Self care is *not* a vacation

November 24, 2011

Family gatherings.  They’re different things to different people.  With just one exception, I really enjoy spending time with my family, and today was no different.

For the first time in days, I got out of the house and had contact with people, which was nice.  I feel very lucky that family gatherings are generally fun and are usually not stressful.  I know that’s rare, or at least more rare than we’d all like.  Still, it wasn’t easy.  I put on a smile and acted like everything was fine around most people.  When a close relative asked how I’m enjoying my “break from work,” though, I had to say something.  I explained that this wasn’t a vacation, that I’m really not feeling well and I’m trying to use it to get better.  I said that the last time I left the house was on Tuesday, and that was only to get groceries for my Thanksgiving cooking.  Before that, I hadn’t been out since Sunday.  I pointed out that if I’d tried to go to work this week, I probably would not have felt up to attending the Thanksgiving meal.  So this “break” is allowing me to take care of myself.

I said it nicely, just to educate him.  Thankfully, he got it right away.  It’s frustrating to have to educate people over and over, but in this case it’s worth it; it means that next time he’ll understand and he’ll ask how I’m doing instead of if I’m enjoying the “break.”  Either way, I know he’s always going to be supportive, and I appreciate that.

I’m not going to do a big Thanksgiving article, but I will say that I am very thankful for my amazingly supportive family and extended family.  As we all know, many of us couldn’t get through this without the help and support of our loved ones, and I feel very fortunate to have a great group of relatives around me.

Life can be shitty, no doubt.  So when I’m having tough weeks like this one, I try hard to remember the things I’m grateful for.  After all, it’s not all bad.  The important thing is to remember that.

 

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

When even the predictable becomes unpredictable

November 23, 2011

I have left the house twice in the last four days.  Well, that’s if you don’t don’t a trip to the basement of my apartment building.  Trust me, that wasn’t so exciting.

As I said before, I haven’t been feeling right over the past few days.  I noticed it early, and I did the right thing by staying in the house and resting.  That seemed to work, so yesterday I went to the grocery store.  This was a small trip.  I drove my car, I parked close, and I know the store well, so I just got the things I needed and then left; I wasn’t wandering around.  Still, I knew immediately that it was too much.  I stayed in last night and watched a movie.  I didn’t exert myself, or even open up the computer to write.  Still, I woke up this morning feeling off again.

This happens sometimes.  The timing tends to be unpredictable, but at least the treatment is predictable.  Or at least, it was.  Every other time this has happened, by the third or fourth day (today) I would either be really sick or completely better.  I don’t know why it’s dragging on this time.  I guess it just goes to show that we can do our best to take care of ourselves, but even the predictable can surprise us.

I’m glad that I’m not working now, because it means that I didn’t try to go to work like I normally would.  Instead, I turned off my alarm and slept late, which definitely helped.  I cancelled my plans for today (and I had been looking forward to them!) and I rested.  I have no doubt that I’d be doing much worse if I was pushing myself.

The big question mark is tomorrow.  I’m not hosting Thanksgiving, but I am supposed to provide the only veggies on the table, so I hope I feel up to cooking them.  Besides, if I don’t cook, what will I do with the 4 pounds of brussels sprouts in my fridge?  As hard as it is, especially for a control freak like me, I know I just have to relax and rest tonight, and wait to see what tomorrow brings.  If I can do it, that’s great.  If not, so be it.  We all have our limits and these are mine.  How do you handle yours?

In the meantime, I’m getting really sick of watching tv.  And this is coming from a self-described couch potato.  I really need to get out of the house.  Hopefully soon…..

 

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

The “almost” feeling

November 20, 2011

Do you ever get warning symptoms before you get sick?  What about before you get a flare?

For good or bad, having a chronic illness forces us to be much more aware of our bodies than a lot of us would otherwise be.  I’m pretty sure I would have ignored the way I felt first thing this morning, but after years of dealing with these illnesses, I’ve learned that a sore throat isn’t always just a sore throat.  For me, it’s a warning signal.  This is my body’s way of saying that something bad will happen soon.  If I don’t get some sleep in the next day, I’m going to get sick or get a flare or both.  Fun.

Now, on the bright side, getting sick would get me out of some unfortunate holiday obligations this week.  But it would also cause me to miss some fun holiday stuff too.  I guess I better pay the bribe and get some sleep.  If only it was that easy.  I fall asleep as soon as my head hits the pillow, but for some reason I’ve been waking up about 7 hours later, for no good reason.  Still, I can’t risk it, so tonight I’m taking a Benedryl, turning off my cell phone, and getting some sleep.  I hope.  12 or 14 hours should do the trick, based on past experience.

Yep, I’ve got the sore throat and the weakness and some fatigue and I know what it means.  I know what this means now.  The thing is, 10 years ago, I didn’t know what it meant.  And I’m pretty sure that even now I’m missing signs from my body.  Maybe there’s something I could have done yesterday, or maybe there’s more I could do now.  I think that a key part of treatment should be learning how to read our bodies.  Does anyone even teach this?  Maybe a doctor once told me to start paying attention, but I don’t remember it.  Autoimmune diseases can be frustratingly unpredictable.  Even a 12 hour warning is helpful.  I just wish I knew better how to recognize it.  I wish we all did.

 

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Truly *understanding* chronic illness

November 19, 2011

“Why are you taking a leave of absence from work?”

[stunned silence]

“The usual stuff, but it’s gotten worse.”

[confused silence]

___________________________________________

I am shocked at how many times I have had this conversation.  To be honest, even one time would be shocking, but I keep having it over and over again.  A few weeks ago I wrote this post about wearing masks so that people won’t see what I’m going through.  It’s something we all do, and we each do it in our own way.  For me, it means letting people know there’s a problem, but not letting them see how bad it really is.  That seems to be backfiring (as these things always do, even though I pretend they won’t.)

A few close family members and friends understand.  I let them see how bad it was, or they saw through my facades.  A few others understand because they’ve gone through similar things.  But most people just don’t get it.  They know I have some “issues” but figure they’re under control.  I seemed ok, except for occasionally having to cancel plans or not being able to drive too far in a day, and those are minor, right?  So why should I need to take time off from work?  I hate to spoil the illusion, but it’s time.

I keep seeing statistics about how many people live with chronic pain, how many have arthritis, how many have autoimmune diseases. These number make for catchy headlines and memorable soundbites, but where’s the education?  Maybe the problem is that we’re all wearing masks.  We need to make our family and friends understand our illnesses, so that they can make their people understand it, so that maybe society will start to get it.  The ignorance is so frustrating.  Yes, I wear masks, but even when I do show people what’s going on, a few weeks later I seem ok, and they forget all about it.  I need them, we all need them, to understand.

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2 Comments | Educating, Expectations, Frustration, Isolation, Limitations, Rants, Support, Symptoms, Thoughtfulness | Permalink
Posted by chronicrants

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