Are there residential group homes in the U.S.? And your exp. when needing more care.

[aangelonduty]

I really really hope it works out for you. Im thinking of you.

I am really sorry you are going thu all that......nix.... jail or mental hospital ....especially now, ' they ' seem to love to get hold of ' one of us ' in a mental place, cause they now...have to so-rights's to experiment on us....as we are an experiment anyway..!! ~~~ BUT...my heart goes out to you.....any of ' us ' that are enduring these hardships...the illnesses are more than enough for as is ...but the.... living part...who will take care of us,.... emotional issues, exp's, reg being cut off from the world, abandoned by friends..family & surrounded by people who know nothing about what is is like to ' rally...walk, in our shoes ' ......myself, I have been on a silent ' spiritual quest ' my whole life....made a a lot of lemonade, w/ faith & laughter......& I have committed ! to Knowing we ....are on a spiritual journey & I will step right up to the plate, to except ' my ' issues * take responsible & I have chosen to walk the ' path ' ...not just 'talk ' it.......To the point..." All things are in Divine Order.....BUT wow.....are they hard !! especially when u have been sick for a long time... ( me- 30 + yrs) those are days.... that turned into years, AND when we say ....' enough is enough ' & so far....Today, ...I am here .....

 

[taniaaust1]

Party at jimells' place! Who's bringing the booze?

I'll supply the soda water and the lime to go with it . I think the drinkers would make a lonely group.

 

[taniaaust1]

[ @taniaaust1 -I just hope if this is something you are thinking about that if a crime was involved...you could get out if need be. I would hate to see you in there at all, but not being able to leave if things get awful...well, yuk.

You will have no contact, not much internet, not many phone calls with the outside world. No help if things go sour in there.

The whole thing is one big "yuk."

ME is a big "yuk".

What internet? There wasn't internet where I was in jail at all, not in isolation.

I only got to make one phone call too I think it was, the whole time I was in cause of my brain issues!! (its amazing how much those can affect).

To be able to make a phone call out of the prison, you had to know the name, phone (and it may of been the address too) of the one you wanted to ring, you then gave this info to the prison officers who then sought permission for a call to be made. With my memory issues, I couldn't remember my friends last name, nor my married sisters name or addresses etc. I couldnt even ring my doctor as I couldnt remember her name (that would of been helpful esp since they didn't believe I was ill). So due to my memory issue I couldn't do calls.

I wasn't allowed to have paper and pen as I probably did remember namesa few times but then lost it from memory again as I couldn't write things when I remembered them down.

Every day when the head one did the rounds (at something like 7am).. that was your time to ask any questions, he he's ask how you were and then just something like "is there anything you'd like to say or questions?" and if not he'd just leave. I never got to ask anything as that time of the morning my brain certainly didn't work and not being able to have anything to write with.. I always forgot the urgent stuff which needed to be asked. This happened to me day after day.

So things like me asking "I need a social worker" I'd just forgot to ask... (and then feel very frustrated cause he'd gone and yet again I hadn't brought it up). Not being able to write things down when one has bad memory issues.. is very very bad. (no pencils, pens allowed in isolation).

When I was in prison, they sent me back to court weekly to ask me "will you accept the bail conditions yet?".. I don't think they really wanted me there (there wasn't even a good case as I hadn't done it, it did end up being thrown out of court). So when I finally decided I wanted out, I only had to wait for less then a week to go to court and say "yes" to their bail question. Interestingly on that last time, they'd removed the bail condition so obviously not was going to give me a chance to refuse it.

Of cause I'd be in a different situation if I actually did a crime and got found guilty. You'd have to just do the time given (so you'd want it to be a very small crime).

.............

jail or mental hospital ....especially now, ' they ' seem to love to get hold of ' one of us ' in a mental place, cause they now...have to so-rights's to experiment on us....

oh I forgot about the experimentation of mental places, that makes those places one bit even more scarier for a ME person. If deemed mentally ill, you can loose all your rights for medical says.. they could give you shock therapy! That would be one heck of an experiment on ME people, Im surprised they haven't tried this on us.

 

[taniaaust1]

The issue is if we need more care, we cant really move in with another who has ME/CFS as there is no way they would be up to giving us care. We can be hard work for even normal partners to be looking after.

 

[chipmunk1]

oh I forgot about the experimentation of mental places, that makes those places one bit even more scarier for a ME person. If deemed mentally ill, you can loose all your rights for medical says.. they could give you shock therapy! That would be one heck of an experiment on ME people, Im surprised they haven't tried this on us.

