Living with Chronic Illness

Living with chronic illness, my daily "to do" lists don't look like most.  I can't plan much because I don't know if I'll be able to get out of bed that day, how much I'll be hurting, or what level of energy I might have.  With a husband and five active children, there are plenty of things added to each day.  I have to keep my own plans simple.  Very simple.  Many times this has left me feeling like a failure because I can't do as much as others.  Or overwhelmed and paralyzed because there was so much to do and I didn't feel like I could do anything.  As a therapeutic project, I spent a lot of time examining my life and figuring out what I could realistically expect to get done each day.  This way, even on my worst days I can feel like I've accomplished something.  It helps.

Worst Days:

• eat something
• do something - anything
• try to communicate current status to family

Bad Days:

• eat
• make my bed
• put a bra on
• spend time out of my room, at least five minutes
• communicate with family

Down Days:

• eat
• make my bed
• get dressed
• open curtains/windows
• shower if needed
• brush teeth and hair
• try to spend some time outside, no matter how small the amount
• let family visit with me in my room

Iffy Days:

• eat
• make my bed
• get cleaned up enough to leave the house
• open curtains/windows
• leave the house
• talk to someone outside of my family, even if only online
• clean something - anything
• shower if needed
• spend time with family outside of my room, no matter how small the amount

Good Days:

• eat healthy food, try to stick to schedule and track
• make my bed
• get cleaned up enough to visit with friends
• open curtains/windows
• drive somewhere - anywhere
• go for a walk or do yard work
• listen to a conference talk/devotional or read church magazines
• shower
• pick up the living room
• talk to someone outside my family, in person or by phone
• try to stay out of my room

Great Days (add any of the following to Good Day plans):

• do something creative (write, draw, color, crochet, flute)
• do something that feeds my soul
• do real exercise
• meditate
• vacuum the living room
• straighten the dining room
• clean the kitchen, including a load of dishes
• do a load of laundry
• write a list of what's been weighing heavily on my mind
• run errands
• shop for fresh fruits and vegetables
• play a game with someone
• clean for 15 minutes - no more
• do deep breathing
• do calendaring/scheduling
• do budget/bills
• spend more time out of my room than in it

Every Night:  choose one thing I want to get done the next day; forgive myself if it doesn't happen
Every Day:  pray and spend some time in the scriptures, no matter how small the amount
Bonus Points:  talk to my husband in person and make some kind of physical contact

I try to make my bed every day because it makes me happy.  Anything beyond what's on these lists would be a major accomplishment and might cost me the next day.

Mother's Day Sucks!

It's that dreaded time of year again.  Mother's Day.  Those two words strike fear in the hearts of men everywhere.  (Is it everywhere?  Is Mother's Day recognized in other countries?)  And so many men think they are the only ones who dread this day, but they are wrong.  So many women dread this day, too.

I know there are women and men and children out there who are looking forward to this day.  I'm happy for you.  I would wish you a happy Mother's Day, but you don't need that.  You will have a great day full of love.  Because somehow you've found the magic tunnel that leads to a world of joy and celebration and giving and love.

The rest of us live in a fallen world full of heartache and unmet expectations.  I rejoice in the fact that some of my friends will have a wonderful day this Sunday.  I ask that you try to understand why so many others don't.  Please don't judge.  Please don't tell us to make it a great day.  Please don't throw sunshine and Disney songs at us and tell us to cheer up.  For so many women (and many men) today is a day of pain and mourning.  That should be respected.  It should be honored.

I expect Sunday to be a good day for me.  A couple of years ago I was able to redefine Mother's Day for me in a way that's really helped break through that dark cloud.  Even still, there are treacherous areas for me on that day.  I have to be careful.  And my associations with Mother's Day aren't nearly as tough as so many of my friends.  They are the ones I'm thinking about at this time.  They are the ones I am worried about.  They are the ones my heart is aching for.

