Taking a leap

September 30, 2011

Well I did it.  I took the leap.  After thinking about it and writing about it, I finally started the process of taking a medical leave of absence from my job.  I’m not happy to have to do this, but I’m hoping it will help me to feel better.

I have the best, most supportive family and friends.  I am so grateful to have them in my life.  I can’t imagine how I’d be managing all of this without their support.  I can’t say enough good things about them.  They’re amazing, wonderful, fantastic, loving, caring people.

And on that note, I am going to try to get some sleep now, to rest up from this emotionally exhausting day.  Here’s to tomorrow: a new start.

 

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Can money buy (less bad) health?

September 28, 2011

This week’s carnival topic at ChronicBabe really piqued my interest.  I’ve never considered this exact question before, so I really gave it some thought.  The question is:

If you could receive one gift to help you through this life with illness, what would it be? It can be tangible or intangible, something for you alone or something for you to share.”

Before you read on, I hope you’ll give this some thought too.  What is it that you would want?  Got it?  Ok, now for mine….

I’m going to base mine on reality.  What I really want is a magic cure.  Unfortunately, I think that’s about as likely to happen this year as the

20120809_220808people of Boston obeying traffic signs (really people, is it so hard?)  My second choice would be a working crystal ball.  Sure, I’d feel lousy, but at least I’d know what to expect and how to plan for it.  But that’s right up there with tomorrow’s storm clouds raining chocolate instead of water.  So I’ll go with my third choice: money.  Yes, money.  Does that sound weird?  Ok, then I’ll explain.

I can imagine so many other possible gifts that could help me, but at the end of the day, it’s money that would enable them all.  I’m not saying that money is the most important thing to have.  I think it’s much more important to have love and support.  I am so lucky that I already have those things from my incredible family and friends.  It would be wonderful to have a significant other for additional support, but that’s not really something that comes in “gift” form, does it?  (But maybe it should!)  Money, on the other hand, could buy so much.

What would you do with some money?  I’m not talking about $50,000,000 from the lottery.  I mean, what if you magically had the same amount of money you earn either from the job you have or from the job you would have if you worked?  I don’t live an extravagant lifestyle.  If someone gave me enough money to live off of (I figure $1,000,000 invested well would provide enough interest for me to live off of indefinitely, or else if someone wanted to give me $30,000 a year) then I’d be doing so much better.  Money can’t buy health, but it can let me obtain things and do things that would improve my health, or at least stop its deterioration.

First, I’d quit my job.  No doubt.  I’m getting ready to take some disability leave, but that’s a short term solution at best.  I need to not work.  Without a job, I would do my physical therapy daily and go to the gym regularly.  I’d get proper sleep and really focus on my diet.  I’d spend more time with my family and friends.  I’d still have some time to fill, so I’d volunteer.  I love volunteering.  I could help people, but have enough flexibility in my schedule to take care of myself firstimg2 and foremost.  I know, I know, this sounds like those things people always say they’ll do but it never happens, right?  But I was unemployed for a quite a while not too long ago and I did these things and felt so much better.  I’d be thrilled to do it all again.

Next, I’d get massage therapy and acupuncture regularly.  I’m supposed to do that now, but who has the time or money or energy for such things?  I already spend thousands each year on my health, and time and energy are so scarce, being sucked away by my illnesses and by my job.

Now, if I had a lot of money, I’d buy a house.  It would be a nice little house, and it would have some health-improving luxuries that I lack now: laundry on a main floor so I wouldn’t wear myself out doing a single load; a parking space so I wouldn’t have the stress of searching for parking or the difficulty of Photo 1walking to and from more distant spaces; a ramp so I wouldn’t have to deal with stairs; central air conditioning so that summers would be a little less tortuous.  These are the luxuries I dream of.

Some nights I stay up late dreaming of winning the lottery.  What I’d do with the money is easy: I’d give money to loved ones, and I’d give huge gifts to my favorite nonprofits, I’d put it towards curing these illnesses we all have, and I’d feel better.  But getting it is pretty unlikely (but maybe just slightly less unlikely than the magic cure I mentioned earlier.)  Or maybe one day someone will click on the “Donate” button in the sidebar and give me some huge amount of money.  That’s not so likely either (right up there with flying pigs, perhaps?)  Instead, I’m trying to focus on the more likely things (like lots of small donations, or the stock market improving.)  I’m trying to be proactive.  My goal is to make the money for myself without working full time.  Sure, I’d love to get it as a gift, but in case that doesn’t happen, I’ll do the best I can on my own.  Starting a consulting business will be slow, but if it works, it will give me the flexibility of schedule and location that I need.  And before I know it, maybe I won’t be working “full time” anymore.  Ah, to dream….

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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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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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