Monday, February 23, 2009

My Battle With Chronic Pain

Perseverance must finish its work so that you may be mature and complete not lacking in anything. James 1:4

These days chronic pain is my companion. It is the first sensation I wake to in the morning and usually the last sensation I fall asleep to at night. I didn't ask for my life to be this way, it's just something that has happened to me.

On better days - when the waves of pain part just long enough for me to come up for air - I'd call on the better angels of my nature to make a glowing spiritual conclusion about it all. Yet today isn't a better day. To tell the truth, I haven't had a better day in over a month.

To give you perspective, I can't remember a day in the last 4 years I didn't have pain. According to my doctor I have fibromyalgia, or something like it, no one knows for sure. It's not autoimmune, like rheumatoid arthritis. It's not degenerative, like, say Lupus or MS. For this I am thankful, especially since both autoimmune and degenerative conditions run in my family. God has protected me in ways I don't fully comprehend; this makes my heart swell with love for Him.

Still, I am in pain. I have never let you into this part of my life because I am afraid. First, out of pride, I don't want to be seen as "sick" instead of Stacy. Regardless of how I feel on a certain day I am still me and don't want anyone to feel sorry for me. Secondly, owning up to an Achilles Heel forces me to acknowledge the situation, which hurts, but in a different way.

Usually I deal and move on. Unfortunately, this month I've been land blasted. While my pain is usually isolated to headaches, upper back pain and arm pain, the location of the pain has shifted to my hips, legs, feet, and hands. This month there have been days when I can't stand for more than 5 minutes at a time. As a mom this is bad news, but manageable because I can sit and still accomplish many things - cooking while sitting on the counter, playing board games, driving, shoveling ice cream into my mouth, etc. Then that gave out, too. For the past 7-10 days I have been exhausted and overwhelmed by searing pain. Laying down has been my only option. That's not so easy to hide.

Pain meds? Yes, there are some I can take but most don't work. My doctor suggested trying a narcotic last week. I refused. To be frank, when we know I have a pain issue that will be life-long I can't start a regimen of narcotics at 34. I've never been addicted to drugs but I'm not going to say I'm above anything. Someone told me, "When you get desperate enough you'll give up." Maybe, but that's not today. Others use them with great success and I'm happy for them. For me, I can't go there now... Maybe it's pride. Or determination to overcome. Probably both.

Dealing with pain has brought depression into my life. And guilt - there's always the mommy guilt. That sounds like, "Why can't I be like other moms? I want to run with my kids, too. I don't want to give in to pain and be grouchy, short fused, tired, etc." And of course there's the idea that my kids will remember me as Mommy Malady.

Anything that is not critically important has fallen by the wayside. When I want to be a person of my word there have been promises I haven't been able to maintain because I just can't. Then, I worry about being seen as inconsistent or unreliable. I know, I know. I shouldn't worry about what others think, but I do. Not long ago I had a Bible study leader say to me, "I've noticed Dan and the kids at church without you. That's wrong. I know you say you have pain but it can't be that bad, can it?" Slap! Though I think that's judgemental and shortsighted, it hurts to know I'm not the only one questioning myself.

Many of my disappointments with the circumstance would cease if I'd give up the idea that perfect is attainable. What I'm coming to understand is that perfect is best defined as "something I don't have right now". What I mean is, on any given day, pain or not, I've given in to the idolatry called covetousness. I want what someone else has. It's like there's this buffet of all things bright and shiny and good just waiting to be had but I've been denied access. One person noshes on "no depression" not realizing I'd love just a bite of what's on her plate. So I shut her out to protect myself. (Then wonder why I feel isolated...) Another person ladles "pain free" into a bowl and heartily eats. But somehow my ladle is just a slotted spoon. So I get mad about what I don't have, begrudge others for being blessed, and sob over all things unattained. And somehow, it never makes me feel any better.

There is only one way out: daily perseverance. The discipline of perseverance (or patience) can be hard work to maintain. It's not glossing over the circumstance, it's remaining faithful regardless of it. In other words, it's remembering that while the slotted spoon may not hold all things, it still catches meat when given a chance.

This is my struggle. It may show up as pain but it translates to whether or not I embrace "my grace is sufficient for you, my power is made perfect in your weakness". (II Corinthians 2:9)

Do you struggle? Think you'd share with me, and others here, what your struggle is? If you can't share your struggle, how do you embrace Christ in spite of it? Your answers would be so encouraging. Maybe they'd be a resource to all of us.

