Posts Tagged ‘Self-care’

Circling the Wagons

Wednesday, December 2nd, 2009


Lately I have fallen off the wagon.

Actually, I have fallen off several wagons. Which, come to think of it, may be part of the problem – with RA, there are just so damned many wagons. So many little things that need to be done every day to stay healthy, stay mobile, stay active, stay positive. It’s hard to keep track of all these things, and easy to forget them. When I’m flaring and the brain fog descends, it can become almost impossible.

There’s also an element of rebellion here. I resent the fact that my life has become so structured. I was a random kind of person before I had RA. Not that this was a good thing, but in my mind, it went with my identity as a musician. Keeping strange work hours that changed from day to day, grabbing food on the run, being a night owl, being able to sustain long obsessive bursts of creative activity… I miss these things, even if they weren’t necessarily the things that make a healthy life.

In old Western movies, people would circle the wagons to protect themselves from outside attackers. Well, the RA and its related problems have taken advantage of my lapses and have been attacking again. It’s time for me to circle my wagons – but first I should take a look at what they are.

So the next few blog entries will probably be my wagon train – a description of all the different things I do (or don’t do) to stay well. Instead of focusing on how I’ve fallen off of them in the past, I’d like to picture them circling, protecting me. Instead of seeing an endless string of one wagon after another, I’d like to see them as a unit, all parts of the same whole.

What are some of your wagons, and how do you keep yourself from falling off?

Beauty in Strange Places

Saturday, November 14th, 2009


This is a picture of methotrexate as seen under a microscope, from the National High Magnetic Field Laboratory at Florida State University. You can buy a poster of this image here, along with many other cool pictures of things you’ve probably never seen this close before.

I keep this picture around to remind myself that it’s always possible to look at things in a new way.

When I first started taking methotrexate in the spring of 2008, it was the enemy, pure and simple. I had given birth to my son four months earlier, and to me, starting this drug meant nothing but loss. It forced me to stop breastfeeding much earlier than I wanted to, and I knew that I wouldn’t be able to have another child for as long as I was on it. Since I’m not exactly young, I also knew that this might mean closing that door forever. It also meant facing the reality of my RA, something I hadn’t had to do during my pregnancy remission.

This weekend I read the journal that I kept during that time. I was going to quote some of it here, but the feelings are too painful, too raw. I feel sorry for that girl, who was emotional from postpartum hormones, physically and emotionally sore from weaning too fast, grieving the end of a special connection with her baby, frightened of what was to come. When I finished reading the journal, I pulled my baby (now almost two years old) into my arms and kissed his soft cheek. I wished I could go back in time and tell that girl that it would be fine, that he would be happy and healthy and that we wouldn’t be any less connected after he became a bottle-fed baby.

For the first several months, methotrexate was truly rough.  I took it once a week, and that day was always a disaster.  I felt vaguely nauseated and achy all day, with a headache and a funny feeling in my throat, kind of like the way you feel when you’re first coming down with a miserable cold.  When I brushed my hair, large amounts of it fell to the floor.  I was short-tempered and argued with my husband, who was confused by the change in my personality.  Worst of all, I became fuzzy-headed, couldn’t concentrate, couldn’t remember things, couldn’t make decisions.  This also threw my husband for a loop – he was used to a wife who knew what she wanted, felt, and thought.  I would become angry when I tried to read a book I had been reading the day before and found I could no longer follow the plot.  I would tie myself in knots over a simple choice, like Cheerios vs. eggs for breakfast.  I would cry like a baby when I read or heard about anything sad. 

