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

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.

If any of this sounds familiar, if you can relate, please share it on Facebook and/or Twitter.  This blog is new, and it would be great to share it.

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

Resting vs. Relaxing

November 19, 2011

I’ve been resting a lot lately.  I guess I’ve been resting a lot for a few years now, but it seems like I’ve needed it more in the last year or so.

Since I rest a lot, I want to be “active” whenever I feel up to it.  Now, “active” doesn’t necessarily mean going for a jog or running errands.  Sometimes that means writing this blog or doing the dishes.  Still, it always means doing something, and always doing something can be mentally tiring.

Last night I realized that I’d done all of the most important things on my to do list.  I’d even done my physical therapy (which is more unusual than I’d like to admit.)  I felt like I should do something else, but then it hit me: I should relax! 

Resting is not the same as relaxing.  I wish it were, but it’s just not.  Maybe both would involve watching tv, but the first happens when I feel lousy and I’m just trying to feel a bit better, while the second happens when I already feel ok and just want to feel more relaxed.  Think about it: how often do you watch tv or read a book not because you need to rest physically or mentally, but just because you want to sit back and enjoy the activity?

After a rocky start, my rare foray into relaxation went very well.  I decided to watch a movie, and even though the disc turned out to be scratched and will have to go back to Netflix, I found a great old 1940s movies on my dvr.  I love old movies, so this was a real treat.  I made some popcorn, and spent two great hours snacking, watching a funny movie, and knitting.  Now that’s  how to relax!

Relaxation is an important part of self-care.  How do you relax?  What will you do for yourself this week?

If any of this sounds familiar, if you can relate, please share it on Facebook and/or Twitter.  This blog is new, and it would be great to share it.

Leave a Comment » | Expectations, Raves, Symptoms, Thoughtfulness | Permalink
Posted by chronicrants

Being unique but not alone

November 9, 2011

I started this blog so that others going through autoimmune issues, with all of the weird symptoms and situations, would know that they aren’t alone in their frustration, anger, and fear.

I read other blogs by people with autoimmune conditions so that I remember that I’m not alone either.

Today I was reminded just how lonely it can be.

My grandmother has been dealing with pain for several years now, but it has recently gotten much worse and she is having difficulty walking.  Using a walker was a difficult transition for her when she did it years ago.  Now she’s facing using a wheelchair.  She knows that once she begins using a wheelchair, she is unlikely to ever walk again.  Sure, she may walk around the apartment, but beyond that, she’ll be dependent on the chair.  It feels much more limiting than a walker ever did.

She is clearly scared and frustrated and mad and feeling isolated.  I want so desperately to say “I know how you feel,” and “You aren’t alone.”  I want to make her see that she can get through this.  But the truth is, I have hated it when people have said similar things to me.  That’s why I like blogs and Twitter: they’re passive.  I take what I want and ignore the rest.  And as much as I understand a lot of what she’s going through, I know that she really does feel alone in many ways, because no amount of understanding will make this anyone else’s situation but hers.

I also have to admit that I don’t truly understand.  I know what it’s like to be in pain.  I know what it’s like to need a wheelchair.  But everyone’s pain is different.  And my using wheelchairs has always been temporary.  Plus, anything will be different at my age in my 30s than it will be at hers in her 90s.  Still, I hope she allows me to provide support, but I know a lot about how this feels.

She is a strong woman and I admire her a lot.  When she finally agrees to use a wheelchair as needed, I hope she can find peace in her decision.  It is not an easy one.  And while her situation may be unique to her, she knows that she has a very supportive family and that we will all do whatever we can to help.

So for the days that you feel alone, remember who your support network is.  Talk to them, laugh with them, cry with them, and feel a bit less alone.

If any of this sounds familiar, if you can relate, please share it on Facebook and/or Twitter so others know it’s not just them, that they’re not alone.

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

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