Overwritten alas, having ME, alas. Is there anybody with a copy? Please? About
Dr. Yes and Kim? It involved the text that follows and the image below. (I'd
rather don't redo it, but I will if I must.)
Hey "teej" (:))
Coincidentally, I just had a crappy experience today that underlines what we
were talking about the need for our own brochures/info for professional
Some background: I got put in this nursing home when I contracted three
serious infections in three weeks (requiring two hospitalizations) at an
"Adult Home" in Queens, the last being pneumonia. Naturally those caused a
lasting crash in the ME/CFS overall. The nursing home is in a very woody area
and my allergies have worsened - these (incl mold allergies) seem to worsen
the whole ME thing, and allergic asthma/COPD that limits what I can do
Plus I get way too little sleep, esp. lately, due to all the racket they make
here esp. from the early morning onwards. I haven't been able to try even mild
physical therapy since a big crash (allergy-related) in the spring. I have
been pushing to have these situations improved since January. Nada.
ANYWAY...earlier today a whole bunch of people walk into my room while I'm
trying to sleep (late, of course, due to a sleep cycle shift thanks to their
constant noise..): it was my "care planning team" which includes the social
worker who knows zip, the physical therapy genius who thinks I'm just afraid
to leave my room and want to remain sick, the dietician who I've begged for
months to arrange for better food (given my GI probs) and doesn't seem to mind
that she does nothing, a Recreational Therapist who thinks I can do better if
"I just will it", and a couple others who can't pronounce my last name (which
they think is my first name).
I was bombarded by all of 'em about the fact that I am "just staying in bed"
instead of going to the gym (which is right near my room, hence a lot of the
noise) and exercising. (I should mention that I had been bedridden for the
last several years and only last fall had any improvement, now mostly erased).
I was extremely annoyed, seeing as I'd already had this conversation with each
of them separately.
When I told them that I would love to exercise, and had pushed for it myself
earlier but had it cancelled by my insurance, they said: "because you weren't
meeting their goals."
When I told them those goals were for a person of otherwise regular health
with an injury, not a disease, they said "well, that was then, but you haven't
tried again since spring."
When I told them (again) that I've had a relapse/crash in CFS since spring,
and its been downhill since then, they said: "So what you're saying is 'this
is as good as it gets for me, and I'm just going to stay in bed the rest of my
When I said nooo, I would like nothing better than to get out of bed, but as
long as I'm in a place where I can't sleep, can't eat well, have no treatment
for CFS or other symptoms, and live in a high-allergy environment, I can't
improve, they said "well that's going to happen to you at any nursing
home..Why don't you just try? Build yourself up gradually. The more you push,
the stronger you'll become."
I told them "Chronic fatigue syndrome places absolute limits on what you can
do physically at any given time; pushing beyond your limit, as I've told you
all before, causes "-- then I explained PEM and relapses yet again, and told
them they don't know what it's like to have CFS. Then they chorused "Oh, yes
we do.. nobody here is minimizing your illness.." I also told them about how
many, many people with CFS are bedridden or at least unable to exercise, not
through any choice of their own. The response: "But we don't want you to end
up like them! That's why we want you to push yourself! You have to try!"
At this I started to really loose my cool - which I don't know how I've been
able to maintain for the last year or so - and told them that frankly it
really pisses me off when people who don't understand the disease or how hard
people struggle with it just assume that they know better than patients who've
had it for years or decades and that those patients must not be "trying hard
As it got more heated, they said "well this is going nowhere" and I got some
of those exasperated-with-you looks and they turned to leave, but asked if I
had any questions for them. I was too burned out by this time to say anything
intelligent, but I said yes what about an aide assisting with the wheelchair.
I don't know about you guys, but I haven't been able to push a wheelchair
myself without severe PEM since early in ME/CFS, when I was ten times stronger
than I am now - not even after PT. (Wanted to start a thread on that,
The mindless, circular response was "well, if you go exercise, we could get
you strong enough!" I told them I have a doctor's note (from an outside
rheumy) explaining that I need wheelchair assistance and that PT would not be
be enough to allow me to do it thanks to CFS. They conferred but then
announced that it would be impossible for the staff to accomodate this need.
(At a nursing home!?) I said but I'm trapped in this room, then.. that can't
be healthy!! No response, and then they beat a retreat, advising me to still
"consider the suggestion of physical therapy."
I was briefly furious, but I'm so used to this and so worn out that I just
managed to swallow it. This kind of treatment is so familiar to a lot of you,
I know. For me, it's become almost daily (though not always with several
people scolding you and looking at you like a self-destructive headcase at the
same time... still, I've gone through much worse.)
My point is this can, and I'm sure does, happen to any ME/CFS patient who is
forced into a situation or system where s/he is dependent on others for
housing and other basic needs. I don't have the right word for it.. not
"humiliating", though that too... But it leaves an impact, and the anger
inside just builds, and I hate being angry (and I've noticed that it really is
I'm sure I'm not the only one who's been in a situation like this; there must
be others out there who find themselves broke and with no one to take care of
them, and I guess they wind up in the same boat. But that is where I think our
information and at least some of our advocacy is best spent -- PROPERLY
educating the MAJORITY of professionals about the real ME/CFS and how
they must (and must not) deal with us if we wind up in their hands.
I was wondering what to put in a brochure, teej, but this reminded me of the
physical disability part of ME/CFS, and the shocking ignorance and denial that
we face daily about it by people who we depend on. Simply mentioning that
"some patients are bedridden" while still advocating graded exercise is
ridiculous; someone has to get it through to these folks specifically what our
limitations are at different levels of illness and back it up with doctor
testimony and research findings.
I think we'd have to emphasize the unquestionable physical reality of the
disease, the injustice and stupidity of the "malingering" label, the specific
physical limitations and requirements, and a demand (no more "please, sir")
that those charged with care of those with ME/CFS research the disease before
they claim to know what's best for us - as surely they would do for any other
disease they were new to. (Would they allow a young member of their profession
to come up with therapies for a person with MS, or lupus, or HIV if he had
never read about those diseases?)
Well, that's my first rant, of sorts. Actually holding back a lot, but gotta
go to sleep; appointment with a crappy cardiologist tomorrow. Who keeps
recommending exercise for my NMH (doesn't care about the rest). :mad:
Sorry I couldn't brainstorm much, teej; this really is a terribly important
thread; it's not just about brochures themselves as I see it, but about how we
can change how we are treated and what we want to educate them about. When I
tried to get a brochure or any info about CFS, this was the reason.