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 "caregivers".
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 physically, too.
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 life'?"
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 enough".
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, actually..).
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 toxic!).
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.