Are you nervous about mentioning you have ME when you need treatment for something else?

lenora

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Yes, I know that you face especially difficult problems in the UK. Fortunately (?) I have so many things wrong that I don't even mention CFS/FM any longer. If you're dizzy...just state that you're dizzy, not the reason why. I wouldn't be forthcoming anyway, not with the stories I hear. Before surgery is a different story....and surely someone will accompany you to the hospital, won't they?

Just be polite and agreeable to everyone along the way....that's all I ever do, although I was in a rather nasty state during my last hospitalization and the doctors were anxious to get me out. I was anxious to go...but my meds had been messed up and it was just a bad situation for everyone involved.

Just complain about your symptom of the moment. Yes, you're asked to list your illnesses, but nothing says you have to list all of them. You can always add them later if you feel it's a necessity. I don't know why they would make such a big deal about the position of your bed. Just use the controls yourself and if they leave you in the wrong position, then quickly change them after everyone has left.

I hope you can avoid the ER in the near future. Yours, Lenora.
 
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Revel

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I don't know why they would make such a big deal about the position of your bed. Just use the controls yourself and if they leave you in the wrong position, then quickly change them after everyone has left.
If your comment is in response to my post, @lenora, this is exactly what I was doing each time I was repositioned against my wishes. The nurse then removed the controls altogether, so that I could no longer do this, which left me sitting at an angle that causes me to faint. My point was that the hospital staff did not believe my orthostatic intolerance was real.
 

Rufous McKinney

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The nurse then removed the controls altogether, so that I could no longer do this, which left me sitting at an angle that causes me to faint.

in the ER: there seemed to be no controls for the bed issue...I was left with it jacked up, to "rest". Well I could not remotely rest, propped up. And with machines hooked up to both arms kathunka kathunka. And they make sure to not check on you....they also took my plastic glass with two ice cubes. I'm so dehydrated. They literally seemed to enjoy it. Three hours the nurse won't give me two ice cubes, when the doctor said it was OK.

I was 15 when I found myself abandoned, in a hospital after Mono and an appendectomy. And they decided to cut back my pain meds, and I'm a red head, just a child.

I"m going to go hire somebody to grow a whole field of Poppies, just for me.

Medical PTSD. I know I have far more of it than I even admit.
 

maple

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252
@Revel … I never talk about POTS. I just say my back is killing me and could I please lay flat. Seems to work. And my back is sore of course. Not lying. And mention being thirsty? No need to discuss hypovolemia
 

vision blue

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If your comment is in response to my post, @lenora, . My point was that the hospital staff did not believe my orthostatic intolerance was real.

As you also pointed out, it was far beyond mere disbelief. It was outright cruelty. Control battle from a small mind?

I had an ER nurse once physically try to stop me from ripping of an auto blood pressure cuff that was causing excruciating pain. Told him if he ever touched me again id try to get him fired. Risky given i was vulnerable but i was livid
 

Rufous McKinney

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In a fictional film, based upon a novel , I noted that in the story The Lost Daughter---- the main protagonist has episodes of becoming dizzy, light headed and has to lie down, typically briefly. She mentions this is an issue for her mother, in the story.

There you go, just something that bodies sometimes do. See English literature.
 

vision blue

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Thanks for all the replies.

I definitely need to resist the urge to mention it, I think. Although it's frustrating, because I don't want act like I'm ashamed I have ME/CFS, either.

Thanks.

Yeah def not ashamed of the REAL cfs. I guess maybe we should view the term as an ambiguous word they keep misunderstanding so fortunately in any language if youre misunderstood with one word, switch to other words

I wonder if some of what you and us are reacting to is we keep having to play the village idiot to get anywhere with the medical system and this is expected of a bunch of people who are as close to the opposite of village idiot as I’ve ever come across

Imagine a different hypothetical situation. How do you think this would go?

Nurse- its better for you to sit up

Village idiot. Thanks id really like to. want to hear something really weird?? Everytime i sit up stuff starts swirling and then i lie down and it goes away. Then i sit up and it happens again. Isnt that so weird? I do t know whats wrong with ne!