P.S. Amazingly, I have not lost my sense of humor. Though my posts have not been as meaty you guys still show up and that has kept me going. Here and on facebook (Stacy A. Small) our community has blessed me over and over. Thank you so much! You all are amazing. I hope you are blessed too.)

42 comments:

Donna said...

I struggle.......with never feeling like what I've done or said is good enough and discounting it if someone actually says that I did do good enough or better......

and to those who question your pain, especially those in the Body, I commend you on not inflicting pain on them......

grrr....

wv: flingl

I'd like to flingl all those of the Body who shoot the wounded rather than lift them up....

Ashlie Skidmore said...

thank you so much for sharing this. i've been struggling with "uniditentified" pain for about a year - not quite to the extent that yours sounds like, but bad nonetheless...and even though i'm glad that there's "nothing" wrong with me, that also means it can't be fixed.

i got prayer at church yesterday for my hands, and for the first time in a year, they don't hurt. will this last? i don't know. just grateful for the reprieve.

anyway, i'm very grateful for you sharing about this and what you've learned and heard from God about it. it is a great encouragement to me.

Lynn said...

Oh Stacy... I have been dealing with pain for around three years now... always something new... never anything identifiable. In fact, I just made and appt. with an "internal medicine" doctor in hopes that they can piece it all together for me... no one seems to be able to do that... I have been diagnoised with OA... yet I have may symptoms of RA... and fibromyalgia symptoms, maybe???? I awaken to pain daily... hands... feet... back... and lately it is in my left chest wall, and radiates down my left arm... but it doesn't seem to be a heart related thing as my pulse remains steady...

AND... in the past two weeks I am just exhausted...plain tired. I get up... want to take a nap... do a few loads of laundry... want to take another nap... fix supper... want to take a nap...

Are there days when I am depressed??? Oh yeah! Many... are there days when I just want to scream... you bet! Do I want to be able to do the things that others seem to do so effortlessly? Yep...

But I can't... and it is hard to explain to people... even family. While on one level there is understanding... I have heard that if I "just got more exercise" I would feel better... okay... so do I feel well enough to exercise? No... and when I do push myself to, are there disadvantages... yes, often.

Wow... sorry this is so long... but I want you to know, I don't take anything major for the pain either... don't want to depend on something that is only masking at this point... and I am 50! I just depend on prayer, and the fact that I know that God can give me the strength to get through this.

I will say a prayer for a time of remission for you... for a time free from the pain...

Stacy from Louisville said...

Ashlie and Lynn,

I will pray for you both, too. Thanks for your encouragement.

Love,
Stacy

Chandra said...

I'm so glad to see my mom (Lynn) posted her story. I was just going to ask her if she had read your blog today and hoped she would share her story.

I've struggled with anxiety for nearly 2 years. I spent everyday for nearly 1 year in a panic. I got to the point where I really thought I was going crazy. I finally gave my problem up to Jesus and he healed me. I still deal with anxiety but not like I did before and when I feel anxious I pray.

I also have constant ear ringing. Which sounds silly but my ears have been ringing nonstop for nearly 1 year. I'm learning to live with it but whenever it's quiet the ringing gets louder and louder and I can't ever get away from it.

I've watched my mom from the start of her pain. It's been a long road for her and many dr. appts. It's something that I don't really understand. I empathize but I've never felt pain all day everyday and I can't imagine what that would be like. Ear ringing just doesn't compare.

God will give you the strength to persevere.

Beth E. said...

I'm so sorry that you have to deal with such extreme pain. Shame on the Bible study leader!

I'm praying for you.

Blessings...
Beth E.

Helen said...

I get unidentified aches and pains, but I am 39 and grossly overweight, so that is to be expected.
My deepest struggle is with infertility. I have wanted to be a mother since......forever, and I never will be. Adoption is harder than it sounds. I can't go into why right now. I often envy people with small children. On holidays, I have to go to Mass at 7:30 am so that I don't look at all of those precious children and find myself shaking my fist at God again.
I am so sorry about the bible study leader who treated you like that. That was unmerciful. That is no way to encourage someone to come to Church. Tellling you you are missed, asking if you could be made more comfortable in Church somehow, offering to help you with some other task to give you more energy to come on Sunday would have been kind. How she acted wasn't. Give me her email address, and I will give her whatfor! I'll even forward it to you first so you can proofread it!
My mom takes Lyrica. It has helped her tremendously. I am not sure if it is a narcotic. The insert says some side effects are possible, but she hasn't had any. I will pray that the doctors find something to help you. I am going to add you to my cyber friend prayer list on my blog, if that is okay. Let me know if it isn't, and I will take your name down.

wv: anrebel I'm anrebel and a bad grammarian to boot!

kg said...

