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

The finding a new doctor blues

November 8, 2011

I hate first appointments with new doctors.  Seriously, I can’t stand them.  I always feel horrible afterwards.

Yes, I know that for some people this sounds really strange, but hear me out.  This actually makes some sense (at least, it makes sense in my head.)

First, there’s the uncertainty.  Will this doctor be any good?  Will they help me?  Will they hurt things?  If it’s a primary care physician (PCP) like today, will they give me the referrals that I need/want?  Will they order the right tests?  Will they prescribe the right medications?  Will a PCP give me the letters that I need for my FSA?  What if it doesn’t work out and I have to start all over again someplace else?  Will my insurance allow that?

But to be honest, those don’t matter as much as the other thing.  I know they’re important, but it’s the other thing that makes starting with a new doc so hard.  Those are just uncertainties, and those questions will all be answered soon enough.  The other thing, though, that’s emotionally rough, and it makes the appointment itself difficult to get through.

Every time I meet with a new doctor, I have to give them the list.  It’s bad enough to have a bunch of illnesses, but having to list them out, one after another, is wrenching.  I feel ridiculous; even to my own ears it seems like I must be making this stuff up.  And even when the doc is nice and professional and accepts the information appropriately, I still have to review it all.  Going over everything, all at once, is just too much.  Those 20 minutes are draining, and by the time I leave, I have trouble getting out of my own head.  It’s too easy to just keep thinking about all of the illnesses.  Connective tissue disease?  Let’s go over details.  IBS too?  Describe the diet.  Hypothyroid?  Review the treatment.  PCOS also?  Give the family history.  High cholesterol and seasonal affective disorder and two forms of scoliosis?  Detail onsets.  The list just keeps going and going and going.  It’s worse than the Energizer bunny from those old commercials.

I left my first appointment with the new PCP today feeling lousy.  I was sad and discouraged and tired.  At first I didn’t know why, but it hit me fast: I spend a lot of time and energy trying not to think about my myriad health problems, and here I was just forced to confront them all simultaneously.  What a cruel form of torture.  I sure hope I don’t have to go through that again any time soon!

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

Leave a Comment » | Educating, Expectations, Frustration, Isolation, Medication, Rants, Symptoms | 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

How many hours are in your day?

November 4, 2011

People say that we all have the same number of hours in a day, but I beg to differ.

These days, I can’t seem to get through the afternoon without needing to rest for a while or nap.  Even after I wake up, I’m not very productive.  I have been on a leave of absence from work for several weeks now.  I thought that by now I’d have cleaned up my apartment and caught up on email, but somehow, that doesn’t seem to happen.

Fatigue is a difficult thing to describe if you’ve never experienced it.  Even now, I know that I’m lucky, because I know that there are many people with much more severe fatigue than what I have.  Some sleep for 12 or 15 hours a day.  How do you accomplish anything at that point?  I don’t know, but I know it must be similar to what I have now in one way: you have no choice, so you find a way.

This is frustrating.  I want so badly to use all of my waking hours productively, but that’s just not an option right now.  The thing about fatigue is that extra sleep or more rest won’t fix it.  Exercise won’t fix it either.  It’s infuriating but true.

So now another day is over and I’ve accomplished much less than I wanted to, and that will have to be ok because I have no choice.  I’m angry and frustrated, but I can’t do anything about it.  I can hope that tomorrow will be better, but I just don’t know.

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

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