Feeling a bit less pain

October 1, 2012

I’m trying to focus on feeling a bit less pain.  In general I’ve had plenty of good days, but I’ve also been having bad days.  On this blog, though, I’ve been focusing almost entirely on the negative aspects lately.  Of course, there’s a reason this blog is called Chronic Rants.  Yes, I like to rant.  Yes, I think that sometimes it’s necessary to rant.  But it’s also necessary to focus on the good parts too, to make sure we don’t just wallow in negativity.  I sometimes have to make an effort at that.

So today I’m thinking and writing about having less pain.  The pain really skyrocketed last month, thanks to the change of seasons.  I’m not sure exactly when this week the pain went back down to my pre-transition levels, but I love that it did.  I know that it might not last, but I’m going to focus on it while I can.

I think there’s a tendency, especially with a new symptom or a new diagnosis, to expect a complete “cure” of a particular problem, and anything less isn’t good enough.  Over time, that attitude changes.  When you’ve suffered from level 6 pain (remember that good old pain scale?) for years and then it shoots up to a 9 for a while, going back to a 6 feels great.  Sure, my fingers still curl more than I’d like, it’s hard to rest my hands palm down, and I can’t carry heavy things, but so what?  And the truth is, I had many years of pain at levels 8 and 9 on a daily basis, so I’m actually able to do a lot now, thanks to hydroxychloroquine, that I couldn’t do before.  I can hold a pen and write a full paragraph, I can hold a knife and cut vegetables, I can pick up a pot of water and pasta and drain it in the sink, and I can type with two hands.  This is fantastic!  Is it perfect by a “healthy” person’s standards?  Nope, far from it.  But for me it’s heavenly.

I have a lot more tough topics coming up, and I won’t shy away from those in my mind, in my heart, or on this blog.  But today, it feels good to focus on having a bit less pain and feeling a bit happier because of it.

Leave a Comment » | Expectations, Limitations, Medication, Pain, Raves, Symptoms, Unpredictable | Permalink
Posted by chronicrants

Saturday night slump

September 22, 2012

It’s Saturday night and I’m the pathetic “friend” checking status updates on Facebook.  It’s 9pm on a Saturday and I’m at my computer.  I have plans.  Well, I had plans.  There’s a huge, once-a-year event that I love, and this year, for the first time, it’s just a short walk from my apartment!  I really want to go.  But I’m so tired.  And I have to be up early tomorrow.  But I want to go.  But I have to be up early tomorrow.  And I’m tired.  But it’s only once a year.

Sound familiar?  I’m sure most of you have experienced this.  I’ve certainly written about it before.  And a bit more recently, too.  And it still sucks.  I don’t expect to go out every night.  I don’t even expect to go out every Saturday night.  I just want to go out tonight.  I guess that’s asking too much.

Now in fairness, I actually could go out tonight.  I could throw on some halfway-decent clothes, walk five minutes, and hang out with friends and new people.  I could flirt with some cuties (there will be a lot of single people there, and while I’m not in a good place in my life to date now, some flirting could be fun.)  I could have a lovely time, then come home at a reasonable hour and get some sleep.  So why don’t I do this?  Well first, I’m so run down, I don’t know that I have the energy to flirt and chat with people I don’t know.  Plus, I really do have to get up early and be active (active by my standards, at least) tomorrow.  I should have planned that better, but I had forgotten to put tonight’s event in my calendar, so I forgot about it when I made tomorrow’s unchangeable plans.  I went out last night, so it’s not like I’ve been stuck at home for days, which happens sometimes.  But I’m still just frustrated.  I was inside all day yesterday until I went out at night.  Since then, I’ve been inside all day today.  I missed the sunny weather.  I’m missing the fun tonight.  I feel like I’m missing my own life.

I want to think this is temporary.  And let’s be honest: a few months ago I wouldn’t have been able to go out to last night’s thing either, so I’m making huge progress!  And there will be another event next year.  Maybe I should put that in my calendar now.  But then, what if it isn’t temporary?

I feel like I should apologize to you.  I sound like a whiny kid, all upset because I’m only getting some of what I want.  And that’s true.  As we all know, when you’re living with a chronic illness, there’s a lot you don’t get.  Sometimes I can handle it, sometimes I can’t.  Today isn’t one of the better times, but I’ll get through it and life will go on because really, what other choice is there?  So tomorrow I’ll be a happy, mature adult.  But for tonight, I think I’ll indulge in a bit more whining.

