Where’s the compassion?

September 29, 2011

Arrrgh!!  Some days are just so frustrating!

A lot of life is frustrating of course.  Fighting traffic, pushing through crowds, dealing with less-than-helpful customer support services, and fighting with uncooperative computers a la Office Space are typical daily frustrations.  But today I’m talking about people.

More specifically, I’m talking about people who lack compassion.  One day I wasn’t able to walk, so a friend and I did some shopping with me in a wheelchair, her pushing it.  There was the sweet teenager who saw us coming and ran ahead to open a door.  But then there was the woman who told us we were being too slow and rudely pushed her way past us.  Nice, huh?  Well, this second one is the type I’m talking about today.

In the last few days I’ve been hearing too many things, directly and indirectly, that demonstrate how much some people lack compassion.  There was the woman who told me, while talking about my health, that my “reputation is the most important thing.”  There’s a friend who needs an incredibly simple accommodation at work, he brought in the medical documentation, and he’s being given the runaround by his employer.  And non-health-related, there’s the person whose office scheduled a mandatory meeting for yesterday, the start of  Jewish holiday, and then gave her a hard time for leaving early to prepare for the holiday.

In many ways our culture is one of me, me, me.  Sometimes I see people thinking about the good of their neighborhood, the good of their community, or the good of society in general.  That’s a start.  Less often, I see people who try to put themselves in the places of their friends, neighbors, and colleagues and who try to truly understand their wants and needs.  It’s a shame; I really believe this world would be a better place if we all did that from time to time.  Yes, that sounds a bit Pollyanna-ish, but I believe it.  When an elderly woman comes onto the train with a cane, give up your seat.  And when a healthy-looking 20-something asks for your seat, believe they have a good reason, and give it up with a smile.  It’s possible you’ll make someone’s day just a bit easier.

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Leave a Comment » | Educating, Expectations, Frustration, Insensitive, Politics, Rants, Support | Permalink
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Can money buy (less bad) health?

September 28, 2011

This week’s carnival topic at ChronicBabe really piqued my interest.  I’ve never considered this exact question before, so I really gave it some thought.  The question is:

“If you could receive one gift to help you through this life with illness, what would it be? It can be tangible or intangible, something for you alone or something for you to share.”

Before you read on, I hope you’ll give this some thought too.  What is it that you would want?  Got it?  Ok, now for mine….

I’m going to base mine on reality.  What I really want is a magic cure.  Unfortunately, I think that’s about as likely to happen this year as the

20120809_220808people of Boston obeying traffic signs (really people, is it so hard?)  My second choice would be a working crystal ball.  Sure, I’d feel lousy, but at least I’d know what to expect and how to plan for it.  But that’s right up there with tomorrow’s storm clouds raining chocolate instead of water.  So I’ll go with my third choice: money.  Yes, money.  Does that sound weird?  Ok, then I’ll explain.

I can imagine so many other possible gifts that could help me, but at the end of the day, it’s money that would enable them all.  I’m not saying that money is the most important thing to have.  I think it’s much more important to have love and support.  I am so lucky that I already have those things from my incredible family and friends.  It would be wonderful to have a significant other for additional support, but that’s not really something that comes in “gift” form, does it?  (But maybe it should!)  Money, on the other hand, could buy so much.

What would you do with some money?  I’m not talking about $50,000,000 from the lottery.  I mean, what if you magically had the same amount of money you earn either from the job you have or from the job you would have if you worked?  I don’t live an extravagant lifestyle.  If someone gave me enough money to live off of (I figure $1,000,000 invested well would provide enough interest for me to live off of indefinitely, or else if someone wanted to give me $30,000 a year) then I’d be doing so much better.  Money can’t buy health, but it can let me obtain things and do things that would improve my health, or at least stop its deterioration.

First, I’d quit my job.  No doubt.  I’m getting ready to take some disability leave, but that’s a short term solution at best.  I need to not work.  Without a job, I would do my physical therapy daily and go to the gym regularly.  I’d get proper sleep and really focus on my diet.  I’d spend more time with my family and friends.  I’d still have some time to fill, so I’d volunteer.  I love volunteering.  I could help people, but have enough flexibility in my schedule to take care of myself firstimg2 and foremost.  I know, I know, this sounds like those things people always say they’ll do but it never happens, right?  But I was unemployed for a quite a while not too long ago and I did these things and felt so much better.  I’d be thrilled to do it all again.

Next, I’d get massage therapy and acupuncture regularly.  I’m supposed to do that now, but who has the time or money or energy for such things?  I already spend thousands each year on my health, and time and energy are so scarce, being sucked away by my illnesses and by my job.

Now, if I had a lot of money, I’d buy a house.  It would be a nice little house, and it would have some health-improving luxuries that I lack now: laundry on a main floor so I wouldn’t wear myself out doing a single load; a parking space so I wouldn’t have the stress of searching for parking or the difficulty of Photo 1walking to and from more distant spaces; a ramp so I wouldn’t have to deal with stairs; central air conditioning so that summers would be a little less tortuous.  These are the luxuries I dream of.