Nurse. Oh you probably just have ortostatic hypotension

Village idiot: Ortho what? you mesn thats a thing? Oh wow. Thanks

Nurse: here let me put that bed back down for you. How does that feel

Vilkage idiot. Oh wow so much better. Thsnk you so so much! Thats very interesting

Nurse walks away with little smile feeling powerful and like she has just won a war.

What does village idiot do? Peobably smile a dopey smile til nurse Ratchit leaves and then curses under breath.

So don’t you think that would get that kind of response? I’m not recommending anyone does that because it is so damn exhausting and straining and hell even Broadway actors get some days off but playing village ican gets better care if you can stomach it.
.
Somehow knowing things like “orthostatic” makes some people think we are to be battled with and put in our place! Pretending to kniw less than them puts them at ease and can even trigger wanting to be helpful.

(Humans are nuts). Insert cat or dog or horse video here...)
 

Rufous McKinney

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Nurse- its better for you to sit up

Village idiot. Thanks id really like to. want to hear something really weird?? Everytime i sit up stuff starts swirling and then i lie down and it goes away. Then i sit up and it happens again. Isnt that so weird? I do t know whats wrong with ne!

love your scenario....so this is tied into how they assume if your well informed ab out your possible illness, you must be a hypchondriac?

So never say Orthostatic.

OR etiology

I just couldn't figure out why ER Nurse Racket was clearly treating me like I'm there for painkillers

I said nothing about pain. Not until I was asked by the doctor around hour 2.
 

lenora

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I think the best friend we have when it comes to an ER situation is the one who accompanies us, preferably a spouse people will listen to, if not someone who will stand outside the room and let it be known that help is needed.

Yours, Lenora.
 
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vision blue

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love your scenario....so this is tied into how they assume if your well informed ab out your possible illness, you must be a hypchondriac?
.

The short answer is Yes; the long answer there could be other resoutions besides hypochondria to the schema violation, but hypochondria is a pretty convenient resolution from their pont of view if you think about ti.

So the schema/script calls for one medico, who is the expert and one patient who is the grunt. Script says grunt enters asks for help from the expert, expert "solves" problem, everyone leaves happy. Expert is reassured of his expertise which feels good, patient no longer has complaint, which feels good. So it's the old patient saying "it hurts when i do this" Doctor: "So don't do that". Script over. Next episode.

NOw consider what we do. Medico comes in. Instead of "it hurts when I do this", we say "Ok, what I've figure out so far is that factors 1, 2, 3,...to 14 are not relevent (hands medico a 3 page summary) and was able to rule those out through experimentation, lab tests, etc but I'm stuck and really need help with factors 15 and 16. Can I try maybe a trial of X to test out 15? How about a blood test for Y- I've never had that and it may show item 16. Also I'm not clear on how the mechanism works by which...do you by any chance understand how ATP is generated when...."

Medico blinks 3 times rapidly in puzzlement. This wasn't in the script! It's like Romeo would be stunned if suddenly Juliet starts talking about sheep in the pasture and what she did on her summer vacation rather than professing undying love. What to do? Romeo might go on with his prepared lines, ignore the glitch, the play goes on, maybe all will just forget the hiccup.

So the medico tries at first to do just that: "I've seen the thyroid produce alot of strange symptoms. I'll test for TSH, that stands for thyroid stimulating hormone (grunt rolls eyes) and come back in 6 weeks..." . Grunt can barely contain fustration and tries as calmly as possible: no, thyroid was item 2 - it's there in the paper I just gave you. It was one of the first things I considered. Every year at least I make sure to test. My high sensitive TSH is normal. It's also identical to the value it's been for years before I got theses symptoms. I also had tested T3, T4, reverse T3, T7 and since I know autoantibodies to thyroid can be present years before symptomrs, just in case those were there so I had anti thyroglobulin and 2 others anti-thyroid antibodies tested. I know there's still in pricinicple 2 more of those I could check but the odds are too low". (sounds like us, right??) I really I don't want to start all the way back at square 1; i'm not getting anywhere. How about trying the med...

Now medico knows the first script violation was not a glitch and he can't go on with his lines as planned. So now what? One possiblity is to throw out the script. Say ok, i'm in a different tv show. in this one, there's not 1 expert but 2 experts (and man that 2nd one I have to admit is more up to date on this than I am) and if he/she says theyve ruled out the first 14 possiblities, ok, let's start at 15 A couple do this resolution but most don't. it requires having no script and having to "wing it".

