Sunday, August 7, 2011

Hyper Alert

A friend of mine who has dealt with chronic health challenges since her teens told me she saw a study that showed a higher incidence of Obsessive Compulsive Disorder in people with chronic illness.  I totally get it, at least the obsessive part.

Have you ever seen one of those service dogs on TV, the ones that watch their humans for signs of seizures or narcolepsy attacks?  The dogs can sense an attack coming on, and they can alert their owner to lie down in a safe place or seek help.  Those dogs never stop watching their human.  They are never far away, and 98% of the time they are staring at their person with an unwavering intensity, concentrating like crazy, looking for those subtle signs.  It would appear completely neurotic if it weren't their job to be an alert dog.

These days I watch myself with almost that degree of intensity.  Anytime I'm not focused on a particular task at hand, I'm checking in with myself.  How am I feeling?  Am I cold? Hot? Sweaty? Thirsty? Hungry? Do I need to put on a sweater/eat a snack/drink some water? How tired am I?  Are my limbs feeling at all weighted or weak?  How much effort am I having to expend walking this mildly uphill stretch of my commute to work?  Am I having any aches and pains? How tender is that sore spot on my back today? Am I feeling grumpy or irritable? How is my breathing today?  Any chest tightness/coughing?  Etc.

I have learned to be my own alert dog.  No one else is going to do it.  I've learned the hard way that if I overpush myself I'll end up in a setback.  Low fever and fatigue for 4-5 days.  I spent last weekend (it was a long weekend in Canada) pretty much stuck indoors, recuperating from fatigue leftover from Val's birthday party the weekend before.  I was fine that Monday, but I had taken myself right to the edge of tolerance, so when Tuesday and Wednesday turned out to be tough days (physically and psychologically) it pushed me over the edge. I'm pretty sure I was working with a fever on Thursday, although I didn't measure it when I got home.  I didn't want to know.

If I stay out until I actually feel noticeably tired, I've already gone too far.  I have to stick to schedules and bedtimes.  I have to watch for tiny signs of stress or fatigue and respond to them.  This is not how I want to live.  I would like to be one of those people who throws caution to the wind and has at least moderate adventures.  I would like to be able to stay out late and watch fireworks displays down by the lake.  I would like to travel across time zones.  I would like to push hard through a physically challenging day and collapse at the end of it, deliciously exhausted, knowing that I'll sleep like a log and wake up feeling fresh the next day.  I'll sleep like a log alright, but I just don't bounce back so easily.

Because I don't look sick, I worry that people are going to think that I'm babying myself unnecessarily.  I don't want to come off looking like a neurotic hypochondriac.  When people ask me how I am, I always weigh how much truth to tell.  If I say "fine", other things I come out with later aren't going to make a lot of sense.  But if I'm always complaining, well, no one wants to hear that.  The message I have to get across to people is "I'm fine/functional today, but that is always conditional on my strict adherence to my body's rules, and therefore I cannot ever come out with you to a late-night event, and no matter how gently I schedule myself in the end all my plans are tentative, pending another possible setback."

I worry that my family will think that I'm lazy or ungrateful because I don't invite them over for dinner to repay their invitations.  Frankly I'm scared to set up that much of a commitment of my energy.  Some weeks I barely have the resources to get through work without showing any weakness.  I need keep my weekends fairly clear so that I can rest as much as I need to.  I'll go out for meals at restaurants, or visit others, because those things aren't very draining, but planning to have people here - that feels like too much of a commitment.

Sometimes I'll have several good weeks consecutively, when I start to feel almost normal, but I've learned the hard way not to get cocky.  Feeling normal is not the same as being normal.

I even worry that all y'all are going to get tired of hearing my health woes.  This isn't a journal, it's a blog, and the truth is that no one wants to read about someone else's obsessive worrying time after time.  I can only write so much about the subject here before I wear out even my loyal readers.  I'd better switch it up with some more entertaining fare on a regular basis.  That proves to be a challenge sometimes.


Jameil said...

