Tag Archives: asthma

Some Days Are Like That

If you’re looking for happiness, hope, and inspiration, come back another day.  This isn’t it.  One of the first rules of good writing is honesty.  So, here it is.  This post is about living honestly on those days that don’t feel very good.

As I have written recently, the last few months were difficult health-wise and turned me into a hermit.  This extrovert makes a horrible hermit.  I feel isolated and depressed.  It shuts down my voice.  I feel invisible, little, and useless to the world.  Even moments of joy, laughter or appreciation of beauty are fleeting.  I reach out to others with goodness when I can, but even that feels momentary.  It’s been frustrating, to say the least.

I lost my voice and coughed constantly.  My lung capacity dropped 40% again, so I had little energy for anything and was barely able to exercise or walk down the block.  I felt crummy.  My two conversation groups disbanded.  Life became so boring I felt I had nothing to say to anyone.  I trusted if I kept working the program of medication, rest, gradual increasing activity, and trying for a positive attitude I’d eventually return to a fuller, more meaningful life again.  But in the meantime, it was uninspiring to write or talk about my life.  It isn’t the kind of stuff I want to share with anyone.  After all, who really wants to hear it?

Like many people with chronic illness, I have good days and bad, and some that are just ….. there.  There’s not much to say about them except they’re frustrating and not how we want to be living.  Some days are just like that and there’s nothing to do about them.

For myself, I hate to share how I am doing at such times.  I feel like I’m whining and complaining.  I don’t want pity or sympathy, advice or problem solving, well-meaning as they might be.  I don’t want to have to take care of listeners’ discomfort with the unpleasantness of my life and the vulnerability of theirs–I have enough on my own to take care of.  I don’t want people to tell me things will get better, or to look on the bright side, or to have faith, or to say they understand how I feel.  Unless they’ve actually been in my very situation, they don’t know how I feel.

Sometimes I don’t know what I want from others, I just know life stinks and is boring and frustrating now.  I just want the people I’m speaking with or those reading what I have written to be O.K. being uncomfortable, to know they don’t have to fix me, and to recognize that even people they respect and admire still have crummy times but that doesn’t mean we’re going to stay in that space forever or jump off a cliff.  I want people who are uncomfortable to know it’s O.K. to be uncomfortable, but please don’t inflict it on others.  Just listen, accept the crumminess of it, and respond with a version of “That really sucks.”  Yes, it does.  For me, and I think for many people with chronic illness, that’s all we want.

cropped-billingsley2520creek_full1.jpgBecause I don’t want to sound like a whiner or to add to others’ discomfort, I withdraw into myself and retreat from others when my life is crummy.  Taking care of other people’s discomfort–or even having to listen to it–takes too much energy and gets too depressing.  I don’t want to build friendships on the dishonesty of pretending my life is something it isn’t, so I withdraw.

Likewise with my writing.  Anything I write that doesn’t come from an honest place in myself is noticeably hollow.  The dishonesty is transparent and uncomfortable to readers.  But if I write honestly at those times, it sounds depressing.  So, I stop writing in order not to seem depressing.  This time, after a week of finally trying to write an up-lifting, helpful, insightful post and finding every attempt deadly boring and useless, I decided to go for honesty.

Even though I hesitate to write this blog post, here it is:  honest.  The reality is that just because life is crummy today doesn’t mean it will be tomorrow.  And if tomorrow is wonderful (as was the weekend I spent with my children and granddaughter recently), another crummy day is around the corner.  That’s how life is with chronic illness, or grief, or care-giving, or aging, or any number of other types of unpleasantness. Some days are like that for us.

Please don’t try to fix us or give us advice.  Don’t worry too much about us or give us too much sympathy.  Agree with us that it stinks, it sucks, it’s lousy, that it is probably really frustrating and maybe even unfair.  It is all those things. Some days are like that.  And then we’ll move on in our conversation and our journey.  After all, unpleasantness is just part of life.

