reading notes, entry 9...

A Delicate Balance: Living Successfully with Chronic Illness by Susan Milstrey Wells.

It's been a while since I've had a reading entry. I've actually been reading a lot...but finishing little. Yep, lots of books on the go right now.

The title of this book, A Delicate Balance, refers to the delicate balances that people with chronic illnesses must find. The balance between medical treatment and self-care. The balance between acceptance and giving in or giving up. The balance between being productive and taking care of oneself. All of us in this life have to find balance in numerous ways--some of us seem to master it more easily, but I think it's something that we all deal with. This book deals with the particular issues that people with chronic illness face.

Anyway, I'm not quite sure why it took me so long to finish this one. My dear friend Eva recommended it to me, and I immediately put a hold on it at the library...and then it took me all my renewals to actually finish it. It wasn't that I didn't enjoy it, because for the most part I did. But I'm guessing that with any sort of book like this, some parts will be more relevant to oneself than others. Honestly, there were some bits that annoyed my cranky, skeptical side. Not annoyed enough to want to throw the book across the room or anything (thank goodness, as it is a library copy), as I do understand that she wanted to include a broad range of people's experiences, but annoyed enough to set down the book for days at a time before diving back in again.

Thing is, the parts that were relevant, well, they made up for the rest. I don't think anyone would deny how much it can mean to simply feel understood. There is great comfort, and sometimes, great empowerment, in that feeling. And even if this book had nothing else to offer, for that alone I'd recommend it anyone trying to learn to live with chronic illness.

And for me, there were other benefits. I had a breakthrough of sorts. As one woman put it, "...I believed it intellectually, but on an emotional level, I did not accept what the diagnosis meant for me. I went on trying to live like a normal person." While I don't like the use of the word "normal," the point of this section of the book is that so many people with chronic illness try to pretend to the outside world that they are still the healthy person they were before. Hell, not just to the outside world but to themselves as well. Unfortunately, while the act can be maintained to a greater or lesser degree for a period of time, clinging to that act is only making things worse. I'd sort of been coming around to realizing this on my own in the last few months, but it was really helpful to read this right now. Ever since I was diagnosed, I've been able to tell people I have fibromyalgia and I've been able to admit to the pain and the fatigue and the cognitive issues...yes, intellectually I got it. But I have consistently refused to admit that I need to adjust my life. Or even when I could admit that I needed to, I couldn't actually *do* it. I'm hoping this book will help me don a brave, but not false, face and make some changes.

Maybe my favorite aspect of this book was its ultimate positive outlook, while not ignoring or minimizing the sucktacular aspects of chronic illness. And my favorite line, a quote by Edith Wharton from the beginning of the final chapter:

In spite of illness...one can remain alive long past the usual date of disintegration if one is unafraid of change, insatiable in intellectual curiosity, interested in big things, and happy in small ways. 

I think that is the way I'd like to live, chronic illness or no.

tidbits and babblings...mostly on the never-ending battle for sanity...

*Never-ending feeling of being behind. On everything. Same old-same old. I get overwhelmed, barrel full-steam ahead in one area to make myself feel better, end up feeling worse because I'm then even farther behind on everything else. I know this is largely a problem within my own head, as opposed to outside of it. Ana put it perfectly yesterday when she said, "...I should know that holding on to 'shoulds' is the bane of my life..." 

*I started thinking about Christmas a couple days ago...and I nearly broke down. I'm already feeling like I'm way behind, and I just can't stand the thought of so much stress coming around as it does every year. Self-imposed stress, at that. So I made decision...and I'm going to try so damn hard to stick with it. I am taking this Christmas off. No, not from Christmas itself, of course. But from the "I have to do everything, and I have to do it all by my own hands" mentality. In other words, I am not making our Christmas cards this year, I am not making gifts this year (well, maybe just a couple...but not a couple hundred!), I am not making a dozen different kinds of cookies, etc. I'm just not. I'm not. I'm not.

*My physical health has, well, pretty much sucked the past few weeks. Even here I am my own worst enemy...I constantly do things I know I shouldn't do. I don't know when the very real fact that my stubbornness is doing me no favors will ever truly take hold in my head, but I know it needs to. 

