When do we get *our* vacations?

August 23, 2011

Ok, this title sounds a little whiny.  Fine, it sounds very whiny.  But let’s face it, sometimes we’re just aching for vacations from our bodies, right?  Well, I ache for a vacation from mine, anyway.  I want some time without symptoms.  Please don’t get me wrong, I LOVE the days when the symptoms are diminished for whatever reason.  I savor those days.  I use them to their fullest extend.  But there’s never a day without any symptoms at all.

Actually, come to think of it, a day with reduced symptoms is sort of like an almost-vacation, and I think I’d be happy to have more of those, if they were somehow predictable or, better yet, if I could schedule them.  Gee, that’d be nice.  Can you imagine what it would be like to know that next Thursday would be a symptom-lite day?  Or to makes plans with friends and know in advance that you’d feel great, or that at least you wouldn’t feel horrible?  Wow, imagine that…..

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Posted by chronicrants

Sleepless sleep

August 22, 2011

You know how sometimes you wake up after a full night’s sleep and feel like you didn’t sleep at all?  It’s annoying, right?  Well, the first day for me was annoying, but after a few weeks, it’s moved beyond that.

I had many ideas for posts today, and now I can’t think of any of them.  All I can think about is how badly I want to sleep, all the while knowing how unlikely it is that I will feel rested in the morning.  
I could go off the Plaquenil at any time, but I think it’s helping.  So far, it’s worth it.  But the crazy dreams are frustrating, disturbing, and exhausting.  So when is it not worthwhile anymore?  I think that’s a question that a lot of us ask ourselves often: when do the sides effects of the drugs become more palatable than the symptoms of the disease?  Or vice versa.  So far, it’s worth it.  One day it might not be.  
In the meantime, if I’m lucky, maybe I can go to sleep and forget about it for a few hours.  That would be nice for a change.

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

Dating in the CI world

August 21, 2011

How do you date when you have chronic illnesses?  I’ve been doing it for years, and I’m still not sure what the answer it.  I read this post today, and it made be wonder how others get from single-and-scared to married/in a relationship.  How do they cross that huge barrier?

I’d like to to think that if someone could get to know me without knowing about my illnesses, they’d come to love me and not care about the CIs.  The truth is, that won’t happen.  There’s no way someone will get to know me without knowing about the CIs because I can’t get through more than one or two dates before something happens that clues them in.  I may not explain everything right away, but there will be some limitation that makes it obvious there’s something going on health-wise.  So how do you get past that fear of rejection?  How do you get past the fear of pity?

People do it every day.  I’d love to learn how.

Leave a Comment » | Expectations, Isolation, Rants, Symptoms, Unpredictable | Permalink
Posted by chronicrants

How do you do the basics?

August 20, 2011

How do you manage the basics of life?  Really, I want to know.

Today my issue is laundry.  I’m ok for a few more days, but it does have to happen soon.  Very soon.  I planned to do it last night, but it was so humid out, and humidity triggers all sorts of symptoms.  I have a/c in my apartment, but unfortunately I do not have laundry in my apartment.  I’m lucky to have laundry machines in the basement of my apartment building, but it does get very hot down there, and carrying laundry to and from the basement would be bad.

I have some options.

  • I could do laundry at my parents’ house, with their lovely central a/c (I just have window units), but that’s inconvenient.  I have weekend plans that I would have to give up, since they live close, but not that close.  Driving out to them on a weekday after work is out of the question – that’s way too much strain for my body.  
  • I could go out and by some new socks and underwear.  Of course, I could spend that same time driving to my parents’ house.  
  • I could could suck it up and do laundry now, and just deal with suffering the consequences.
  • I could wear dirty clothes for a while.  (Hey, I never said these were good options.)
  • I could ask for help from a family member or friend.  I suck at asking for help.

What do you do in these kinds of situations?  I’d love some input.  I’m at a loss.

1 Comment | Frustration, Limitations, Rants, Unpredictable | Permalink
Posted by chronicrants

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