Sunday, October 30, 2011

PFAM Call For Submissions: Looking For Inspiration

I can be a bit of a pessimistic curmudgeon on my best days, and it's way too easy to slip into a pity party for myself about the impact my debilitating chronic illness has had on my life over the past 4+ years. Especially when I'm flared, as I currently am from a weeklong trip to Chicago to visit my extended family.

More about the highlights and lowlights of that trip later; today I'm getting ready to host the next edition of Patients For A Moment, the blog carnival about, for, and by people with chronic illnesses. The edition will go live here on November 9 and submissions are due to me by midnight Pacific Time on Sunday, Nov. 6.

I don't believe in always being cheerful when I feel like life sucks, so I try to give myself the space to express my feelings (and thanks to everyone who reads my blog, since this is the second most place I express those!) for a day or two, and then work on cheering myself up, or if that's too big a stretch, to find a way to feel hopeful again. 

I'm sure I'm not alone since depression often goes hand-in-hand with chronic illnesses and disabilities.

So what do you do to get yourself out of the doldrums when you fall into a funk? What (or who) inspires you and gives you hope? Where have you found inspiration when you weren't even looking for it? How do you keep on keeping on when your pain is high and your fatigue is even higher?

For me, sometimes it requires getting a reality check to remind myself that however lousy my chronic illnesses are, there are people out there who are coping  (better!) with much more than I do. Sometimes it's as easy as getting to snuggle with my kid as she reads aloud to me (which is so cool!). Often, very often, it's reading books and/or blogs by people who have dealt themselves with these kinds of life-altering changes chronic illness forces. And chocolate always helps (at least until it hits my hips). :)

If you'd like to participate in this edition of PFAM, and I hope you do!, send me an email at sickmommaPDX (at) gmail dot you-know-what with the following:
  • Your name (as you’d like it to appear in the post).
  • Your blog’s name.
  • Your post’s title.
  • Your post’s URL.
Meanwhile, I'll share one of my deepest secrets of a guaranteed pick-me-up: I listen to a playlist of (modern) Disney music that I made for my daughter about a year ago. I just find it's impossible for me to not smile when I listen to Amy Adams sing "Happy Working Song" (from Enchanted) or Donny Osmond sing "I'll Make A Man Out Of You" (from Mulan) or a duet from Aladdin by people I've never heard of called "A Whole New World."


Friday, October 14, 2011

Thanks For All the Fish!

I'm not saying so long*, but I did want to say thank you to all of you for reading my blog, offering me support and a community of people who know what it's like to deal with debilitating chronic illness.

On Oct. 14, 2007, I started this blog, not really expecting anyone who wasn't related to me to read it. I still believed it was just a matter of finding the right specialist to order the right diagnostic test and I'd have a diagnosis and, ideally, a cure. 

I'm sure there's a life lesson in there somewhere about expectations and assumptions. :)

But while I consider the onset of my illness an unhappy anniversary, I definitely consider today to be a happy one, the silver lining to my life-changing mysterious illness. And that's primarily because of all the people I've met through this blog. 

So thanks, all of you, for being my silver lining! 

*The title of this post is a reference to Douglas Adams' book So Long, and Thanks for All the Fish in the Hitchhiker's Guide to the Galaxy series, a longtime favorite of mine. 

Tuesday, October 11, 2011

The Invisibility of Invisible Chronic Illness

In an ideal word, I would have managed this post during National Invisible Chronic Illness Awareness Week, which was Sept. 12-18. But better late than never, right?

So I have a friend. She's someone I've known since before I got sick because we have kids the same age. I'll call her L.

L is a great friend, who's always willing to help someone out whether it's convenient for her or not. When a babysitter falls through, she's the first one to volunteer to have your kid over for an extended playdate. Need help with something at your house? She's right there. She and her family don't earn a lot of money, but she's so generous she would give a friend her last dollar. She's smart, has a sarcastic sense of humor, and is just a fun person to spend time with. Although she would deny it, she's always been the "cool kid" in any gathering I've seen her in. 

