Top 5 frustrations about attending outdoor events

October 1, 2011

Cities, towns, and counties all over have concerts and festivals, plays and parties, carnivals and celebrations.  When weather permits, and sometimes when it doesn’t, these events are held outdoors.  This can be great fun.  It can also be a huge disaster.  For many of us, it
falls someplace in between, but probably not as close to the fun side.  So, without further ado, here are my own top five frustrations with attending an outdoors event.  These are today’s frustrations.  I reserve the right to come up with more the next time I go to one of these.

 

5. Lack of seating.  For some of us, standing is very hard, but we don’t have scooters or wheelchairs.  Folding chairs are too heavy to carry.  Where there is seating, it’s usually taken.  This makes for a difficult, painful, tiring experience.

4. Lack of healthy food choices.  Don’t get me wrong, I love fried dough as much as the next girl; I also know what will happen to me
if I eat it, especially if it isn’t balanced out with some fruit.  Yes, we could all bring our own food, but that gets tricky.  Would be it so terrible if they had a few healthier options?

3. Weather.  Sometimes we know what to expect that day, but sometimes we don’t.  Weather changes can make the whole excursion much more difficult than it would otherwise be.  If it’s suddenly hotter or colder or more humid than expected, our bodies can react very strongly.  It’s pretty tough to prepare for something like that.  And indoor temperature-controlled venues are usually rare, unless you’re willing to miss out on the festivities (and sometimes not even then.)

2. Crowds.  These things tend to bring in a lot of people.  If they didn’t, they wouldn’t be held.  It’s tough to constantly be bumped into, stepped on, even brushed against.  It would be nice to have an invisible field around me to keep people at a good distance, to force them to respect my personal space.  Unfortunately, we haven’t caught up to the promises of Star Trek yet (yes, I’m a fan.)

1. Getting to and from.  Getting to these things can be challenging, but that can often be worked out.  The harder part is usually leaving.  By the end, we’re tired and in pain and the car/bus/home seems very far away.  Those last yards can feel like miles.  If only the staff gave piggy-back rides….

 

Well, those are my top frustrations.  What are yours?

 

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Taking a leap

September 30, 2011

Well I did it.  I took the leap.  After thinking about it and writing about it, I finally started the process of taking a medical leave of absence from my job.  I’m not happy to have to do this, but I’m hoping it will help me to feel better.

I have the best, most supportive family and friends.  I am so grateful to have them in my life.  I can’t imagine how I’d be managing all of this without their support.  I can’t say enough good things about them.  They’re amazing, wonderful, fantastic, loving, caring people.

And on that note, I am going to try to get some sleep now, to rest up from this emotionally exhausting day.  Here’s to tomorrow: a new start.

 

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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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Sitting on the fence

September 26, 2011

Maybe “standing at the edge of a cliff” would be a better title for this post?  I’m on some sort of precipice, I know that much.

 

I’m the queen of self-denial.  I know that about myself.  I know it, but I have trouble changing it.  Making life-alter decisions is always difficult.  We all know that.  But how do you make those huge decisions based on incomplete information?  One of the most difficult aspects of chronic illnesses is how unpredictable they are.  If I knew, one way or another, how I’d feel in a few weeks or a few months, it would be so much easier to make these decisions.  If I do X I’ll still feel lousy, if I do Y I’ll feel better, but Y is hard, so maybe I’m willing to feel lousy with X.  But I’d know the result of each.  It’s so much harder when it’s a choice of X or Y, and I can only guess at the outcomes of each.  How do you guess?  How can I guess?

 

There’s no good way.  I know that I need to jump.  I know it.  But there’s definitely a part of me that’s in denial.  This other part thinks that maybe I don’t have to jump.  I’ve managed so well up to now.  It’s been 20 years of symptoms and I’ve done great.  I just need to keep doing what I’ve been doing.  It’s not like I have any concrete symptoms.  Nothing is visible.  But I know…. just because it isn’t visible, doesn’t make it any less real.

 

So, I’m making a public goal: In the next week, I’ll jump.  I’ll close my eyes and make the leap.  I’ll be sure to write an update when I do.  Until then, I’ll live in a denial for just a bit longer.

 

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