How do you reassure people?

October 2, 2011

Telling a stranger or an acquaintance about my health issues can be difficult, only because it is hard to make them understand.  We all know that, right?

I find it infinitely harder to talk to loved ones about it, especially when there’s something negative happening.  How do you tell your loved ones that things are bad?  The last thing I want to do is upset people.  Even when they are being the most wonderful, supportive friends and family I could ever want, I can see they’re hurting, and that is more painful than anything I deal with on a daily basis.  That’s why I don’t tell them most of what I deal with.  And that’s why I started this blog: it’s much easier to complain to anonymous readers than to upset my loved ones.  Plus, if you’re reading this then you probably have similar conditions, so you understand.  You know that as bad as things are, they’re probably not as bad as what’s in the minds of family and friends.  But how can I convince them of that?

More than anything, I want to reassure my family and friends right now that I am ok.  Yes, I need to take a few months off of work, but really, I’m ok.  I mean, sure, I’m not really ok, because if I was, I wouldn’t need the time off.  Yeah, I know that.  But aside from that, I’M OK!  REALLY!  I guess it would be more convincing if it was as true as I want it to be.

I wonder how other people handle this?  Is there any possible way to tell your loved ones that you’re worse without upsetting them?  I guess not.  I’d be upset of the situation were reversed.  But it still feels lousy.  This has been an incredibly difficult and emotional ordeal, and as I write this post, this is the first time I’ve cried.  Suddenly, I can’t stop the tears.   I can handle my own problems, but causing pain to others is unbearable.  This is the pain that no one warns you about.

[Note: To get free emails of posts to this site, simply sign up in the top right corner of any page.]

2 Comments | Educating, Expectations, Isolation, Kindness, Rants, Raves, Support, Thoughtfulness | Permalink
Posted by chronicrants

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?

 

[Note: To get free emails of posts to this site, simply sign up in the top right corner of any page.]

Leave a Comment » | Expectations, Frustration, Limitations, Pain, Rants, Symptoms, Unpredictable | Permalink
Posted by chronicrants

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.

 

[Note: To get free emails of posts to this site, simply sign up in the top right corner of any page.]

Leave a Comment » | Decisions, Expectations, Frustration, Job, Limitations, Rants, Raves, Support, Symptoms, Thoughtfulness, Unpredictable | Permalink
Posted by chronicrants

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.

[Note: To get free emails of posts to this site, simply sign up in the top right corner of any page.]

Leave a Comment » | Educating, Expectations, Frustration, Insensitive, Politics, Rants, Support | Permalink
Posted by chronicrants

« Previous Entries
Next Entries »