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

Ups, downs, and all arounds

September 21, 2011

It started with a great fantasy.  I started daydreaming about winning the lottery and not having to work anymore.  I thought about quitting my job and fixing my health.  I’d go to the gym and do physical therapy, I’d get massage therapy and acupuncture.  I’d buy a house with central air conditioning.  Oh, how nice it would be.  When I felt healthy enough I’d do volunteer work.  And I’d feel better.

 

This was on my mind so much that I had trouble falling asleep.  Then, it was a poor, shallow sleep.  The alarm went off this morning and I was exhausted.  The shower woke me up a bit and breakfast woke me up more, and just before I left the house the sun came out.  The sun!  Suddenly I was awake and cheerful.  I love the sun.  Somehow, I stayed energized through my commute and still felt ok when I got to work. ( This is very unusual – normally by the time I get to work, I feel like I’ve already spent my energy for the day.)  Today I was strong and productive at work.  It felt great!

 

After work, I came home and moved my car.  While driving around for 15 minutes looking for a legal parking space that wouldn’t obstruct tomorrow’s all-so-important-yet-ineffective street cleaning, I suddenly lost all that energy.  It was just gone.  Kaput.  I’d been feeling good and having a great day, and without noticing, I’d spent all of my spoons.  If you don’t know what I’m talking about, read about the spoon theory here.  My spoons were gone.

 

Luckily, I found a dirty, bent spoon in reserve, and I was able to fix it.  I sat in the car for 15 minutes.  I thought about picking up my phone, but that took too much effort.  I wanted to put on a sweater, but that took too much effort.  Instead, I just sat.  I didn’t move.  After a while, I felt much better.  I’d resurrected a spoon.  That doesn’t always work, but this was a lucky day.  I still managed to meet my cousin as planned and have a lovely dinner.  After dinner, I suggested we walk.  We walked a lot farther than I really wanted to, but I knew it was important.  I needed the exercise, to build upt tomorrow’s reserve of spoons.  And it’ll help me sleep better.  I hope.

 

It was a good day overall.  The setback was minor.  But it was a good reminder to be careful.  Energy can disappear without warning, so I have to always be mindful.  Always.

 

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1 Comment | Frustration, Limitations, Pain, Rants, 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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