Sunday, April 27, 2014

6/12/10 Spoons

A friend sent me a link to a little story about the amount of energy available to a person with chronic illness, a way to explain how chronic illness changes your life.  This co-worker feels that grief and chronic illness are the same...I’m not sure what to think about that, but appreciate her intention.  The link, by the way, is  Anyway, in our support group we refer to the same idea as our ‘budget’.  How much money we have in our budget to put towards all the costs of the day - mental, emotional, physical, psychological and otherwise.  How to grow it, how it changes, and mostly how it’s hard to plan because you don’t always know how much money you actually have, or how much something is going to cost.  Especially when you’re still learning about grief.  And I think you’re always learning when you’re in it.

Early on I was very aware that even the most basic things depleted the account.  A shower, a phone call, a few emails.  Then an errand out of the house.  Seeing a friend or co-worker for the first time after Anna died.  As time goes on and you begin to do more, it feels like people expect at least that from you (isn’t that how it always goes?  Whatever you do, the expectation becomes you can do at least that and more.  When does ‘more’ become ‘enough’?   Is it just our culture or has that been the way of it amongst humans for centuries?).  But I digress.  The point is, I became aware of just how much energy it takes to do basic everyday things when we returned from Italy, when it took 2 days just to rebuild reserves to have a conversation with someone other than Brad.

Since we’ve been back, I’ve returned to work at school for 4-6 hours two days/week, and full days  when assigned to the hospital (over Memorial Day weekend, yesterday, tomorrow).    We went to Faith’s Lodge last weekend Fri-Sun with our Infant Loss Support Group, which was good but of course draining it its own right.  Plus I’ve been sick with some sore throat/coughing/laryngitis thing since a week ago Wednesday (with little to no voice during the FL weekend, wouldn’t you know).  The voice is better, but I still feel tired - hard to know if it’s the illness, the hypothyroidism, lack of sleep from coughing at night, or all three.   I’ve wanted to blog several times, it feels like so much is happening, but find I don’t have the brain power.  Same thing for phone calls and emails.  The ‘budget’ doesn’t allow for everyday routines and needs, work, AND personal relationship/communication/journaling.   It’s been sort of a reminder of what we’re dealing with, maybe the dangers and pitfalls of the grieving.  Or the sick and chronically ill.  Start to feel better, take on new stuff, only to find you have to give up something else because you didn’t realize how much money - or how many spoons - it was going to cost you.  *sigh*   All those experts are not kidding when they say that grief is work.  It is.  You work all the livelong day. 

Maybe that’s what my co-worker means, in tying it with chronic illness.   I think I resist the correlation because I need to think that it won’t feel like this forever, that grief is more temporary than chronic illness.  And to be fair, things are changing.  2 months ago I could never have worked all these shifts.  I don’t cry several times a day as often.  Last night I participated in conversation about inane stuff like books and TV shows at a small birthday celebration, which I couldn’t have stood not that long ago - it was “Who cares about all that?  Our daughter, our miracle daughter is dead and we can’t get this nightmare to change and we can’t do this...” and that’s all there was room for in our psyches.   So all that is “progress”, as they say.   But Brad and I (and others) will never, ever be “over” Anna.   Grief will, in some form, be a part of our lives for the remainder of our lives.   Apparently you just make it a smaller part.   I see it happening.   While I know it’s good for overall survival, I hate it at the same time.  I hate going on without her, that someday her room will no longer be her room and all that will be tangibly left of her is that horrible cherished box of ashes, a few clothes, a stuffed bunny, 99 pictures and our anguish.  Progress schmogress.

ANYWAY, the point of the spoons/budget conversation was to let you know that the money in my budget is being used for work and everyday necessary activities right now.  Communications, as you have noticed, will be lacking for awhile.  (I work Tuesday, have a conference in Rochester Friday, work 9 out of 10 days starting Wed June 23 , then the 2nd weekend in July.   And Father’s Day this weekend - bleagh....  It’s alot!).  My ability to initiate and even get together for social stuff will be hard too.  It feels a bit like a throwback to those first many weeks.  So many of you have said “Just tell me what you need.”  So I’m telling.  I’m gonna need life support from you all if you want to get together or connect!  Or maybe just some patience to understand that it’ll be a few weeks.  Thanks, you guys.

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