Finally, my husband and I came to the realization that this was simply how methotrexate day was going to be.  Trying to will myself to be different just resulted in frustration and tears, and the effort of trying to go out and do normal things just made the malaise extend to the next day.  So we decided to honor methotrexate day by making it a day of rest for me.  First we moved it to Saturdays.  This made me sad at first, since it would mean missing out on fun sometimes, but it simply didn’t work on weekdays.  Then we developed little rituals to make things nicer.  We would go to the library in the morning, before I took my pills, and pick out a selection of light-hearted books (nothing with a complicated plot) and fluffy, fun movies.  (Since methotrexate gave me the attention span of a flea, we knew I would probably jump from one to the other during the day, so variety was important.)  Then I would spend most of the day on the couch, drinking lots and lots of water.  My husband always dressed our little boy in an “I Love Mommy” onesie (we have several now, in different sizes!) and kept him happy and entertained, bringing him to me for cuddles and kisses when I needed them.  Sometimes, after our son was in bed, I would go to the keyboard and work on my songs.  For some reason, I could focus when I did this, and even forget that I was feeling sick.  Since my emotions ran close to the surface, this was also a way to get them out. 

I did stop losing my hair once I increased my folic acid.  Other than that, not much really changed – I still felt the nausea and malaise, still couldn’t focus or make decisions.  But somehow, methotrexate day had been transformed from something terrible to something almost pleasant, a day to slow down and care for myself.  At one point, I had to stop taking methotrexate for a few months because of an infection, and I actually missed those days.  One day, I found the picture of methotrexate under a microscope.  (I had been doing a search for a picture of the pills, since the ones I had gotten from the pharmacist looked different than usual.)  I started visualizing the drugs not as an enemy or a thief, but as something helpful, maybe even beautiful.

Okay, not completely.  I still would rather not take it – wouldn’t anyone?  In some ways, it still feels like an enemy and is still associated with loss.  But I did learn that it’s possible to find beauty even in a situation that seems completely bleak.  And even though it seemed impossible back at the beginning, I have adapted.

Hmmm… maybe, in some ways, I’m closer to acceptance than I thought…


Sunday, November 8th, 2009


My mother lives 2856.2 miles away.  I looked it up on Mapquest.  I found it strangely comforting that there were only 29 steps in the directions, even though some of them involved staying on roads for 500 miles or so.  The map that accompanied the directions, though, made me a little sad, since it showed the entire continent with a red line across it indicating the driving route.  Only 43 hours and 23 minutes to drive there, assuming you don’t sleep or eat…

In spite of the 2856.2 miles, my mother and I are very close.  We talk on the phone every night.  Sometimes we Skype, although that’s mostly so she can see her grandson.  We see each other at least twice a year, usually for several weeks at a time.  She has been there for me through some very difficult periods in my life.  Whether I go to visit her or she comes to visit me, she takes care of me.  Now that I have a husband and child, she takes care of all of us.

The other day, we were talking about my recent realization that I need to be kinder to myself.  I’ve been thinking about this a lot lately.  When I wrote about it before, my focus was on appreciating my own efforts more, and letting go of the self-criticism that I often fall into.  She agreed that this was important, but added that I also need to start taking better care of myself physically.  She pointed out that I often don’t get enough sleep or eat well enough.  Then she said, “You need to start being your own mother.”

My first reaction to this sentence is to think of things like “nurturing your inner child.”  Blech.  Not my style.  But when I get past the “blech” reaction, I find myself with an image of a divided self – a rebellious toddler on the one hand, and a strict, overly-critical, disciplinarian parent on the other.  Strange, since this isn’t the kind of mother I actually have.  The rebellious toddler thing, though, might be more on the money.  Sometimes I have trouble being a grownup.

I do know some things about mothering, though.  I have a beautiful son.  He is not even two years old yet, so there’s still a lot about mothering that I haven’t experienced yet.  But I do understand mother love.  More than anything in the world, I want my child to be healthy and happy.

There are a lot of things that I do for my son that I don’t do for myself.  He eats a very healthy diet, abundant in fruits and vegetables.  He has special bedtime and naptime routines that send him off to sleep happy and comforted.  Aren’t these things I could also do for myself?  Couldn’t I join my son every day in his afternoon fruit-and-yogurt snack, or pile vegetables onto my plate the way I do onto his?  And how much better would my life be if I went to bed at a reasonable time and created rituals that made going to sleep a peaceful and happy experience?