There is my friend whose mom knowingly allowed her to be sexually abused for years.  Who barely noticed her daughter.  This friend is a wonderful mother and I hope the day is about her.  I hope she is able to celebrate her own motherhood.  But I can't imagine there isn't a twinge of pain for that mother she doesn't have.  Whether we like it or not, whether we fight it our whole lives or not, there is something in us that longs for loving parents.  It's part of our make up.  I know she is strong and loving and does her best not to let that part of her past control her, but I know there's still pain there.

There is my friend who has never been able to have a child.  She and her husband are good people.  They would make wonderful parents.  But for whatever reason, that blessing has been withheld from them.  I have watched them reach out and touch the lives of others' children, but I know their hearts have ached for that child of their own.

There is my friend who has experienced multiple miscarriages.  She has children.  But her heart longs for more.  Her heart aches for more.  But her body seems unwilling to cooperate.  I know her heart aches.  I know she feels an absence.

• There is my friend who lost a grandchild she never got to know.
• There is my friend who has been disowned by her mother.
• There is my friend who has been disowned by her children.
• There is my friend whose mother was taken from her while she was still in grade school.
• There is my friend who has been told over and over by her husband what an awful mother she is.
• There is my friend who's children won't allow her to see her grandchildren or be a part of their lives.
• There is my friend who lost a child to cancer.
• There is my friend whose mother killed her father and then herself.
• There is my friend whose mother beat him.
• There is my friend who's husband and children will forget Mother's Day because they don't think it matters and she will feel as if they are saying she doesn't matter.
• There is my elderly friend who has outlived all her children.
• There is my friend who grew up knowing her mom never wanted to have children -- never wanted her.
• There is my friend whose mother abandoned him and his siblings.
• There are my friends who are single mothers, doing the work of both parents, who would love to have a loving husband tell them how grateful they are for these wonderful women who are raising their children.
• There is my friend who feels so inadequate as a mother and sees Mother's Day as a reminder of all her failings.
• There is my friend who is caring for her mother with dementia and mourns the mother she doesn't have anymore.
• There is my friend who is watching her drug-addicted mother ruin her life and can't do anything about it.
• There is my husband who will be reminded that his mom is gone.
• There are all the women who will feel guilty for having a good Mother's Day when they know their friends are hurting.

 

There are so many people around us who will be hurting this Sunday.  And whoever thinks one day a year is enough to recognize and value all the work mothers do is crazy.  One day a year doesn't begin to cover the sacrifice and heartache it means to be a mother.  One day a year has turned it into a marketing ploy.  A way to make money off the guilt of people who should be more appreciative more often.

 

But for those of us who hurt so deeply on Mother's Day, one day a year is more than enough.

Letting People See My Scars

*** Warning: This post contains possible triggers for self-injurious behavior.  Do not read this if you are not safe. ***

I have a history of self-injurious behavior.  Self-injurious behavior is addictive.  If you don't/haven't self injured, it won't make sense to you.  It doesn't make sense in the logical part of my brain.  But my body remembers how good it made me feel and when I read or write about it my body begins to crave it.  Those who self injure understand.  That's why the warning is there.

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This post wasn't meant to be about self-injurious behavior (SI), but I guess it is.  I've written about hurting myself on my other blog (here, here, here, and here).  Read those if you want to understand it better.  What I haven't written is the post that really explains why I do it.  How it feels.  The high I get.  Why it's so compelling.  I'll write that some day, but not today.

This post is about revealing it.  Especially to my children.

Self-injurious behavior most often starts in the teen years.  Looking back, I definitely had some self-injurious behavior as a teen.  But nothing like what hit in my mid-thirties.

December 14, 2006.  I was thirty-six years old.  I was sitting in our white van outside my kids' elementary school.  I'd been on my way home from errands and decided just to park and wait there even though it was about an hour before school would be out.  And I was having a meltdown.  Everything was hitting at once.

I'd been in therapy for almost a year, so I was facing some pretty ugly and dark stuff for the first time.  I was five years into my struggle with chronic fatigue and a year into my struggle with my chronic headache -- both with lots of doctors, tests, and medication trials but no answers or improvement.  My husband and I were not good; we were discussing separation or divorce.  He'd recently chosen to have his name removed from the records of the church.  We were having financial problems and Christmas was right around the corner.  I'd had a difficult and confrontational conversation with my dad a few days before.  And I was on an anti-depressant that was making my depression so much worse.

