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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Leave a Comment » | Decisions, Expectations, Rants, Symptoms, Unpredictable | Permalink
Posted by chronicrants

Missing life

September 25, 2011

Do you ever feel like you’re missing out on life?  Yeah, me too.  Sometimes it’s missing out on an event and sometimes it’s missing out on entire days of, well, life.

Now, I understand that we all have limitations.  And yes, some of us have more limitations than others.  I just feel that if the limitations are to the extent that I’m not enjoying life for long periods of time, then what’s the point in living?  Something has to change.  As I’ve written before, for me that change will begin with taking some time off from my job and then returning as a part time worker.  Unfortunately, that’s not financially sustainable in the long term.  In the short term, though, it should give me a chance to get my sleep on track, exercise more, and play around with diet adjustments.  Plus, while it lasts, I hope to rejoin the outside world and return to my old social life.  Sure, my social life is limited by my abilities, and I can accept that.  I just can’t accept where I’m at right now.  I need more than this.  It’s time to be proactive and make some changes.

I wonder what kinds of proactive changes others are making to improve their lives?  Feel free to comment below.  It would be great if we could all help each other out with some new ideas.

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Leave a Comment » | Decisions, Expectations, Frustration, Isolation, Limitations, Rants, Symptoms, 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

Getting beaten up by my job

September 20, 2011

At the risk of being redundant, I’m writing about the whole job thing again, because it’s on my mind again.  Well, still.

I used to be so grateful that I could work full time.  And I suppose I’m still grateful that I’m able to do it, it’s just that “able to do it” is defined differently now.  Before, I could work and have a life and feel good.  Now, I can work or have a life and feel good.  This is not a good choice to have to make.  I’ve accepted that I need to work part time, and having made that decision gives me some peace of mind.  The problem is, it’s not so easy to find a part-time job, even at 4 days a week, that pays enough.  I don’t live an extravagant lifestyle.  Actually, I wish I did, because then it would be easy to cut down.  I spend relatively little, and I save as much as possible so that I’ll have some money for when the day comes that I can’t work at all.  Still, I have to pay the rent, and buy food, and all that other stuff.

I’m willing to work.  I just don’t want my work to be more effort for me than a healthy person’s full time job is for them.  I figure that means I should be working about 3 partial days a week.  Yeah, that’s no good.  Maybe I’ll win the lottery.  In the meantime, back to the job boards….

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

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