I have rehumatoid arthritus and a couple related autoimmune things.
I was diagnosed a couple years ago---had problems for several before that. Days without pain, I can't remember really---but they kind of have a glow around them! I am 47.
I have two teens and a 6 yr old.
Sometimes I feel bad that the younger one has such an old mom. When she was born, I didn't feel old!
But, in the "good old days" I was one of those very independant, work till you drop types. I am learning to allow myself to ask for and graciously recieve help sometimes. (that's hard!) I have had some dear friends and family glad to help me, and others that just don't get it. Some that seem kind of fearful that they might hurt me if they touch me, others that don't make any allowances for disability.
I still think that God is able to use me this way. In fact, I probably am slowed down enough to listen more and depend on Him more. That's not a bad thing.
I am learning to pay some attention to my body. I didn't used to do that----denial has been my life-long friend!! It is hard to balance noticing what my body needs me to notice without focusing on all the stuff I just would be a great big ball of fuss over. To be active as much as I can, but rest when I need to. To decide whether an activity is worth the aftermath. Some are! Some are not.
It takes practice. Sometimes I don't get it right. I will have another opportunity to try again!
Today I am going to the Dr. I hate that! That is submission to me. I am going to have lab work done. I hate that! It is a struggle for me, but they don't realise it because I behave. But I hate it!
Meanwhile, I do know that God is in the midst of all of this with me, and that I still have value to Him and to my family. Even if I can do nothing but love, that is a big something. And I have plenty of time to do it!

teamstrand said...

ya know what stacy? i just think you are wonderful. perfectly a wonderful friend.

your bff

Mella DP said...

I suffer from an autoimmune condition - something akin to a mild presentation of systemic lupus - and, actually, am most thankful that I don't often have to deal with constant or significant pain (some people with similar conditions do, but I usually don't). And the last several weeks have been rough for me, too - I just slept through most of the weekend, and I'm praying this week at work is less of a struggle than the last couple. Thankfully, I have nobody to take care of but myself, and the people around me are understanding.

I've also struggled with fairly serious depression for even longer than I've been dealing with the physical issues. Rather than envy of the healthy, my direction of disintegration is nihilism. As in, "It doesn't matter, we're all going to die eventually anyway," and "If God hadn't felt the need to create the universe in the first place, I wouldn't have to put up with any of this." I realize how horrible that all sounds, and I know where it runs wrong, but to my diseased thinking, it feels like it makes perfect sense most of the time.

Regarding comments like the one you received, I don't like to let that slide. I mean, obviously, there are times when turning the other cheek requires just letting things slide. But if someone is bringing that sort of attitude into church with her, she's going to hurt a lot of other people more than she's going to hurt me.

Janie said...

Thank you for being so candid, Stacy. I feel a more kindred spirit with you every word I read from your blog.

I grew up with a mom who suffered (and still does) from chronic pain. She had good days and bad days. I remember the good days vividly & cherish the fun. But God even used the bad days ... watching her battle and do it with such grace & beauty ... I learned independence, compassion, empathy. I have no doubt that as much as it stinks, your kids are watching and learning gorgeous things about God and themselves in the midst of your pain.

That said - I pray 2 things for you:

1. Remission! My mom experienced this when I was 14 and enjoyed it for dozens of years to follow. Old age and other factors have now taken their toll, but she had some very good years.

2. Protection from satan & his desire to depress. I watch my mom & I watch my best friend battle Fybro. I see many days when they have to lay in bed because there's just no energy. I pray on those days for you that God will pour over you with love from your man, your kids, your friends and His word so you don't isolate - can feel very loved and connected - and kick satan in the you know what.

Praying Psalm 18:16-19 for you today! May you enjoy His spacious place!!!

Beth Ellis said...

Hey girlfriend. I have been diag. by 2 docs with Fibro. I also have a pseudotumor (too much spinal fluid in the noggin), and am waiting on twomore diag. of diabetes and Parkinsons... I do know pain :) What have I come to realize in this hellish struggle... that this is my life. I'm like you, keep a good sense of humor, try to be positive, but stop fighting it as if it were something strange happening to me. So I've got a itsy bitsy taste of what Job went through... maybe I am being put through the fire... my response HAS to be trust. I have to have hope that one day, I will be free. Many has suffered 1,000 times what I suffered and they did it WITH a choice, like the persecuted Christians. I have also been giving myself permission to be sick. I missed over a month of church (I haven't missed a month over a lifetime :) but when I am feeling strong, I go. I don't have to prove my illness or convince any ridiculous doctors... I'm simply ill and until a new hope is offered, I will accept and rest in my illness and I hope to be an example of faith and not fear. You hang in there :) If you were meant to be well at this time... you would be. You're doing great!

