High on life and Prednisone

February 17, 2012

After months of feeling tired, run-down, and sometimes even fatigued, I suddenly had two good days in a row!  I was so excited that maybe something could be changing.  I mean, I wasn’t about to do some huge amount of activity, but I could do a bunch of little things and still feel good.

And then I remembered that I had taken Prednisone these two days.  Damn!

The clinical details aren’t important.  It comes down to this: trying to prevent physical and mental harm, and also trying to avoid another long stint on Prednisone, my doc and I agreed that I’d take the steroid for just a few days, including the taper.  It seems to be helping the pain that it’s supposed to treat, but it’s too soon to be sure of that.  In the meantime, it gave me an energy boost that is both exhilarating and depressing.

It’s a bit depressing to know that this energy burst probably won’t last, but it’s also so wonderful to remember how it feels to not be tired all the time.  True, even with the drugs I’m not exactly about to take a super long walk or go to the gym, but yesterday I saw a doc, read at the library for a couple hours, then hung out with a friend at her place for an hour (and even played with her kid a bit), then came home and was a bit tired, but not really worn down like usual.  And for the last few months, that would have been too much activity for one day and I would have felt horrible the next day, but today I’m actually ok.

It’s always the same old thing: I know I could take Prednisone long term and feel better.  I could go back to work, hang out with friends, date, travel…. get my life back!  But I’d also be slowly poisoning myself, and that’s not ok.

Then again, living like this isn’t ok either.  There’s no good answer.  I’m going to try some dietary changes and maybe that will help.  In the meantime, I’ll be holding onto the precious memory from this week of what it feels like to do things without feeling exhausted.  I can hardly wait to feel that way again…. one day.

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Leave a Comment » | Decisions, Expectations, Frustration, Limitations, Medication, Rants, Raves, Symptoms, Unpredictable | Permalink
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Time to stop editing my health

February 14, 2012

“Can you come to brunch on Sunday?”  Gee, why does that suddenly seem like such a complicated question?

I was invited to a potluck brunch for this weekend, and as I was giving my answer, it occurred to me just how many different answers I constantly give to that same kind of invitation, depending on who’s inviting me and how I feel at the time.  Right now I’m starting to flare (well, a flare within a flare) and that makes this weekend especially unpredictable (or maybe just predictable in a way I’m refusing to believe at the moment.)  There’s always the question of how much to share, and what do I really want this person to know?  And then I realized the most important point of all.  But I’ll get to that.

Invitation: I want to be there, but I know I might not be able to make it.  What to say?  I need an excuse, in case I don’t show up.

Close friend: I’m starting to have some bad pain in my foot, so I don’t know if I can make it, but I’ll be there if I can.  I’ll let you know, but it might be at the last minute.

Everyone else (these answers hint at the truth for less-close friends, and are totally uninformative for acquaintances): I may have to [insert weak excuse here], but I’ll try my best to be there.

Preparing: I don’t know if I can go, but even if I can, it might be tough.

Close friend: The pain is worse.  If I make it, I won’t be able to bring anything for the potluck.  Cooking isn’t happening now, and I wouldn’t be able to walk through a store to pick something up.

Everyone else: Um, by the way, is there parking at your place?  Yes, I’d normally walk, but I, um, have to be someplace afterwards and I’ll need my car.  Oh, and what floor do you live on?  Is there an elevator?  Oh, just wondering.  I, um, have a bad knee.

Day of: If I can make it, then all’s good, and if anyone comments on my limp or other visible symptoms, I’ll just make something up.  But if I can’t make it…..

Close friend: Damn this fucking pain!  Hopefully I can make it next time.  I hope you have a great party – let me know how it goes!

Everyone else: [Short email] I couldn’t get out of that other thing [mention previous weak excuse].  I won’t be able to make it, but thanks anyway.  Hopefully I’ll be there next time!

How do you handle this kind of thing?  I do this because it’s the best I can think of, but what I wonder what other people do and if there’s a better option.  I hate hate hate editing myself.  In all other parts of my life I just say what’s on my mind and it’s so much easier.

And then the most obvious point came up and whacked me on the head: Why do I do this?  Why do I make up different stories for different people?  Why not tell everyone the truth?  Obviously I wouldn’t tell a stranger the whole truth – that’s way too complicated.  But why not just say that I have pain sometimes, and right now it’s acting up, so I can’t predict if I’ll be able to make it to the brunch on Sunday.  Sure, they may have a lot of follow-up questions, but if I’m not in the mood to deal with it, I can always brush them off.  I can say that I can’t talk about it now, but I’d love to set aside a time to go over it with them later.  Why not?  

I think that I may just have to try this from now on.  It may not be easy, but balancing out the different lies and half-truths isn’t so easy either.  Besides, I’m generally a very honest person.  People think I’m honest to a fault.  The one thing I lie about is my health, and that’s just stupid.  I don’t have the physical, mental, or emotional strength to deal with that kind of crap, so why am I wasting my precious energy on it?  So for the next few months I’ll try telling the truth to everyone.  I can’t wait to see how that goes.  And it’ll have a fantastic added bonus: I won’t have to worry anymore about when and how to broach the topic – everyone will already know!

