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

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

Making medical decisions by coin toss

April 20, 2012

Doctors no longer seem to be all-knowing gods to many of us.

My grandparents always did just what the doctor told them to do.  They trusted their doctor to be honest, knowledgeable, and infallible.

Fast forward many decades and things have changed.  A lot.  For one thing, there are the studies that suggest doctors lie to their patients.  They apparently do this to protect their patients, to save their feelings, but it doesn’t help with the trust thing.  Doctors are now overworked and dealing with lawsuits, insurance, and budget cuts.  In other words, they’re human.  The mystique is gone.  Even more, we have the internet now and can do a lot of our own research.  This helps us to realize that, again, our doctors are human.  They don’t know everything.

Now, I do think that a lot of my doctors are very knowledgeable and I trust them.  That, after all, is why I continue to see them.  However, I still find it difficult when I need to make a decision, and I have no one to help me make it.  I talk to my parents for advice, but I’m getting tired of that; I’m over 30, for crying out loud!  I’m not in a relationship, so I can’t turn there.  And anyway, these all just other laypeople (though my parents are very smart and knowledgeable.)  I can talk to my doctors, of course, but they won’t tell me what to do.  Sometimes they strongly hint at their preferred course.  Sometimes they say it outright.  But many times they don’t know what the right thing to do is.  Damn, they really are human.

I am now facing a small dilemma.  Should I continue my gluten-free diet, with its good effects but also possible negative ones?  Should I quit the diet and see if the negative effects go away?  But then the good effects might go too.  Should I try an over-the-counter med to see if that helps the symptoms?  But what if my body is still adjusting to the new diet?  It could be that I improve from the diet, but if I take the meds, I won’t know which is helping.  Or I can adjust my thyroid med dosage.  I’ve already filled the prescription.  This won’t help the nausea, of course, but it could help the fatigue.  But what if the diet just needs more time to work, and adjusting the thyroid med covers that up?  And I could have negative effects from changing the med dosage, too.  And these are just my top choices – there are even more options to consider!

It would be so easy to have someone tell me what to do.  It would remove this pressure that’s sitting on my shoulders.  But I have to admit, I’m glad when my doctors admit they don’t have the answer; it’s better than pretending otherwise.  Besides, I’m sure I’ll figure it all out eventually.

Does anyone have a coin I can flip?

~~~~~~~~~~

If you can relate to this, please pass it along and share the camaraderie!  Let’s build the community!

2 Comments | Decisions, Educating, Expectations, Frustration, Isolation, Limitations, Medication, Rants, Support, Symptoms | Permalink
Posted by chronicrants

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