Temper control

October 3, 2011

I started this blog because sometimes I get angry.  I get angry at the illnesses, I get angry at the symptoms, I get angry at other people who are insensitive.  These people are coworkers, family members, friends, acquaintances, policy-makers, and strangers.  Some days nothing bothers me.  Some days I’m peeved.  Other days I’m mad.  Some days I’m angry.

Today moves past all of those emotions, right to enfuriating.  I am so angry, I want to yell, kick, scream.

This post isn’t about the details (even as an anonymous post, I’m guessing it might cost me my job, even though they’re completely wrong here.)  No, this post isn’t about what exactly happened.  It’s about the emotions

I’ve always had a temper.  Over the years I’ve learned to control it.  Most people are shocked when I say I have a temper because they never see it.  They should have heard me ranting this evening.  The trick, of course, is to control my temper when I confront the job-type folks who are causing me to feel this way.  I need to control the rage.  I will have to think rationally and present my case calmly and clearly.  I know that getting upset will diminish my position.  Still, WHAT ARE THEY THINKING?

Ok, time to take some deep breaths.  Tomorrow will be an interesting day…..

 

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1 Comment | Educating, Expectations, Frustration, Insensitive, Job, Limitations, Pain, Rants, Symptoms, Unpredictable | Permalink
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The perfect gift

October 3, 2011

It’s carnival time!  I’m excited to have this post on Chronic Babe’s carnival about the perfect gift.  This is a great carnival, so please pass the word.

Leave a Comment » | Educating, Expectations, Kindness, Limitations, Rants, Raves, Support, Symptoms, Thoughtfulness | Permalink
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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.

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2 Comments | Educating, Expectations, Isolation, Kindness, Rants, Raves, Support, Thoughtfulness | Permalink
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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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Leave a Comment » | Expectations, Frustration, Limitations, Pain, Rants, Symptoms, Unpredictable | Permalink
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