mama whose curiosity knows no bounds

Archive for the ‘Advocacy’ Category

About the spoon theory

Many with lupus and some in autism community are familiar with Spoon Theory, coined by Christine Miserandino.  The original blog post, “But you don’t look sick” is here. According to Wikipedia, the spoon theory is defined as:

The spoon theory is a model used by some disabled people and people with chronic illness to describe their everyday living experience when their disability or illness results in a reduced amount of energy available for productive tasks. Spoons are an intangible unit of measurement used to track how much energy a person has throughout a given day. Each activity “costs” a certain number of spoons, which might not be recharged until the next day. A person who runs out of spoons loses the ability to do anything other than rest. One of the tenets of the spoon theory is that disabled or ill people must plan their activities to ensure that every day is manageable, while healthy people have a “never-ending supply of spoons” and thus never need to worry about running out. Because healthy people do not feel the impact of spending spoons, they may not realize that chronically ill or disabled people’s considerations include mundane tasks such as bathing and getting dressed. Spoons are widely discussed within the autoimmune, disabled and other communities, but the concept of spoons is otherwise considered a neologism.

I feel it a lot. When I have a lot to do, I try to save my spoons by resting between activities as much as possible. Relaxation and meditation sometimes gives one extra spoon! Because worrying and stressing out is an activity that consumes several spoons, I need to make a conscious effort not to stress out.

But sometimes that’s not enough. I feel like I collapse on the spot, but there are things to do. What I do metaphorically, is “borrowing it from future”. By sheer willpower, I borrow a spoon or two to get through the day, knowing that I have to pay back by bedrest the next day. I think about what I sacrifice by having much fewer spoons the next day. I often find I sacrifice the most important things – my family.

I wish I had a lot more spoons. But I don’t. I wish I could save spoons for my family. But I can’t. Without being advocate, probably I’d have much fewer spoons to begins with, or I might have run out of spoons already. This is my lifeline. I am sometimes overwhelmed by these conflicts and internal inconsistencies. I don’t know how.

I have a lot of learning how to save my spoons. I’m very poor at it.



My First Post – shouts in a well

Well, this is my very first blog post.  Let me introduce a bit.  I’m a Japanese mom in late 40’s.  I have a husband, a son, and a daughter.  My curiosity is endless – thus the blog title, “Boisterousmama”.   Or just totally unfocused.  Anyway.  I’ll post whatever I’m up to.

My dominant interests are, as a mom, of course, parenting.  But in my case it’s twisted.  First, my son is severely autistic and lives in a group home.  Second, my daughter is gifted and does gymnastics.  So my parenting interest expands to special education, gifted education, gymnastics, autism/disability advocacy, etc.  Of course I still deal with a “regular” stuff like puberty and teenage (my daughter is a tween) issues, too.

Being a mom is a huge deal and occupies a huge proportion of myself.  But I’m other things, too.  For my wage earning, I am a molecular biologist.  My hobby is mostly crafts like sewing and knitting, but I’m also a novice learner of blogging and programming (oh, sooooo novice).  Then I have a bunch of diseases — lupus, fibromyalgia, osteoporosis for a starter.

So I can post on any of it.  If you are interested in what I post, read and comment, if you don’t, just ignore it.  But I know this first blog is like barbar’s scream in the well “king’s ear is donkey’s ear”…..


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