Carnivaling about gratitude

November 15, 2011

I’m excited to be part of Chronic Babe‘s blog carnival today!  This week’s carnival is about gratitude.

Gratitude is a tricky thing.  Even if you have it one day, you may not have it the next.  There are many things I am be grateful for.  Most of these are somewhat obvious: family, friends, having a decent apartment and enough food.  The reason I wrote the post on appreciating my body is because, despite all of its flaws, it still offers me quite a lot, and I don’t want to take that for granted.  I hope you can find a way to feel the same way about your body.


Where’s the predictability?

November 14, 2011

Life is unpredictable.  I know that.  And to be honest, I tend to handle change fairly well.  Still, too much change at once is difficult.

Autoimmune diseases are tough to handle, but being able to predict certain things about the day can make a huge difference.  Knowing how active I’ll need to be, when and what I’ll eat, and when I’ll be able to rest all make it a whole lot easier.

While I’m not working, I’m making an effort to set plans in advance so that I have reasons to get out of the house and see people.  This is good for me.  I need and want to spend more time with family and friends.  But for some reason, three different people needed to reschedule our times this week, two others needed to set something up last-minute, and I heard from all of them today!  To them, this isn’t a big deal.  Move a lunch, change a date, switch things around…. easy, right?  But this is making me nervous.  It’s a lot to juggle.  I need to make sure I don’t do too many things on the same day, so I need to find a way to do everything and see everyone in a way that makes me happy and not too worn out.

I don’t know yet how I’ll work all of this out, but at least I know one thing for sure: my health comes first.  I’ll do my best to work out everything else, but I will make sure that I feel good at the end of the 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.


Being two people

November 13, 2011

Sometimes the dichotomy amazes me.

I spent the day yesterday indoors.  I read email, watched tv, and did a bunch of other things that at the moment I can’t remember.  I was very aware of the pain I was in.  I was generally unproductive.  I got no exercise (aside from some minor physical therapy.)  It was a gorgeous fall day.  I knew I should have gone outside, but I just didn’t want to.  I suppose I’ve been a bit depressed lately.

Then last night I went to a friend’s party.  I’d been looking forward to this for a long time.  I met some great people and had a lot of fun.  I forgot about the pain.  I wasn’t depressed.  I had a wonderful time and felt great and, aside from avoiding certain foods and being careful how I distributed my weight as I stood, I completely forgot that I had any health issues.  It’s was great.

It was like I was two different people yesterday.  I know that I need to make more of an effort to be that second person.  For starters, I will leave the house before noon every day.  I might just take a walk around the block, but I will get fresh air every morning by leaving my apartment.  I will make more plans with people so that I leave the house.  I will actually do the things on my to do list each day, instead of moving them to the next day (or week.)

That won’t fix everything, but it’s a start.


The community of a support group

November 11, 2011

After 20 years of symptoms, today I went to my first support group.

There are a lot of reasons I never went to a support group before today.  When I was a kid and the symptoms started, no one suggested it.  Later, I didn’t know where to look (this was in the olden days, before Google.)  After a while it was more that I was stubborn and scared.  I’m still not entirely sure what I was scared of.  I guess I was scared that I wouldn’t fit in.  So many support groups are for specific diseases, and I don’t have rheumatoid arthritis or lupus or multiple sclerosis.  What I have is similar, but not the same, and it doesn’t have a name, so I figured I wouldn’t be welcome at those meetings.

Earlier this week a friend forwarded me an email about a chronic pain support group just one town over.  The regular meetings are in the library, but this one was at an assisted living facility.  I pictured myself seated with 70- and 80-somethings who would think I didn’t belong.  And anyway, pain isn’t my worst symptom, so why bother?  I made excuses and had doubts up until the minute I arrived, but I pushed myself and went.  What I found was a group of warm, supportive people.  The guest speaker, a RN specializing in chronic pain management, was fantastic.  He clearly understood.  There was a teenage girl and a couple of elderly people, but most were in their 40s, 50s, and 60s.  Sure I was one of the youngest, but no one cared.  They welcomed me immediately as one of them.

I hope to keep going, even though they meet on Friday mornings.  I hope that when I go back to work in a few months it will be part time, and I’ll try to get Friday mornings off.  I can’t believe it, but I want to go back!

For a long time I didn’t understand the point of support groups.  I didn’t want to be around a bunch of people whining about their symptoms (that’s not what this was.)  I didn’t see how they could help, since they couldn’t get rid of the pain.  Now I understand.  The group won’t get rid of the pain, but it might help me find ways to reduce the pain.  And reducing the pain would give me more energy to deal with my more pressing symptoms.

But the biggest benefit of the group, the one I should have predicted from the start but never did, is the community.  For once, I was in a room of people who understood what I was going through, and I didn’t have to explain it to a single person.  I didn’t have to say a word.  Now that’s support.

 

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.