I was losing it.  I saw the broken plastic spoon.  And I scratched.

This was the beginning of a long road of self-injurious behavior for me.  My arms are covered with scars, mostly very faded.  This was also the beginning of long sleeves.  In all sorts of weather, even coaching softball in the heat of the summer, I wore long sleeves.

Why?  At first it was because I was afraid of the reactions of others.  And because I didn't have the answers to the questions I knew would follow.  Later it was because I worried what it would do to my children.  How would I explain it to them?  I didn't want it to rob them of their childhoods because they were constantly worried about me hurting myself.  Or worse, killing myself.  (It's a common misconception that self-injurious behavior is a precursor to suicide.  That's rarely the case.  In my case, self-injurious behavior kept me from killing myself.)

But the time came when I was ready to tell them.  I was sick of living in long sleeves.  I was sick of hiding.  I was sick of feeling like I was lying to my kids.

I discussed it with my therapist and my ecclesiastical leader and my husband.  I told them I was ready.  We discussed possible fallout.  But I knew the time had come.

It was spring, 2009.  My oldest daughter was graduating high school.  We had a week-long graduation trip to California planned.  I would do it then.  That way they would have time to adjust before having to answer questions of friends who might see my arms.  And I could wear short sleeves on our trip.

My kids were 18, 16, 14, 12, and 10.  It was the right time.  The reveal went okay.  I answered questions.  I'd chosen to blame it mostly on the medication I was taking (which I think was what pushed me over the edge) and leave out so much of the ugly.  They didn't need to know all that.  I also told them I was done with it.  It had been a long time since I'd hurt myself.  I hoped that part was true more than I believed it was true.

Sometimes it comes up in our conversation.  I know they've struggled with it at times and had conversations about it I wasn't privy to.  I also know it's been used as a cool thing.  "Yeah, my mom was a cutter."  But it's mostly just part of who I am now.

And that was the end of constant long sleeves.  People don't really ask about my scars very often.  Medical personnel ask when I'm being seen for something.  Children sometimes ask (I usually just tell them my scars are from scratches).  Others either don't notice or are too polite or scared to ask.

I've relapsed a few times since then.  Each time, I've gone back to the long sleeves.  At least while the marks were fresh.  Mostly, so my kids don't start worrying again.

But since it's an addiction, it would be wrong to say I used to be a cutter.  I am a cutter.  I think it will always be a part of me.  An itch that occasionally hits me.  I work hard to stay in a healthy place so it doesn't happen again.  I wish I could say it never will.  But I can't.

These scars are me.  They are my triumph over something so dark and ugly that most people never experience and will never understand.  They saved my life.  And, honestly, I like them.

Tell Me What You Know About God

Or what you believe.  Or think.  Or understand to be true.  Or wonder.

And then I'll tell you what I know and we'll both be better for it.

If I tell you what I know, and it's different from what you know, will you take offense?  Will it cause bad feelings between us?  Will you feel judged by me?  Will you feel superior to me?

If I tell you what I know, and you are unsure about God, will it make you feel insecure?  Will you feel like I'm trying to convert you?  Will you feel like I'm trying to tell you what to believe?

If you tell me what you know, will it be because you want to convert me?  Will it be because you feel it's your duty?  Will it be because you have truth that I should have?  Will it be because you care for me?  Will it be to condemn me?

If I tell you what I know about God, will it make you uncomfortable?

If you tell me what you know about God, will you try to use it to control me?

I'm fascinated by the beliefs of others.  My faith (the faith within me, not my church) brings me so much joy.  I wish everyone could experience it.  But I don't believe my faith is the only way to find joy.  I believe truth brings joy.  I believe there is a lot of truth out there that I don't know yet.

