Impatience: wanting to just DO something

October 15, 2012

I’ve always been a very impatient person with certain things.  I have endless patience with children, and I love to teach adults some things.  With myself, though, I have very high standards and I get very impatient.  I feel that I should be doing more, or that I could be doing better.  My current impatience, though, is for something that’s completely out of my control at the moment: my future.

This is nothing new, but until now I’ve been writing and thinking about this as frustration.  It’s frustration too, of course, but that doesn’t negate the impatience aspect.  I was trying to better define some of my own emotions this evening when it hit me that I’ve never experienced impatience like this, and that’s why I didn’t define it as such.  I’ve never felt so little control over my future.

In the past, I worked towards new career goals, flirted with cuties in the hopes of finding someone great, moved to a new apartment when I wanted to try a new neighborhood.  I’m not suggesting these things are easy, but I could do them.  Now, I’m stuck.  I’m dealing with crappy agencies telling me that I’m not sick enough for benefits, but at the same time I’m not healthy enough to work.  I can’t earn any money, which is so incredibly limiting.  I will have to move soon, but it will be to a much smaller apartment, in a town that I don’t want to live in, and I can’t even do it until I hear back about the long term disability (ltd) insurance appeal (because if I lose, I’ll have to move in with my parents instead.)  I don’t feel healthy enough to date, so I don’t even try to meet anyone.  I feel stuck.

At the same time, while I’m stuck, I’m also dreaming.  Before I had to stop working last year, I started thinking about ways to earn side income.  It’s not easy, but people can earn money by creating and monetizing web sites, by writing and selling ebooks, and by designing web apps.  I did some consulting in an area where I have some expertise and made some plans to expand that.  I’m not suggesting that I’d earn a full-time salary from these things, but they could provide some extra cash.  The problem is, I don’t feel up to doing them right now, and even if I did, doing any sort of work could mess up the ltd appeal.  I’m forced to not work!  I know I can’t hold down a job with set hours, even a part time one, but I bet I could do something small.  Maybe I could write an ebook, just a little bit at a time.  I could do some consulting, maybe a few hours a month.  I can’t do much, but I could do something and that would feel so good!

I’ve focused on the frustration of not being able to do anything in the present, and that let me ignore the frustration of my uncertain future, but today it hit me.  I was doing some online reading about more alternative ways of earning an income (because I’m realizing that I never want to sit at a desk for 40 hours a week again, even when I can.)  I was thinking about all of the ways I could make these other careers work for me.  And then I remembered that I’m far away from being able to try any of them!  I know I might not try them all, and maybe none of them would work, but it would feel so good to just try!

Then I was reading about some personal finance methods.  The ideas were great, and I was so excited to try them…. until I remembered that I have no income with which to try anything.  Until I earn some money, and build up my savings, I can’t try anything financial.  Again, I’m stuck.  And again, I’m impatient.  I hate doing nothing…. I want to try something!

I’m glad that I’m researching all of these ideas.  This way, if/when I can one day go back to work, I’ll already have ideas for careers to try and ways to save my money.  I won’t have to waste time figuring all of this out.  Still, that’s little comfort right now.  Right now, I get excited about these ideas I can’t try, impatient to just test them out.  I just hope that one day, I get the chance.

4 Comments | Expectations, Frustration, Limitations, Rants, Unpredictable | Permalink
Posted by chronicrants

How sick is sick enough for you?

October 7, 2012

When I was a kid and my symptoms first started, a lot of people said that it was all in my head.  Doctors, nurses, teachers, friends, and family all expressed doubts at one point or another.  My mother was the only one who never doubted me.  I heard it so much that even I started to wonder myself.

After 11 years of symptoms, it was a relief to finally have a blood test as proof.  “Look world, it’s not in my head, it’s a real thing!”

Now I’m fighting the same fight again.  Only this time, instead of saying the pain isn’t real, people are saying it isn’t bad enough.  I keep wondering, how sick is sick enough?  What’s the limit?  What’s the definition?  My boss clearly didn’t think I was too sick to work.  Or maybe that was just wishful thinking on her part.  The long term disability insurance folks have said that they don’t think I’m too sick to work.  I’ve been spending months preparing the materials, bit by bit, to prove otherwise.  Now, I just found out that the MassHealth folks (our state medicaid system) also don’t think I’m too sick to work.  Now I have to figure out how to prove otherwise to them, too.  Of course, I’m expecting to get denied by the SSDI folks, since almost everyone is denied on their first try.  I just applied, but I’m pretty sure I’ll have to work on an appeal.  I got dumped by a doctor who’s tired of dealing with my expensive tests and extensive paperwork, and who was unwilling to state for the record that I’m too sick to work (even though he said it off the record many times.)  He told me to have another doctor do it.

Being this sick is the worst thing in my life.  Being unable to work is demoralizing and scary.  So what’s happening?  Instead of focusing on the positive parts of my life and trying to work through this crap, I’m forced to focus on the worst parts of this crap and explain and define it over and over again for all of the doubters.  I’m forced to examine and then reexamine the most negative parts of my life and lay them bare for strangers to judge me.  And they certainly do judge me.

