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

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

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

Time to mix things up

November 5, 2011

Yeah, that’s a bad pun in the title.  So sue me.  No, wait, that’s just sarcasm.  I didn’t mean it.

For many of us here in the United States (though not everyone, since it’s a screwy system) the clocks will “fall back” in a few hours as daylight savings time (DST) ends.  Now, it’s not as if those of us with health issues don’t have enough beyond our control to deal with, we have to deal with time changes too.

For some people this really won’t matter at all.  For people whose bodies are sensitive to sunlight, like mine, this is huge.  Yes, I’m the weirdo who flies from Boston to Chicago and the one hour time difference throws me off.  Yes, I travel to California and it takes me three days (at least) to adjust to the time difference.  DST is even worse.  At least when I travel, my schedule changes anyway because, well, I’m not at home.  But with DST I’m home, doing all the things I normally do, but the clocks are off.  I’m hungry at the wrong times.  I have to shift medication times.  And don’t let me get started on the sudden shift in daylight.  For someone with seasonal affective disorder this… well, it sucks.  A lot.

Why do we do this?  Well, it depends on who you ask.  If you read the link above, you’ll see some of the reasons.  Some of it is political, such as saving money by reducing energy costs through cutting down on artificial light.  My favorite (again, that’s sarcasm) is the idea that we should get up at sunrise and go to bed at sunset.  I’m sure that sounds like a great idea if you’re getting 16 hours of daylight.  For those of us who get around 9 hours of daylight in the winter, that’s just ridiculous.  And the powers that be (apparently this is Congress) can arrange DST however they want, but that doesn’t change what time you have to get up for work or get your kids up for school or head to the gym, etc.  The end of DST means that some people will wake up while it’s light out this week while others will be waking up in the dark.

Is it really worth all of this trouble?  I say no.  I’d rather keep DST time all year round, so that we get more daylight in the afternoon and less at night.  Actually, I’d rather spend have the year here in Boston and the other half someplace else, so that I always get at least 14 hours of daylight each day.  Now that sounds fantastic!

In the meantime, I better go change the clocks, adjust med times, and eat a little something extra so I’m not too hungry in the morning.  And maybe I’ll spend a few extra minutes in front of the light box in the morning.

Good luck to you!

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

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