A little support from well-known strangers

August 8, 2012

Last night was a bad night.  A very very very very very very very bad night.

After 6 weeks on a strict elimination diet, I thought I was done with the bad GI episodes.  The daily and near-daily nausea, diarrhea, constipation, cramps, and abdominal pains were gone and I was thrilled.  I also hadn’t had an episode in a while.  For me, an “episode” involves diarrhea, nausea, and abdominal pains so bad that I start to wish for death.  An hour feels like 10 hours and I wonder if it will ever end, even while a little voice in my head tries to tell the rest of me that it’s only temporary.  It’s hard to believe that voice.

I love Tuesday nights in general because it’s the night of the Chronic Babe chats.  I rarely make plans in the evenings, but when I do, I try to avoid Tuesday nights.  There’s a great community there that’s so different from anything else, and I always leave the chats feeling better than I did when I started.

So last night a friend wanted to come by to pick something up from my place.  I told her she’d have to leave by 9pm because of the chat and she completely understood.  I felt a bit off all afternoon, and 10 minutes before she was due to arrive I started feeling really lousy.  I didn’t cancel, though, because I figured she was already on her way and I knew I could always kick her out if need be.  She’s an old friend who understands.  Besides, I was trying hard not to admit there was a problem.  So she came and we chatted a bit, and all the while I was feeling worse and worse.  I finally asked her to leave.  I couldn’t figure out what it was.  I was in denial.

Then it hit.  The GI symptoms were as strong as ever.  It didn’t make sense – this was supposed to be over!  I sucked on the Pepto tablets and rocked back and forth on the couch, running often to the toilet, hoping it would be over soon.  After what felt like several hours I looked at the clock – it had been 30 minutes.

Eventually the symptoms lessened enough that I was able to pass out on the couch.  A while later I woke up and stumbled to my bed.  Thank goodness.

And this morning I got the most wonderful treat: two of the other regulars in the chats had emailed me, each asking if I was ok!  I had told one of them I’d definitely be there last night, and I’m usually there every week, so they were concerned.  How sweet!

The amazing thing is how much we know about each other without actually knowing each other.  I’m still a bit paranoid about anyone finding out who I am, so no one knows my name, even my first name.  No one knows anything that could identify me.  And to be honest, I don’t know much about them either.  I know one’s occupation.  I know one’s first name.  I know about their pets and families… but I don’t know who they are.  Just like they don’t know who I am.  This is a new experience, having a support network of people I don’t know.  It feels odd, but I like it.  I like that we care about each other and that we understand each other.  I like that we do not place any demands on each other, but we are still there to support each other.

And I love that I found two caring messages in my inbox this morning, when no one else had even known I was especially ill.  It makes a big difference.


Boring upheaval

July 11, 2012

I haven’t been posting much in the last few weeks because I don’t have anything to say.  Well, that’s not true; I have a lot to say, actually.  I have lists of topics.  I have posts that I started but haven’t finished.  So I guess the more accurate way to put it is, there’s been nothing much that I’ve wanted to say.

Life feels like a boring upheaval.  Every day is difficult and every day is boring.  Every day is stagnant and every day is a challenge.  To some of you that will make no sense, and to others it’ll be spot on.

It used to be that I left town at least every month or two.  Even if I didn’t go far, I went someplace.  I got on an airplane at least three times a year.  Now, my last flight was a year and a half ago.  The last time I left town was in April, and that was only for a couple of days. The last time before that was in 2011.  It’s been too long.

Weekdays are slow because friends are at work.  Weekends are slow because I don’t feel up to doing anything outdoors on hot days.  Nights are slow because I can’t make plans since I never know how I’ll feel from one day to the next.

I have so much to say, but somehow, none of it seems relevant at the moment.  I’m sure that will change.  At some point you’ll just want to shut me up.  But for now I’m keeping somewhat quiet.


Feeling trapped

July 6, 2012

It’s probably been only a few weeks, but it feels like so much longer.  The heat rose, and the dew point rose, and I started spending more time indoors.  Now I feel stuck.

When you live in a climate with long, cold, snowy winters, I suppose it’s natural that people want to spend their summers outside as much as possible.  The problem is, I can’t be out in the heat and sun.  This is really hurting my already-sucky social life.  I can’t seem to make plans with anyone outdoors, and there isn’t much happening indoors, especially since my new diet makes it nearly impossible to go out to eat.

Part of this is surely in my head.  I could probably find something to do and make plans and people wouldn’t mind staying in doors.  Probably.  Maybe.  It’s hard.  Tomorrow a friend is having a bbq, but it’s supposed to be hot and humid and I just don’t think I can go.  If only it was going to be cooler out….  Next week a friend and I want to meet up for lunch.  I’ll bring food, since I won’t be able to eat at most restaurants, and we’ll picnic.  But again, this only works if it’s cool enough and not raining.  It’s getting harder and harder to find free, or at least inexpensive, things to do indoors.

I’m sure this is a common problem for heat-sensitive people.  How do you handle it?  What activities do you do indoors?  How do you explain it to people?  I need to get out of the apartment occasionally and be around other people!


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.