*I am excited as all get out over the fact that there is now less than a month left of the school year!!! I only wish there wasn't still so much to do. :(  And of course, as soon as this year is over, it's time to start working on next year...but the pressure doesn't feel as crushing during that first month of summer vacation and I am greatly looking forward to that. :D

*I feel awful that I haven't been participating in Saturday Farmers Market as of late. (Just as I feel awful about not yet having sent a thank you note to my dear friend Jean for the wonderful surprise that arrived from her in the mail a few days ago, and about all the as-of-yet unreturned emails sitting in my inbox, and...) But hopefully next week I'll have a post up, as things have definitely changed since my last garden update. 

*I can't believe May is almost over, which means medical/psychological theme month is almost over as well. I didn't get all that many "theme" books read, but I enjoyed all the ones I did read, some more than others. And I have one I'm still hoping to finish as well, one I'm really enjoying. I didn't post about a cool moonlight by Angela Johnson, but I really liked it. It was sweet, but not saccharine. It had a unique feel to it, almost magical though it was set wholly in the realistic world. It was the first of Johnson's books I've read, but it definitely won't be the last. And happily, I know I already own a couple others. Another I read but didn't post about for this month's theme was Turn of Mind by Alice LaPlante. What a unique voice this book had! And I enjoyed it, but honestly not as much as I thought I was going to. I think that may have been a matter of false expectations though, as I really thought it was going to be more of a mystery. I was blown away by the author's ability to pull off this story from Dr. Jennifer White's point of view though. Which is the point of view of an intelligent, fiercely independent woman falling further and further under Alzheimer's grip. It was impossible not to feel deeply for this woman, and yet, I can easily say she wasn't a person whom I would have been friends with in real life. It's not so much that I disliked her, but we're two very different people. To be honest, I didn't feel like I would have been close to any of the major characters in this book, except maybe the policewoman (and she wasn't really a major character). Anyway, that means I read four books (Better: A Surgeon's Notes on Performance, A Cool Moonlight, Turn of Mind, and Silent to the Bone) for this theme (five if I finish The Fever in time). I am really looking forward to next month's glbt theme, and hope to read many more books than I did this month (but I make myself no promises). 

tidbits and babblings...

...I screwed up. After a couple weeks of finally feeling more human, I pushed limits I shouldn't have pushed, and now I have crashed spectacularly. A day jam-packed with non-stop chores following a night with just a few hours sleep was recipe for disaster. Even sadder, I didn't come close to finishing my to-do-before-Eva-arrives list, and now I've just got to admit that I'm not going to. :( Note to self: Next time have clean-a-thon before read-a-thon. Note to fibro: You suck. Note to Eva: Don't bring a white glove. :P

...Every single year, I'm surprised and delighted anew. One day the trees are still nothing but brown, and the next morning you wake up and there is this sudden profusion of green! Literally overnight. :)

...I love how my fingernails can be such a sign of the fun things I'm up to. Yesterday it was dirt dirt dirt I was cleaning out from under them. This morning it's bread dough.

...That dirt I just mentioned--yep, some of yesterday's labors involved the garden. Rich and Gray got the strawberry patch planted. :) And Rich and Max got four blueberry bushes planted. :) And Rich and I got some of the "4-6 weeks before last frost" seedlings planted. :)

...That bread dough I just mentioned...now two wonderful loaves of sourdough bread. Mmmm...

....Hoping everyone has a lovely week.

lately...

~~~in the reading room~~~
Just finished up Akata Witch by Nnedi Okorafor. Awesome, unique, YA fantasy. Loved it. Hoping to pick up her book Who Fears Death tonight at the library. Still working my way through Philip Pullman's Fairy Tales from the Brothers Grimm, and still enjoying it immensely. Lots of haphazard reading for school, as in reading chapters here and there for certain subjects/topics. Max and I are about three-quarters of the way through Burning for Revenge, the fifth book in the Tomorrow series. Major adrenaline pumping, I tell you. Note to self: Get sixth book soon! Gray and I are making slow progress through the first book of the Pendragon series, The Merchant of Death. Not really far enough to make a judgment yet, but we're both certainly enjoying it enough to continue. Super excited about Dewey's Read-a-Thon though I can't quite believe it's barely over a week away--April, where the hell have you gone?!!