It's like when you feel thirsty, you're already dehydrated. Maybe the way to tell people is to only share it with those closest on a need to know basis. Basically this is my life right now, I'm trying to fix it, we don't know what's wrong. Those who love you will try to be understanding. Stop worrying about what other people think and just take care of you. You can't fix their thoughts anyway.

DarcKnyt said...

Spark, this may be a blog not a journal, but it's YOUR blog, a WEB LOG, which is like a journal. You're free to discuss what's on your mind here; this is your space. We come here voluntarily because we like you, we care about you, and we want to know what's happening with you as much as you're willing to share it, be it good or bad.

Right now, your health is a primary concern for you. It's impacting every area of your life and changing how you see the world and relate to it. It's natural this should come through on your blog. It's normal (there's that word again) to have a shift in focus on this page as your focus is shifted in your daily life.

And if you don't post these things, how will I know to pray for you like I am?

Write what you want. And know there are people who care about what happens with you, who want to hear the truth and frustration when we ask "How are you?" Maybe not everyone, but then, this blog isn't for everyone, is it now? :)

I'm sorry this is hard for you right now, honest I am. If I could do something to help, I would. In a heartbeat. No one should have to go through what you're going through and worst of all, not even knowing fully what it is you're going through. That's the hardest part, IMO -- not knowing.

I'll keep praying, but if you need anything and I can do it for you, just say the word.

Warped Mind of Ron said...

I hear what you're saying, but the loyal friends will only send more prayers/positive thoughts your way.

LL Cool Joe said...

You should write about whatever you want to write about on your blog! Everyone else does anyway, whether it's their health, bling, pets, books etc.

I'm sorry you feel like this with your health, but don't add worrying about your blog to your list of concerns as well.

Sparkling Red said...

Aw! Thanks guys! You know how to do the warm'n'fuzzies. You are so sweet. I was in dire need of reassurance and as always you have said all the right things.

ileana said...

We are here for you, and you know that your worries and concerns when shared with others can feel like less of a burden on you. Maybe someone will know of a treatment or a way to deal with a particulatr health issue that you may not have heard of. Of course, it's good to keep things positive (it's good for you...even if you're not always feeling uppity) but when you're down and want to voice your thoughts, your true friends will want to hear you out and help you, if possible. Please don't worry about losing your loyal buddies, we're not going anywhere. Hugs, Ily xo

DarcsFalcon said...

What Darc said goes for me too. :)

When I was little I read a quote by, I believe, Dinah Shore, that went something like: When you don't share your troubles with those who love you, you don't give those who love you a chance to love you enough.

I love that (though I'm really bad at following it). So share away, Spark! We're here for you, because we like you.

You are always in my prayers too. *hugs*

Jenski said...

Can I just say 'ditto'? :-)

When something has me stressed out or tired or feeling blah, I find the hardest part is trying to do what you're saying - still do fun life things and try not to let the stress make you more tired. Maybe an alert animal would be good because it could do some worrying for you.

G said...

I think that some variation of the word "functional" would work well whenever someone asks you how you're doing. It's a somewhat neutral word that can be used to describe anything and everything.

Also, as everyone else says, this is your blog. Write what you want, when you want. Nobody will get upset with you or leave you just because you write you're truly passionate about.

I actually give you kudos for being so forthright about your health and well-being. Not too many people would do that (including myself) in a public forum.

Granny Annie said...

How wonderful that you have this blog to openly express your concerns and then evaluate them for yourself while your friends can offer support. We are here to listen and "hold the bandages and ointment" as my parents used to say.

About having people over -- who does that anymore? Let's meet at a restaurant anytime and enjoy the company while leaving the work to others. Yes!

Lynn said...

Yes - I agree with the others - having a blog is a form of journaling and since it belongs to you, you should be able to write about how you are feeling. (((HUGS)))

Sparkling Red said...


Pixiebaby said...

Aww Spark! If you can't come onto your own blog and talk about what's going on with you among friends where can you? I cannot speak for anyone else, but I do not tire of reading about what's going on with you...I care. I've a feeling that there are a lot of people who feel the same way and are here for you no matter what. I see you as a friend...not as the entertainment. Just be yourself :)