to see my husband (their father) die within a few weeks of a massive heart attack. My oldest, who was 12 at the time, was such a blessing to me and my rock — moreso than many adults. As like her sister, my youngest too was my foundation and biggest source of strength during her teenage years. I am truly have the luck o’ the Irish to have such blessings!
    Also, I love the Irish Spoon! May I please copy/use that on this fine St. Paddy’s Day?

    Irish Blessing

    May the road rise to meet you
    May the wind be always at your back.
    May the sun shine warm upon your face.
    And rains fall soft upon your fields.
    And until we meet again,
    May God hold you in the hollow of His hand.

  • Ann B

    Wow, I couldn’t finish reading because it brought tears to my eyes. My baby boy (He’s now 17) is the same way. So sweet and supportive of his mom, even more so since my diagnosis in 2007. It’s going to be hard when he goes off to college in 2012. He is my rock and my comic relief and he does treat everyone fairly no matter how they act, look, or are different. I true unbiased kid. I did it!

  • What a great little guy you have there!

    I drive a bus in Chicago and it used to make me so mad when it took some people who looked perfectly fine, forever to step up on the bus so I could get down the street.

    Now after my diagnosis, I feel awful for feeling that way. YOu never know what a person is going through on the inside, judging from the outside.

    I’m very ashamed of myself. 🙁

  • It made me cry with memories of my own and thankful that you have such sweet children. I think mine like to forget me now they are grown. Happy St. Patricks Day

  • Sharon

    Agree 100% – my kids are 16 and 18, and they are keenly sensitive and empathetic people. They also have an adventurous ‘seize and be grateful for the day’ mentality. No way would that have happened without my hidden illness. I think it also helps when we can muster a positive attitude around all this physical distress. It made me laugh so hard when my son, then 3, parroted back to me one day when I was grumpy…”No Whining, Mommy!” You’re right, kiddo…I’ll sure try. 😀

  • Jackie Traw

    Wow…I cried like a baby while reading this article.

    I have this son too, but he is almost 21 years old. He can always see, when no one else does my spoonless days. He is always aware of my needs. I am so blessed that he is a compasionate caring young man. I contribute his caring nature to his own long term battle with chronic health conditions and when his finally became managable mine became out of control. This is so out of character for such a young man his age. I thank God each day for him.

    My family is my spoons when I am out!

  • Becky Bailey

    Wow, what an enlightening article, I too struggle daily and if it weren’t for my husband and daughter’s understanding, I don’t know where I would be today. I just recently after struggling with this disease for almost 3 years started suffering from the debilitating migraines and stomach issues, which make it almost impossible for me to even leave the house, the pain has always been a constant. I was all set to go to the doctor this afternoon, and while I was actually out of the house that was rare, I had a list of things I wanted to do, well guess what, a half an hour before getting ready to leave the migraine hit me, I found myself sitting in the doctors office with people staring at me like I was nuts when I was wearing my sunglasses indoors on a rainy day LOL. Needless to say the very long list of things I needed to try to get done, didn’t get done, I got a shot of Demerol and home to sleep I had to go. My husband just laughed and said just make me a list, I’ll get the groceries, such a wonderful man.
    I’m like you, my daughter has learned compassion for other people, when she see’s people parked in handicapped spots and they don’t appear to be disabled, she never questions it, on the outside, I appear to be perfectly fine, it’s the inside that is killing me, and you wouldn’t believe the dirty looks when I’m hurting and so tired I have to use that silly cart at Walmart to actually shop, sometimes it’s humiliating. God bless you and your little boys 🙂

  • Therese from England

    Yes reading your article was endearing, I remember when my children were so young like that and they would come and lay down with me for a bit, or they would happily watch the video in my bedroom while I just tried to rest from being tired and in great pain. My youngest of 3 children even though he is 10 years old, when he comes home from school he tries to tell me at least 3 times in the evening before he has to go to bed that he loves and appreciates all what I do for him. It’s great having children, they help me keep going.