I’m not a perfect mother, so naturally there are areas where I feel I could do better by my son.  These are also things that would benefit me.  It would be better for both of us to get more exercise, and to see people more instead of staying in the house.  It would also be good for us to have a wider selection of low-maintenance activities on the days when I’m just not feeling well enough to go out and do those things.  Even on the lowest-energy days, I could choose to lie in a lounge chair on the patio instead of on my couch, so my son could at least get some fresh air and sunshine while he plays with his trucks. 

So maybe it’s not really about finding some mythical “inner parent” to take care of my “inner child.”  Maybe it’s just about focusing on the kind of real mother I want to be to my real child, and then extending that kind of care to myself.  Somehow, when I think about my son, things become much clearer and simpler.

My New Baby!

Saturday, October 24th, 2009


Meet Little Martin!  I finally bought him yesterday, after doing lots of research and then waiting for just the right sale. 

I’ve wanted to play guitar for a long time, but have struggled with it.  I got an acoustic guitar for my birthday when I was thirteen, fooled around with it a little, learned some basic chords, and then put it away.  I always found it uncomfortable to play – it made my left wrist ache, and there were some chords I just plain couldn’t reach with my relatively small hands.  This puzzled me, since other people seemed to find guitar easy to play.

Once I developed RA, I figured that I’d just have to put the idea of playing guitar behind me forever.  Then I had a revelation – hey, maybe they actually made guitars in different sizes!  Maybe the one I got when I was thirteen just had an unusually wide fingerboard, making the strings hard for me to reach!  Maybe the tension or weight of the strings could also be adjusted to make the strings easier to push down!  Feeling dumb that I never considered these possibilities before, I contacted a friend of mine who is a luthier (fancy word for a guitar-maker) and asked him what he would recommend for a person with RA.  He threw out a lot of fancy terms I didn’t understand, but enough of it was clear to send me to a guitar store, where I discovered the Little Martin.

It’s called this because it’s a 3/4 size guitar, designed for backpacking, tossing in an overhead compartment of a plane, or for use by children or smaller adults.  In the store, I tried the few chords I know and found that yes, it was easier to reach them.  My luthier friend also suggested that I have the guitar set up with light-gauge strings – this would mean sacrificing some sound quality, but might be a good idea until my fingers got used to playing.  I haven’t had this done yet – I’m going to see if it turns out to be necessary or not – but it’s good to know that it’s an option.

Buying this guitar represents three things to me.  The first is admitting that my RA is a reality, and that I need to adapt to it.  I see the Little Martin as a very beautiful assistive device – a piece of gorgeous adaptive technology that will make something possible for me that otherwise might not be.  The second is that RA does not have to mean giving up all dreams.  Sure, some things might not be possible for me anymore, but sometimes there’s a way around obstacles. 

The third is a step towards taking good care of myself and appreciating myself, something I wrote about in my last post.  Little Martin was not cheap, even if I did get him at a fantastic price.  The truth is, I don’t know how much I will actually play guitar.  Little Martin may end up in the corner gathering dust.  But buying him meant that I decided that I deserved a beautiful present.  I had to fight with some guilt over spending the money and wondering if I would actually use him, but in the end, I did it.  And I think that’s worth celebrating!

Being Kind to Myself

Wednesday, October 21st, 2009

As I navigate the complex process of coming to terms with my RA, I have made an effort to cultivate a positive attitude.  This doesn’t always come naturally to me – I tend to be more pessimistic – but I think it’s an important tool in dealing with a chronic illness.  So far, I’ve been pretty successful at appreciating the little things that add loveliness to life.  I also appreciate the big things, like having a supportive and loving family.  Something I’ve overlooked, though, is that this attitude of appreciation also needs to extend to myself.   

 My recent pity party has caused me to think deeply about autoimmune disease as a metaphor for the way I sometimes treat myself.  Somehow, being kind to myself is something I’ve overlooked.  When I really stop to examine my thinking, I find that I am often… well, MEAN to myself. 