Photo by Barbara Anderson outside Hailey, Idaho, May 2012

My New Best Things in the World

New best things don’t have to be big.  Small ones can still make a big difference or just make us hugely happy.  MIne fit into both categories.

#1 New Best Thing:  Special eyeglasses made for the exact distance between my eyes and my cumputer screen, and well as the music on my piano.  I even picked a super fashionable set of frames.  I call them my “writing glasses.”  They reduce my eye fatigue–and therefore my overall fatigue–and make it possible for me to write for three times longer each day than I’ve been able to do for the past couple years.  Hooray!  They’ve changed my life radically.  Small change…big difference.

#2 New Best Thing:  Replacing carpet with wood floors.  This is always #1 or #2 on doctors’ list for people with respiratory problems but I couldn’t believe it would make enough difference to be worth the money.  Last month we took a bite out of of checkbook and replaced the carpet in half the house with wood floors.  Within days, I could breath better.  On days with dangerously bad air quality (for me), I no longer had to be sequested to a little room with a purifier running.  I could be in my family room, eat at the kitchen table, help cook meals, look outside at my garden.  My quality of life improved 800%.  I’m eager to pull up the carpet in the rest of the house but the checkbook needs to recover first.

Of course, neither of these best new things will bring about world peace, or the second coming of Christ, but my life way better and for now, that’s good enough for me!

Learning:  Even small changes can make a huge difference.  Keep trying small tweaks and be surprised.

Life in a Bomb Shelter

Pantry Shelf in My Bomb Shelter House

O.K., my house isn’t really a bomb shelter.  But for ten days, it felt like it was I’ve wanted strong pollution standards for a long time, but now it’s gotten personal.  Maybe it has for you, too.  If so, here’s help.

In addition to air conditioning, three room air purifiers, and a HEPA filter on my cold air return.  I just added two new Austin air purifiers(www.austinair.com).  The new ones make it possible for me to live in my whole house–although often I can’t stay in the kitchen long enough to do the dishes! Sometimes, I’m still stuck in just one room to breathe without complications.

I can do everything in my control to be healthy, and still risk my health when I go outside if the air quality is poor.  I’m eager for everything we can do to cut air pollution, including the newly approved standards on clean air.  Air quality affects both quality and length of life for many of us.

Right now, everything I do outdoors–running errands, watering my garden, or meeting a friend for lunch–depends on checking hourly updates from the Air Quality Management District (www.AQMD.gov).  On the air quality index, zero-50 is good; 51- 100 (yellow) is dangerous for highly sensitive people (that includes me); 101-150 is dangerous for young children, the elderly and those with respiratory or heart conditions.  At 151-200 (red), everyone should limit outdoor exertion, and 201-250 (maroon) is dangerous for everyoneCheck out the website: the info’s good and the animation’s fun.

According to my doctor, many of us begin having trouble when the index reaches only 70.  Wow!  At 70, I turn on my air purifying technology, and at 100, try not to go outdoors at all.  Add the negative impact of high temperatures for heart patients, and I’m cooked!

I had no idea that air pollution could cause such problems until they landed on my doorstep with myasthma and heart issues.  As a claustrophobic extrovert who loves being outdoors, I can’t stand it!!!

A rose in my garden

Good news:  I came out of my bomb shelter Monday and took deep breaths of clean air.  It’s lasted all week.  I took my dogs for a walk one day, partied outdoors one evening, and gardened today.  I kept the windows open every night.

I plan to go wild this weekend! I’ll drive with my windows down.  I’ll live at an outdoor café.  I’ll visit my favorite stream and listen to water run off the mountain.  I’ll read on my chaise lounge, and linger over meals on the patio.  It sounds really tame, but compared to last week, it’s sheer decadence!

I’ll retreat to my bomb shelter next week and go nuts again.   Maybe I’ll decorate my facemasks with colored ink or sequins this time.  I gotta find a way to make this fun!

Learning:  Inside the bomb shelter or out (whatever your bomb shelter is), be creative with it.  Life’s better that way.