I've spent my whole life surrounded by people who were almost all members of the same church as me.  I used to think that meant we all had the same perception and understanding of God.  As I've grown I've learned this is not at all true.  There are some general things most of us believe, but there are also differences.  We know different things.

Because you can study and research and ponder every word that has ever been written about God and not know Him as well as a little girl who prays when she is scared.  This little girl who feels something outside of herself that makes her feel safe.  This little girl who feels a strength beyond her own.  If all you do is read and study and ponder, she will know more about God than you do.  Because she will know God.

Maybe you've felt something, sensed something, been aware of something beyond what you can explain.  Maybe you aren't ready to call that God.  Or maybe you call it something else.  I'd love to hear your story.

Or maybe you've never had a sense of anything beyond this world and think others are deceiving themselves.  That it's a happy fairy tale we use to make this world a little less scary.  I'd love to hear your story, too.

A few simple truths I know about God.  My truth.  (People say truth is truth and we can't have different truths, but I don't believe that.  Because our truth isn't just about what is true.  Our truth is also based on who we are and how we can receive it and process it.)

God is aware of each of us individually.  He was once like us.  He experienced mortal life on a world like ours.  He is now God because of the way He lived that life.  He earned it.  He is the Father of our spirits.  He has a physical body but not like ours.  His body is perfected.  And as His children, we have the potential to become like Him.  To do wonderful things after this life.  And hard things, too.  To continue to grow and progress and become.

As our Father, He hurts with us.  He allows difficult things to happen but almost never causes them.  He knows the best us we can be.  He knows hard things are how we get there.  He knows we are strengthened by the resistance of trials.

He knows me.  My life is better when I turn to Him and let Him guide me.  He does not control or force.  If we want Him to be a part of our lives, we have to choose to invite Him.  He waits for that invitation and it brings Him joy to answer it.  We are His purpose.

These are some of my truths about God.  As I grow and learn and experience some of them might change.  Some of my truths will be expanded upon.  I might see others from a different angle.  And some of them may no longer be my truths.  It will be fun to see.

Now I've told you some of what I know about God.  All those questions I asked in the beginning, I'm asking again.  Do you feel threatened by my truths?  Do you feel judged by my truths?  Do you feel superior to me because of my truths?  Do my truths align with yours or challenge yours?

I would love it if you'd share some of your truths with me.  Or just thoughts or feelings or questions.  Questions we can ponder together.  Tell me what you know about God.

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I welcome all opinions and viewpoints, but if you are unkind or abusive or disrespectful I will delete your comment.

Balance is a Myth

My daughter's Chiari 1 Malformation repair surgery went well (decompression and duraplasty).  The doctor didn't have to remove any of her brain.  Thank you to all who offered prayers and support in our behalf.

It took longer than expected because she has an extra thick skull.  (The doctor said it was about three times as thick as most, and if he'd had to remove any more he'd have had to get a new saw because he burned through the one he was using.)  He removed a piece of her skull.  He removed the back half of her first vertebrae and shaved off part of the second.  He opened up the dura (the covering of the brain) to make more room and patched it with a piece of her scalp.  She goes back next week to have the staples removed and make sure everything's healing well.

She's still quite medicated, so it's tough to tell if any of her symptoms are better.

Three long days in the hospital with her were exhausting.  I was sleep deprived when we got there and it only got worse.  I tried to take care of myself while taking care of her.  I ate some.  Slept some.  Neither enough.  Because she was my top priority.  She needed me there in order to feel safe.  She was scared.

Since we've come home it's been better.  She's slept more.  I've slept more.  I'm keeping her on a strict medication schedule to stay ahead of the pain -- absolutely no waiting until it hurts.  As soon as she can take more meds, I give them to her.  It won't be this way for long.  I will start to stretch it out when I think she's ready.  But right now she needs to be able to relax a little and sleep so she can heal.

I am sleeping on a mattress on the floor of her bedroom at night.  There was an oxygenation issue in the hospital that's got her a bit paranoid.  Having me there to make sure she's breathing lets her relax.  It's a small price to pay.