  • Dottie Balin

    Great article, thanks for sharing. I enjoyed reading it. 🙂

  • Rachael

    I have an almost 11 year old, a 3 year old, and a 4 month old. It breaks my heart every time the 3 year old looks at me and says, “You go lie down on couch Mommy. You take medicine , you feel better.” This little buddy of mine watched me struggle to carry his little brother to term, watched me cry when I thought he wasn’t looking, throw up when the pain was to great, and would have gotten me the narco-skittles himself if only I hadn’t kept them under lock and key out of his reach…

    He still has a much keener view of my pain than I would like, and just this afternoon sent me back to “mommy’s couch” to take my medicine, feel better and, “you hold me?”

  • Patty

    After I wiped the tears from reading this, I sent it to all 3 of by beautiful children who have grown up with my Lupus. They have seen the good, the bad and the REALLY ugly and are the most compassionate young people I know! Proud to be their Mom!

  • I’d like to share a related point I have been trying to teach my own son. He is so rude when driving – honks and curses at any driver who does not take off fast enough (in his opinion) when the traffic signal light turns green, and etc. I have cognitive impairment from my lupus attacking my CNS and every once in a while just go completely blank while driving. Sometimes I just have to pause a moment when approaching another road because I cannot remember which way I am supposed to turn. I usually remember in less than a minute and am glad to wave anyone waiting behind me to go around me. If I can move out of their way, I do, but that’s not always possible. I have really been on his butt about this lately because he doesn’t ever take into consideration that the drivers in front of him may be old, may be sick, may be stressed beyond their limit. I remind him that he, too, will be old and confused one day (hopefully). I am growing a thick skin, but I can’t honestly say the honking and cursing doesn’t ever hurt my feelings – in addition to the fear and panic I feel when I suddenly don’t know where I am. We should all teach our children to really SEE the people around us and be slow to judge, slow to anger. Thanks for this beautiful post, I am emailing it to said son immediately. Love and soft hugs to you all.

  • Beautifully written. Makes one thankful to be alive despite the crappy hand dealt. I needed that today.

  • Crystal

    My friend has an almost 3 year old little girl who I babysit when I can. Because Doodles met me when she was only 1 1/2 she knows that sometimes I don’t have the energy to play or I hurt too much. What is sweet is when it gets bad she will check my ice pack for me and tell me when it is not cold anymore. I also love that when she goes outside with me she has to get her hat and sunglasses just like me.

    Thank you for reminding me that I can teach something to my baby on the way that most parents can’t do as easily.

  • Sherry C

    Such a good article! This articulated a rather new revelation that I have recently become aware of in my own life. I have spent years trying to spare those around me from knowing the extent of my inability to be like them. I’ve faked it, when possible. Used lame excuses instead of the truth to not do things I knew would be impossible for me. Basically, tried to cover up the reality of my existence. I know why I started this. Some of those closest to us say things like, “You’re always sick!” or “Everybody gets tired!” There’s no defense for words like that. The understanding that it would take to go so much deeper is just not there for some folks. Mainly, they just don’t care about me, they have their own agenda.

    I realize, so very late in the game, that I need to take care of myself. I CAN state my situation without guilt that it might make someone else uncomfortable.

    Good for you Sara that your young son has the capacity for compassion. That comes from what you’ve been able to impart to him. So much better than teaching him to always expect getting his way. Many 30 somethings don’t know this.

    Sherry C.

  • Lara

    Amen Sara!
    anything that give us pause, that makes us aware of the bigger picture is a good thing.

    Life is a gift beyond words, and it doesn’t end with suffering. It’s how you turn it around for good.

    la

  • Kirsty

    i have a 2 year old and a 4 year old, and i hear every word you are saying. i don’t have lupus, but i live with chronic back pain, migraines and chronic nerve pain down my legs and in my arms and hands, and sometime you just want to cuddle and kiss them when they just take one look at you and lead you to bed, with an incredibly innate understanding of your situation and how you feel. your story made me cry, as i truly know how you feel. god bless your children, your elder boy sounds like an angel. good luck! k x

  • natty

    wow, you have a fabulous little boy.
    Made me cry!.
    Happy St Patricks Day for tomorrow.
    Wishing you many Irish spoons

  • What A wonderful Article , I enjoyed reading all of it.

  • Ashley Morgan

    What a wonderful, truthful article! Excellently written, Sara! Wishing you many many spoons.