The Care and Keeping of Your Fibromyalgia Friend

May 12th was Fibromyalgia Awareness Day.  I've been living with a chronic disease/syndrome since pre-adolescence.  It might have been the strain of a move to a new state, a new school, where I was isolated and had no friends.  I remember feeling something like depression for the first time in that small, sparse apartment, at the tender age of 9.  My siblings had each other but I had no one.

Suddenly, I was tired all the time, and no amount of sleep could alleviate that.  My joints, especially my ankles, were stiff upon waking, and my parents teased me for walking funny first thing in the morning.  I gained weight, and well, you know how middle-schoolers are.  I remember us moving into our new home the summer I had just turned fifteen and retreating to what would be my new room, sinking down exhausted on the carpet in the warm sun and falling asleep.  I knew I risked the wrath of my parents for "skipping out on the work" and "being lazy" but the mere thought of helping to lift all those boxes and pieces of furniture made me physically and mentally weary.

After a battery of tests this past fall, the possibilities are pointing more and more in that direction.  While I don't yet have an official diagnosis, I know what it's like for someone with fibromyalgia: to feel tired and unwell all the time, for no reason at all, for good days to be few and far between, to be called lazy, or accused of being a hypochondriac, to feel uncomfortable to the point of screaming.

These are things I would have liked people to have known about me growing up, and suggestions for being a source of strength, rather than a hurt, to a suffering friend.

The Care and Keeping of Your Fibromyalgia Friend

1  //  Your friend isn't stupid or irresponsible.  She suffers from brain fog.  Be patient with her, try to remember the dates you have planned together and be the one responsible for remembering.  This will take a strain off of her and keep her from feeling like she can't do anything right.

2  //  Be patient with his level of activity.  Especially if he's undiagnosed.  He's not being lazy or giving in too easily.  He really can't reach deep within him and summon the energy from some mysterious source just by willing it, the way you can.

3  //  Don't judge her for choosing the path of least resistance.  If she decides to work from home or part-time, if she is able, that is her call.  She's the one inside her body and knows what's best for her.

4  //  If you want to be a Florence Nightingale, some frozen meals, like the ones you deliver to other sick people or new moms, would be so appreciated!  When he's in the midst of an attack, the healthy feeding of himself and his family is almost too exhausting to bother with.

5  //  Overlook that her house is a mess, please.  Hurtful comments won't improve her home, her health, or her mood.

6  //  If he says no, he means no.  Please respect his decision, and don't pressure him to go out with you.  It's not a rejection of you but a carefully weighed decision based on a his abilities and his levels of pain.  He has to dole out what he is able to do each day the way other people dole out sugar for their coffee.

7  //  Educate yourself.  Ask questions.  Taking an interest in your friend's disease means a lot to her, and lets her know that you believe she has a legitimate illness.  Having someone who understands what she's going through can make her feel less lonely, too.  Especially if you are a family member learning how to live with a loved one's disease.

8  //  Your friend is not a scrounger, a hypochondriac, or an attention whore.  He would drop his illness to live a normal life in an instant.  It takes an act of will for him not to feel sorry for himself or waste time wishing things were differently.  But he has had to come to accept his life for what it is, and only with acceptance can come peace and fulfillment.

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For further reading:

100 Symptoms of Fibromyalgia

On Not Knowing Everything

Feb. 27, Feat of St. Gabriel of Our Lady of Sorrows, confessor, patron of clerics, students, and young people.

All I know is that I know nothing.

Said somebody important.

Really, it's true, and the more I am reminded of this, the better I feel about incorporating that philosophy into my child-rearing.  Except I do know something.  The Something I know is what God knows, what He reveals in his Sacred Word and in Holy Mother Church.  As for the rest of it, here's a little note to remind myself that, when in doubt, it's okay to simply say to my son, "Hm, I don't know."

And not to be ashamed that I don't know everything, either, even in parenting.  Especially in parenting.  It's a work in progress.

I don't know all the answers, and as a mother, I don't have to.  I catch myself in an attitude sometimes that if I am not able to provide my son with a logical, well-thought out explanation of the inner workings of the universe on various topics, from physics to we-have-four-Christmas-stockings-and-three-people-in-our-family-what-do-we-do-now?!?, it's going to be okay.  It's going to be better than okay, actually, because I'll be teaching my son a deference to and reliance on God.  He won't be able to place me in that idolatrous role that codependency demands, for a person to find someone who has all the answers.  That person doesn't exist, even among the saints and popes.  And when we are able to hold that knowledge close, then we won't be brokenhearted when we learn otherwise.

What Women Really Need for Valentine's Day

Feb. 14, Feast of St. Valentine, bishop and martyr.

to know there is hope after abortion #ProjectRachel  //  a society that doesn't force them to choose freedom at the expense of their children  //  not to be murdered in the womb for being the wrong gender

I'm a one-issue voter.  It's hard for me to imagine funneling energy into other issues if we can't first secure the right to life.  Without life, all other rights are rendered obsolete.  I believe that if a politician, public figure, or party endorses abortion, it's a deal-breaker.  That said, the fight for life shouldn't end at birth.  The sidewalk counselors oughtn't to wipe their hands of the women they just talked out of a permanent decision--praise be to God!  That first, initial victory over death is only one of many, many more battles.  The culture of death is called a culture because it permeates everything.  It's in our attitudes, our visions of beauty, our food and clothing choices, our entertainment.  Our work isn't done as soon as the innocent child is born alive.  It should only have begun.

