Friday, August 10, 2012

More On: What Those with Chronic Pain or Illness DON’T Want to Hear

One woman wrote: "I mentioned to a friend when I got to his kid's birthday party that I almost didn't make it because I'd been in bed most of the weekend and it was hard getting out of the house. He said, 'You have such an easy life!'"
* * *
Let me tell you about life in bed.  BTDT, for a period of several years I was horizontal nearly 24 hours a day -- on a good day, I could make it from the bed to the couch so I was at least looking at different scenery.
On several occasions, the person who drove me on errands needed to leave town for 2-3 weeks to look after his elderly parents.  Just before he left, we'd shop for all the groceries I'd need while he was gone, and the effort would send me to bed for the next week.  It was not unusual for me to not see another human being (except on TV) for that 2-3 weeks he was out of town.
Most taxi drivers don't want to get out of their cars.  A driver who sits and honks, rather than one who assists me down the stairs so I don't fall, is not the sort of help I need.  Neither is the kind of driver who drops all my groceries on the sidewalk and tells me to carry them up the stairs myself.  So, when my personal driver was out of town, I generally did not leave the house, because I wasn't sure I could get back up the stairs into the house if I did.
Prisoners in solitary confinement have nothing on me!
Daytime TV is not that great.  Oh, occasionally you'll get something interesting like Tom Cruise jumping on Oprah's couch, but as much as I enjoyed certain shows as a treat on days off from work, as daily fare they left something to be desired.  Just the same stuff, over and over.  I swear Martha Stewart had only 2 months of shows and repeated them endlessly.  "Oh, this one again!"  I had no interest in makeovers/fashion, because for me, the big makeover was being able to sit up long enough to brush my hair, and if you're not able to leave the house, who cares what you're wearing?  I need to know which is the softest flannel nightie, not what's the trendiest prom dress.
I had to stop watching Home & Garden TV because every show reminded me of the abilities I'd lost.  I couldn't stand in the kitchen to chop and dice and saute for hours -- some days I had to lie on the floor and rest between spreading the PB and adding the J.  Relandscaping the garden?  I couldn't even manage the stairs to go sit in the garden for some fresh air!  And before you redecorate your house, you need to dust and remove cobwebs first, which requires you to be able to get out of bed for more than 30 seconds at a time.  Rather than deal with the daily frustration and sense of loss, I changed the channel.
I couldn't focus enough to follow the plot of a movie, unless it was something I'd seen a thousand times.  If I was still conscious when they got to the big reveal of the whodunit, I couldn't remember what it was that was done.  So Turner Classic wasn't good companionship, either.  I'd slip in and out of consciousness and by the end of the day be convinced that Katharine Hepburn had married Groucho Marx and Scarlett O'Hara was the maid of honor.
Invariably, I'd zone out before the end of the baseball game.  Really frustrating to have to wait till the newspaper arrived the next morning to find out who won.
So I finally settled on CNN for companionship.  They repeat stories often enough that I could eventually get the entire thing between bouts of brain fog.
And I watched my house fall into disrepair.  When I left the bedroom, I could turn left to get the newspaper or mail from the front door, or I could turn right to take the dirty dishes to the kitchen, but I couldn't do both.  If I was dragging laundry to the laundry room I couldn't also carry dishes to the sink (same general direction) because both were a two-handed task. 
Hiring cleaners wasn't the answer, either.  The minute I got up to go to the bathroom, the book I was reading or the knitting project I was working on would be boxed up and hidden away as "clutter".  So, apparently, were the dirty dishes in the sink, because as time went on, I had fewer and fewer plates and forks in the kitchen.  Now that I'm feeling well enough to be out of bed a few hours a day, I'm finding all sorts of things in those boxes in the guest room that leave me wondering "what was she thinking?  WAS she thinking?!"  Dirty dishes, recycling, folded laundry, even trash have come out of those boxes in the guest room.  It's been a never-ending source of surprise to see what hidden treasure I find next.  Apparently having a gift, the wrapping paper and the spool of ribbon sitting together on the dining room table wasn't enough of a clue to the cleaning lady that I was in the process of sending someone a Christmas present -- it wasn't where she thought it should be, so, whoosh!, into a box, into the guest room, and then "no, Senora, I don't know where it is".
From going stir crazy to feeling nasty because you can't safely get into the bathtub to watching your spotless house deteriorate to the point you need a snow shovel to remove the dust (cleaners won't dust anything "of value" so they don't get accused of breaking it, so they label everything "of value") -- life in bed is anything BUT easy.
Next time you have vacation time coming, lock yourself in your bedroom for the duration.  Alone -- no spouse allowed.  You are only allowed food that can be stored on the nightstand and requires no cooking (helpful hint: get a couple cases of nutrition shakes; cereal bars and PopTarts are good for this purpose, too).  You're only allowed out of bed a few minutes at a time 4-5 times a day, just long enough to get to the bathroom.  Turn the TV to a foreign language station and try to follow the shows (that's a reasonable approximation of brain fog).  Since I was generally awake at 3 AM and asleep during the day, I couldn't talk to people on the phone -- the only "conversations" you're allowed for that two weeks will be by e-mail.
And let me know when they cart you off to a rubber room because you went off the deep end in enforced isolation.  I survived that way for several years; if you can't handle it for a mere 2 weeks, don't you dare insinuate that I'm some sort of wimp.
Still think "You have such an easy life"?

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