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.


Projecting a “healthy” image

November 2, 2011

A few days ago I wrote this post for Chronic Babe’s carnival on Behind the Mask.  I’ve been thinking about it ever since.  Are there other masks I wear that I’m not aware of?

I went to the gym today.  This was a huge accomplishment.  I haven’t been to the gym in ages, and the last few times I went, I felt horrible afterwards.  Now I’m not working, and I’m on new meds, and I did a minimal workout, so I’m hoping to feel ok.  Still, it was weird being there with masks on my mind.

One reason I go to this particular gym is that no one seems to be judging anyone else.  We all just do our own thing.  No one needs to feel bad about choosing the small weights, or for only doing the treadmill.  Of course, that doesn’t stop me from feeling awkward anyway.  I only did 7  minutes on the bike.  Now, a few years ago I couldn’t even do that much, so this was huge for me.  But what did other people think?  The person on the next bike had clearly been there for a while, and was still there when I left.  Did she think it was strange?  What about the 3 minutes on the elliptical machine?  Again, for me this is a lot, but to others it must have looked weird.  What were they thinking?

The funny thing is, I really don’t care what people think of me.  The reason I wondered was that I was curious how I was projecting.  I’m so used to hiding my illness, and then when I can’t do something, I’m never sure if people think it’s because there’s something wrong with me or if they chalk it up to some so-called-normal trait, like laziness.  I didn’t know anyone at that gym and I’ll probably never see them again.  I don’t care if they thought I was weak or lazy or whatever.  But I do care about controlling how they see me.  I can’t control much with my illnesses.  I can’t control how I feel, or sometimes how I look, and even sometimes how I act.  If I can project the image that I want, though, that’s the ultimate control.

So I’m back to the question from my earlier post: is it worth it?

Answer: I don’t know.  I’m guessing that some days it is and some days it isn’t, but overall, I just don’t know.  Is it worth it for you?


The many masks of chronic illness

October 26, 2011

This week’s Chronic Babe carnival topic is “behind the mask”.  The full description is at the end of this post.

Hiding.  I am amazingly good at hiding.  But we all wear masks at least sometimes, right?

I do it in plain sight, of course.  I’m standing right in front of you and you have no idea who I really am.  I’m often told I don’t “look Jewish,” whatever that means, and so people assume I’m not, even though I am.  Supposedly I don’t dress in a particularly queer way, so people assume I’m straight, even though I’m not.  And at a glance I appear to be healthy, so people assume that I am, even though I’m not.  In the first second of meeting me, people make all of these assumptions, and I don’t always bother to correct them.

Sometimes I feel threatened.  If I overhear a homophobic comment I’ll say something if it feels safe.  If the person appears violent, of course I keep my mouth shut.  With my family and friends, though, I’m completely open.  With the illnesses, it’s entirely different.  With that, I never let my guard down, not even around my closest family or friends.  Some of the reasons for this are obvious and some aren’t.

For one thing, I don’t like to worry anyone.  This may sound silly to some, but it’s really big for me.  I feel horrible when people worry about me because there’s nothing they can do.  If there’s a way for them to help, I’ll ask for it.  If they can’t help, then why should I upset them?

Then there’s the hypochondriac issue.  I have so many health problems that if I talk about all of them, people will think I’m making them up.  No, really, they will.  It’s a bit ridiculous.  So I keep my mouth shut.

The Office Mask

And of course there’s wanting to appear like I can do everything I’m supposed to do.  This really only comes up at work.  I got over the desire to “appear strong” a long time ago.  I don’t mind people seeing my weaknesses.  The one exception is my boss.  She clearly doesn’t get what I’m going through.  I let her see little bits and pieces so it’s obvious there’s really something wrong and she’ll approve the accommodations I ask for, but at the same time I want to make it clear that I can get the work done.  That was going great, until I needed to take a leave of absence.  But even up to the day I left I wore the mask as much as possible.  I didn’t know how to do it any other way.

The Stranger Mask

Walking down the street, I try to keep it together.  I don’t care too much what strangers think, but I feel like a big limp makes me a target when I’m alone late at night, and looking haggard is just unpleasant.  And it won’t help my dating situation (I once got picked up in the grocery store; it can happen.)  But when I really feel lousy, I just don’t bother to hide it.