Ryan B said...

Thanks for sharing Stacy. I will be praying for you as always.

I have found myself to be struggling lately. I'm only 18 but I feel as if I am having a midlife crisis or something. Regrets and nostalgia from years past have been haunting me daily and have been causing severe lack of sleep. The switch to college has been surprisingly easy except for the fact that I know things will never be the same and the friends that I have had for the last 10 years are all split up. The glory days of high school will be missed. I miss the usual routine of football, then wrestling, then swim season and the friends and adventures that came with each. It's just hard to look forward to find more life adventures and not miss the ones in the past so much. Just the other day someone mentioned that about 20% of our lives are already over. That is pretty ridiculous to comprehend. I try to think that with a decent salary after graduation and advances in modern technology, who's to think I couldn't live to be three, four hundred years old? Hey. It can happen. :)

Julianna said...

I struggle with the symptoms that I have as a result of endometriosis. This morning I was in so much pain, I was balled up on the floor of the bathroom then almost passed out in the shower. The first line of treatment is birth control, but we want more kids, so instead my husband and I are trying to get pregnant. We were going to about this time anyway, but now I have the pain in addition to the disappoint month after month. I know that this is all part of God's plan and that He will take care of us - in this case me in particular - but it does get hard when mornings like today happen. A pregnancy would at least stop the symptoms for the duration, but it could also reverse the condition.

I'm just praying for guidance/wisdom for the doctors and lots of patience and perseverance for me.

Will add you to my prayer list. My mother-in-law suffers from fibromyalgia, so I'm familiar with the pain you are suffering and hope that more comfortable days are ahead for you. I admire your aversion from narcotics and pray that the Lord will reward you for trying to avoid a possible addiction.

Catherine said...

Oh, Stacy. I could have written most of that post. I have chronic headaches and frequent migraines that required that I quit my job as a family doctor three years ago. I manage to get stuff done, but it never feels like enough. I try not to blog too much about my headaches because I don't want to depress people, but it is soooo nice to read that I'm not alone in this struggle. Please keep writing - even the serious stuff.

Skerrib said...

Poor, sick Stacy!!!

Kidding! I'm kidding!!

My "things" are depression/anxiety and back-stuff. The back stuff started in high school. For almost 10 years I went from doctor to doctor, trying to figure out what was wrong with my back (x-rays, bone scans, etc), and came up with zilch. Finally a DO who specialized in spinal stuff diagnosed me with SI joint dysfunction. So now I do things like physical therapy & core strengthening, and most of the time I feel fairly normal. It's something I'll always deal with, but I am so grateful to know how to deal with it. I know the frustration of "we can't find anything wrong," or worse, "there is nothing wrong," when you know otherwise. It's the pits.

The depression/anxiety have other roots, but when my back stuff flares up my depression skyrockets (spirals?). So it can be a balancing act, keeping both in check. As much as I don't like drugs, I do take happy-pills for the depression. Someday I hope to be in a situation where I can do some serious work on my issues and maybe get off the meds...but that's another story in itself.

Interesting you bring up the humor. It seems that when I'm struggling the most, that's when people think I'm funniest. Maybe I should go saw off a leg or something...

Stephanie said...

Stacy, I was diagnosed with RA ten years ago. I have struggled with pain and feelings of inadequacy off and on since my diagnosis. I have to remind myself often that God has allowed this struggle in my life. He has allowed me to have this searing pain, fatigue, lack of mobility, and sometimes lack of ability to function at all for some reason that I will not know on this side of Heaven. What I do know is that He is here for me to lean on and to cry out to when the struggle seems to be bigger than my strength to get through it. I have to remind myself that God is way bigger than RA. If nothing else, living with this disease reminds me every day of how much I need to rely on God and not self, because my human self is so broken and breaking down more and more each day. When I can put aside all of the thoughts of inadequacy that I have and behold my Lord and Savior, RA seems to lose a little bit of power. I am so sorry that you struggle with pain, it is so hard, I know. Thank you for being courageous enough to share your story. It seems that It is in our brokenness that God uses us the most. Remember that God is using you in the lives of your husband, your children, and all those who come in contact with you; despite how you feel. God is bigger! Please know that I am praying for you and that you if you ever want to talk I am willing.

