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

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

Remembering to ask for help

September 19, 2011

I’m spoiled.  I know that.  I have a fantastic support system.  Just knowing they are there if I need them makes me very lucky and very spoiled.

I’m not good at asking for help.  I never have been and it’s possible that I never will be, but I’m a ton better than I was.  After 20 years of symptoms, I’ve learned that there are times when it’s important to ask.  I still don’t ask for help as much as I should, but I do it more than I used to.

After throwing my laundry in the basement dryer last night, I ran into a neighbor on my way back to my apartment.  She was diagnosed with Parkinson’s a few years ago and I have offered many times to help her with errands or tasks around the building.  She has never asked for anything, but when I see her in the building I hold doors open for her and I help her carry things.  Last night, she asked if I could pick up something for her at the grocery store.  I told her that she had great timing, because I was planning to go after work today and I’d happily pick up anything she needed.  She seemed apologetic, kept asking if I could really manage it (she knows I have health issues too), and then started to offer an explanation.  I waved off her explanation and assured her it wasn’t necessary.  She looked uncertain, but finally believed me.  I think she was hesitant to ask for help from someone who also has limitations, but at the same time, she knew I understood.  I understand the way most people don’t.

My neighbor has friends.  I know they help her.  But I also know how hard it is to ask the same people to go out of their way constantly.  I’m so thrilled that she finally felt comfortable asking me for help.  I hope she asks again.  Some days I won’t be able to do it, but on the days I can, I’ll be only too glad to.  And I’m glad she’s accepting that it’s ok to ask.

 

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Leave a Comment » | Educating, Expectations, Kindness, Limitations, Raves, Support, Symptoms, Thoughtfulness, Unpredictable | Permalink
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How do you explain “it”?

September 13, 2011

I came across this video today, and it got me thinking about the different levels of understanding that other people have.

 

Of course, the people who best understand what it’s like to live with chronic illnesses are the people who have chronic illnesses themselves.  If you’ve got them, you probably have a pretty good understanding of the difficulties, the unpredictability, the social isolation.  Yeah, fun stuff, right?

 

I’d say the next layer are the people who knew me back before the illnesses/symptoms.  These are the friends and family who don’t have CIs themselves, but they’ve watched me go through it.  They’ve been there for me, supported me, seen the ups and downs.  I may not tell them everything, but they know more than anyone else possibly could.  And they know what to expect.  They don’t get upset or even question if I have to cancel plans at the last minute.  They ask in advance if I need to sit down, if I need different food, if they can help in any way.  These people make it all more manageable.  Thank you.

 

Then there are the strangers who just assume they understand.  They don’t get it.  On good days, I try to educate them.  On not-so-good days, I just ignore them.  I’d love to educate everyone, but some days, it’s just not worth it.

 

Hardest of all, there are co-workers, acquaintances, and new friends.  These are the folks like in the video above.  They honestly want to understand, they truly try, and most often, they miserably fail.  They equate my illnesses with their recent bout of flu, they think my pain is like the time they sprained an ankle, they assume my exhaustion can be cured as theirs can, by going to bed early for some extra sleep.  They don’t see why my health problems are so different from theirs, why I can’t just push through the symptoms.  It’s harder to educate them because they are close enough to really care, so they offer too many unhelpful suggestions.  It’s important to educate them because I will keep coming into contact with them over and over.

 

Over the years I’ve gotten better at explaining my symptoms and limitations, but I still haven’t found a way to truly convey it all.  If anyone has any suggestions, I’d love to hear them.  In the meantime, I’ll just keep trying to get my point across, a little bit at a time.

 

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Leave a Comment » | Educating, Expectations, Frustration, Insensitive, Isolation, Kindness, Limitations, Rants, Raves, Support, Thoughtfulness, Unpredictable | Permalink
Posted by chronicrants

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