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

Spoonie kitchen screwups

April 30, 2012

There’s tired, and then there’s spoonie tired.

I decided to make an easy dinner tonight.  I’ve been trying to eat healthy food as much as possible, and I was feeling run down, so I wanted the best combination of easy and healthy.  For me, that meant pasta for dinner.  I use this a lot as my go-to easy dinner.  I sautee onion and garlic, add in veggies, include meat or beans or something, add spices, add sauce, cook pasta, and I have a healthy, relatively easy dinner.  Even easier is eggs and/or oatmeal, but I’ve done that a few times lately so I wanted to go to the next step.  Apparently, I wasn’t ready for the next step.

I’m not great at chopping up anything.  No matter how big or how small it is, I have to concentrate hard just to avoid cutting my finger (and even then I sometimes cut it.)  Today, more food than usual was hitting the floor.  I felt really off.  I had so much energy an hour earlier, but I hit the wall hard, and I just couldn’t seem to do anything right.  Luckily I wasn’t doing much cutting, since I was using frozen veggies.  Fresh veggies are better, but I didn’t have the energy for them.  Still, a lot of onion and garlic hit the floor.

As I was finishing the sauce, I kept thinking that something was missing.  It all seemed to be there, but I had that nagging feeling.  What could I have forgotten?  Then it hit me all at once: spices!  I forgot to add spices!  I quickly reached for the oregano and parsley and thyme and…. what was I thinking?

The steps ran through my head.  I couldn’t believe I’d forgotten the spices.  I’ve made this so many times I thought I could do it in my sleep.  Clearly I can’t even do it when I’m awake and run down.  But that’s ok, I fixed it.  It would be good enough.

Beans!  I forgot to add the beans!  Ok, no worries, I ate plenty of protein at lunch, and I have plenty of spinach and broccoli in the sauce.  It’s ok.

Beep beep beep.  Time to drain the pasta.  Something was wrong.  Why was it so mushy?  I timed it for 16 minutes and the package said 17-18, so what could be wrong?  Oh no, I used the instructions for the wrong pasta!  The other type, the other brand, is 17-18 minutes.  This type is only supposed to cook for 7-10 minutes!  Yikes!

Ok, the sauce will mask the pasta, right?  But wait, the sauce is…. liquidy.  I didn’t use enough veggies!  I usually make the sauce very thick, so that the meat/beans and veggies are just barely coated by the sauce.  I got it wrong tonight.  It looked so pathetically thin.

Despite all of the problems, the meal turned out ok.  It was even slightly tasty.  And I’ve learned an important lesson: the next time I feel drained, I won’t attempt anything as complicated as pasta.  I’ll stick to eggs.  Clearly my brain can’t be trusted to function on all cylinders when cooking (or typing, for that matter, judging by the number of mistakes I’ve already caught in this post.)

What basics things have you messed up when you’re not completely there?  Let’s revel in our spoonie mistakes.

Leave a Comment » | Educating, Expectations, Frustration, Medication, Rants, Symptoms, Unpredictable | Permalink
Posted by chronicrants

Too tired for a title

April 24, 2012

Why do we underestimate the value of sleep so much?  Sleep is important, and there’s nothing wrong with that.

This will be a short post, because I’m determined to go to sleep at a reasonable hour.  It’s not as if I’m not tired at night (well, sometimes that’s the case,) but I still stay up far too late, and always for no good reason.  Tonight I sleep.

Sleep is good for so many different parts of our bodies.  There are always studies being published about how it leads to better weight management, improved blood pressure, etc.  We eat better and we exercise more when we’re rested.  We feel happier and more relaxed when our stresses work themselves out in our dreams.  That’s not even counting the improved productivity and reduced car accidents.  We’re animals, and animals need sleep.  There’s no shame in that.

The worst reason, I think, for not getting enough sleep is, “I don’t have time,” or “I’m too busy.”  What is more important than taking care of your health?  Yes, sometimes a person really must get fewer hours of sleep one night due to busyness, but not as often as most people want to think.  Generally, we can cut out some tv, skip the internet surfing, eliminate procrastination, and get to bed at an hour (or more!) earlier.

Yes, there are many legitimate reasons for not being able to sleep.  There’s pain, insomnia, loud noises outside, crying babies… but none of that should stop us from at least making the effort.  That’s what I’m talking about here: effort.

I may not get enough sleep tonight because I get woken up early by the construction outside, or because the loud neighbors come home late again and are making a lot of noise, or because I have weird pain dreams like I did the other night, but at least I’ll have made a solid effort.  And who knows… maybe I’ll actually sleep for enough hours, deeply enough, and wake up feeling good!  I sure hope so!

And on that note, I’m off to bed.  Goodnight all!

 

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

Leave a Comment » | Educating, Limitations, Rants, Symptoms | Permalink
Posted by chronicrants

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