“How To Be Sick”

That’s the title of a Buddhist inspired guide for the chronically ill and their caregivers.  It was written by Toni Bernhard, who has Chronic Fatigue Syndrome, and can be found at How To Be Sick.  I haven’t read the book (though I’d like to) but I have been following her on Facebook.  Today she gave a link to a blog where the post author had taken notes at a talk given by Ms. Bernhard.

I don’t write a lot about how frustrating it is to be sick, especially “invisibly” sick, very much.  It’s too depressing to focus on much, so I mostly try to avoid thinking about it.   This past week I had a pretty bad pain cycle, but there was a lot going on, and I had to make some decisions.

Anyone who knows me knows that the most important thing in my universe is my family.  My husband and my children are my entire reason for existence; the best part of my life.  I often have to make a choice; do I go participate in an activity to be with them? Not as easy a choice as it might seem.  I want to go, of course.  But if I do, will my pain interfere with everyone else’s fun?  Will I drag them down?  Will the pain actually make me crabby, and I take it out on them?  What if I go, and I have nothing left for later, which could mean the next few days?

This past weekend was a perfect example.  Around here, weekends are pretty lazy; cooking, laundry, and a soccer game on Saturday, church on Sunday.  All the rest is TV (football, catching up on the shows I missed during the week,) maybe even a nap.  This past weekend was a little different.  Saturday was Ojai Day, one of my favorite days of the year.  They shut down the main street in the center of town, and fill it up with vendors and exhibits, displays and music and games.  It’s a blast.  I really, really want to go every year.

So this year, Murphy had a soccer game at noon.  Dead on in the middle of the day; worst possible time.   So I decide to walk down alone early, before the game.  It was cool, overcast, pretty nice, actually.  I knew I wouldn’t be able to stay long, as I had to get home for the game; so I left about 10:30.  Mind you, it’s only about three blocks from my home.  By the time I got to Libby Park, I already knew I was in trouble; I was sweating, my knees and my back were on fire.  But I was determined!  So I wandered around a bit, saw most of the exhibits (though I was too early for the belly dancing, one of my favorites!) and even bought a really cool thing for my hair. By that time, I was feeling faint and weak, and knew I’d better head home. I just barely made it, limping along into the house, just dying to sit in my comfy chair and medicate.  Instead, I walk in the door and the Beloved says “Ready to go?”  We have to leave instantly for the game.  So instead of crumbling into my chair and reaching for the pain meds, I “run” around the house, collecting the things we need for the game. Hop into the car, get to the school, and face the L O N G walk to the field.  Carrying the backpack full of snacks, water, and knitting.  The Beloved, blessedly, carries our special chairs.  He and Murph walk ahead; it takes me probably an extra five minutes to get there. I’m using the cane because my knees hurt so badly, but today my hands hurt just as much, so the cane is worse on my wrists, so I have to keep pausing to give them a rest.  I’m humiliated when an elderly woman passes me by, comparatively at a run.  I firmly put that thought out of my head, tell myself I’m doing the best I can, and square my shoulders to make it the rest of the way.  I finally get there, and the Beloved has set up my chair so I can collapse, and finally take that pain pill.  The game is really enjoyable to watch; the kids are really starting to figure it out and play as a team.  Murphy is getting better, playing his position well, and becoming more aggressive.  I’m so glad I made it there.  Usually I knit during the game (vanilla socks, so I can still watch) but for a long while, my hands hurt too much. Eventually, I do get my needles out, and knit  slowly.  Unfortunately, they lose the game by one goal, and it’s time to head home.  Oh man, the walk to the car.  I get a head start while they pack the chairs up and talk to the coach, but still they get to the car long before me.  Once home, I collapse in my chair and pass out. Nap time.  I never used to nap, ever.  Now, it’s becoming a regular thing.

After dinner, Murphy wants to have Family Game night.  This is something he picked up at the church (Oh, those wacky Mormons with their family values!) and while I love the idea, I’m in so much pain that I know leaning over a game board is going to be excruciating.  But he really wants to do it, and even the Beloved is willing (wow!) so I suck it up and we play “The Game of Life” which my mother had given Murphy for his birthday.  It was great fun, and Murphy won, which was cool.  Finally; bedtime.  Sleeping fitfully because the pain wakes me up every time I move.

We wake up, get dressed, and go to Church.  Church is a surreal experience for me.  The Mormons have a very interesting faith and lifestyle, and the service is very different from the rituals I’m used to in other religions.  The speakers today are a bit more interesting than usual and the Mother particularly touches a few strings for me.  But the chairs we’re sitting in are tiny uncomfortable folding chairs, and by the end of the service my back is screaming.  We head home for football and knitting.

My hands hurting this badly and this consistently is new, and not welcome.  It hurts to knit and spinning is out of the question.  Since I’m currently unemployed and trying to make a little money by selling fiber related items, this is not a good thing.  So I force myself to do it anyway. I knit a really cool hat from some of the black merino I’d spun a long time ago; I’m really pleased with the way it came out.  Then I remember that I forgot the laundry.  I get that started, and realize that I already thawed the henna to color my hair, and I have to use it tonight or it will mold.  Coloring this much hair is a big undertaking, and once again I seriously consider just chopping it all off.  Then I remember how much I hate my hair short, and I get up and start.  The Beloved is kind enough to try to help when he can; that’s love, ladies.  Murphy is doing his homework.  Homework can often be frustrating for both parent and child.  He comes in to get help and it takes every bit of control I can muster to help him.  The pain, exhaustion, frustration  have me right on the edge of snapping at him.  Sometimes I lose that battle and get to add guilt to all the other painful feelings I have, but tonight I manage acceptably well.  Finally everything is done; laundry folded, Murphy in bed, hair washed and newly tri-colored (not intentionally; roots are red, middle is brown, tips are almost black.  I actually kind of like it though!) and it’s time to cuddle with the hubby and watch the Sunday shows.

So what’s the point of all this?  I’m not looking for sympathy or pity or anyone to feel sorry for me. I choose this.  Not the pain part, obviously, but I choose to do the things I love, even when they make me miserable.  Which is sort of empowering, I guess.  I want to be a part of my family’s doings; I want to be there for my kids. I want to enjoy the little things like playing board games and going to soccer.  It’s the focus on that which keeps me from being totally maudlin, losing myself in self pity and depression.  And I’m proud. I’m proud of the strength of my family, and most especially my husband, who never complains, never makes me feel bad about being sick, never seems to resent the things I can’t do.  I’m proud to be aware enough to make the choice to go to that soccer game; I could have easily stayed home and wallowed in the pain after Ojai Day, and I know Murphy would have understood.  But I can hurt at home alone, or I can hurt away with my family, and on the whole, I’d rather be with my family.  I’m proud of  me, when I can make these choices consciously and manage not to take it out on the people I love by being a “negon” but by being as loving and participatory as I can.  That’s what will get me through this.

So now it’s Tuesday, and the pain cycle seems to be winding down.  I have a bit more energy, though working just a little on the house yesterday made last night pretty uncomfortable. I’m always worse at night, and I honestly can’t tell if it’s worse because it’s nighttime, or because I settle down and there’s less distraction so I focus on it more, or if just getting through the day aggravates it by night.  Maybe all three.  I just know how lucky I am to have my family and to love and be so loved in return.  It makes everything worth it.

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