Thursday, August 7, 2008

Half a Job

To help or not to help ... that is the question

Don’t get me wrong, I appreciate that cab drivers and other people
carry my purchases up the stairs to the front porch instead of leaving
them on the sidewalk, but that’s only half the job.

After going to the store, I head directly to bed.  I’m wiped out, and
I’m not going to be able to do anything physical the rest of the day. 
Assuming that I do nothing else the rest of the week, it’ll take me the
rest of the week to carry the bags the length of the house to the
kitchen.  And another week after that to completely  put the contents

Unfortunately, like everyone else, “shopping” is just the first on a
long list of things that must be done to keep my household running, so
quite often, the lighter-weight things (like bread or yarn) get to
their ultimate destination fairly quickly, but the heavier items (like
canned goods or books) are continually rescheduled to “later, when I
have the strength to lift something like that”.  (For the record, there
have been days when I needed both hands to lift a cup of milk, so the
advice “take smaller loads” sometimes means carrying each individual
can with two hands in its own separate trip – if Ive just brought in
the newspaper, I cannot also carry a can on my return trip to the back
of the house.)  Meanwhile, the front hallway is cluttered with bags;
people’s first impression of the house is that I live in a pigsty
because I’m doing the best I can with helpers who don’t do the whole
job that I need them to do.

When I was working in an office, doing half a job was considered as
good as not doing it at all.  One day, the power went out afterI’d
typed a critical letter, but before it was printed out.  We couldn’t
send it – so it didnt matter that the job was half-done, because it
wasnt completed to the point of being usable.  And so it is when the
groceries are dumped 50 feet from the cupboards they belong in.  It
does not take a healthy person all that long to carry a few bags of
groceries to the kitchen ... I bet most of you could do it in one trip. 
But that extra minute or two is apparently more than anyone helping me
has to spare.  And adds a week to the time it takes me to get the
groceries fully put away.

Talking to other CFS patients, I hear a lot of stories about fresh
produce or ice cream needing to be thrown away because by the time the
patients got home from the store, they barely had the energy to get
themselves into the house, so the produce rotted or the ice cream
melted in the hot car before the patient had the energy to go out and
retrieve them.

Similarly, I’ve had people “clean” my house by putting everything into
boxes and then stacking the boxes in front of a closet or cupboard. 
This may make the house look neater, but it actually makes matters
worse: I can’t access the cupboard to put other things away, and I
can’t lift the top box to access the stuff in the lower boxes.  What
I’d really asked them to do was to put the things AWAY, and even shown
them where the stuff belongs ... often, in the very cupboard that
they’ve blocked, ensuring that I can’t put it away, either, because I
can’t lift the box to move it to be able to open the door.

Eventually, I simply buy more of what I can’t get to, adding to the
clutter in the house, and eventually, someone comments on the fruit
flies and can be persuaded to go through the boxes and throw away all
the food that’s gone bad because I couldn’t get to it when it was

Or people who are paid to clean my house, in the process, knock
something to the floor, and don’t pick up after themselves, leaving it
for me to pick up after they’ve gone.  There are cardiac abnormalities
in CFS and many patients report feeling they’re going to faint when
they bend over.  For me to pick something up from the floor safely
requires that I sit on the floor, pick it up in one hand, and then use
the other hand to push my arthritic knee up to a standing position to
put it away.  And, with CFS, you don’t move from horizontal to sitting
or from sitting to standing rapidly, because that also makes you feel
faint, so the process of picking up one item takes several minutes,
rather than the few seconds necessary for a hired housecleaner to do it
herself.  One knocked a box of 50 CDs to the floor.  For that project,
I had to pull a chair over, take several minutes to put all the CDs on
the chair, then haul myself off the floor and do stage two, moving the
CDs a couple at a time from the chair back to the box on the table.  Or
the housecleaner could have simply pushed all the CDs back into the
box, and lifted it to the tabletop in a single move, because a healthy
person can easily lift a box of that weight.

I’ve gotten to the point of thinking that I need to use Quake Wax to
hold everything in the house onto tables and shelves, not because of
the earthquakes, but so that I don’t have to clean up after the hired
cleaners who don’t pick up what they’ve knocked down!  I hire people to
pick up what I have dropped on the floor, not to knock stuff on the
floor for me to pick up.  Unfortunately, many agencies have a
pay-in-advance policy, which leaves me without the option of saying
“you’re not getting paid till you clean up after yourself”; they've
been paid and can just leave when I ask them to clean up the mess they
created.  Sure, I can refuse to hire them again, but because the agency
has already gotten paid, I have no leverage to make them finish the job
as I would if I were in the position of saying that they don’t get the
check till they pick up what they knocked down.

By not asking me “what would help you the most?” and doing what they’d
do in their own homes, people are not actually doing me any favors by
doing half the job.  If you’re only going to do half the job, I would
rather that you put half the dishes in the cupboard and leave the other
half in the dishwasher, so I have access to all of them, rather than
putting them all where I can’t get to them.  That sort of thing doesn’t
help me in the least.

I am grateful for the help I get, but I would be a lot more grateful if
the jobs were completed and not left at a stage where completing them
is more than I can do myself.  Unfortunately, too many people, no
matter how much you’re willing to pay them to do it right, find it
easier to do the job badly or halfway, and then expect praise for
leaving you worse off than you were before.

P.S.  I was recently in a craft store that was having a clearance sale,
and indulged in a wheeled scrapbookers’ tote.  Since it's smaller than
a regular wheeled contraption, it should fit through the narrower spots
and tight corners in my old house where the Safeway delivery driver’s
handtruck can’t go.  If I don’t have to exert myself as much to carry
the bags of canned goods, theoretically it will no longer take a full
week to transport them to the kitchen.  I’ll let you know how that
works out.

Drug May Substitute For Exercise

They were discussing the drug that supposedly substitutes for exercise. 
The doctor they talked to said he can see where it would be of help to
people in wheelchairs who can't exercise.

The nutritionist and trainer (i.e., no medical training) completely
ignored the part about people who "can't exercise" and insisted that
there's no solution but exercise.

The drug made mice lose weight, run 44% further and for 23% more time.

In short, the doctor thinks this is valid research (from the respected
Salk Institute) and the drug shows promise.  It makes more mitochondria
(which Cheney thinks is a problem in CFS) "which is the engine that
drives muscles".  The heart is getting stronger.  His conclusion: "The
science may actually bear out" when applied to humans.

I agree with the concerns of the trainer and nutritionist that
otherwise healthy people may use this drug as a substitute for diet and
exercise.  However, it will be a PRESCRIPTION drug, therefore, they
can't get it without the compliance of a doctor.  Their doctors simply
need to stand up to them in the same way that my doctors stood up to me
when I requested the expert-recommended sleeping pills and pain pills,
and tell them "No, I want to prescribe something else instead."

If I'd been able to get any drug just because I wanted it, I wouldn't
be in my 8th year of relapse: I would have been back to work within a
few months.

If the drug is misused, not limited to just those of us who physically
can NOT exercise, don't blame the patients; blame the doctors who wrote
the prescriptions.