When even the predictable becomes unpredictable

November 23, 2011

I have left the house twice in the last four days.  Well, that’s if you don’t don’t a trip to the basement of my apartment building.  Trust me, that wasn’t so exciting.

As I said before, I haven’t been feeling right over the past few days.  I noticed it early, and I did the right thing by staying in the house and resting.  That seemed to work, so yesterday I went to the grocery store.  This was a small trip.  I drove my car, I parked close, and I know the store well, so I just got the things I needed and then left; I wasn’t wandering around.  Still, I knew immediately that it was too much.  I stayed in last night and watched a movie.  I didn’t exert myself, or even open up the computer to write.  Still, I woke up this morning feeling off again.

This happens sometimes.  The timing tends to be unpredictable, but at least the treatment is predictable.  Or at least, it was.  Every other time this has happened, by the third or fourth day (today) I would either be really sick or completely better.  I don’t know why it’s dragging on this time.  I guess it just goes to show that we can do our best to take care of ourselves, but even the predictable can surprise us.

I’m glad that I’m not working now, because it means that I didn’t try to go to work like I normally would.  Instead, I turned off my alarm and slept late, which definitely helped.  I cancelled my plans for today (and I had been looking forward to them!) and I rested.  I have no doubt that I’d be doing much worse if I was pushing myself.

The big question mark is tomorrow.  I’m not hosting Thanksgiving, but I am supposed to provide the only veggies on the table, so I hope I feel up to cooking them.  Besides, if I don’t cook, what will I do with the 4 pounds of brussels sprouts in my fridge?  As hard as it is, especially for a control freak like me, I know I just have to relax and rest tonight, and wait to see what tomorrow brings.  If I can do it, that’s great.  If not, so be it.  We all have our limits and these are mine.  How do you handle yours?

In the meantime, I’m getting really sick of watching tv.  And this is coming from a self-described couch potato.  I really need to get out of the house.  Hopefully soon…..

 

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

The importance of self-care

November 21, 2011

There’s the stuff we do almost every day.  It’s almost habitual after a while.  There’s certain exercises and certain diets and monitoring movements and adjusting for pain.  And then there’s the out-of-the-ordinary stuff that messes up any semblance of a schedule we might have had.

Yesterday I wrote about feeling almost sick.  I did the right things to take care of myself: I got a little fresh air and exercise and spent the rest of the day resting.  I took something to help me sleep and managed to sleep almost 10 hours with only a few interruptions.  These days, that’s fantastic.  Still, I woke up today feeling horrible.  I’m not sick sick.  I don’t have a fever, my stomach is fine, I’m not coughing or sneezing.  My only real symptom is that I feel lousy.  I spent the morning watching tv.  Then I took a nap for 3 hours.  Then I watched more tv.  I was going to read, but I fell asleep before I even found where I’d left off on the page.  Doing dishes and typing on the computer are the most activity I’ve had today.

Now, this all sucks, no doubt.  I wish I felt better.  There are things I was going to do today.  Then again, I’m so glad I was able to do this.  I’m not working right now, so I didn’t have to worry about upsetting a boss or missing project deadlines.  I know that when I really need a day like this to rest I shouldn’t worry about those things.  I know that.  But I still worry about it, and sometimes I push myself to go to work when I shouldn’t.  Of course, that only makes the symptoms much worse.  So yeah, today really wasn’t all that bad.  I lost a day that I could have spent doing other things, but it’s worth it.  Hopefully I’ll feel better in time for Thanksgiving.  And if not, well, there’s only so much that any of us can do about our health, right?

There are some lessons I have learned very well from the illnesses.  Accepting my situation when it means a major disruption to my life is not one I have learned well, and it’s one I have to keep relearning over and over.  Today has been a good reminder; my health is what matters.  Jobs and friends and errands and everything else can and will wait.  It is more important that I take care of myself.  Now, I just have to be sure to remember that next time, too.

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Posted by chronicrants

The “almost” feeling

November 20, 2011

Do you ever get warning symptoms before you get sick?  What about before you get a flare?

For good or bad, having a chronic illness forces us to be much more aware of our bodies than a lot of us would otherwise be.  I’m pretty sure I would have ignored the way I felt first thing this morning, but after years of dealing with these illnesses, I’ve learned that a sore throat isn’t always just a sore throat.  For me, it’s a warning signal.  This is my body’s way of saying that something bad will happen soon.  If I don’t get some sleep in the next day, I’m going to get sick or get a flare or both.  Fun.

Now, on the bright side, getting sick would get me out of some unfortunate holiday obligations this week.  But it would also cause me to miss some fun holiday stuff too.  I guess I better pay the bribe and get some sleep.  If only it was that easy.  I fall asleep as soon as my head hits the pillow, but for some reason I’ve been waking up about 7 hours later, for no good reason.  Still, I can’t risk it, so tonight I’m taking a Benedryl, turning off my cell phone, and getting some sleep.  I hope.  12 or 14 hours should do the trick, based on past experience.

Yep, I’ve got the sore throat and the weakness and some fatigue and I know what it means.  I know what this means now.  The thing is, 10 years ago, I didn’t know what it meant.  And I’m pretty sure that even now I’m missing signs from my body.  Maybe there’s something I could have done yesterday, or maybe there’s more I could do now.  I think that a key part of treatment should be learning how to read our bodies.  Does anyone even teach this?  Maybe a doctor once told me to start paying attention, but I don’t remember it.  Autoimmune diseases can be frustratingly unpredictable.  Even a 12 hour warning is helpful.  I just wish I knew better how to recognize it.  I wish we all did.

 

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

Truly *understanding* chronic illness

November 19, 2011

“Why are you taking a leave of absence from work?”

[stunned silence]

“The usual stuff, but it’s gotten worse.”

[confused silence]

___________________________________________

I am shocked at how many times I have had this conversation.  To be honest, even one time would be shocking, but I keep having it over and over again.  A few weeks ago I wrote this post about wearing masks so that people won’t see what I’m going through.  It’s something we all do, and we each do it in our own way.  For me, it means letting people know there’s a problem, but not letting them see how bad it really is.  That seems to be backfiring (as these things always do, even though I pretend they won’t.)

A few close family members and friends understand.  I let them see how bad it was, or they saw through my facades.  A few others understand because they’ve gone through similar things.  But most people just don’t get it.  They know I have some “issues” but figure they’re under control.  I seemed ok, except for occasionally having to cancel plans or not being able to drive too far in a day, and those are minor, right?  So why should I need to take time off from work?  I hate to spoil the illusion, but it’s time.

I keep seeing statistics about how many people live with chronic pain, how many have arthritis, how many have autoimmune diseases. These number make for catchy headlines and memorable soundbites, but where’s the education?  Maybe the problem is that we’re all wearing masks.  We need to make our family and friends understand our illnesses, so that they can make their people understand it, so that maybe society will start to get it.  The ignorance is so frustrating.  Yes, I wear masks, but even when I do show people what’s going on, a few weeks later I seem ok, and they forget all about it.  I need them, we all need them, to understand.

If any of this sounds familiar, if you can relate, please share it on Facebook and/or Twitter.  This blog is new, and it would be great to share it.

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

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