If you can relate to this, it would be so awesome if you’d click on one of the social media icons below to share this.  Thanks!

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

Spreading the word on chronic pain and chronic illness

February 13, 2012

I found this great web site the other day, How to Understand Someone With Chronic Pain.  This is one of the more accurate and insightful sites I’ve seen.  The problem is, it only works if people read it.

I emailed this site to some specific people, I posted it on Twitter and on Facebook.  I’ve told people about it.  But I can’t force anyone to read it.  I’ve seen other good sites and videos, but again, they only work if people read the pages and watch the videos.

For the people important to me, I think that if I email them the site and tell them that it’s important to me, they’ll read it.  But then, these people already have a better understanding than most, since they’ve watched me deal with this for 20 years (or as long as they’ve known me.)  How can I get their friends and acquaintances to read it?

Really it all comes back to the same old issue: ignorance in the general population.  I’m tired of people suggesting that I’ll feel better if I get more exercise, or that I just need a good night’s sleep, or that I can’t really be doing that badly if I’m acting or looking so good.  I know that at some point I have to ignore people and just not care, but that can be very difficult to do.  I’ve learned to ignore strangers, but what about friends of friends?  What about coworkers?  It gets complicated.  We all have our thresholds, and lately I’ve been hitting mine.  A lot.

There’s no real point here, only that I hope everyone who reads this will email/post this site, or a similar one, to the people they know so that we can spread the education.  There are millions of people with chronic illnesses; we can’t pretend otherwise.  Let’s spread the word!

 

It would be so awesome if you’d click on one of the social media icons below to share this.  Thanks!

2 Comments | Educating, Frustration, Insensitive, Intrusions, Isolation, Rants, Raves | Permalink
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The best kind of pain

February 7, 2012

***Warning: I get a bit sappy when I talk about my friends’ kids.  But hey, that’s an auntie’s prerogative, right?

When I was a kid, every winter my family would go cross country skiing once or twice.  We built snowmen and went sledding throughout the long New England winter, but because we went skiing so rarely, it was a real treat.

Every trip was different, but they all had the same excitement: the drive out there, getting fitted for skis and poles and boots, relearning everything we’d forgotten since the last time, breaking in the middle for hot chocolate, falling over in the snow.  It was a magical time.

Until the next morning.

Going only once or twice each winter meant that my skiing muscles never got built up.  Every morning after a ski trip, I’d wake up sore as hell, and all day long it would only get worse.  The first time it happened, I thought something was wrong with me.  After that, I knew what it was, but it was still a tough couple of days.

The other day I woke up with that same feeling.  It was glorious.

A close friend had a baby recently and I drove across the state to visit them.  Before this I knew that the Plaquenil I started last summer
was working, but only because I could climb up more stairs before my knees gave out.  This day really proved it.  First, I held the baby.  A lot.  Much longer than I could with her first two kids.  There’s nothing like holding a sleeping newborn; they’re so incredibly peaceful.  My wrists and hands were sore afterwards, but I could tell the pain wouldn’t last long (thankfully I was right about that.)  Then I was playing with the older kids on the floor, and before I knew it, they were both climbing on my back at the same time!  I never thought I’d be able to do something like that!  It was fantastic.  I’ve always enjoyed being fun auntie Rants, but it was in a calmer way – coloring and building blocks and shaping clay and reading.  This was the first time in their lives that we’d been able to roughhouse together.  Did I mention it was fantastic?  Sure, I said no to them when one wanted to sit on my back and have me crawl around; I know my limits.  But having them climb on me while I wiggled around on the floor (on purpose – they loved it) was really…. am I overusing “fantastic” yet?  And what amazed me was that I really didn’t feel any pain.

Until the next morning.

Actually, though, I wasn’t really in pain the next morning, just sore.  Very sore.  Muscles hurt that I didn’t know I had.  After all, I had barely used them in many years, so I really couldn’t blame them for acting out at me.  It was a rough day, and the next day was even worse.  And I loved it!  I’d do it again in an instant.  Playing with the kids was a dream come true, but the soreness was good too.  Have you ever gone to the gym, done some great new exercise, then ached the next day?  You know how good it feels to know you’re building up your muscles?  That’s what this was!  Only I never thought I’d ever be able to work these muscles again.  I thought that for the rest of my life, they’d remain barely used.

Ok, this isn’t perfect.  My energy still sucks and I felt exhausted for days after that trip.  But this shows there’s hope.  For more than nine years, I was in pain all the time.  I mean all the time.  24/7.  It got to the point where I couldn’t remember what it felt like to not be in pain.  Now I have pain every day, but only for parts of the day, and to me, that’s magical.  It gives me hope that my energy could rebound too.

And yes, I’m realistic.  One day the pain will get worse in all the places where it’s now a bit better.  That could be in a year, or 10 years, or 50 years (longevity runs in my family, even with the autoimmune crap), but I’m sure it’ll return.  For now, I’m just living it up.  And for me, that means getting on the floor and letting adorable kids climb all over me.  And if I’m sore the next day, remembering their laughter makes it all worth it.  It’s the best pain I’ve ever felt.

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Leave a Comment » | Expectations, Limitations, Medication, Milestones, Pain, Raves, Symptoms, Unpredictable | Permalink
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