I’m not the first person to go through this and I won’t be the last.  But at this moment, I may be the most irritated.  I just want to yell at all of those idiots, “If you don’t think I’m sick enough, then just how sick do you think I need to be?  How sick is sick enough?  How sick would you have to be to not be able to do your job?  How sick would your kid/parent/sibling/best friend need to be to not be able to work?”  Not that I think it would do any good.  I’m just tired of being judged.

6 Comments | Expectations, Frustration, Healthcare, Insensitive, Limitations, Rants, Symptoms | Permalink
Posted by chronicrants

Feeling a bit less pain

October 1, 2012

I’m trying to focus on feeling a bit less pain.  In general I’ve had plenty of good days, but I’ve also been having bad days.  On this blog, though, I’ve been focusing almost entirely on the negative aspects lately.  Of course, there’s a reason this blog is called Chronic Rants.  Yes, I like to rant.  Yes, I think that sometimes it’s necessary to rant.  But it’s also necessary to focus on the good parts too, to make sure we don’t just wallow in negativity.  I sometimes have to make an effort at that.

So today I’m thinking and writing about having less pain.  The pain really skyrocketed last month, thanks to the change of seasons.  I’m not sure exactly when this week the pain went back down to my pre-transition levels, but I love that it did.  I know that it might not last, but I’m going to focus on it while I can.

I think there’s a tendency, especially with a new symptom or a new diagnosis, to expect a complete “cure” of a particular problem, and anything less isn’t good enough.  Over time, that attitude changes.  When you’ve suffered from level 6 pain (remember that good old pain scale?) for years and then it shoots up to a 9 for a while, going back to a 6 feels great.  Sure, my fingers still curl more than I’d like, it’s hard to rest my hands palm down, and I can’t carry heavy things, but so what?  And the truth is, I had many years of pain at levels 8 and 9 on a daily basis, so I’m actually able to do a lot now, thanks to hydroxychloroquine, that I couldn’t do before.  I can hold a pen and write a full paragraph, I can hold a knife and cut vegetables, I can pick up a pot of water and pasta and drain it in the sink, and I can type with two hands.  This is fantastic!  Is it perfect by a “healthy” person’s standards?  Nope, far from it.  But for me it’s heavenly.

I have a lot more tough topics coming up, and I won’t shy away from those in my mind, in my heart, or on this blog.  But today, it feels good to focus on having a bit less pain and feeling a bit happier because of it.

Leave a Comment » | Expectations, Limitations, Medication, Pain, Raves, Symptoms, Unpredictable | Permalink
Posted by chronicrants

Saturday night slump

September 22, 2012

It’s Saturday night and I’m the pathetic “friend” checking status updates on Facebook.  It’s 9pm on a Saturday and I’m at my computer.  I have plans.  Well, I had plans.  There’s a huge, once-a-year event that I love, and this year, for the first time, it’s just a short walk from my apartment!  I really want to go.  But I’m so tired.  And I have to be up early tomorrow.  But I want to go.  But I have to be up early tomorrow.  And I’m tired.  But it’s only once a year.

Sound familiar?  I’m sure most of you have experienced this.  I’ve certainly written about it before.  And a bit more recently, too.  And it still sucks.  I don’t expect to go out every night.  I don’t even expect to go out every Saturday night.  I just want to go out tonight.  I guess that’s asking too much.

Now in fairness, I actually could go out tonight.  I could throw on some halfway-decent clothes, walk five minutes, and hang out with friends and new people.  I could flirt with some cuties (there will be a lot of single people there, and while I’m not in a good place in my life to date now, some flirting could be fun.)  I could have a lovely time, then come home at a reasonable hour and get some sleep.  So why don’t I do this?  Well first, I’m so run down, I don’t know that I have the energy to flirt and chat with people I don’t know.  Plus, I really do have to get up early and be active (active by my standards, at least) tomorrow.  I should have planned that better, but I had forgotten to put tonight’s event in my calendar, so I forgot about it when I made tomorrow’s unchangeable plans.  I went out last night, so it’s not like I’ve been stuck at home for days, which happens sometimes.  But I’m still just frustrated.  I was inside all day yesterday until I went out at night.  Since then, I’ve been inside all day today.  I missed the sunny weather.  I’m missing the fun tonight.  I feel like I’m missing my own life.

I want to think this is temporary.  And let’s be honest: a few months ago I wouldn’t have been able to go out to last night’s thing either, so I’m making huge progress!  And there will be another event next year.  Maybe I should put that in my calendar now.  But then, what if it isn’t temporary?

I feel like I should apologize to you.  I sound like a whiny kid, all upset because I’m only getting some of what I want.  And that’s true.  As we all know, when you’re living with a chronic illness, there’s a lot you don’t get.  Sometimes I can handle it, sometimes I can’t.  Today isn’t one of the better times, but I’ll get through it and life will go on because really, what other choice is there?  So tomorrow I’ll be a happy, mature adult.  But for tonight, I think I’ll indulge in a bit more whining.

2 Comments | Expectations, Frustration, Isolation, Limitations, Rants, Symptoms, Unpredictable | Permalink
Posted by chronicrants

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