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

If you think it’s so easy, then *you* try it!

January 30, 2012

What is it with people saying that what I have to do really isn’t so bad?  Unless you’ve gone through it yourself, you just don’t get to say that.

The latest is that I think I need to try a gluten-free diet.  I’ve been putting this off, but from what I’ve researched, it’s worth a try.  Nothing else is working, after all.  I figure I’ll live it up for a couple more weeks, until I see my PCP for a checkup, and then I’ll talk to her about getting a referral for a nutritionist, because I sure as hell am not doing this myself.

I was telling all of this to a friend, and she said that getting a nutritionist is good, but that really, going gluten-free isn’t all that hard.  Now, we’ve been friends for ages and I love her, and I know she can be a bit know-it-all, but that’s just who she is and I accept it.  But today was annoying.  Going gluten-free is a big, big deal for me.  I have such a restricted diet already, and this will make it harder.  Cooking at home will be a pain in the ass.  Even worse, going out to eat will be horrible.  Yes, there are dishes at restaurants that appear to not have gluten-containing ingredients, but if they aren’t marked “gluten free” then they could be contaminated.  She didn’t get it.  And what about eating at other people’s homes?  When I go to a party, I can avoid the bowl of chips, and I can ignore the cheese and crackers, but what about main dishes?  Will I have to eat at home before every party?  Ok, I do that now from time to time, just in case, but to always do it?

Now, I know there are plenty of people on gluten-free diets.  I know they are successful at them.  I am not saying that it can’t be done.  I’m just saying that, especially at the beginning, it will be very difficult, and I resent being told that it won’t be by someone who’s never done it.

It’s like when someone tells you how to compensate for not being able to do stairs, even though they’ve never been in that position.  You can’t say it’s not hard unless you’ve done it yourself, and even then you can’t assume that your experience applies to everyone else.  We’re all different.

So I’m being patient, because I love my friend and I know that she only means well.  She’s trying to help.  But damn, it can get annoying to hear that kind of stuff.

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Leave a Comment » | Educating, Frustration, Insensitive, Intrusions, Kindness, Limitations, Rants, Symptoms | Permalink
Posted by chronicrants

Adding insult to injury

January 25, 2012

My family has always been close.  Sure, there’s the occasional outlier, but generally we’re all there for each other.  We take care of each other.  And that’s what made yesterday and today so difficult.

In the middle of the night Monday, my grandmother was taken to the hospital.  She lives near me in the Boston area, and so do two of her children, my mother and an aunt.  My mother and my aunt took care of my grandparents yesterday, staying with my grandmother and taking my grandfather home to get some rest, then back to the hospital for another visit.  No one had gotten much sleep the night before.  My aunt slept at my grandparents’ apartment yesterday so that my grandfather wouldn’t be alone.  My  mother “slept” (but really didn’t get any sleep) on a cot in my grandmother’s hospital room.  I stayed home.

I want to be there, to spend time with them, to help, but I can’t simply because my immune system sucks.  There are too many germs in the hospital.  Norovirus is going around, and they have a case of pneumonia there too.  Even my sick grandmother told me it wasn’t safe for me at the hospital!  I wanted to argue, but the truth is, they’re right!

It’s bad enough when I can’t take care of someone because I don’t feel up to it, but this time I actually felt ok and I still couldn’t help.  I’m pissed off!  It sucks when I feel lousy, but then it has to intrude on my ability to help others?  That’s just so wrong!  I’m glad there is other family around to help out in times like these, but I should have been able to help too.  I’m lousy at handling my limitations.  I know that.  But this is just going too far.

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Leave a Comment » | Decisions, Frustration, Isolation, Limitations, Rants, Symptoms | Permalink
Posted by chronicrants

Recoloring the winter blues

January 20, 2012

This weeks’ ChronicBabe blog carnival is all about winter wellness and fitness and surviving the winter blues.  It’s a fantastic idea, since so many of us struggle at this time of year, and even those who don’t could probably use some encouragement and ideas.  Here are a few of my own experiences….

Winter is my best season and my worst season.  It’s the easiest and it’s the hardest.  Health-wise, it’s all sorts of contradictory.

On the one hand, a lot of my symptoms are triggered by hot and humid weather, so the cold winter is a welcome relief.  Others cringe at 30 degree weather, but I actually don’t mind it (but I can do without the 5 degree weather, thanks anyway.)  On the other hand, it’s dark, and even when it’s light out the sun is lower (less direct sunlight) and my skin isn’t getting much exposure since it’s all covered up in layers of warm clothing.  So I have fewer autoimmune symptoms, but then seasonal affective disorder (SAD) comes and rears it’s ugly head.  Plus, with snow and ice, I worry a lot about falling.

This has been an unusually easy winter in Boston.  Until last week, we had almost no snow.  This has to be some kind of record.  We’ve all been walking around confused, wondering where our winter went.  In fact, until a few weeks ago, it was unseasonably warm.  We’ve had 50 degree days.  We’ve had rain.  Best of all, we’ve had clear sidewalks!  I didn’t have to worry about slipping at all, so I was able to take a bunch of long walks, which is my best and safest form of exercise these days.  The key is dressing right: warm sweater, warm pants, super warm coat, and of course hat, gloves, and scarf.  And don’t be afraid to wear long underwear if you need it.

My motto is, it doesn’t matter how I look as long as I’m warm.  I have to say that in order to be able to wear the big pink coat in public.  I have Raynaud’s, so I’m careful to keep my core warm so that my hands and feet don’t get too cold (but honestly, they do anyway unless I wear the right boots and gloves.)  If I’m dressed well like this, I can take a half hour walk, and my big problem is that partway through I’ll be sweating.  It’s all about dressing right, and staying indoors when it’s dangerously cold.

Until the sidewalks are clear I won’t be taking long walks on them if I can help it.  I’ll wear my amazing boots with the fantastic treads, which are also super warm (even my toes stay warm in the coldest weather!) and I highly recommend them, but I’m still too nervous about slipping.  If I can hit my head in my own living room, (and I’m still hurting from that one) I better be extra careful on the ice.  There are alternatives, though.  There’s walking in a mall, walking through a museum, walking on a treadmill (boring, but it gets the job done) and plenty of other indoor walking possibilities.  One winter I did exercise videos in my living room.  They’re walking programs that involve additional movements (kicks, arm swings, etc.)  But when there’s no other choice, I’ll walk outdoors in my good boots and with a lot of care.

The thing is, I’m not big on exercise.  I’m really a couch potato by nature, but I know it’s good for me.  I feel better physically.  And it helps the SAD.  Being outside during the day is huge, even on cloudy days.  Fresh air and a little sunshine go a long way.  I won’t pretend it fixes everything, but I have noticed that I’m happier and more energized on the days that I take a walk outside.  The only other things I’ve found for the SAD are a light box and reminding myself that it’s temporary.  Already the days are getting longer, and I look outside most evenings and celebrate that it’s still light out at 4:45.  Those bits of appreciation really do help.

Each season can come with it’s own problems, but there are often workarounds.  The trick is to find them.  I wish well finding yours.

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2 Comments | Expectations, Frustration, Isolation, Limitations, Symptoms, Unpredictable | Permalink
Posted by chronicrants

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