~~~in the classroom~~~
School, obviously. :P Actually today Gray went to school with Rich, as its the day Rich takes his environmental science class to the wastewater treatment facility. Informative, if pungent, field trip for the young man. Mostly this week Gray has been finishing up a bunch of projects and assignments on his own for the third quarter. (Fourth quarter starts next Monday.) I've spent many, many hours preparing for our final quarter over the last couple weeks, and will spend many, many more before all is said and done. But my immediate future is reserved for writing up quarterly reports for the third quarter, which are due Monday. I've nearly finished Annie's, and will soon move on to Gray's. So don't like this particular task.


~~~in the yard and garden~~~
Okay, so there are no plants actually in the food gardens yet. But I've got seedlings galore started inside. And *really* need to get more going--poor neglected tomato seeds. Rich has made some progress in the preparations for putting in our new garden areas though. He tore apart an old rotting wooden playground piece, saving the bottom portion to become the fencing area of our soon-to-be strawberry patch. He got it moved into place, but hasn't prepared the soil or added the wire fencing to keep out the bunnies and groundhogs. I've been spending a few minutes every morning (while Max and I have our vehicle counting competition before the bus comes) dealing with the mess that is our flower garden. If I keep at it, maybe it will be ready by the time things start blooming. Yeah, probably not. :P


~~~in blogland~~~
I've given up stressing out about blogging. As in posting, that is. Period. But I am rather frustrated about reading blogs. After the announcement about google reader going away, I tried to figure out a few other readers, but gave up rather quickly. Decided to just give up google reader cold turkey and add a blogroll back on my blog. But *enormous sigh* it just doesn't feel like it's working. Not only is it a pain, but much worse I feel like I'm missing soooo many posts. I mean like even posts by people on my blogroll. *more sighs* I don't know--it's time I either try with another reader again or just learn to accept that I'm going to miss posts sometimes.

~~~in the craft room~~~
Project Life and I, well we just aren't getting on all too well these days. Honestly, it's not PL's fault; it's mine. I just haven't been in the mood. PL, I do still love you. I promise I do. But we just need a little time apart. One of these days though, if you'll still have me, we'll have a joyous reunion and hopefully I'll learn to treat you a little better from then on. And then there's Annie's birthday sweater. Hmmmm, Annie's birthday has come and gone...and said birthday sweater still isn't finished. If I finish it before month's end that should be good...I mean who doesn't love a surprise late birthday gift, right? The thing I've spent the most time on lately is my t-shirt rug, though even it has loooong way to go before it's finished.


