Raising the bar on thoughtfulness

January 31, 2012

With all the shit forced on us all from CIs, sometimes a little thoughtfulness can go a really long way.

A close friend of mine had a baby about a week ago.  Leading up to the birth, I was so excited that she joked that her mother was the only person more excited than I was.  It was an exciting birth, but everything went smoothly and they’re all happy, healthy, and at home.

Unfortunately, the timing wasn’t great for me to visit – I had family flying in from all over the country just a few days after the birth, all coming to attend a bit family event this past weekend, so I had to delay my visit.  Finally, the day was approaching.  She lives two hours away.  Normally I visit for a few days at a time, but when her first child was born, I drove out for just a few hours, then drove home.  That was a very long day.  It was a Saturday, and I rested the next day and then went to work on Monday.  It was exhausting.  I did the same with her second child.

This time around I’m not working, but since I’m not feeling well, it will probably be more exhausting than the other visits.  Still, I can’t wait to meet the little guy!

Then yesterday my friend called – the older kids have colds.  The colds aren’t bad, but she wanted to warn me.  How thoughtful is that?!?  She’s juggling two little kids and a newborn infant, and she’s worried about my crappy immune system.  She’s just so sweet.

We’ve been friends for ages, since back when my only symptom was pain (ah, the good ole days), and so she understands better than most what I deal with, even though I hide a lot from the world (not just from her.)  And she knows that it’s not just about me being in a germy house – with little kids around, the germs spread more, and there’s no way I’ll visit without hugging the kids and playing with them.

It’s an easy solution – we’re just putting off the visit for a few days, to make sure everyone is healthy (oh, the torture of having to wait to see the little baby!)  But I know too many people who don’t think that way.  I see people shake hands when they have colds, cough into hands and then touch doorknobs, and generally be inconsiderate to the world around them.

How lucky am I to have a friend who is this thoughtful?  We all need to have someone in our lives like this.  She’s certainly set the bar pretty high for everyone else…..

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2 Comments | Educating, Expectations, Kindness, Limitations, Raves, Support, Symptoms, Thoughtfulness | Permalink
Posted by chronicrants

Facing the “real world”

January 12, 2012

2 +2 =4.  Every time.  It’s the most beautiful thing.  This is why I always liked math; it just makes sense!  Sure, there are negative numbers and irrational numbers and other weird shit, but when we’re just looking at straight-forward arithmetic, it’s the same every time.

I fell into accounting at a previous job.  I was just doing some basics, but I liked the basics so I learned more, and the more I learned, the more I wanted to do.  Before I knew it, I was doing it all and really enjoying it.

Last summer I started reading about personal finance.  I followed a link about something else entirely and ended up on a personal finance web site, where I got hooked for hours.  I read other web sites and a few books.  I’m really into it now.  And of course, saving is more important than ever, since I may not be working full time for much longer.

So if you throw together my love of math, my accounting experience, and my new interest in personal finance, it makes perfect sense that I was helping my cousin plan his first post-college budget this week.  I laid it all out very carefully.  I explained taxes, investing, compound interest.  I went over why planning is so important and what it’ll allow him to accomplish.

The most interesting part of all of this (and the point… yes, I am getting to a point) is that for the first time, he saw a glimpse of what the “real world” will entail.  He’s had some vague notions for a while, and I’ve tried to give him tips before, but this time he really got it.  He saw just how much it will cost to live a basic lifestyle.  He saw how much it costs to have a car – not just the car itself, but for car insurance, gas, servicing, etc.  He saw what health insurance costs, even before copayments and deductibles.  He saw that all those dinners with friends and quick coffees on the go really add up.  And it hit him hard.

I’m glad he’s seeing what’s involved in the “real world.”  Some of it sucks and some of it rocks, and it’s easy to leave college expecting all of one and none of the other.  I’m trying to show him some balance.  In some small ways I miss the carefreeness of those high school and college years, when someone else was ultimately responsible.  It’s scary as hell right now to face such an uncertain future, where I’m not sure how I’ll earn a living when I don’t feel well enough to work.  But there’s something great about it, too.  There’s the independence.  There’s the self reliance and self control.  There’s eating ice cream before dinner.  (Not that I do that, of course.  Nope.  Not me.  Uh uh.)  There’s living life how I choose to live it.

Life can be difficult and scary, and unfortunately I’m in one of those stages right now, but there’s some pretty incredible parts to it too.  Those are the parts to try and focus on.  And when they’re going well, they really do make up for all the rest.

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Leave a Comment » | Educating, Expectations, Job, Limitations, Raves, Unpredictable | Permalink
Posted by chronicrants

Healthy sick vs. CI sick

January 5, 2012

I think that most of us with CIs respond to things differently than so-called “healthy” people do.  It’s only natural.