I am sure they tried it on some. You just didn't hear about it. It's very easy to try it on someone with ME.

1. Decide that they person doesn't have ME and is just depressed.
2. The person is depressed and thus lacking insight.
3. Antidepressants don't help. That means the depression must be very severe.
4. Shock them against their will.

here is what you can find on the net:

ECT = Electroconvulsive Therapy. My doc says it's showing promise with CFS sufferers. I have depression because of CFS. Anyone tried this?

http://www.godlikeproductions.com/forum1/message481880/pg1?disclaimer=1

Somatoform disorder

Michael Trimble, the British neuropsychiatrist at London's Institute of Neurology, offered a detailed history of hysteria in Somatoform Disorders: A Medicolegal Guide.2 Unexplained symptoms, inconsistent with known anatomy, physiology, or biology, have been a focus of medical practice for millennia. Belief in displaced uteri as the cause led to the term "hysteria." In the past century, psychodynamic and psychological principles redefined the syndromes as "somatoform" or "somatization" or "posttraumatic." "Hysteria" is now politically incorrect. Waves of classic hysteria are still frequent, however, in shell shock, chronic fatigue syndrome, and the Vietnam and Gulf War syndromes. In each instance, a physical explanation is sought, and when none is found, the psychological nature of the syndrome is emphasized. The illness is sustained by disability compensation. When the possibility of compensation is removed, the incidence of the illness goes down.2

Different expressions of hysteria are accepted in different social eras.16 The faints and "convulsions" of the Victorian era highlighted by the dramatic presentations of Charcot have become passé in the present era. We accept chronic fatigue syndrome, fibromyalgia, posttraumatic stress syndrome, pseudoseizures, and false memory syndrome as systemic disorders.

Complaints of persistent memory loss in otherwise well-functioning individuals after recovery from a psychiatric illness through ECT are best viewed as a conversion reaction or a somatoform disorder. The Camelford experience is a model for the complaints of ECT's profound personal memory losses.

http://www.psychiatrictimes.com/articles/camelford-hysteria-lesson-ect/page/0/2

The pathophysiology of fibromyalgia remains unknown. Several reports have recently suggested the novel concept that fibromyalgia is due to the central nervous system becoming hyper-responsive to a peripheral stimulus. The effect of electroconvulsive therapy (ECT) as pain remedication in cases of fibromyalgia without major depressive disorder was studied in a prospective trial lasting three months.

http://www.ncbi.nlm.nih.gov/pubmed/16495009

 

[taniaaust1]

I am sure they tried it on some. You just didn't hear about it. It's very easy to try it on someone with ME.

1. Decide that they person doesn't have ME and is just depressed.
2. The person is depressed and thus lacking insight.
3. Antidepressants don't help. That means the depression must be very severe.
4. Shock them against their will.

here is what you can find on the net:



http://www.godlikeproductions.com/forum1/message481880/pg1?disclaimer=1



http://www.psychiatrictimes.com/articles/camelford-hysteria-lesson-ect/page/0/2



http://www.ncbi.nlm.nih.gov/pubmed/16495009

I actually have once had shock treatment suggested to me. That happened when I choose to go to prison. I had to see the doctor there on admission (I suppose everyone does) and I told the doctor I had ME/CFS and was very depressed over my situation. At that point shock treatment did get suggested. I never saw that doctor again, next time I saw dr there it was a different one and obviously she had a bit more understanding that ME/CFS wasn't treated by shock treatment.

but having it actually suggested to me by a doctor was scary.

They are big on using that for various issues in my state of Australia. I've met 3 in person who have had had shock treatment, none of those had ME/CFS. One had hallucinations (it helped her), one had depression (it didnt help her and just left her with more issues), the other was given it wrongly and it left him with bad problems.

One who had been given it, they thought he was depressed but it turned out they were wrong and it turned out his problems were due to undiagnosed at that time Aspergers and it had left him with some fairly severe memory issues permanently which really distressed him as this guy was extremely intelligent with a very high IQ.