2 Comments | Expectations, Frustration, Isolation, Limitations, Rants, Symptoms, Unpredictable | Permalink
Posted by chronicrants

The joy and joint pain of autumn

September 18, 2012

I love autumn.  The heat and humidity of summer are gone, and with them a lot of my extra fatigue and other symptoms have gone.  And it’s pretty.  The sky is clear most days, the leaves change colors (they’re just beginning now,) and the air is crisp.  I’m happy every time I look out the window and see the lovely weather.  This picture is from last year, but you get the idea.

Of course, right now we’re in a transitional time.  Right now, summer is mostly over, but not quite.  And it’s mostly autumn, but not entirely.  We haven’t transitioned completely to the cool days yet.  Sometimes I’m hot in a t-shirt and sometimes I need a sweater.  It’s mixed.

And we all know what that means, right?  If you don’t experience worsening symptoms during spring and fall, then you’ve probably heard from others who do.  My rheumatologist says that her phone rings constantly in the spring and fall.

For me, spring is definitely worse.  My body seems to know that bad times are coming, with summer on the way, so it goes haywire.  But autumn isn’t the easiest thing either.  For the last couple of weeks, it seems to have manifested itself as worsening joint pain, especially in my fingers and wrists.  Now, I’ve had pain in these areas for more than 20 years, so it’s not like I can’t handle the pain itself.  What’s bothering me is that no movement causes stiffness, and small movements from fidgeting makes it worse.  Big movements are good, like washing dishes or cooking or sorting through a pile of books (as long as they aren’t too heavy.)  And the problem is that I just don’t have enough of these big movements to keep my joints happy.  I’m home a lot these days, so I’m open to suggestions for things I can do at home to keep my fingers and joints useful without using up too many of my spoons.  Typing on the computer or reading or watching tv all seem to be bad things for my achy hands, and that’s how I usually fill my days, so I’d love some new ideas.

How’s autumn for you?  Is it a rough transition, or is your body just glad to be out of summer?

Good luck during the changing of the seasons CI folks!  At least it’s pretty.

4 Comments | Expectations, Frustration, Limitations, Pain, Rants, Symptoms, Unpredictable | Permalink
Posted by chronicrants

Could I be healthy?

September 13, 2012

When I wrote a couple weeks ago about being hopeful that maybe my health could improve one day, that was based on my own gut feeling (so to speak) that I could get better.  My doctors have not expressed that kind of hope in many years.  My new naturopath has seemed more optimistic, but she has never spoken about our end goal, and I was not ready to ask.  I was afraid to ask.

Today I steeled myself.  I took a deep breath.  I stared blankly at a spot on the opposite wall.  And I asked: “What do you think my prognosis is?  What’s our goal?”

She surprised me with her answer: “That you’ll go back to work, and that at the end of the work day you’ll still feel good and be able to do things.  That you’ll go out and do things on weekends.”

Obviously she misunderstood, so I clarified: “No, I mean, what’s our realistic goal?”

Imagine my shock when she said that yes, that’s the realistic goal.  So of course I asked when she thinks that might happen.

“Within about 1 year from now I expect you’ll be back at work.”

What?!?  I had figured she had a positive outlook for my recovery, but this was more than I had expected.  I didn’t quite believe it, and I still don’t.  1 year seems like such a short time.  After all these years of my body destroying itself, could I really be “cured” in 1 year?  Of course, I wouldn’t really be “cured,” but to be so much healthier seems like the ultimate cure to me.

Of course, she thinks that 1 year is too long.  She practically apologized, explaining that if I had gotten treatment sooner, before my conditions had taken such a toll on my body, then she could have reversed their affects more quickly.  Still, she has helped me more in the last 3 months than my other doctors have in the last 8 years.  And she says that we’ve “only scratched the surface” in terms of treating me.  So maybe it’s possible?

1 year.  12 months.  I can’t seem to grasp this.  Could it be possible?  Could I be relatively “healthy”?  Could I work full time and support myself, and still have the energy to see friends, pursue hobbies, date?  It just doesn’t seem possible.  When I wrote about my hopes before, they felt like a far-off dream.  I figured maybe in a few years, if I was lucky…. but 1 year?  That feels so soon.  Next fall.  Dare I hope?  What if it doesn’t happen?  Would I be too crushed?  But then, what if it does?

Some people dream of buying a bigger house, or driving a fancy car, or flying all over the world in a private jet.  I only want my health and my loved ones.  Could I really be within reach of having it all?  Could I be healthy?

4 Comments | Expectations, Healthcare, Medication, Raves, Support, Symptoms, Unpredictable | Permalink
Posted by chronicrants

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