Stacy from Louisville said...

Skerrib -

SFL does not endorse leg sawing off. It's messy and inconvenient. And what would you do with the left over extremity?

jenn said...

I feel totally unqualified to comment on this post, but I still want to give my support. I don't deal with any bad pain. I can only imagine how awful it would be. Saying a prayer for you...

Anonymous said...

I struggle with being single. I know that God has given me a desire for marriage and children. But, no man yet. I've had to watch friends get engaged, married, and start their family. Each wedding and birth is harder and harder to attend and celebrate. It's become a physical ache. For so long, I have ached for someone to hold me, to cuddle with and sleep next to at night that it's gotten to the point that I can no longer tolerate physical contact. I scream at God sometimes because I have been praying for 5 years that He would bring me and my husband together. In that time I've had to watch 6 friends get marry, and 3 of them have children. In those 6 years, not a single man has shown any interest in me. I'm sick of the advice and the "You're next!" "It'll happen soon!" "All in God's timing" bullshit. I'm becoming bitter, and I don't like that. My devotion has waned, and I don't like that, either.

sundog said...

I needed to hear this. Lord, forgive me when I question anyone’s suffering. Your post was deeply convicting. I hope I have never said anything like the Bible study leader, but I am certain that I have been guilty of questioning thoughts, even wondering... can it be that bad?

I battle with hormone surges at various times of the month… yes, the dreaded PMS. There have been times that I have been irrational, emotional and almost completely out of control. Can you say psycho? I went through years of guilt and self-condemnation. I now live more at peace. It’s been a long process of learning how absolutely and freely God loves me. He loves all of us in spite of ourselves. Even now, I’m sure I can’t even begin to comprehend this grace, mercy and love.

Over the years I learned to recognize my symptoms and understand what was going on, which helped tremendously. Taking vitamins also helped, as well as taking proactive measures when I need to. There are times that I just have to go to bed for a while and things will settle down for me. Sometimes you just have to do what you have to do… for yourself and for everyone else… don’t ever forget that. It occurred to me how ironic it is that I would ever think like I confessed at the beginning of this post, because I have had similar treatment regarding my own struggle. When we haven’t experienced the problem, we just cannot relate to it.

The closer I come to Christ, the more wretched I realize that I am… even without PMS. My selfishness and pride alone are enough to bring down the house. Now, whenever I become aware that I’ve fallen down again, (and I don’t even have a major challenge like chronic pain to help me down) I try to remember to confess it specifically... naming my sin... calling it what it is... and in agreement with him, admit that it is wrong and no good for me or anyone else... and then I move on. No more wallowing, no more beating myself up… well, almost… but it sure is getting better.

God has blessed you with blessing others and I pray he will bless you with healing. Thank you for being a blessing to me. I pray he will give you peace and that you will remember that he will supply anywhere you feel you fall short, for your children or anyone else.

wv:comelans

come lay nasty stuff down

Stacy from Louisville said...

Anon @ 6:03

God bless you. I wish we could talk face to face. I ache for you.
I don't know what else to say but I really care about your pain, too.

The love of Christ to you,
Stacy

Neyhart said...

"Many of my disappointments with the circumstance would cease if I'd give up the idea that perfect is attainable." Yup. Me too... I don't know how to get there though... well, I mean... lots of prayer... but yeah... and you already know what I struggle with... I don't know if I knew all of this - but I do now and will be praying accordingly.

Anonymous said...

I want to punch the church lady in the face. Surely she realized what a jerk she was as soon as the words came out of her mouth.

heartafire said...

What a blessing it was to read your post, and especially all of the letters that followed. It is true that there is a world of pain out there, and I think it truly lifts the Christian when we feel we're not alone.

I don't struggle with physical pain, but definitely with emotional and spiritual pain from time to time. I am quick with my words, I am insensitive to how others feel in the heat of the moment, I am many times more interested in winning a point or being right, than I am in the kingdom being built, and these things cause serious pain. Sometimes I think physical pain might be more bearable (though i do not wish for God to prove this to me one way or the other!) Instead, i am grateful today, for mostly feeling good physically.
It was a privilege to have this glimpse into part of you, Stacyfromlouisville, as well as to these other commenters. Donna started it off so beautifully I almost didn't comment--and Helen, RyanB, and others I feel like I "know". I mean it: it's a privilege to read through this list and pray for people, and for myself.
I love the thought that Christ meets us right at that very point where we say: "I can't go on---I can't stand this--I need You."
"His power is made perfect in our weakness" (don't know the address, but somewhere in the NT)

WV: "quitt," pronounced "quit-T"
If Jon would quitt spelling his daughter's name "LE" and spell it "Ellie" then people would quitt thinking of her as The Acuff.