So waht the is the resolution if not that. Medico thinks: hmm what would make a non expert grunt spout that level of detail and act like an expert- I know! we learned in med school hypochondriacs go that! Now he can go back to the script. his help is to let you know that's what you have.

when i said before when the nurse has to "put you back in your place" i think that's thre right way to describe what often happens here. (and with nurses there's a further wrinkle- theyre between docs and patients. docs are above them, patients are below them. Theyll be damned if a patient ever tries to get above them! its bad enough docs are.) Obviously not all act this way. but it fits with many times. the more grunt tries to show the medico interpration is wrong, the harder the medico has to dig in the heels, be in doc or nurse phlebotomist even to try to put grunt back into his/her place, to make sure they follow the script. Me trained expert, you grunt who lacks expertise,

Every now and then, someone will approach me by email in my area of expertise, and instead of briefly saying "can you tell me about x" or "can you help me with x" etc. , I get a monologue in which they are telling me everything they learned and discovered through their often extenwsive layman research Sometimes at the end, theyll ask if i have comments on the monologue. other times they forget to add to it a queston. Either way, I have to say, it's a turnoff- even knowing what i know about being in the other role. And usually despite normally being very helpful, I rarely can help such folk.

no moral here, it's just how it works out given our circumstances.
 
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Rufous McKinney

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Sometimes at the end, theyll ask if i have comments on the monologue. other times they forget to add to it a queston. Either way, I have to say, it's a turnoff- even knowing what i know about being in the other role.

this seems to be a key insight.

Given this common truth, how do we interface with this system?

It would seem that we must acknowledge that human egos are involved, and we must be clever in managing these ego issues.

Some feeding of the ego, is required.

I managed to find a GP who mostly doesn't do any of that. However, I don 't very often do what you describe, either. (the time I brought eight pages of notes, was eight pages of paper rustling) (bringing a patient advocate with. called, my husband, did not lead to any form of help at the comprehensive eye doctor appointment which was not comprehensive.)

I do not chase their tests. Figure I"m two years COVID behind on : can this marriage be saved? (remember that column?) I was hoping the real eye doctor would care, but alas. Alack.

Alot of developments with ME and COVID and long haulers, at the moment, and my doctor is a capillary expert. I'd like to get into a deep discussion of non deforming red blood cells, and endothelial disfunction in the vascular system.

My doctor treats me as someone who actually is smart and worth talking to and knows things. I'm very well aware this is not typical in any way.

Yes, my GP is banned from the local hospital. Good. He does not go along with alot of procedures and messing with people. My GP is a realist.
 

vision blue

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1,967
@Rufous McKinney
"My doctor treats me as someone who actually is smart and worth talking to and knows things. I'm very well aware this is not typical in any way"

Will respond more when i can. But on this, that's great and I have some like this too. Does it help? The truth is, even in this case, it has not helped me. Hope it has for you. For me, It's something i've learned recently: that i've been biased to keep docs who i consider more intelligent and who know i'm intelligent and are willing to engage in some academic discourse. And have bene biased to keep them even if theyve done nothing to help, even after years. So now i'm dumping those too - two recently. (have you checked the notes of those "colleagues"? sometimes what they say is different on paper. and what they say changes over time if after years one still does not fall into the flow chart.).
maybe there are no generalizations , don't know. I've backed myself into a corner in part because my ego is bigger than them. hopefully others don't back themselves into a corner like that and most on this list have not, despite being frustrated. ,M y most helpful MD now happens to be a moron. So be it.

on on your last message- right "etiology" is a big one. even has 5 syllables. Pentasyllabic? is that a word. Monsyllables: Head hurts. Feel sick. Please help. Grunts get one syllable. (this is on the grunt reply - the schema for the ones who recognize our intelligence will come at another time. ).
 

Rufous McKinney

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I"m recalling how I asked my doctor the direct question: Why can't you prescribe anti-virals?

And the response I got to this direct question was- no answer.

Now why was there no answer? Because I rapidly entered the silent space, forming between us, and when I saw he was fairly silent, I stepped into it and said something else.

Instead of just maintaining the big silent space, waiting for his answer. And a followup on topic, should there ever be an answer.