Some nights I stay up late dreaming of winning the lottery.  What I’d do with the money is easy: I’d give money to loved ones, and I’d give huge gifts to my favorite nonprofits, I’d put it towards curing these illnesses we all have, and I’d feel better.  But getting it is pretty unlikely (but maybe just slightly less unlikely than the magic cure I mentioned earlier.)  Or maybe one day someone will click on the “Donate” button in the sidebar and give me some huge amount of money.  That’s not so likely either (right up there with flying pigs, perhaps?)  Instead, I’m trying to focus on the more likely things (like lots of small donations, or the stock market improving.)  I’m trying to be proactive.  My goal is to make the money for myself without working full time.  Sure, I’d love to get it as a gift, but in case that doesn’t happen, I’ll do the best I can on my own.  Starting a consulting business will be slow, but if it works, it will give me the flexibility of schedule and location that I need.  And before I know it, maybe I won’t be working “full time” anymore.  Ah, to dream….

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2 Comments | Expectations, Frustration, Job, Limitations, Rants, Raves, Support, Thoughtfulness, Unpredictable | Permalink
Posted by chronicrants

Making proactive life changes

September 24, 2011

Ever feel like your life is out of control?  Yeah, me too.  So I’ve decided to get control over at least some parts of it.

 

I can’t control my health.  Sure, I try to manage it the best that I can, but these illnesses will progress in some way no matter what I do.  So it’s time to take control of the non-health parts of my life, and hopefully I can improve my health in the process.

 

As I’ve said, working full time makes me feel lousy.  I’d rather work at my job part time, but then I couldn’t afford my current lifestyle.  Sure, I could cut back on some things, but my lifestyle really isn’t all that extravagant.  It’s not as if I were spending even $30,000 a year on expenses.  So I’ve decided to take some time off through short term disability insurance so that I can get my life in order, then I will work part time for a while and use some money I’ve saved up over the years to cover the gap.  After that….

 

…. and that’s what I’m working on now.  The next step.  It’s time to take proactive steps to improve things.  I woke up too early this morning, but my brain was swirling and I couldn’t sleep.  I’m so excited about the possibilities!  I’m working on setting up a consulting business.  I have no idea if I’ll be able to make significant money at it.  Maybe I can make enough to have it support me one day.  Maybe it will just make enough so that I can work in an office only part time and use the consulting to make up the salary gap.  But if I make any money off of it then it has a few big advantages:

1) I’d be my own boss!  I wouldn’t have to explain my sick days to anyone, or worry about their expectations of my health.

2) I’d have a more flexible schedule.  When I felt sick, I’d rest.  When I felt good, I’d work.  Yes, I’d still have to feel good enough to work enough to earn enough, but at least I could schedule it so that it worked best for me.

3) As a result of 1 and 2 I could exercise more, eat better, and overall take better care of myself.  I’d be in control of my life!

 

I know this may be an idealized view, but I have good reasons to believe that if I can make this business work, I’d be much happier with my life.  And I do have reason to think this business could work.  I’m racing against the clock now – the prep work takes a lot of time and effort, and I know I need to finish it while I’m still on the Prednisone and have the energy to get it done.  I expect to launch the business in a matter of weeks (or maybe days!)

 

I’m tired of being on this health and life see-saw.  One day is great, the next is lousy, the next is decent.  I want something more stable.  And I’m will to work hard to get it.  I sincerely hope that I succeed.

 

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2 Comments | Decisions, Educating, Expectations, Limitations, Pain, Rants, Raves, Support, Symptoms, Unpredictable | Permalink
Posted by chronicrants

Great folks make it all a little less bad

September 22, 2011

For two months I had a friend’s party scheduled in my calendar.  I was excited to go.  This is a group of people I don’t get to see as often as I’d like and I knew it would be fun.  Then I had an episode and all plans were kaput.  I didn’t even get to email him about it until afterwards.

 

This is a couple I really like, and they know I have health problems, but we’ve never gotten into all of the details.  [Then again, I don’t get into details with anyone, so I guess that’s my issue.]  I really hated missing the party, but I also felt bad because I’d cancelled plans with them so many times recently.  I just can’t seem to get a handle on my health, or any sense of predictability.  This is hard for me to handle, but even harder to explain.  So I emailed each of them, apologized, explained, and included a link to the spoon theory.

 

They are such wonderful people.  He wrote back and explained that an old girlfriend had (and has) fibromyalgia and that he understood why I kept having to cancel.  He said not to worry and that he’d keep inviting me to things.  Then he posted the spoon theory on Facebook and encouraged others to read it!  His partner emailed me and said that when I show up they’re thrilled and when I don’t they’re thinking of me.  She said not to worry, that she’d keep inviting me to things.  They each said that I don’t have to explain or apologize.

 

These are fantastic people in so many ways.  They are sweet and giving and always thinking about others.  Still, you never know how people will respond, right?  I’ve certainly had people feel insulted when I skipped important events, even though it was not my fault and couldn’t be helped.  But to have people in your life who understand?  That makes all the difference.  If you don’t have people like this in your life, please get some.  Positive relationships can make it all bearable.

 

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1 Comment | Educating, Expectations, Kindness, Raves, Support, Symptoms, Thoughtfulness, Unpredictable | Permalink
Posted by chronicrants

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