The I-sort-of-know-you-but-not-really Mask

Then there’s acquaintances.  At social gatherings I wear a huge, thick mask.  I try to act like everything is fine.  When someone questions my obvious food restrictions, I brush it off as allergies.  My limp?  Just a small injury.  My wince of pain?  Oh, just a sore back.  I must have slept funny.  The truth?  Not a chance.  I don’t want to talk to strangers or acquaintances about my health unless there’s a really good reason, and letting on that I have even a small problem usually seems to segue into the full deal.  Who needs that when you’re trying to have fun?  Having fun is so much easier when people don’t think of me as “poor Ms. Rants” or “the sick one.”

The Huge Family & Friends Mask

The biggest mask of all, the one I really can’t seem to put away, is the one I wear in front of the people I love most.  Like I said, I don’t want to worry them.  I also don’t want their concern to color our relationship.  I don’t want it to be all about my illness.  If I’m having a really tough day or week then I let on, and they’re always there for me.  But the rest of the time, it’s more of a background thing.

I recently had a friend get on my case for it, actually.  She can tell when I’m hiding something, and then she worries that it’s something really horrible.  So I’ve tried to open up and tell her more.  The crazy thing is, after all these years, I don’t know how!  I’ve been wearing masks for so long, learning to fake it through pain and fatigue and nausea, that I can’t remember how to share it all.

Pulling the Mask Off

My health problems started as a child, and even then I learned quickly I had to be careful who I told and how much I told.  Now, twenty years later, my first instinct is always to cover things up.  And when I’m alone, the mask is still there, only now I’m hiding my emotions from myself, and only occasionally I’ll take it off.  I’m very aware of the physical problems.  At home I’ll collapse on the couch and watch tv for hours or take three hot showers a day to try and warm up.  Alone I don’t try to hide the limp or the bags under my eyes or my pale, haggard look.  I just try to hide from the fear.  Every now and then, very rarely, I’ll allow myself to face the fear, the uncertainty, the permanency.  And sometimes, very few times, I’ll cry.  And that’s when the mask is truly off.

Coming up….

In tomorrow’s post I’ll talk about the real carnival topic: what’s behind the masks.  Who am I when the masks come off?

 

This week’s Chronic Babe carnival topic is “behind the mask”.  As they write:

We know you are doing everything you can to cope with a life with illness and showing your co-workers, family, friends and neighbors that you can manage it. But when you are all alone and your guard is down, who emerges from behind that super-coping ChronicBabe you present to the world? Who is she and what is she most concerned about?


Setting chronic illness goals

October 24, 2011

What’s your CI goal?

We all have different goals, of course.  There are the big picture goals, the ones that shape our lives.  For me, that’s spending time with family and friends, dating, keeping a full time job, and taking care of myself while living alone.  Some of these are easier than others at different times.  Sometimes these feel impossible.  But so far, they’re all doable.  Ok, maybe I can’t do them all simultaneously, but I’m working on it.

And then there are the illness-related goals that focus on the symptoms.  For me, that’s reducing the pain, finding ways to better relieve the pain when it hits, reducing fatigue, and removing weakness.  I suppose I’ve had these goals for so long that I’ve just taken them for granted.

Over the weekend I was talking with a friend who suffers from severe chronic pain.  She’s been using a form of exercise to try to ease the pain.  She told me that it started to work better when she stopped using it to get rid of the pain and instead thought of it as a way to reduce the pain.  I was shocked!  It never occurred to me that she was trying to get rid of the pain completely.  I guess it wouldn’t have mattered – I couldn’t have talked her into anything different because she wasn’t ready for it yet.  Still, I forgot what it was like to have hope that despite everything, it might one day go away.  I stopped thinking that way many years ago.

I’m happy for my friend that she has this new outlook.  Now, any reduction in pain is a success.  Maybe it will go away completely one day, maybe it won’t, but for now, she won’t feel like she’s failing at “curing” her symptoms.

I learned a long time ago that my pain would never go away.  It took a long time to accept that reality.  And then it went stopped!  I still have pain, but it used to be 24/7, and now it’s only on and off throughout any given day.  Some days I can almost ignore it completely.  This huge, amazing, unbelievable!  So I’m keeping an open mind and I know that anything is possible.  Still, my goal isn’t to get rid of any of my symptoms (except the weakness, which is almost definitely temporary.)  If I just focus on reducing them, then maybe they’ll go away and maybe not, but at least I could get to a point where they were liveable.  If I can live with them and still meet my big picture goals, then that’s good enough for me.  Hell, forget “good enough,” I’d be dancing in the streets with joy.

What about you?  What are your goals?  I’d love to know.  Make a comment below or send me an email.