While I was at the hospital with her those three days, my oldest daughter played mom at home.  She got people up and off to school.  She kept track of people.  She ran things.  All while finishing up classes and studying for finals.  She was a life saver for me and now has a better understanding of how hard it is to be a mom -- I understand there were some tears.  (Don't ask where my husband was.  We had a fight that started while my daughter was in surgery and continued throughout the day, both of us sleep deprived and stressed.  He was not in a good place those three days.)

Since we've been home, my daughter's ex-boyfriend-but-still-best-friend has spent most of the daytime sitting with her in her room, running errands for her and/or me, and giving me a chance to rest.  This would have been incredibly difficult without him.

And I have had to give up a lot of things.  I've let a lot of things slide.

All of that brings us to my point.  Balance is a myth.  Life isn't about making everything we want fit into a tiny space of time and energy.  Life is about deciding what's most important and choosing that.  Life is about letting go of things that don't matter to focus on things that do.

I wanted to be at my oldest daughter's concert, but I was needed at my other daughter's bedside.  I wanted to go to a discussion on literature of world religions, but needed to take care of myself.

There was a time in my life when I would have demanded it of myself to keep doing all I was already doing and find a way to squeeze this in there, too.  Luckily, I'm wiser than that now.  I know that's not healthy and not something to strive for or admire.

My priorities right now are my daughter, my health, and the other people in my life.  The house will wait.  There will be other fun opportunities.  And anything that really needs to get done can be farmed out.

Life is about seasons.  We do one thing for a while, at the proper season.  As the seasons change, we need to be willing to change with them.  We need to find the beauty in each season and not feel like a failure because we leave the other season behind.  We need to be willing to let a season go when it's time to move on.

This is my season to take care of my daughter and help her heal.  And it's the perfect season for me at just this moment.

My Daughter's Brain Surgery

It's a strange thing to be sitting in a waiting room, kind of bored, knowing my daughter is just down the hall with someone cutting open her skull and possibly removing parts of her brain. 

This man that we met once.  Talked to for fifteen minutes.  Holds my daughter's life quite literally in his hands.

The last three weeks, since her diagnosis, have seemed like a year.  It's taken forever.  Mostly because all we had was a diagnosis, no information specific to her case.  Then, last Thursday we finally met with the neurosurgeon.  We learned what her situation was.  We learned his plans.  We scheduled the surgery for the soonest possible date.  The last four days have flown by and dragged.  You wouldn't think they could do both, but they did.

And now we are here.

Pre-op was a bit tense.  Knowing it was just around the corner.  Sam was quite anxious, which added to my anxiety.  Then pre-op was done and we waited.  It was about an hour and a half of waiting after pre-op was done.  We got bored again. 

Then someone walked in, told her it was time to go, and the fear returned.

And they took my baby away.  Nineteen or not, she's still my baby.

I'm actually ridiculously calm.  Except for this underlying anxiety that I feel every time my children leave my presence.  Just kind of magnified.

I believe the surgeon is skilled and knows what he's doing.  I believe things will go well.  But there's still that part of me that holds a constant prayer in my heart that she will come back to me.

I wonder if that will ever go away or if I will just always have that small alert in my heart.  No matter how old they get, I wonder if I will always have that sense that they are vulnerable to this big, bad world and I need to protect them.

I can't imagine doing this without faith.  While I believe everything will go well and she will heal and finally feel better, there is a tiny chance that things could go not well.  That she could have permanent damage of some kind, have a successful surgery but feel no relief, or even die.  All of those things are possible.  But I am still much more calm than not because of my faith. 

I know that I am not the only one worried about her and watching out for her.  I know that she was His child first.  I know that no matter what happens, she will be okay.  We will be okay.  There is great comfort in knowing that.

But it doesn't mean I'm ready to give her up yet.

I imagine she'll come out and we'll have a rough go for a few days with a consistently upward curve of healing.  I imagine that within a few months, the only evidence of today will be the six-inch scar up the back of her neck and skull.  I imagine she'll be up and running, back to usual, before we think she should.

But right now a doctor has her head splayed open and is working on her brain.  And we wait.  And it's scary.

