Your sickness matters too

May 17, 2012

We all have problems.  That’s it.  Everyone has something difficult that they have to deal with.  It might be a health problem, it might be a relationship problem, it might be taking care of someone else.  We all have something.

If you have a severe chronic health condition, then the people in your life know at least a little bit about it.  No one really knows or understands what you go through, but they all know you have something, and they know a bit about the symptoms.  And because of that, some people get weird talking about their own health problems.  Have you ever heard “they’re nothing compared to yours”?  I bet you have.

A friend called today.  We hadn’t spoken in a while and we had a lot of catching up to do.  She didn’t know I had stopped working because of my health (yeah, it’s been a really long time) and she was sad to hear it.  Then we were talking about her job, and how she left it because of health problems.  She’d always been one of the healthiest people I knew, so I was shocked to hear about some of her troubling symptoms, all from the last several months.  On the bright side, they are probably stress-related, so she should be fine with some rest and relaxation (I hope!) Still, I wanted to hear all about it because as her friend I was (and still am) concerned.

That’s why was frustrating that every time we started to talk about her health, her response was that she didn’t want to talk about it because my health is so much worse.  I didn’t know how to make her understand.  Yes, I get annoyed when people complain about stupid things, when they act like a paper cut is the worst pain possible.  But I get upset from smaller things too.  I’m miserable when I have a bad cold.  I certainly feel the pain when I pull a muscle.  Yes, I can put these things in perspective emotionally, but it doesn’t make them less bad.  And I don’t begrudge anyone else their hardships.  I feel bad talking about my health with others who have worse conditions than I have.  My healthy friends feel bad talking to me about their temporary health issues.  But we have to remember that we all have problems and we all have to deal with them.  So I want my friend to tell me what’s going on with her.  It might not be as severe or as long-lasting as my issues, it may not have as big of an impact on her life as mine do on my life, but it is difficult for her and that makes it important to her and to me.

So I guess what I’m trying to say is, my illness doesn’t make your illness irrelevant, and vice versa.  Let’s support each other, not hold each other back.

Leave a Comment » | Educating, Expectations, Frustration, Isolation, Kindness, Rants, Support, Symptoms | Permalink
Posted by chronicrants

Emergency adrenaline, non-emergency fatigue

May 13, 2012

The day started like any other.  I shut off my alarm, read in bed, took a pill, read the paper in front of my lightbox, ate breakfast.  Then the phone rang.

Emergencies are never easy, but apparently they’re even harder for me these days.  In addition to the mental and emotional strain, there’s also the physical strain.  The second I heard my mother’s voice, the adrenaline started rushing.  I knew it was her parents.  I called to get a doctor over there immediately, then stopped to think for a moment.  I couldn’t leave the house without taking my pills, so I took my pills.  What next?  Clothes, I should probably get dressed.  For 10 minutes I hardly knew what I was doing, but somehow I got clothes on, called my sister, got water (because I knew I couldn’t afford to get dehydrated today) and ran out the door.  There are other things I would have done if the day had gone as planned, but suddenly I was going to my grandparents’ place 2 hours early and in a panic.

The drive over takes 20-30 minutes, depending on traffic.  Today I got there in 15 minutes.  I hit every light on the green but one.  That never happens.  And, um, I may have driven 80+mph the whole time I was on the highways.  But I was careful.  I signaled, I didn’t cut people off, I paid extra close attention.  My energy was waning before I even got there.

By the time I arrive, they were bandaged up.  There were no broken bones from the falls, just a lot of blood.  Some of the health problems they already had were exacerbated and had to be taken care of.  My parents and I ran around taking care of them, making sure they were ok, cleaning up the blood, calling the necessary relatives.  It was exhausting, but I couldn’t not do it.  I was relieved it wasn’t worse, but I was still worried.  It was physically and emotionally draining, but so what?  I ignored my body as much as I could.

We were all there earlier than we had originally planned for Mother’s Day, so we just stayed.  It was hours of attentiveness, running around, and forced cheerfulness.  We left early in the afternoon so they could rest and we moved on to my mother’s part of Mother’s Day.  Some day for her.  She was amazing though, taking care of her parents and also checking to make sure I was ok.

I held it together all day somehow.  I spent more time sitting in the afternoon than anyone else did, but I made it.  I wanted my own mother to have a good Mother’s Day, at least what was left of it, so I pushed through.  I hadn’t brought food with me, so thanks to the gluten-free diet and the limited options, my diet was lousy.  By mid-afternoon, I was fading fast.  Just driving home was hard, but when I finally arrived, there was an obvious lack of good food options.  I would have gotten take-out, but I couldn’t think of a place to get gluten-free food that wouldn’t be out of the way.  No, I was just too tired.  I cobbled together something meal-like and collapsed in front of the tv.  The adrenaline was long gone.  It took a while before I had enough energy to take out my laptop and do some typing.  Getting off the couch was just too much effort.  In fact, if I hadn’t drunk so much water (and therefore had to get up to go to the bathroom) I probably would have never gone to the computer tonight.

