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…..

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.

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.

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.

Even the best laid plans

August 19, 2011

Today was the day.  Today was the day I was finally going to the gym.

I’ll back up.  Not so long ago I didn’t have a job.  When I didn’t have a job I exercised either at the gym or at home about six days a week.  I’m a couch potato, so this is huge.  I felt great.  It was definitely helping me.  Then I got a job and that quickly ended.  Still, I tried to keep exercising.  I did some stuff on weekends, and I took a walk every work day on my lunch break, even in rain, cold, and snow.

Then spring hit.  If you have autoimmune diseases you may know what I’m talking about.  Thanks to the pain, fatigue, weakness, and nausea, exercise stopped.  Forget the gym, I didn’t even do accidental exercise.  You know what I mean?  Accidental exercise is the unintentional stuff, like walking to the store for milk, or walking to the T (our subway) for work (I’ve been driving instead) or walking around a park.  To avoid the heat and humidity, I go from one air conditioned place to another, where I’m usually sitting.  This is not good.

I feel lousy from the symptoms, but also from the lack of movement.  Then two days ago, the weather turned briefly for the better.  After work I changed my clothes, put on sunscreen, and headed out into the beautiful, sunny, not-too-hot, not-too-humid evening.  It felt great.  I came back after a mile literally dripping with sweat.  Yeah, it was gross.  But I felt good!  I swore I’d do it again, but of course the next day the humidity returned.

So today I was going to the gym after work.  It’s tough, because I return to a humid apartment (it takes a while for the a/c to kick in) and I don’t feel great afterwards, but it seemed worth a try.  I was going.  I brought clothes with me to work.  I brought sneakers.  I brought music (not that I go anyplace without it anyway.)  Then I made the big mistake: I went out to lunch.

Why was this a mistake?  It was a short walk to the restaurant, but it was enough.  The humidity got to me.  I’ve been queasy ever since (5 hours ago.)  I knew I had to skip the gym and I felt lousy about it.  I felt better about my decision when I got home and stepped up the one, yes, just one, step into my apartment building.  Like it was slow motion, I became aware of my foot slipping off the step and my whole body headed toward the ground. Luckily, I managed to avoid injury (or re-injury) to anything other than my pride.  If I couldn’t handle that one step, it’s a good thing I didn’t attempt the gym!

It’ll be a busy weekend, but next week, I swear, I’m making another attempt at the gym!  And I’m putting it here so that you can hold me accountable.  Need a virtual gym/exercise buddy?  Leave a comment or tweet me (@CIRants) and we can motivate each other.

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.

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.

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