The Blessings of Chronic Illness

Last night I had a conversation with someone who knew nothing of my chronic illness.  This is someone I only run into occasionally, who has only seen me when I'm doing well.  Which makes sense because when I'm not well I generally don't leave my house.

I don't remember what brought us to the topic of my health, but there we were.  I was explaining to her that I've fought debilitating fatigue for twelve years and a chronic headache for nearly eight.  With no answers as to why.  And I watched her face change.  There was concern and sadness.  And she expressed as much.  As she said what kind of specialists have you seen and doesn't anyone have any answers and oh, how hard that must be, I realized I don't see it that way.

And I told her of the blessings I've received because of my chronic illness.  (Some of which I've written about here.)

As a society, we tend to celebrate busyness.  Go, go, go.  That's how to be a good person.  Do, do, do.  There's never enough time in the day.  We have too much to do.  Why can't we do and have it all?  Chronic illness has taught me that this is foolish. 

Doing just to be busy is worthless.  Even damaging.  When we do and have more and more, it is usually worth less and less.  There is such value in choosing how we live our lives, every moment of our lives, instead of getting caught in the rushing flow of life as it happens around us.  And sometimes choosing to do nothing.  Choosing to be still and quiet.  Choosing to do only one thing at a time instead of always multitasking.  Teaching our minds to be at peace.

There are people who can learn this without chronic illness.  I am not one of them.  If I felt better, even now after all I've learned, I would be running around like a chicken with my head cut off -- just like I used to.  Bragging (without realizing it) in a martyr-like way about how busy I was.  Holding my exhaustion up as a badge of honor for the war of busy I fought.  Busy because I couldn't bring myself to give anything up.  Because I didn't have the willpower to choose what was important and get rid of what wasn't.  Because I didn't understand that empty spaces in my schedule were worth choosing. 

I needed chronic illness.  I needed the smack in the head that said, "Sit down and be quiet!"  I needed to be forced to pay attention to other things.  I needed to question the desires of my heart and decide what was important enough to me to spend the tiny bit of energy I have on it.  And it can be summed up in one word.  People.

The things I was doing before were good things.  But most of them were not of eternal significance.  People are of eternal significance.

I'm still working toward the ideal for me.  For now, I have structured my life in such a way that I am able to take the time to be with people when I need to.  I'm blessed that my husband makes enough money that I don't have to work (which I couldn't do anyway because of my health).  I'm blessed that the days of small children needing all my time are behind me.  As I create my new life, which is constantly in flux, the one thing that must remain true is my ability to be with people.  I need this.  To set other things aside and just visit.

Maybe it's an hour chatting on my porch.  Maybe it's a trip out for ice cream.  Maybe it's lunch.  Whatever it is, it will involve intimate conversation about things that matter.  Things no one else has the time to listen to.  I have the time.  I protect the time so that I can offer it to others.

I still have to take care of myself.  I have to remember that I am important, too.  I have to remember that if I don't take care of myself I will have nothing left to offer others.

It is the desire of my heart to connect with people.  To lift and strengthen them.  And in so doing I am lifted.  I am strengthened.  Instead of draining my tiny bit of energy, it increases.  It feeds my soul.

My illnesses and life struggles have taught me empathy and an understanding of a great many things.  Between physical health problems and mental health issues, and the diagnosis and treatment of both, I've waded through many dark waters.  Certainly not all of them, but many of them.  Sometimes I am miserable and hurting.  But I would not trade it for the world.  Because it has blessed me with an understanding heart.

If I could go back in time and do something different that prevented me from getting ill, I wouldn't.  I am so grateful for what I've learned and how I've grown.  I am so blessed to be able to offer what I can.  And none of this would have been possible without my chronic illness.

I watched her face change again as I told her these things.  I watched it soften.  I watched her smile.

If I don't learn from these experiences and bless the lives of others through what I've learned, then it was just a lot of ugliness and unhappiness and pain.  But if I use it to reach out, it meant something.  It has value.  It has eternal significance.