~~~in the health arena~~~
Had routine bloodwork done recently. Got possibly good news. I'm still vitamin D deficient despite the daily supplements, and I'm still severely anemic despite the daily iron supplements. So mega-doses of vitamin D and up the iron supplements. Why this is good news is that both could potentially be reasons why I've been feeling so craptacular lately. Vitamin D deficiency can cause muscle pain and of course anemia causes fatigue...so it could be that my fibro is not actually worsening after all but just feels that way because of these other problems. Problems that *should* be remedied fairly easily. *fingers crossed*

~~~in the kitchen~~~
My bread machine's been getting a workout this week. And my crockpot was put to use to loading up the freezer with homemade veggie broth. Oooh, and I tried a delicious new recipe called Chewy Granola Bars. Big hit. Think they'll go into heavy rotation. In fact, I could see making a batch every week to have them around for breakfasts. Though honestly, they taste damn near desertlike. :)

yep, another project...

This is a post to cheer myself up. Though I guess I don't need cheered up anymore--my spirits, if not my body, are *much* better than last evening. I really should just leave yesterday in the past...there's no need to bitch about Rich getting rear-ended, and Gray and I having to shovel tons of heavy snow when I was already in a flare-up because we knew there was no way Rich would be able to get his little car in the driveway, and it taking Rich over two hours to make the normally 25 minute drive home from work, and having my muscles go into near total shut-down by evening, and getting almost no sleep because of the pain, and now not being able to walk the ten steps to the bathroom without tears flowing down my face. There's no need, but I just did it anyway. :p I sound a little bitter, no? But you know what, like I said, my spirits really are much better than they had been...

1.) Rich fixed up a little table at just the absolute perfect height so I can type without having to strain my arms or my neck at all. So I can sit in my comfy reading chair in my pjs with my unwashed hair (ummm...uncombed hair at that), wrapped in my heating pads all day reading graphic novels and hopefully some blogs as well.

2.) The view outside my window here is spectacularly magical! We didn't get a ton of snow--only about 15 inches, though it's still falling--but certainly enough to make everything look gorgeous. I always love this view, especially with snow...but there's just something about this latest snow that I can't describe and that pictures don't really capture. As Rich and I were saying to each other, it's so enchanting, so pristine, that it almost looks fake.

3.) Annie is giddily excited about tonight...she and her girlfriend, Dani, are going to a Valentine masquerade ball. For teens, sponsored by the Gay Alliance. And she will get to wear her gothic lolita dress. Yes, she is over the moon. :)

4.) And finally, there's my new project! I know, I know--I am a project junkie! But at least I'm in good company--Kelly is every bit as bad as I am, right Kells? :p

So, the latest project. I'm calling it 49 lists. It's in honor of turning 49, which I am about to do. 49 (and 4 and 9) have always been my favorite numbers...no idea why. Does everyone have favorite numbers? Anyway, in honor of completing 49 years on the planet, I'm going to make 49 lists through the coming year. I've already made the first one actually, because it will come into play before my actual birthday. "49 Wishes for Pampering During My Birthday Week" See, I'm incredibly lucky--my birthday always falls during winter break. Which means that Rich has no classes to teach and the kiddos have off of school. And most years, the kiddos go to my parents for a few days and Rich and I get a few days to recharge. This year, winter break will run from the evening of the 15th through the evening of the 24th. And while I'm sure I won't get every single item crossed off my list, I'm going to shoot for as many as I can!

documenting our life #ProjectLife style...week 4...

Before I show my proof that I am actually keeping up with Project Life this year, I want to apologize...for all the emails I haven't sent, for all the comments I haven't written, and for all the other ways I've failed in the friendship department lately. I don't want to complain, and I don't want to make excuses, but the only way I know how to explain is to just tell the truth--fibro has just been kicking my ass the past few weeks. I haven't had a flare that has been this bad or lasted this long before. Fingers crossed that it is a fluke and not a sign of things to come. Anyway, it has left me with little energy to do much, and for that I apologize.

But I have pushed myself to keep up with Project Life, be it in very simplified form. Keeping up is a good thing for me--I know from past experience that if I let myself get behind, I get very discouraged, and when I get too discouraged I end up quitting.

Okay, week 4. (Clicking on the pictures should make them bigger.)

Week 4 spread:

The left side:

Simple, simple, simple. The date card in the same style I've chosen for the year. The "what we did" card--and as we didn't have much going on, I was able to sew on a strip of matching paper. Included Annie's MCC class schedule since the spring semester started that week.

The right side:

Just a bunch of seasonal pictures. For the four bottom right slots, I just printed out a picture of frost on the window at 8x10 size and cut it into pieces before adding the chipboard letters. Think I'd like to do a page like this for every season this year, because our four distinct seasons are one of the things I love most about living where we do. Now if I can only remember to actually do it...

wanderlust...well, sort of...

I've started a new project. This surprises no one, I'm sure. :P

But this one's a little different. No reading involved. No crafting involved. Instead this one has to do with walking. People familiar with fibromyalgia know that exercise intolerance is generally one facet of it. And yet low-impact aerobic exercise is one of the best things one can do to help in managing fibro. Gotta love those damn catch-22s, huh? :/

Anyway, I've gotten pretty good at putting in my 30 minutes each morning. Mostly using the Wii Fit Plus, doing the stepping and running activities. I hate it, but I do it.

But to make things a little more fun, I just ordered myself a new, hopefully more accurate, pedometer. I generally have a 5-6 hour window of time from late morning through mid-afternoon where I'm feeling as close to normal as I come. And during that window, I'd like to challenge myself to add as many extra little bouts of walking as I can. Now I'm not trying to kid myself--I know that this window of time is when I have to focus on getting the things done that *must* be done on any day. (Not to mention that there are definitely stretches of time when that damn window just doesn't open at all.) So how many extra steps I can add to my day will likely vary widely.

Okay though--the fun part! To keep myself motivated, I've turned it into a little self-amusing game. (Yes, I am quite easily amused, and frankly, I'm grateful for that.) I'm pretending that I'm walking to meet various friends and family. Now I realize I'm inviting myself over to many people's home whom I'm never even met in person--but I'm hoping I picked friends who will gladly let me virtually use their bathroom and give me a nice tall glass of ice water before kicking me out the door and on my way to the next person on my list. And hey, if anyone else would like to invite me by, I promise not to overstay my welcome. ;)

I tried to plot my route in a fashion that made sense, but then I've never really been known for my sense of direction. And I've no idea just how accurate the mileage is between points--just did the best I could using the internet. (If you'd like to see my route, you can click on that link or on the tab above titled "I'm walking") Lu, I hope you don't mind, but I'm heading your way first...not sure how long it will take, but hopefully I'll see you sometime in early fall. :)