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

Focusing on 3 good things

November 7, 2011

I’m having an off day.  I guess we all have those sometimes.  Ok, I’ve had a bunch of them lately, but who’s counting?

So in an effort to get myself back on track, I’ve decided to focus on the positive.  I’m keeping it simple with just 3 things that went well today.  There are many more I could write out, but for now I’m just focusing on these 3.

  1. Alert, productive, sunny morning.  I seem to get sleep and foggy-brained in the afternoons, but my mornings have been ok.  I’m trying to take advantage of that, and this morning I was actually productive and got some things done.  And the sun always helps.  It was great to see that bright blue sky.
  2. Kittens!  I visited with a friend and played with her little kittens while I was there.  I’ve never been a cat person.  Some are ok, 
    and a few I even like, but I definitely prefer dogs.  There’s something about this orange one, though… I’m totally in love.  Playing with adorable kittens definitely perked up my day.
  3. Laundry.  Yep, I’m considering laundry a positive thing.  I have clean clothes, I  won’t have to worry when I open my underwear drawer tomorrow, and best of all, I was able to do it without completely wearing myself out.  That’s cause for celebration if there ever was one.  Plus, after a week of putting it off, I can finally cross this off my to do list.

 

Like I said, there were other good things, like good conversations with friends, but to keep it simple, I’m only listing 3.  Wow, I feel better.  It helps to focus on the good things for a change.  What are your 3 positive things from today?

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How to track CI symptoms

November 6, 2011

How do you tracking your health stuff?  I’ve been looking for a good method but I just don’t know where to start.  The thing about chronic illnesses is that they’re, um, chronic.  Ok, yeah, that’s obvious, but hear me out.

If I had an ear infection and the doctor wanted me to track the pain for a few days, that would be easy.  But with a chronic illness, it means tracking things for the rest of my life.  Also, with the ear infection, I’d just be paying attention to pain.  With chronic illnesses I need to track pain, fatigue, nausea, blood tests, medications, MRIs, and many other things.  It’s a lot to keep track of!

A good tracking system could be invaluable.  Have you ever gone into the doctor, told them you were feeling better, then later wondered why on earth you said that?  I have.  I may have been feeling better at the time, but that didn’t mean I was doing better over all.  Oops.  It could provide a less subjective-to-the-moment viewpoint.  Plus, how great to be able to see how symptoms varied based on changes in medications or menstrual cycles.  But wait, stress could be a factor, so I suppose I should track stress levels too.  Oh, and climate makes a huge difference, so I should include that.  And working plays a huge role, so weekdays vs. weekends vs. vacations should be included.  And of course it should be electronic.  And it must be searchable, so that I enter a search term and I can see everyplace it occurs.

And based on all of this, I am suddenly spending an hour or more every day filling out information about how I am feeling and possible contributing factors.  It’s just too much, right?  How are we supposed to do this?

Someone must have a good solution.  If you have one, could you let me know?  Thanks!

Leave a Comment » | Expectations, Medication, Pain, Rants, Symptoms, 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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