The subjectiveness of a “good” day

July 2, 2012

Sometimes I write about what a great day I’ve had healthwise.  Sometimes I write about a lousy day.  Right now, I’m not sure what I’m having.

One year ago I was struggling to get through each day.  9 months ago I left my job because I just couldn’t manage.  6 months ago I couldn’t read books because I always fell asleep.  I needed naps many days.  I could barely socialize.  3 months ago I had slightly more energy.  I wasn’t napping as much.  I could go out more, but only slightly more.  And today I don’t know what my limits are.  I know I have them, but I don’t know how to define them.

Ideally I wouldn’t have limits, or at least I’d have the same limits as most of my friends.  Chances are that I’ll always have extra limits, and I can probably live with that as long as they’re a lot fewer than what I’ve been dealing with in the last year.  The thing is, in the last year they’ve been changing so much.  Six months ago I wouldn’t have tried to visit with my grandparents for an afternoon and then come home, relax for a while, eat dinner, then take a walk in the evening.  But recently I did that!  For many people this wouldn’t seem like much: have a conversation for a few hours, relax for several hours, then take a 15 minute walk?  But for me that was huge.  I could probably do that today if it wasn’t so hot out and that’s exciting.  But I know I couldn’t do that every day, and not even necessarily any day.  So where’s the line?

I just don’t know.  The 1-10 scales aren’t accurate because they depend not only on memory and perception, but also on mood and on the status of that exact moment.  I could keep track of how I feel each day in a journal or using an app, but it still wouldn’t tell me what my limits are.  Clearly the big problem is that I’m afraid to push my own boundaries.  After so many bad results, now I want to play it safe.  The result is that sometimes I don’t realize that I could do more, or I know I could do more but I don’t know how much more.  A “good” day is now one where I don’t feel lousy.  I need to change that, to make it so that a good day is one where I do more than I did last week, and where I still don’t feel lousy.

I guess that’s something to aim for tomorrow: a new kind of good.

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Posted by chronicrants

Know –> Hope

June 22, 2012

I wish people would stop trying to reassure me.

I’m in a huge amount of pain right now.  It’s probably from the storms we’re getting, but of course it’s always possible that it’s from something else.  A friend said that, based on the weather forecast, she’s sure I’ll be fine in a couple of days.  But she can’t know that and I hate when people say it.  It could be weeks or months before I get back to my “normal” amount of pain.  And yesterday I was discussing new treatment possibilities with my mother and talking about the money issue (that’ll be in a future post), and she said that she was sure I’d get back to work sometime, but she can’t know that.

They mean well.  I really do appreciate that they want me to feel better.  But saying these things is just about the worst thing they can do to “support” me.  For 20 years I’ve heard people say that they know that I’ll get better and guess what?  They were wrong every time.  It’s like saying that I know you’ll win the lottery.  Or even that I know you’ll get that job you interviewed for.  I don’t know those things.  Just like my friends and family don’t know that my health will improve.

Folks, do me a favor and just change know to hope.  I love it that you hope I’ll get better.  Just please don’t think or pretend that your desire will become fact.  Stick with that and it’ll all be good.

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

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
Posted by chronicrants

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

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