I’ve always been a perfectionist – I think the classical music field attracts them.  If I get a 99 on an assignment or test, I focus on the missing point.  When I make mistakes in life, it’s really, really hard for me to get past them.  I could get into all sorts of psychological reasons why this is the case, but it’s not important right now.  What’s important is recognizing this, and understanding that it doesn’t serve me here.

So, in addition to appreciating little things and big things in my life, I want to commit to treating myself with kindness.  I have a son who is almost two, and if he is hurt or sick or sad, my instinct is to pick him up and hug him.  I can’t imagine saying to him, “What’s wrong with you?  Why can’t you just get over it?”  I can’t imagine that that would help him, either!  So why shouldn’t I treat myself with the same loving kindness?

I’m not sure what this means yet.  Some of it means giving myself the space for a pity party now and then, or finding little ways to comfort myself when things are tough.  Some of it, maybe the more important part right now, means appreciating the things I do to try to improve my life with RA.  It’s hard for me to see these things, and hard to write about them.  It’s also hard to give myself credit for them.  The other day, I asked my husband for help with this.  He began naming things he has seen me do that he thinks are admirable.  And just like that, BAM!  POW!  I blocked each and every one of them:

MY HUSBAND:  You’re really good about taking your pills every day.

ME:  No – remember that one day I forgot them?

MY HUSBAND:  That was one day.

ME:  No, I think it happened more than once.

MY HUSBAND:  Okay… you’ve been really proactive about seeing the doctor when a new symptom comes up, and getting to the bottom of what’s going on.

ME:  Maybe that’s just me being a hypochrondriac.

MY HUSBAND:  But every time you’ve done this, it turns out there really is something wrong.

ME:  Well, maybe I’m CAUSING the problems, then!

(This, by the way, has been another unhealthy theme – that somehow I caused my illness, or that it’s a punishment for something I did wrong at some point in time.  Totally irrational, and I don’t believe for a minute that this is how things work when it comes to OTHER people!)

This, then, is my new challenge for myself: to start appreciating my own efforts.  Now let’s see if I can do it without insisting on doing it perfectly!  🙂

Pity Party

Wednesday, October 14th, 2009


Yesterday I had a pity party. 

The reasons behind the pity party aren’t all that important.  What I found interesting about the whole thing was my reaction to it, and my thinking about it.

See, the people who blog in a positive way about their lives with RA are my heroes.  (Some of them are even superheroes – you know who you are!)  😉  I really want to be one of them.  They have inspired me to be more positive, more proactive, more focused on the good and beautiful things in my life.  On the whole, this has made a big difference in my life and in my approach to the disease.

But some days, that all goes out the window.  Monday was such a day.

It was a bad day, and I think it would be by almost anyone’s standards.  Not only did bad things happen, but I was so worn down by being sick all week that I just didn’t have the inner resources to deal with them.  So I had a bit of a meltdown and ate lots of things that weren’t exactly health food.

Now comes the interesting part.  I was clearly gearing up for a pity party, but couldn’t seem to get it started.  Not because of any positive shift in attitude – actually, I just kept feeling worse and worse.  But on top of the bad feelings I already had came a new, negative thought: Look at all these people who are able to stay positive while living with RA.  What’s wrong with you?  And lo and behold, GUILT showed up and tried to shut down the party.  Guilt stood in the doorway calling me names like ungrateful, whiny, and weak, yelling at me to stop being such a big baby and suck it up.  And I tried, I really did.

Problem is, guilt isn’t a good motivator.  I woke up yesterday (Tuesday) morning feeling, of course, worse.  I was still feeling terrible from the things that happened on Monday, and now, I also had the things Guilt called me ringing in my head.  I was completely frustrated with my inability to get on with things.

Then a few things occurred to me:

1.  Autoimmune diseases already do a really good job of beating us up from the inside.  It’s the ultimate form of attacking ourselves.  Did I really need my thoughts to start doing the same thing?

