Enduring their sadness

May 19, 2012

I love that people care enough that they want me to get better.  I just wish they’d stop asking me how I’m doing.

Last fall I wrote about how difficult it is to reassure people, but yesterday brought it all crashing back harder than ever.  People ask how I am and they want so badly to hear that I’m doing better.  I’ve had to ask people to stop asking.  I know it’s hard for them, but it’s a lot harder for me.  Thankfully, they’ve all been respectful of that so far.

Unfortunately, that doesn’t work for everyone, especially my grandparents.  There are two reasons why it’s especially hard with my grandparents.  For one thing, their memories aren’t great these days, so they’ll ask me how I am, forgetting that we just had that same conversation the day before.  I’ve asked them to back off, and they did for a while, but then they forgot.  This is not their fault.  But it’s still difficult.

The other problem is that their health isn’t great.  I know that a big part of it is that they want to see me improve before they die, which could be soon.  It used to be that they wanted to see me married while they were still around.  Thankfully, they’ve adjusted their expectations of that (though I’m sure they’d still be thrilled to see me married, just like I’ll be devastated if my future spouse never meets them.)  The hard part of this is that they are being so selfless.  They want to help me and are frustrated that they can’t.  There is nothing they can do now, but they still want to know that I will be ok in the long run.  I want desperately to assure them that I’ll be fine, but I just can’t do that.  I’ve thought about faking a fiance.  I could probably manage that, actually.  But I can’t fake my health.  There is just no way I can pretend to be healthy.

So yesterday was another hard day.  Again, they asked how I was doing.  Again, they were disappointed that I’m not all better.  Again, they talked about me going back to work and again, I had to explain that I can’t do that right now.  Again, I avoided the obvious, that I may never improve.  I came home wanting to cry.  Just writing this I’m getting tears in my eyes, something that almost never happens.  It is so hard to see the people I love hurting.  I wish I could get better for them, but of course, if I knew of some miracle cure, I’d have done it already.

There’s really no choice.  I will keep plodding along with the various treatment options that I’m finding.  I will continue to research doctors and other medical practitioners, medications and diets and other treatments.  I hope that sooner or later something will work.  In the meantime, I will have to continue to tell people that I am not better.  And I will have to continue to endure their sadness.

4 Comments | Educating, Expectations, Frustration, Insensitive, Intrusions, Isolation, Kindness, Rants, Support, Symptoms, Thoughtfulness, Unpredictable | Permalink
Posted by chronicrants

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

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