 

[taniaaust1]

Somatoform disorder Michael Trimble, the British neuropsychiatrist at London's Institute of Neurology, offered a detailed history of hysteria in Somatoform Disorders: A Medicolegal Guide.2 Unexplained symptoms, inconsistent with known anatomy, physiology, or biology, have been a focus of medical practice for millennia. Belief in displaced uteri as the cause led to the term "hysteria." In the past century, psychodynamic and psychological principles redefined the syndromes as "somatoform" or "somatization" or "posttraumatic." "Hysteria" is now politically incorrect. Waves of classic hysteria are still frequent, however, in shell shock, chronic fatigue syndrome, and the Vietnam and Gulf War syndromes. In each instance, a physical explanation is sought, and when none is found, the psychological nature of the syndrome is emphasized. The illness is sustained by disability compensation. When the possibility of compensation is removed, the incidence of the illness goes down.2

Different expressions of hysteria are accepted in different social eras.16 The faints and "convulsions" of the Victorian era highlighted by the dramatic presentations of Charcot have become passé in the present era. We accept chronic fatigue syndrome, fibromyalgia, posttraumatic stress syndrome, pseudoseizures, and false memory syndrome as systemic disorders.

Complaints of persistent memory loss in otherwise well-functioning individuals after recovery from a psychiatric illness through ECT are best viewed as a conversion reaction or a somatoform disorder. The Camelford experience is a model for the complaints of ECT's profound personal memory losses.

OMG.. so a person gets brain damaged or damage from ECT and then are told that damage is "somatoform disorder" .... ..


Thanks for sharing that chipmunk. One can easily see why those who have ME or CFS need to stay away from mental health places.

 

[jimells]

jim.....your thoughtfulness & compassion brought tears to me.....Yes ! there are Still peaple out there who care !!!! T U ....my day was rough & someone reaching out to me brought 'hope' .......I wouild love to talk to you, I have been thu a lot of trama these past 6 months....(no, I am NOT a drama queen however moving being this sick & not knowing a soul here + others little goodies, I would want to know you.........it looks like u are sick....are u isolated ?

Yes, I have been seriously incapacitated recently. Anyone coming here for any length of time would have to be self-sufficient for daily care.

This is not an easy place to live. After a dozen years of illness I have come to the conclusion there is not a single doctor in the entire state that knows anything at all about this illness or is interested in finding out. Of course, that is hardly unique to Maine. The doctors here are very provincial - many of them have refused to accept me as a patient, because they won't treat people with chronic pain - after all, *everyone knows* chronic pain patients are all drug addicts. liars, and malingerers.

Like most (all?) rural areas in the US, the population is shrinking and the economy has been wrecked by the greed of our rulers. They don't seem to understand that cities don't have resources other than lots of labor and water polluted by upstream users. Apparently food, fiber, minerals, and energy show up in the cities by magic - no rural people required.

The climate is quite severe. This past winter we received twelve feet of snow - only about two feet above normal. It was cold, too. The temperature was below zero (Fahrenheit!) twenty-four nights in February. Even the septic froze up for two months - fortunately I have an outhouse, in case of extended power outage, so it was inconvenient but not a catastrophe.

Some people say we have eleven months of winter and one month of damn poor sledding (as in snowmobiles). But that's wrong. We actually have three seasons: snow, mud, and flies.

In spite of the hardships there's no place else I'd rather live - and I've lived in quite a few places. I'd rather be dead than be homebound in some crummy apartment with a view of other crummy apartments. I can't spend much time outdoors anymore, but I can see it well enough from the windows. I can still feed the outdoor birds and talk to the squirrels living in my shed (they are quite tame).

I've always been a loner and a misfit, so living here alone doesn't bother me much. It's certainly preferable to endless "family drama" - I just don't have the strength to deal with that stuff anymore. I worked really hard to have an inexpensive, decent place to live - way too hard for just one person to live here alone. And yet, more than five years after my partner walked out (I came home from work to find a Dear John letter) I have little to no desire to attempt to find another partner, or even go on a date - that would take way more effort than I can muster.

Anyone (even a well person) contemplating a move to this area would need to spend time here before making a decision. A one-way trip with no backup plan would be a bad idea. So while my offer to park your RV here is genuine, in all honesty, it's hard for me to imagine that it could work. Of course, it's also hard for me to imagine doing anything beyond eating today and maybe taking a shower tomorrow...

 

[chipmunk1]

OMG.. so a person gets brain damaged or damage from ECT and then are told that damage is "somatoform disorder" .... ..
.

and the evidence for this: The camelford incident where people got brain damage from aluminum and Wesseley said it was just somatoform disorder or mass hysteria.

and CBT benefits are of course never due to placebo effects or suggestion.