This was one hell of a day and definitely not what I expected.  I’m paying for it now, and I have no doubt I’ll be paying for it tomorrow too, but I’m just so glad that my grandparents are ok.  Life is hard.  Chronic health issues suck.  But having a great family makes it all so much better.  Hopefully there won’t be another emergency any time soon, but at least if there is, I’ll know what my body is capable of.

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

The war on nausea

May 8, 2012

“Are you pregnant?”

She was trying to be helpful.  And I guess it’s an appropriate question when a 30-something woman says that she’s been having unexplained nausea for the past week.  Still, it was a reminder of how incredibly unlikely that is.  There’s a good chance I can’t get pregnant without medical help, but more than that, there the lack of sex recently.  That part really sucks.

Of course, more frustrating than the lack of sex at the  moment was the nausea.  I’m no stranger to GI discomforts.  I’ve been having various symptoms since my teen years.  After around 18 years, it’s still difficult, inconvenient, painful, and upsetting, but it’s certainly not surprising.  The only surprising part is that it’s been different lately.  Over the last few months, since I started the gluten-free diet, it’s been different.  Maybe that’s because of the diet, or maybe it’s a coincidence.  I have no idea.  But this past week has been the worst of all.

It used to be that the more severe nausea and it’s other accompanying symptoms (cramps, bloating, diarrhea) would last for hours.  Over the last few months, there have been times when it’s lasted for a day or two.  This has been especially lousy.  But now, it’s been coming in waves since Thursday.  That’s 5 full days of this bull.  I’ve taken more Pepto than I’d like, but aside from that I just don’t know what else to do.

So I’m fighting this in the only way I know how.  I’m trying to stay calm and relaxed.  I’m watching a lot of tv when I feel lousy.  I’m not pushing myself.  I’m being careful of what I eat.  I’m drinking plenty of water so I don’t dehydrate.  I’m taking Pepto.  And I’m hoping, really hoping, that it goes away soon.  I’d hate to have to fight this at the next level: seeing my PCP so I can get a referral for a gastroenterologist, then waiting for that appointment, then having tests run, then waiting for those test results, then maybe trying a treatment….  That could take months.  Instead, I’ll stick with my old method and try to wait it out.  It may not be the smartest move, but it’s certainly the fastest.

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

Chronic stagnation

May 2, 2012

You know that instrinsic, gut feeling that your whole life is about to change?  Sometimes it comes at really obvious moments, like at your high school graduation.  Other times it’s less obvious, but just as recognizable.  You can just feel that very soon, your life will be very different.

This isn’t one of those times.

I just signed a lease for a 7th year in my apartment.  (My previous record for staying in one apartment: a year and a half.)  I’m not dating, and I’m not even interested in dating.  (Sex would be nice.  Too bad I don’t do one night stands.)  I do not have a job, and I won’t have a job any time soon, since even when I regain my health, I’ll still have to actually get a job.  I don’t feel up to doing a lot of new things, so I’m not meeting new people.  No, my immediate future is looking very predictable.  And very boring.

I’ve been doing a lot of reading lately.  It’s amazing how much I can read when I don’t feel up to doing much else.  I’ve been reading murder mysteries and classic fiction, and also personal development.  The personal development books and blogs cover a wide range, but they all have something in common: I can’t figure out how to implement, or even picture, the majority of what I’m learning.

There’s the book on time management.  Well, time management really isn’t an issue right now.  I learned a lot, but I can’t picture how to apply any of it to my back-at-work life since I don’t know what my life will be like then.  Will I be working full time?  What will the hours be?  What will the commute be?  Will there be other changes in my life that I have to balance?  It leaves me feeling very unsettled.  I wish I could picture the future at least a little bit.

There are the blogs and books on personal finance.  I love this stuff.  I’ve been helping friends and relatives with their budgets.  But there’s little I can do for myself.  In order to save more money, quite simply, you have to either spend less, earn more, or do both.  I’ve been cutting my expenses as much as possible, and I just don’t feel up to earning more.  Some people take on second jobs; I can’t even work one job right now.  On the bright side, I know what I’ll do with my extra money when I eventually have it.  [Hint: it involves saving for a health-induced early retirement, just in case.]

And don’t get me started on the reading about how to get the right job.  That is just so far out of the realm of possibility right now….

On the bright side, I feel good that I’m using my time productively right now.  I’m not spending every minute learning, but at least I’m keeping my mind active and engaged and I’m doing something that will potentially influence my life in a positive way at some point.  I just have to try and remember that, because reading this stuff (which I generally love, by the way) does tend to remind me of how little I can change right now.

The future is uncertain.  We all know that.  One year from now I could be working a new job, living in a different state, and married.  Or I could be right where I am, not working, not well.  Who knows?  I guess I don’t need everything to get better, I just need something, anything to change.  Some people fear change, but without change there’s just boredom.  Right now, I crave change.

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

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