So when I had a chance to have a girls night out with her recently, I jumped on it. I modified my schedule so I had two stay-at-home days leading up to our date. I scheduled acupuncture for that afternoon since it generally gives me a solid energy boost. I even took the full dose of Adderall my physician prescribes for my intense fatigue. She volunteered to drive. 

Keep in mind that my "night out" started at 5 p.m. and I was home and ready for bed by 8:30 p.m.  This was not some late-night affair with drinking and dancing for hours, or at all for that matter. 

It was a charity event that we spent a little more than an hour at, and then decided to stop at a restaurant across the street to get something to eat. While we were waiting for our salads, I mentioned that I was proud of myself for not canceling at the last minute, which is what tends to happen with my occasional evening commitments. (I try not to make evening commitments because I'm usually wiped out within a few hours of waking up.)

I don't remember exactly what prompted her comment, but I was struck (momentarily) speechless when she said something along the lines of, "You know, you never look all that tired when I see you." 

"That's why it's called an invisible chronic illness," I eventually replied.

"I know, I know -- but you don't seem so tired," she said.

So I started explaining all the trade-offs I make on a daily basis, including the ones I mentioned above that I'd made to go out with her. And, I confessed, I was probably going to end up missing the Portland Area Fibromyalgia and Chronic Fatigue Syndrome support group meeting the next day that I'd hoped to attend. (Sure enough, I didn't leave the house again for four days, and even then I still felt like I was running on empty.)

The more I thought about it, the more it made sense to me, even though I had thought she was one of the healthy folks who "got it." 

But it's true -- she rarely, if ever, sees me when I'm at my worst because I stay home those days. Heck, I tend to stay home even on my moderately bad days. So she only sees me when I'm either feeling good or there's something (usually kid-centered) that I feel like I can't miss and I hide how I'm feeling as best I can. And try hard not to crash or collapse until I'm home.

More than four years into this illness, I'm not sure how to figure out where the line is between sharing the details of how I'm feeling with my friends and becoming the boring person who's always whining about her health. I try to err by not discussing my health unless I absolutely have to (except on my blog, where I feel free to whine as much as I want, and Facebook, where it comes up sometimes :-), and it's rare that I absolutely have to discuss it.

But is that a good thing or a bad thing? Am I doing a disservice to other people out there with invisible chronic illnesses by not being more vocal about it? 

I've read so many statistics about the huge (but invisible) numbers of Americans who have chronic illnesses, which can be anything from mild allergies to cancer, a huge range. Some of them are easily controlled with medication and no big deal to live with. Others aren't so easy to live with even if there are few, if any, outward signs.

I don't know what the right answer is. I'm not sure there is a single, right answer, for me or for anyone else. 


Sunday, October 2, 2011

That Which Doesn't Kill Me Makes Me Stronger. Right?

Here I am again, apologizing for my lack of blogging. I wish I could say it was because I was feeling so great that I was out having fun and keeping busy. 

Nothing bad happened over the past month or so, but nothing especially good did either.

As usual, I'm just feeling like I'm hanging onto a cliff by my fingernails. 

Somehow, I thought this school year would be an easier start; it's first grade, not kindergarten. The Jewish holidays, with their requisite days with no school, started about a month into the year rather than the second week, like last year. 

And yet, somehow, it's been an exhausting whirlwind. Exhausting being the key word there. 

I made it to the Rosh Hashana kid service this year; I don't think I did last year. But it was all such a blur last year. As this year is becoming too. It all seemed (barely) doable until this past weekend, which was a four-day weekend for Ellie, who is on "restrictions" due to difficulties in being honest that snowballed into something major. Which meant close to no TV, no play dates, no special outings. It also meant having to find "work" for her to do as part of her consequences. Which, of course, is even more work for the parents. 

I don't think I've ever been so happy to have a Monday come around as I will be tomorrow. It means two full days of not having to leave home, of having the house to myself, of having quiet time to try to recuperate before another complicated weekend. 

Why is it that I never feel like I manage to catch up, to "recuperate"? But, like one of the songs I used to love from The Bad Examples, I'm "Not Dead Yet."

So I must be getting stronger, right?

Oh, and l'shana tovah to those who celebrate. Wishing all of you a sweet, happy and healthy new year!