Yes, I still worry about the trivial things in life, but not like I used to.  And I was disappointed recently when my bloodwork came back normal – I really wanted them to find a problem so that we might have a course of treatment.  I’m guessing that a non-CI person would have been very happy to get “normal” results.

I think that getting a cold is the same thing.  Of course, physically some of us respond differently.  Back before my autoimmune issues were full-blown, a cold was just a cold.  Now, a cold can knock me completely off my feet for a week.  No matter what germs I get, usually at some point it turns into a chest cold and a head cold, and I have a fever too.  But it’s more than just the physical.

When non-CI folks get sick, many (of course not all) of them get so upset that it’s disrupting their life.  Yes, getting sick is inconvenient, but my CIs disrupt my life much more often than any cold does.  And I see a lot of non-CIs try to power through colds and such, acting as if they don’t have them.  First, I find this incredibly irritating  because they are going to work and running errands and riding the train…. and sharing their germs with the rest of us!  I hate that.  I am more than happy to acknowledge my body’s current weakness.  When I have a job I power through lesser pain and fatigue specifically so that when I’m sick and germy I can stay home and rest.  I don’t have enough sick time at work for everything, and I know to pick and choose my battles carefully.  Many non-CI folks have dozens of sick days built up, but still come to work, as if they are indispensable.  Get over yourself, we can get through the day without you.  Just like you can survive without me.

And then there are meds.  I know people who take pills for everything (where’s the moderation?) and those who think they shouldn’t need any meds at all.  I think there can be something in between, but I also know to be careful.  I am taking all of my prescriptions because I have to, even when I feel queasy.  If I don’t, the consequences would be… well, I don’t like to think about it.  But when I felt feverish yesterday and found myself sobbing on the bed for absolutely no reason, I took Tylenol.  It would be stupid not to.  But I called the pharmacist first to be sure there wouldn’t be problems taking it with my new med.  I see far too many people forget to do that.  Today I’ve been sniffling and sneezing since I woke up.  It’s not fun, but I’d rather let my body work out what it needs to than to load up on drugs.  That said, I’ll be taking Nyquil tonight, since I know that sleep is an important part of recovery (and I wouldn’t get any sleep at all the way I am.)  I guess what it comes down to is, the CIs have taught me how to listen to my body, and how to respond to it without overdoing anything.

Yeah, being sick sucks.  I’m not going to pretend that it doesn’t.  I’m on day three and it’s lousy.  I’m sick of watching the same few tv shows over and over (I only have basic cable) and my eyes are too watery to try and read.  I feel germy and lousy and am ready for it to be over.  But I won’t stress out over it, or worry about the things I’m missing, or try to push myself to do more than I’m ready to do.  This still isn’t as bad as a CI flare.  And I know that, unlike my CIs, it will go away.  And that is the best part of all.

Leave a Comment » | Decisions, Expectations, Medication, Raves, Unpredictable | Permalink
Posted by chronicrants

Measuring symptom improvement… by way of a 2 year old

December 29, 2011

I knew the fatigue was getting bad when I’d be tired after 12 hours of sleep, then take a 3 hour nap that next day.  Now matter how you look at it, that’s not good.

Now that I’m feeling a bit better (thank you sleeping pills!) I haven’t been as tired and I haven’t taken any naps, intentional or otherwise.  Progress!  Yay!  Still, I know that I don’t have the energy of a “healthy” person, so maybe some of the progress is in my head?

Two weeks ago a friend had a timing conflict and needed someone to watch her kid.  I was so tired every day, but she was in a jamb, and she’s a good friend, plus I wanted to try and push myself a bit, I rested all day, then went over in the evening.  After a bit over an hour, I’d had it.  We’d been sitting most of the time, but I needed to be alert and engaging.  It was exhausting.  Thankfully, my friend’s husband came home a bit after that, and while I still played a bit with the kid, I could let my guard down and relax.  Still, by the time I went home I was beat.

Today I went over to take care of the same kid.  I went in the morning.  I got up with my alarm, and felt a bit tired at the time, but then felt much better as I got ready to start the day.  I had a ton of fun with the kid and wasn’t tired, even after more than two hours together.  I hung out for a while with my friend, then came home and listened to an audio book for a while (loving those audio books!) before I took a 35 minute (yay!) walk, stopping at the library on the way (I’m visiting the library a lot these days.)  I felt great after all of that!

So two weeks ago, an hour with a two year old wore me out completely.  Today, two hours with a two year old left me feeling as good as when I started.  The lesson?  The doctors shouldn’t measure our progress on those annoying 1-10 scales.  They should just put us in a room with a two year old and see how long we last.  After all, anyone who can keep up with a toddler must have at least something going right!

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Leave a Comment » | Expectations, Healthcare, Limitations, Milestones, Raves, Symptoms, Unpredictable | Permalink
Posted by chronicrants

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