Da Mouse said...

Thank you Stacy for posting this. It has actually lifted me up a little. The night before last before I went to bed I cried because of all the meds I have to take. At this moment I am forcing myself to regain my composure because I am at work. I usually try to put on a brave face and not let anyone know what I am really going through. I only show my true feelings and hurts to my husband whom I love so much and he is so caring and understanding to what I am going through.

Ok, enough with the vagueness. I am 24 years old and have been diagnosed with low-blood sugar (in my teen years), high blood pressure, mitro-valve prolapse, a goiter, and possibly endometriosis (has not been determined, but I am being treated for it). Oh, and not to mention the allergies I suffer from year round and sometimes I get stomach cramps, nausea, and very sick to my stomach for what seems no appearent reason. It is hard for me to even think about all those things most of the time. I usually go about what I normally do and try not to think about it. But, once in a while it hits me and I feel very depressed about the situation. One of the hardest things about this is sometimes I feel like I am 60--especially with all the medications I take--when all I want to do is feel 24 and go to sleep without worrying "Oh, man! I forgot to take my pills again!"

However, I am grateful now that I have insurance to cover the bills that come in on a regular occurance, but that still doesn't make me feel any better about going to the doctor. Like you, Stacy, I have some pride about it and I worry about what the doctors will think of me. I worry that they will think I'm just making it up or that I'm being a hypochondriac. I even asked one of my doctors if she thought that about me. It's silly now that I look back on that, but I just want them to believe me. I also just don't want to go to the doctor with a laundry list of symptoms and illnesses that I go through, but at the same time I want all of this to be figured out. Then, I worry about what my manager at work thinks of me when I have to go to the doctor so much. We had a girl who used to work here and she was out sick a lot, too, and I remember the things said about her. I just don't want that to be said of me.

Again, thank you for posting your struggles. And, to everyone else who posted their's, thank you. I will be praying for healing, strength, and understanding for all of you. :)

Erin said...

Add me to the list of fibromyaglia suffers. I've been dealing with it for about 8 years now and I'm still in my 20s. It's a constant and uphill battle, but I consider myself one of the lucky ones. I'm able to hold down a full time job and cut out the narcotic pain killers. I can't stress enough the importance of finding a doctor who will work with you and your pain management. Everybody is different so this is not a recommendation, but these days I find relief in acunpucture and tai chi. I've gained a great deal of my life back having many more good days than I used to. It's amazing the avenues God guides us down.

And thank you Stacy. This blog helps keep my spirits up on the bad days.

Gina said...

Long time lurker, first time commenter. Thanks for being so honest...this helps me understand what some people who are very important to me are going through in a way I didn't before. You've helped me know a little better how to relate to them. Thanks for being honest and letting God use you through that.

David said...

The minute I started reading your post, I thought of a marble analogy that I'd read online to describe chronic pain. When I tried to find it again, though, I ended up only discovering a really similar "spoon theory." The story is about a woman with Lupus and her trying to explain to a friend what having chronic pain feels like.
Maybe you guys have heard of this, but I hope it helps encourage you all.

http://www.butyoudontlooksick.com/navigation/BYDLS-TheSpoonTheory.pdf

(or the easier, not-so-direct link: http://www.butyoudontlooksick.com/the_spoon_theory/ )

Thanks for sharing, Stacy!

Leanne said...

Oh good. Somebody else posted the spoon theory. I have two friends with fibromyalgia (and one is going through hell right now). Neither of them are Christian though (I know, I have non-Christian friends, shocking isn't it) -- although actually, I haven't had that conversation with one of them. Ahem.

Anyway, maybe this is your opportunity to educate your congregation -- and you can talk about how the gifts God has given you, such as a great sense of humor, compassion (hey, don't think I haven't noticed you've been thinking of others in need and not yourself) and so on to deal with this chronic issue.

Also -- if you're missing church, let someone in the office know. I don't know if your church is big on communion -- but if so, you should be able to ask for a visit -- and maybe there's a healing ministry going on. Our church's healing service has people mostly with chronic illness and they are a tight support group for each other, thanks to God!

Keep track of those spoons!

