But I want to work!

June 20, 2012

I was at a support group for people with chronic pain.  This group meets in the mid-morning on a weekday so, unsurprisingly, none of us are currently working.  As we went around the room talking about recent frustrations, I kept hearing a theme: I want to work.  One woman talked about the stress of having to declare bankruptcy.  Another spoke about getting turned down for Social Security.  I was having problems with a private long term disability insurance company.  Many spoke about money troubles.  A couple mentioned not being able to take care of their kids.  Several didn’t like having to rely on their spouse for financial support, as well as help around the house.

What do these all have in common?  We want to be well!

As I listened to everyone speak, I was thinking how much I’d love to have a transcript of that meeting to show all of the doubters.  There are too many random people in society who think that we’re just trying to get “easy” money.  There are the politicians and bureaucrats who seem to think we’re all trying to scam the system.  There are the insurers who insist that we’re not really too sick to work.  And yet over and over I heard people saying that they wish they could go back to work.  Some said it indirectly and others used those words, but we were all saying the same thing.

I hated my last job.  I won’t pretend otherwise.  But I still want to go back to work.  I want an income, I want independence, and I want control over my own life.  Right now, I would love nothing more than having the choice of returning to work.  Sadly, that is out of my control, just as it’s out of the control of the others in the support group.  If only the doubters understood just how much we want it.

Leave a Comment » | Educating, Frustration, Insensitive, Limitations, Politics, Rants, Symptoms | Permalink
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A new low: watching my health affect my parents’ retirement

June 17, 2012

Over a nice Father’s Day dinner, my parents and I started to talk about their plans for cleaning out their house.  They moved into that house more than 30 years ago, when I was just a toddler, and it’s finally time for them to move.  I know I’ll be sad when the time comes for them to leave it, but right now I’m really happy for them.  The house is a drain on them financially, mentally, and emotionally.  The houses they are looking at are new, filled with sunlight, large, and in great 55+ communities.  Plus, because of where these places are located, they are cheaper than my parents’ current house!  This will be a great move.

They decided to put the house on the market next spring, and I mentioned that at dinner in relation to how much time they have to clean out the stuff that has accumulated over 30 years.  That’s when they dropped the bombshell: they aren’t so sure of the date anymore.  They gave a couple of obvious excuses, but then pointed out that I might need to move in with them, and that would be difficult if they moved, especially if it was a 55+ community.

This floored me.  It’s not like it hadn’t occurred to me that I might have some financial problems paying rent in the near future, but somehow I kept ignoring the reality of it.  I have enough savings to last at least a few years (if I drain my retirement account too and live very cheaply), and it’ll be even longer if LTD comes through.  Then again, I might really be stuck at some point.

My parents and I get along really well, and I think we could live together pretty happily except for two things (from my perspective, at least):

  1. I think they should get to enjoy their empty nest.
  2. I think I should get to enjoy my independence.

I have worked hard for many years to save up a decent amount of money.  I am in my 30s and should be enjoying life.  I should not be forced to move in with my parents.  But more than that, my parents have worked hard for many years to save up the money to retire.  They are in their 60s now, will retire soon, and should be enjoying their new-found freedom.  They should not be forced to support their grown daughter.

There are many illness-related reasons why I may end up living with my parents but I truly hope it doesn’t happen.  It wouldn’t be fair to me or to them.  Especially to them.  They have taken care of me and raised me and it’s time for them to live their own lives.  This shitty illness shouldn’t be a drain on them.

But I am incredibly lucky that they are willing to turn their lives around to take care of me.  Damn, I’m lucky.

2 Comments | Expectations, Frustration, Kindness, Limitations, Rants, Support, Thoughtfulness, Unpredictable | Permalink
Posted by chronicrants

A homebody, but not always by choice

June 12, 2012

It’s 9pm on Tuesday night and I am sitting in my apartment typing this.  The last time I went outside was on Sunday afternoon.  I wish I could say this never happens, that I never get confined to my apartment, but sadly, it happens far too often.

So many people comment on how good I look, or on how cheerful I am, or on how well I seem to handle all of my health problems.  What they don’t understand, even when I try to explain it, is that the reason I always appear so well to them is that they simply don’t see me when I’m not doing well.  Simple.

They also don’t understand that I’m not hiding from them.  It is very rare that I stay home so that someone won’t see me looking or acting ill.  It’s actually the opposite – they don’t see me looking or acting ill because when I feel that bad, I don’t have the energy to leave the house anyway.

So that’s where I am right now.  I felt so lousy yesterday that I skipped my errands.  I still felt horrible today, so I canceled my plans.  When I do eventually see people I’ll appear to be doing better, because if I don’t feel up to leaving the house, then I’ll just stay home.  I’m sick of my pjs and I’m tired of sitting on the couch, but right now, it’s really all I can manage, so I’ll just have to go along with it.

Oh, and in case you’ve been following and you’re wondering, yes, this is my body’s payback for the other night.  And it’s completely worth it.

Leave a Comment » | Educating, Frustration, Isolation, Limitations, Rants, Symptoms, Unpredictable | Permalink
Posted by chronicrants

Stairway success

June 4, 2012

As I carefully avoid gluten and dutifully do my physical therapy exercises, not to mention generally taking care of my body, I’m trying to be aware of the small improvements.  I’d love to wake up tomorrow and feel fantastic, but I know that won’t happen, so I want to be realistic about small wins.

Today’s small win is against my staircase.  I live on the third floor of my apartment building.  I only considered a third floor apartment because there was an elevator in the building.  Of course, when the elevator breaks down (which happens more than you’d think) then I have to take the stairs.

My knees started to bother me on stairs and hills many years ago, probably around 1999.  Earlier that year I’d climbed the stairs up La Sagrada Familia in Barcelona – I later discovered it was about 450 stairs.  By the next year, a single flight was incredibly painful.  As I’ve been strengthening my muscles, I’ve hoped to be able to climb more stairs without feeling like my knees are filled with jelly.

The goal was never to climb 450 stairs again.  I mean, I wouldn’t complain if I had that option, but again, I’m trying to be realistic.  I figured that if I could climb the stairs to my third floor without any pain, that would be amazing.  I have been working on this for a while now.  I won’t say that it’s completely painless, and I don’t even try it when I’m carrying anything heavy, but when I reach my floor, I can actually walk down the hall without limping, and within a few minutes the aches are gone!  Even better, I can get to the third floor without that jelly feeling!  And for the first time in the 6 years that I’ve lived here, I can now climb all the way from the 1st floor to the 3rd without having to stop and rest on the way up!!

I’m not running up 5 flights of stairs, I’m not looking for stairs instead of elevators everyplace I go, and I’m not choosing the stairs when I’m carrying extra weight, but for me, this is a WIN!

Leave a Comment » | Expectations, Limitations, Milestones, Raves, Symptoms | Permalink
Posted by chronicrants

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