(Chances are his answer would have been something like- I'm a GP and I"m not comfortable prescribing them. )
(or: maybe only researchers with research permits can write such an RX) (I thought that at the time, wondered).

He told me to go to Stanford: who would then give me antivirals (we now know thats not likely, but 4-5 years ago it maybe seemed more possible).

And I aint going to Stanford, nor is Stanford doing any of this at the moment from what I can tell.

Then, having made an appointment with allergist/immunololgist, thinking "antivirals"...well they called back to cancel, and quite specifically indicated they "can't" help me.
 

Rufous McKinney

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13,495
Does it help? The truth is, even in this case, it has not helped me. Hope it has for you.

well no, of course not!

He gave me LDN That helped. thats: the extent of the help.

He gave me Modafinl, which I only took half of one once, and he got mad.

"I was trying to help you"...he got defensive, I thought that was odd. He wrote down: patient non compliant. WOW. I felt punished.

I promised I'd someday try it again, but what someday is that?

What he does give me is

1) I feel better after I see him because he is charming, upbeat, positive and encouraging despite all this, unlike any other doctor I've ever been near.
2) he likes females, he understands them. Such men do exist, but they are rare (based upon my lifetime experience).

so, I keep him. Finding the actual one's who need to help me next, well maybe I'll think about it. Or not.

I was 14 when I saw what doctors were doing to me, and to my parents. And at that point in my life, I decided they weren't in charge of me. Repeated messages were delivered- avoid these people at all cost. And their pills.
 

lenora

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5,019
Yes, egos are involved and some people are just naturally more likable (right or wrong, doesn't matter) than others. I've found that I want kindness and willingness to learn as attributes....these are most important to me. Also, if possible staying with the same doctor and trying to understand the position they're in. It's not easy as we naturally think (& in a perfect world this should be true) that they're the doctor and it's all about us for say 15 min. at least.

Most are willing to try what we suggest as helpful or, and you may have struck gold, they've treated patients with ME and know what to do to at least help the situation.

Some are specialists for the very hard cases and have more knowledge. If we're lucky they also have empathy and will shower it on their patients. A touch as they're leaving, that type of thing.

The system isn't great, I'm not saying that at all....it's like so much else in life, how do we work within what is before us? Arguing is out, (although presenting something sound is fine) being agreeable to trying what's available is the most helpful. Some things actually do work...not in a cure, but in lessening pain, etc. A good doctor will actually admit (after trying as much as possible) that we're not in a good place, but will try to make things as easy as he/she possibly can. I'm grateful for them and true to their word, they do exactly what they've said.

As time passes, I remember them in small ways....a note, cookies, bagels something to say, "Thanks, I appreciate that you've tried." And I mean it, I do appreciate it....but this takes time and getting to know each other. We're also people in addition to being doctor/patient and this is the way we should treat each other, with kindness and thoughtfulness. Again, this takes time to build up to....and like I said, some people are just easier to like and get along with than others. You'll find someone along the way. If you're lucky you'll find a few....and they're worth having. The cardiologist, the optician, the orthopedist, the dermatologist, but they aren't the ones we truly rely on over the long haul. What are your needs....and most of all, is this person trying? (I'm not talking about specialists in ME, but doctors close to us that we may see twice/yr.) Just trying to help. Yours, Lenora.
 
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vision blue

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1,967
[QUOTE="Rufous McKinney, post: 2390308, member: 35644"
I was 14 when I saw what doctors were doing to me, and to my parents. And at that point in my life, I decided they weren't in charge of me. Repeated messages were delivered- avoid these people at all cost. And their pills.[/QUOTE]

I was 16. You were precocious!

Much empathy for much that you say. i think i know exactly what you mean. and now getting angered on your behalf; many of us have similar stories. Our senses of humor are similar too - intersting.
 

vision blue

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1,967
@vision blue
Anyone who misses your obvious intelligence is actively trying to ignore it. This is usually because they, correctly, sense themselves to be outgunned as it were, and are frantically trying to find a way to get a leg up.


Fight on !!!!!

Paranoid schizophrenics are v;ery intelligent too though.
Right, Some of the issues are as I describe above i think
thanks for the "fight on. Will see. not sure what i'm fighting- time maybe.
you too! - i mean you should fight on too, i'm not fighting you!
thanks for comments
 
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