2.  When I really think about it, it’s not true that my RA-blog heroes are positive all the time.  In fact, some of them have written very honestly and openly about their struggles with depression and about times when they felt overwhelmed by their condition.  If anything, this makes them even MORE heroic to me.  If they were just blissfully going along, never feeling frustrated or upset or angry, something wouldn’t be right.  And even if a blog did express nothing but positive thoughts, that wouldn’t necessarily be a true picture of what actually goes on with that person.  Blogs are mostly snapshots of a given moment, and I know that I’ve been reluctant to post when I’m not feeling well – why shouldn’t that be true for others?

So I decided to go ahead and let myself have that old-fashioned pity party.  I complained, I ranted, I vented.  Since a party’s not a party without guests, I shared these feelings with other people.  I allowed myself to be comforted, something that can be hard for me.  I allowed myself to act like a giant rebellious baby – “I don’t WANT to take a million pills every day!  I don’t WANT to have all these stupid diseases!”

And you know what?  I feel better today.  Better, braver, and ready to pick up where I left off.  Ready to continue on the path to acceptance, ready to continue being proactive with my self-care, ready to keep planning small changes that will make life with RA better and easier.  Maybe every now and then, it’s GOOD to have a pity party.  Maybe it’s healthy.  Maybe it’s better to accept where I am than try to force myself to be someplace that I view as “further along.”  Maybe it’s time to be nicer to myself in a lot of ways.  And maybe it’s not so good to hide myself away and let these feelings fester – maybe I should stop worrying about how I look to people reading my blog and recommit to my original goal, which was honesty.

Next time I have a pity party, I’ll make sure to invite you!

Auch kleine Dinge (Even Little Things)

Thursday, September 3rd, 2009



Every weekend, my sister used to go to an outdoor market and buy herself a single beautiful rose. She would cut the stem short so that the flower rested perfectly on top of a bud vase. All week long she would keep this vase on her desk at work, a small pleasure that made her days a little brighter.

A song by Austrian composer Hugo Wolf (1860-1903) has been running through my head almost every day this week, and I am beginning to think it is trying to tell me something. It is called “Auch kleine Dinge,” which means “Even little things,” and the translation is as follows:

Even little things can delight us,
Even little things can be precious.
Think how gladly we adorn ourselves with pearls;
They are heavily paid for and are only small.
Think how small the olive is,
And yet it is sought for its goodness.
Think only of the rose, how small it is,
Yet smells so lovely, as you know.

Here is a recording of this song from a concert in 2003, before I had RA. (I’m the pianist on this recording, not the singer.)

Get the Flash Player to see the wordTube Media Player.

I have been in a flare since Monday. When this happens, big things like plans, dreams, and my sense of self seem to go out the window. My world shrinks down to the size of my own body, sometimes even to the size of a particular joint that is causing the most pain. It’s hard to be cheerful or optimistic or even just okay. Even when I am not actively flaring, just having RA has made my world smaller in many ways – activities I can’t do anymore, friends I don’t see because they were connected to those activities, parties I miss because I’m too tired to go, being unable to enjoy a nice glass of wine or a Mai Tai because of methotrexate, having to watch what I eat because of prednisone, staying home with my toddler too many days because taking him out is just too difficult…

It’s important to grieve those losses, and I am doing so. My songwriting is one way of working through these feelings, and writing and talking with trusted friends help too. I know that grief is not always a straightforward process, and that as my disease changes, I will probably have to revisit grief many times. But I also have a growing awareness of the good things in my life – not just the old things that I still have, but new things that have come along.

So I am trying to remind myself to notice and cultivate the “kleine Dinge” that add a little brightness to a difficult situation. Sometimes this seems very, very hard to do, but I think it actually makes a difference in how I feel. I also realize that I have been neglectful of this, especially when I look at people like my sister, who knows how to take this kind of joy in many things in her life.

Today’s “klein Ding”: My 21-month-old son has just learned how to give real kisses! He used to throw air-kisses, but the feeling of his little kiss on my cheek is something completely new, and amazing.

What are some of the “kleine Dinge” in your life?