I think about things a lot as I go through my day, intending to blog about them, but the brain fog takes the thoughts away before I can summon the energy to blog.

The book discussion I spoke about a few days (posts, rather) ago is discussing the positives of being sick.  This is a double edged sword that chronically ill people have to deal with very carefully.  On the one hand, being sick, in pain, exhausted beyond the capacity to even feed yourself, you really need to find positives to hang on to, or you’ll be forever depressed.  On the other hand, if you try to stress the positives of being sick, you’re often accused of gold bricking, being lazy, making things up, taking advantage, especially when your illness is the invisible sort.  Even more so if you’re female; after all, this is where the word “hysterical” came from.

I never really wanted a career; I’ve said that before many times.  I’ve always wanted to be a homemaker, a wife, a mother.  It’s why I’ve never been driven to do anything else.  That said, I often enjoyed working, and since I had to, it was no big deal.  Our family life settled into what worked for us; I worked because I had the best earning power and a decent job, the Beloved took care of the house and kids, and he was good at it.  I had no resentments, no regrets; it was the way life worked for us, and it was fine.  Thank TPTB, our family is still fine; my husband loves me and seems to understand the things I’m going through, or at least he knows I’m doing the best I can, the kids are  reasonably happy and healthy, we have a roof over our heads.  We are so much more fortunate than many.

But yeah, I’m frustrated, angry, sad sometimes.  It’s hard to wake up after 9, 10, 11 hours of sleep still feeling like it’s bedtime, because you’re exhausted.  It’s hard to spend an hour making dinner for the family, and then be too tired to eat it, literally.  It’s devastating to want to go to your child’s soccer game, and know that walking from the car to the field will make you so tired and in pain that you run the risk of snapping at the people you love.  It’s demoralizing to be hunting for a job, knowing that just showering and dressing for an interview takes so much out of you, never mind the stress of actually being interviewed.  Wondering if you get the job, will you be able to do it?

It’s very interesting to me to learn that only in America is Chronic Fatigue Syndrome called that.  In most countries, it’s called Myalgic Encephomyalitis.  At least then it doesn’t sound like you’re just whining about being tired, after all, who isn’t?  I still don’t know what I have; most people with these invisible type of illnesses take 5-10 years to get a diagnosis, and since I can’t even go to a doctor right now, I’m guessing, for the most part. I know I have autoimmune tags in my bloodwork.  I know I have Hashimoto’s Thyroiditis, and it may entirely be that, or possibly CFS which often is associated with many other disorders, or both, or neither.  I know it started about four years ago, after a really bad viral infection, which is often the case in CFS.  Since my Chinese medicine doctor thought I had CFS, it has seemed like the most likely culprit in the research I’ve done.

Anyway, the whole point of this post was to discuss the positives I find in being sick.  The first one to come to mind is occurring right now; since I’m not out of the house at work, I get to hear my husband practice his guitar playing.  Even though I’m in my room typing this, too tired from starting dinner to get up and walk to the living room to be with him, I get to hear him play, and I love it. It’s always been one of my favorite things; him playing guitar or piano while I sit near and spin or knit.  When I was working, I wouldn’t get home til  dinner time, then it was kid time and bedtime, and I hardly ever got to listen.  Now, I hear whenever he plays, and it’s a balm to my soul.  Which sounds kitschy, but is true nonetheless.

I get to do more with my kids.  I’m home now to make lunches, attend activities, help with homework, play, read, whatever.  It’s really wonderful to be there.

I also get to spin, knit, etc more.  It does happen sometimes that my hands hurt too much to do any crafting, but most of the time I can do something, for a little while at least.  I really enjoy it, for many reasons.  I love making things for the people I love.  I love turning nasty looking raw fiber into beautiful yarn, then making something lovely and useful out of it.  I love the textures, the gorgeous colors, even the smells of the various fibers. I love being able to talk to people about the process.

I’m reading again.  I haven’t read a book in ages.  Other than knitting books/magazines, I mean.  I love my Kindle App and I’m reading philosophy and religion, and the classics that I’ve always wanted to read and never had time for.  Now I have to take them in small doses, but at least I am reading.

I’m working on me. On being a better person, on being healthier and happier in my circumstances, on being stronger and more confident about my life and my choices.  That’s a really, really good thing.

It’s not the way I’d choose to get these “perks,” of course.  I’d rather be doing them healthy, without pain.  But I am doing them, whatever the reason, and I can feel better about myself because of it.   I’m learning not to care so much about what other people think about  me, though that’s going to be a long road, I know.  A road I’ve at least started.

Having rested a while, I’m going to go drag my carcass out to the living room to sing along with the music while I knit.  Maybe I’ll get some pictures up too!


1 Comment (+add yours?)

  1. asbestos
    Feb 11, 2011 @ 15:55:36

    Sounds like Toni is rubbing off on you 🙂 I’m glad you can see the positives. It really helps to acknowledge the blessings along the way. Has it only been 4 years? It feels like you’ve been sick forever, tho I guess I know that’s not true. It is such a balancing act — finding the positive, but not quite choosing to be ill. Toward the end of my time at home, I could understand how a person could sort of fall into “being sick” even when it wasn’t necessary. In your case, I can say with certainty that something is really wrong and you’ve not just making a lifestyle choice 🙂 I hope over time you figure out what helps, what hurts, how to pace yourself. Okay, I really hope you are simply WELL at some point, but if that doesn’t totally happen, I’ll settle for finding what works for you.


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