Diana said...

Wow, thanks for being so vulnerable and sharing such a deeply personal struggle. I think the body of Christ would be so much stronger if we were more open about our struggles and shared each others' burdens. Unfortunately we get responses from people like "It can't really be that bad" or "You have to have more faith, just trust God more" or "Are you praying enough?". That shoots us down and makes us feel even worse about ourselves.

My husband and I went through Celebrate Recovery at our church as part of our preparation for marriage. We knew we had hurts in our pasts and thought it'd be wise to try and work through our own hurts before we were married. It made a huge difference and we also found a safe place to share your hurts and struggles where people just want to love you and help share your pain so you're not alone.

When people find out we're a part of that ministry, they sometimes ask "What's wrong with you?" Or get really uncomfortable. Sometimes I list things like depression, low self esteem, a strong fear of abandonment that makes me scared my wonderful husband will leave me every time we disagree (he never would!). Other times I say "What isn't?" Or that I have hurts in life like everyone else. My husband and I have now started a teen version of CR at our church in the hopes that we can help a new generation learn to talk openly about their struggles and deal with them healthily.

I hope your openness about your physical pain and the emotional pain it causes is met with love and compassion, and know it will minister to others who have been afraid to speak of their own struggles.

Jennifer said...

@Da Mouse

Hate to play doctor in Stacy's comments, but I have to put this out there in case your docs haven't thought of it...have you been tested for celiac disease? (Autoimmune disease in which the intestine cannot process the protein in wheat, rye, and barley.) Your mysterious gastrointestinal stuff made me think of it (I was diagnosed in 2001). But also, celiac can manifest in all sorts of strange ways, and the symptoms often do not seem related to each other or to a gastro problem, which is why it is often not diagnosed in a timely fashion.

Stacy, thank you for your transparency. My husband has had chronic neck pain since he was a teenager. It is hard for me to relate, especially since he is the stoic type and only complains when it gets *really* bad. I'd love for you to post something about what is helpful and what is not to people with chronic pain.

stacie said...

Stacy -

Thanks so much for your transparency - about your pain, and also your comments on SCL about your marriage. You are SO right that we need to be open with one another.

Everyone has SOMETHING - some secret past, some hurt, some sin, some pain - and when we pretend we don't, not only do we forfeit the love and support we might receive, but we also keep other people from opening up about THEIR "hurts, habits and hangups" (to borrow a phrase from the Celebrate Recovery group).

How many people come to church every Sunday pretending to be "fine" because they believe everyone else really IS fine? I used to look around at church and think that all those smiling people really DID have perfect children and perfect marriages, perfect health (or if they didn't, they were perfectly at peace about "waiting on God" for healing), because we all walk around being "fine" all the time.

I think one of Satan's best lies is the idea that "I'm the only one" who struggles with sin, or depression, or anger, or...whatever. When we finally open up to someone and have that "Really? You too?" moment, much of Satan's power is lost, as we are able to build one another up and bear each other's burdens, as scripture teaches.

I want to kick your Bible study leader in the shins (in Christian love, of course!) for saying what she said - or at the very least, force-feed her some of the "bean boozled" jelly beans you sent me!

I will continue to pray for you, Stacy!

stacie said...

Okay, I've already left a comment, but the next wv that popped up was "yokest," and I just had to comment, in light of it being the tail-end of "love month" and all the talk in Corinthians about being "yoked" (equally, or otherwise).

yokest - the best potential marriage partner in the room

"She looked across the table at the Church Singles' Potluck, and there sat the yokest guy she'd ever seen. She knew she'd have to work quickly to snatch him up before the other girls saw him."

thisgirlsjourney said...

Thank you so much for posting this. I love it that the internet is a place where we can be honest, even if in real life and in our churches we can't.

I'm trying to overcome something of my own a the moment which hopefully I should get better from but a big lesson in it all for me has been to not worry about what others think. Because of my brain injury sound can sometimes seem really loud to my tired brain so church can be really, really hard and not at all uplifting. I took a long time to get back and I have to have earplugs which means I can't sing as then I would only hear myself singing off key and perhaps do it too loudly! Not good.

But it is a battle and in more vulnerable situations I also had to worry about what people would say to me, seriously when I was worse it could take me days to get over a poorly chosen comment or piece of advice.

I think it is causing me to lean on God further and seek His approval only. I think it is also preparing me for things in my future. Pain is not good though, it makes you grumpy and short with people and probably a person you just don't want to be. Not many people will understand you. I remember when my father had his accident a wise family friend said to mum that perhaps about 10% of the population were ever going to get what you are going through.

