If only I could help

August 18, 2011

I participated in a great chat tonight on the Chronic Babe forum.  Overall, I really enjoyed it.  The one tough part was hearing about everyone’s problems and not being able to help at all.  Sure, I offered advice when I could, and lent an ear (well, eyes… it was online, afterall) but that just didn’t feel like enough.

Family and friends often say that they wish they could help me in some way.  I feel bad, because I know they just want to help, with the purest of intentions, and there’s very little they can do.  They are amazing people who do more than they can imagine by listening and lending support, but I do understand their desire to do something concrete and actionable.  That’s how I feel now.

I can’t do much to help these strangers online, but I do hope my random thoughts, advice, and encouragement did a little bit of good for someone, somewhere.

As for my family and friends, I try to be less stubborn from time to time and let them help me with so-called little things. It makes them feel better, and to be honest, getting help is a good thing for me, too.  A little help moving something, or help with and errand, can go a long way.  For you folks out there trying to help others, remember that those little things you do can add up to a lot of help for someone else.  Don’t underestimate the incredible effects of your actions or of your intentions.  They do a world of good.

Leave a Comment » | Frustration, Isolation, Limitations, Rants, Raves, Support, Thoughtfulness | Permalink
Posted by chronicrants

Paring knife: 1, Me: 0

August 17, 2011

I still don’t know how it happened.  Ok, I admit it, I’m not exactly an expert chef.  But I do know how to chop garlic.

Yeah, I don’t know how it happened, but I know why it happened.  Meds.  Those darn meds.  I got used to the lack of sleep from the steroids.  I’ve adjusted to that over the months.  But several weeks of crazy dreams on Plaquenil has me at a new level of brain fog.

I know how to chop garlic, really, I do, but somehow my thumb got under the knife.  There was the initial, “Huh, I seem to have cut myself.”  A couple seconds later I realized it hurt.  Hmmm.  Brain fog.  Oh look, some skin is hanging off.  And there’s some blood.  I considered continuing to prepare dinner, then realized I might get blood in my food.  More brain fog.  Better clean up.  Ok, clean.  Now what?  Oh, right, back to chopping garlic.  Then I almost did it again.  If the skin had still been there, I probably would have cut it.  Good thing it was already missing.

It’s just a tiny cut.  The bleeding stopped almost immediately.  It’ll heal in no time.  But this brain fog better go away soon.  It’s getting annoying.

Meds have all sorts of warnings about handling heavy machinery.  They should add kitchen knives to the list.

1 Comment | Limitations, Medication, Rants, Symptoms, Unpredictable | Permalink
Posted by chronicrants

Shutting off the "good" switch

August 16, 2011

Almost every night it’s the same thing: I start to feel better as the hours pass.  My body naturally does better in the evenings, and having some time at home (away from work) helps too.  I start to feel better and even less tired, so I want to make good use of the time, I want to enjoy it, even by doing something simple like reading a book or watching a movie.  So what’s the problem?  The problem is that I still work in a 9-5 world, and that means waking up much earlier than my body would like.  It means that if I go to bed at a “natural” time then I’ll feel horrible in the morning and through much of the next day.  On the other hand, it’s hard to consciously choose to go to bed early when I’m finally enjoying my day (well, night.)

So now it’s not too late, and I’m feeling good.  I want to stay awake and continue to feel good, but what I should really do is take a pill so that I’ll fall asleep in an hour.  That means I’ll wake up feeling less bad.  But is it worth giving up “good now” for “less bad” tomorrow?  I just don’t know.  I better hurry up and decide, though, if I’m going to take that little pill right now.

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

A truly inspiring story of not providing inspiration

August 15, 2011

A couple weeks ago I wrote about Stories of Inspiration, which I simply do not find inspiring.  There is an expectation that anyone with a disability of any sort is supposed to rise above any setbacks and accomplish great feats.

There are many ways to look at these stories and expectations.  I was so touched by this woman’s story of her daughter that I just had to share it.  Her daughter is lucky to have such an amazing mother.  I also love her attitude.  She admits to falling prey to these same expectations, as so many of us have.  Then she explains how her understanding evolved.  I can’t possibly explain it as eloquently as she has, so please take a moment to read her story.

1 Comment | Expectations, Raves, Support | Permalink
Posted by chronicrants

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