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

Welcome back nausea

September 23, 2011

Well, maybe “welcome” isn’t the best word.

 

I started my most recent round of Prednisone back in April.  Now, 5 months later, I’m slowly lowering the dose.  I’ve tried to lower the dose three times already, but each time I had the symptoms return and had to up the dose again.  This time, so far, it’s going ok.  Except for the return of symptoms.

 

Back in April, I had tried a few alternatives with no luck, so I returned to Prednisone.  It comes with many side effects, as most of us know.  Sure, long term I may be at risk for osteoporosis or heart problems, but right now I’m focused on the short term side effects.  Let’s see… there was the hyperactivity.  I kept talking too much and too fast, even faster than normal (which is already too fast.)  I was always hungry.  I wasn’t sleeping as much.  I gained back all of the weight that I had just finished losing from the last round of Prednisone, years earlier.  But then there were the good side effects.  I had a lot of energy.  The fatigue was mostly gone.  And the nausea went away.  Oh, that was heaven.

 

As I’ve lowered the dose of Prednisone I’ve noticed a drop in energy.  This has been difficult and frustrating.  I loved being able to keep up (well, somewhat) with my friends.  I’ve been trying to adjust back to my “old” levels.  But then yesterday the nausea hit me.  After months of almost no nausea, I had started to get used to it.  I could eat whatever I wanted (within my limited diet) and feel just fine.  I didn’t have to worry about feeling horrible for no reason.  I could simply eat a meal or a snack.  Easy.  It was bliss.  Then yesterday, my stomach was bothering me in the afternoon.  It wasn’t my period.  It couldn’t be what I’d eaten.  It wasn’t the amount I’d eaten.  It felt almost like…. BAM!  It hit me.  I knew what it was.  The symptoms were back.  And, sure enough, I had a perfectly good dinner tonight, healthy and well-proportioned and conforming to my diet, and felt horrible afterwards.  Oh yeah, I’m returning to normal all right.  Too bad.  I really loved not feeling nauseated on a near-daily basis.  What a wonderful treat.

 

Still, there’s nothing much I can do about it.  So it’s time to stock up on the foods and such that make me feel better (carbs, mint, Pepto, etc.) and just deal with it.  It sucks, but there’s nothing to be done.  At least I’ll be at less risk of osteoporosis and whatever other side effects Prednisone causes.  I guess that’s a good thing.  Sort of.

 

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

Great folks make it all a little less bad

September 22, 2011

For two months I had a friend’s party scheduled in my calendar.  I was excited to go.  This is a group of people I don’t get to see as often as I’d like and I knew it would be fun.  Then I had an episode and all plans were kaput.  I didn’t even get to email him about it until afterwards.

 

This is a couple I really like, and they know I have health problems, but we’ve never gotten into all of the details.  [Then again, I don’t get into details with anyone, so I guess that’s my issue.]  I really hated missing the party, but I also felt bad because I’d cancelled plans with them so many times recently.  I just can’t seem to get a handle on my health, or any sense of predictability.  This is hard for me to handle, but even harder to explain.  So I emailed each of them, apologized, explained, and included a link to the spoon theory.

 

They are such wonderful people.  He wrote back and explained that an old girlfriend had (and has) fibromyalgia and that he understood why I kept having to cancel.  He said not to worry and that he’d keep inviting me to things.  Then he posted the spoon theory on Facebook and encouraged others to read it!  His partner emailed me and said that when I show up they’re thrilled and when I don’t they’re thinking of me.  She said not to worry, that she’d keep inviting me to things.  They each said that I don’t have to explain or apologize.

 

These are fantastic people in so many ways.  They are sweet and giving and always thinking about others.  Still, you never know how people will respond, right?  I’ve certainly had people feel insulted when I skipped important events, even though it was not my fault and couldn’t be helped.  But to have people in your life who understand?  That makes all the difference.  If you don’t have people like this in your life, please get some.  Positive relationships can make it all bearable.

 

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1 Comment | Educating, Expectations, Kindness, Raves, Support, Symptoms, Thoughtfulness, 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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