I think that's a good thing to remember. Hard in practise though.

Philippa said...

Thank you, thank you so much for this post.

I've hopped over to your blog a couple of times from SCL, only to forget about it for a while and then re-visit, hence this being a few days after all the other comments!

I've suffered from chronic daily headaches since January last year. I've woken up every single day in pain, and although the doctor has tried various drugs etc they can't seem to find any cause. I'm 19 and halfway through my degree, so trying to continue doing all my work and getting involved in uni life as much as possible. Recently it's become quite disheartening as an appointment that I thought would offer a solution didn't, and a couple of comments from friends hinted that they thought I was exaggerating the pain.

Strangely I find one of the hardest things is when people that I know do care ask me how it is: I'm sure they don't just want to hear how bad it is again, but then I don't want to lie to them and say it's fine when it isn't! I appreciate them asking so much and always feel like I should be able to give them the 'right' answer.

I have been so inspired and encouraged reading this post, and all the comments. Thank you for helping me to realise that I'm not the only one struggling with constant pain by any means! And for giving me a good kick to get out of my selfish little bubble about it all ;)

I pray that God will be strengthening you and building you up through this.

2 Corinthians 1:4 has been a constant encouragement to me: '...the God of all comfort, who comforts us in all our tribulation, that we may be able to comfort those who are in any trouble, with the comfort with which we ourselves are comforted by God'.

Avian said...

Stacy,
I don't know if you have heard of this or not, but aspirin/salicylates and fibromyalgia may be related. That is, aspirin/salicylates may exacerbate the fibro. I have no studies to back this up. But it may help you.
I will be praying for you and the others who have posted. Chronic pain/health concerns are a struggle.
Avian

fb said...

I know I am late to this - been a busy time for me.. I also struggle - not so much physical pain - just getting older stuff. My real struggle is with feeling of unworthiness. It is so easy for me to mentor the younger girls helping them to see who they are in Christ and how very much He loves them - but I have such a hard time translating that to my own life. I have been dealt some hard emotional blows from one I love greatly. Things are fine now - but it really is true that you can never take back those words. Satan loves to ease them into my mind and keep me down. It is a daily decision on my part to believe the truth or believe a lie. In that aspect, I know I am lucky as compared to those of you struggling with physical pain day in and day out. I will lift all of you up in prayer.

katdish said...

How are you doing? Five years ago, I had never even heard of fibromyalgia. Turns out, two of my dearest friends both suffer from it. One is our drummer. He doesn't complain often, but I can see the pain on his face at times.

That just really stinks that you're in pain so much. You've mentioned it before, but I suppose I never realized to what extent. If there's anything I can do to help, please let me know. Until then, you are in my prayers, girl.

Gabrielle Eden said...

Stacey - I'm sorry that this is so late.
I will pray for you.

There is so much sickness in the body of Christ.

We need strong conviction about Jesus' gift of healing.

Anonymous said...

Stacy - thanks for being so open about your struggle. Mine is ovarian cysts that cause pretty severe hormone swings - because they're so large and can be quite painful, I'll probably have to have them removed in the next few years (I'm 24). The thought of going through menopause before 30 is... scary, to say the least. And since I'm single, it's hard not to think about the possibility of no hubby/no kids - yikes. I definitely understand not wanting to reveal too much, believe me - I SO feel you on that one. So I'll pray for you, and please pray for me, and we'll surround each other with healing prayers.

Amelia said...

Stacy,

I know this is from awhile back but - you are doing the best you can, everyday, to be a happy and fun mom and a loving wife and you even take the time to share your awesomeness with all of us.

You do not need to be at church to be close to God, and my heart aches that someone would say you do, that it's WRONG not to. A church is a group of people. You and Dan and the kiddos are your own church every time you pray as a family. I'm not saying don't go - but don't beat yourself up when you can't get out of bed. It's not any better to go and spend the whole time in pain and unable to focus on the message.

I don't know about pain, except that I don't think I'd be able to do half what you do living with it day in, day out, and I probably wouldn't be strong enough to say no to the really strong drugs.

I do know depression. I've struggled with it for nearly 10 years now, and I know that jealousy - that "I wish I could be 'normal' and happy like her" feeling. But you know what? I'm not her. I'm me. And even the sadness that I feel is part of me - I don't like it, I do my best to put it aside and focus on what I can control in my life and I wouldn't choose it, but there it is.

Thinking of you.