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.

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

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.

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

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.

Leave a Comment » | Educating, Expectations, Kindness, Pain, Raves, Support, Symptoms | Permalink
Posted by chronicrants

Too many disease treatment options

November 10, 2011

Too much information!

I read about a study done recently.  I don’t remember the details, but basically when people have more options available, they have more difficulty choosing an option.  They also feel more stress.  Basically, having a choice of 2 salad dressings is better than having a choice of 15 salad dressings.

This makes perfect sense.  I see it in so many places.  The last time I got a car, I picked a few good brands and looked only at their models.  I didn’t look at the others because it would have been too many options and that’s stressful and difficult.  Today in the grocery store there were too many types of bread.  I’m not kidding; I found myself spending way too long in the bakery section trying to choose the right loaf.  I need to get a gift for someone next week and I have a few ideas, but I just can not seem to decide which they will like best.  I’d rather just have 1 idea.

See the conundrum?  Despite what most of us think, having too many choices is actually a bad thing!

And that brings me to today’s too-many-choices problem: treatment options.  I want to take a new approach to treating my health problems but I don’t know how to go about it.  Which approach should I take?  The answer, of course, is to do research.  The problem is that so many of the alternative treatments are based on anecdotal evidence.  There are a bunch of diets, for example.  One works for some people, another works for other people.  In the meantime, I’ll be spending a lot of time and effort trying to add some things to my diet while removing others, and trying not to aggravate my IBS in the process.  And how should I balance everything?  There are diets for IBS and others for PCOS and others for Hashimoto’s and others for connective tissue diseases and and and….. How do I put these together?  I know my doctors won’t be advising me on this.  I tried going to a nutritionist once and she helped with an IBS diet but didn’t know about the others.  There may be nutritionists who specialize in these autoimmune disease diets but I don’t know who they are or how to find them.

I know I need to pursue this, but it’s so overwhelming.  Having all of these different options makes me want to just bury my head in the sand and wait for it to pass.  The problem is, it won’t pass.  These symptoms aren’t going away.  I need to do something proactive.  I just wish I knew what it was.

 

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.

1 Comment | Decisions, Educating, Expectations, Frustration, Limitations, Medication, Rants, Symptoms, Unpredictable | Permalink
Posted by chronicrants

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