I have struggled in this culture of death.  I was naive when I married, and almost certainly not ready (having nothing whatsoever to do with my actual age and everything to do with psychological maturity).  I found myself pregnant three months later, after a very rocky initiation into real life.  We had no work, no means of income, and no hope for either of those two things to change in the foreseeable future.  People I loved and cared for, people whose opinions mattered to me, said all the right, "pro-life" things, but I could hear their internal head-shaking as loudly as if they were screaming at me.  Acquaintances gave me sideways glances at Mass.  My mother cried.  I felt like an unwed-and-pregnant, teen-aged high school drop-out.  Never mind that I had a Master's degree and was validly married in the Church.

It was my father--my stern, pull-yourself-up-by-the-bootstraps father--who silenced all further woebegone what-might-have-beens with a single sword-like sentence: "We welcome all life in this house."

But that wasn't the end of hardship.  I had terrible, day-long morning sickness.  I lost weight.  After two and half days of keeping nothing down, not even water, I was so weak and miserable I dragged myself to the emergency room to have anti-nausea meds pumped into my through an IV.  When the sickness subsided, the preeclampsia set in.

When my baby was born, I suffered severe post-pardum depression; anemia; recurring UTI's; inexplicable and disabling body aches.  My son never slept; my husband couldn't take care of him; my parents, whom we had moved in with, were overtaxed and overworked.  They were frustrated with the added burdens.  I was weak and exhausted and emotionally a wreck and without health insurance.  My husband worked a minimum wage job part-time hours.

Fast forward two years.  We moved into a tiny but affordable apartment.  My husband managed fairly well at a better-paying job for a short period of time, the job the vocational rehabilitation department got for him.  After six bounced checks; gasoline poured, libation-like, into the hour-and-a-half long one-way commute (I drove, my husband didn't have a license and we couldn't afford to add him to insurance) only to be told, "We're taking the day off today, go home;" and manipulating him into saying he was quitting so they didn't have to pay unemployment, my husband booked a one-way-ticket back to his home country.  I worked a minimum wage job, and only just found a part-time something that paid a little better in September.  My husband sends us money when he can.

Today, we are incredibly blessed.  We have food, shelter, and happiness.  It took us a long time to finally get here, but we did.

Yesterday, my little boy turned 3 years old.  If society had it's way, he wouldn't be alive.  Why is that?  Why is it that it's easier for Planned Parenthood to grab a fistful of money and cut up a perfectly formed human being than it is for our communities to offer positive support, giving dignity to the whole woman, as well as her baby?  What are we doing to make sure life is treated--before and after birth--as the sacred, worthwhile thing it is?

Whatever we do to improve the lives of all human beings, women included, it starts with the womb.  Let's just make sure it doesn't end there.

". . . If we could see the stars as a child sees them, we should need no other apocalypse. . .  But the influence of children goes further than its first trifling effort of remaking heaven and earth.  It forces us actually to remodel our conduct in accordance with this revolutionary theory of the marvelousness of all things.  We do actually treat talking in children as marvelous, walking in children as marvelous, common intelligence in children as marvelous. . . [and] that attitude towards children is right.  It is our attitude towards grown up people that is wrong. . ."--G.K. Chesterton

Twenty-Eight

On Tuesday I turned 28 years old.

I'll take a moment to be honest here and say that I haven't had the easiest time in the past couple of weeks.  Living with depression is like keeping a bear in the closet.  Most days, he's contained and quiet, if you keep him well fed, but sometimes he gets anxious and ornery, and it's all you can do to keep him from getting out and smashing everything to bits.

You'd think it'd take a bold resolution to slay the dragon, but no, during these phases, it's the little things that help reclaim yourself again.  It may seem silly, but when you're trapped in the circular cage of negative thinking, a little positive words of kindness or communication can loosen the chains: affirmative words about a poem (I've felt impotent in my writing lately), an invitation to be a part of someone's photo project (I'm frustrated my pictures aren't good enough . . . according to who?), or the affirmation that you don't have to apologize for your happiness.

People are doing this "30 things to do before turning 30" thing, but I don't want to.  I've done plenty already that I've wanted to do, including live abroad, get a Master's degree, publish in a book, learn how to spin, climb a mountain.  Why do I need to focus on the things I haven't done yet?  I mean, I could make a list, yeah.  It'd look something like this:

• lose 80 pounds
• bake
• make regular and healthful meals
• get and stay organized (wouldn't even know where to begin!)
• finish the baby blanket I've been crocheting since pregnancy
• finish the First Story
• get a full-time job with benefits that I enjoy and makes use of my special skills and talents
• improve my poetry
• develop a tasteful, unique, and fashionable wardrobe and wear it well
• be a crafty, hipster mom to my son
• pursue a doctorate, or other degree in Creative Writing
• take a digital photography class
• attend daily Mass
• get a teaching certificate
• read more classics
• play more with my son and take him on outings
• be an active (and popular) blogger
• develop a personal Catholic superstition
• exercise

But then, when I don't do those things, or don't do them to my satisfaction, I'll be disappointed in myself and unhappy.  There's always the risk on birthdays that the "I thought by now I'd be. . ." threat will creep up and climb on.  The truth is, I'm my harshest critic, and I'll probably never live up to my own superhuman expectations.

Two scraps of wisdom seem most important right now, offered by two geniuses:

"There are two ways to get enough.  One is to continue to accumulate more and more.  The other is to desire less."--G.K. Chesterton 

"There are only two ways to live your life.  One is as though nothing is a miracle.  The other is though everything is a miracle."--Albert Einstein

I know life is a miracle.  Maybe if I try to dull the instinct for more-more-more, I'll really start to feel it again.

So my resolution for this next year is to remember and apply those two pieces of advice.  It won't be easy.  It'll come and go; some days I'll want to make concrete goals and feel good about them, then fall into depression again because I haven't achieved them.  On those days it's good to remember that my worth doesn't rest on my virtues or how I perceive myself.  That Someone regards me as priceless and wants me enormously, and that there's nothing I can do or not do that will change that.