Whitney Dafoe Updates

MSEsperanza said:
Probably due to your browser settings that don't let your browser show embedded social media posts?
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I can see public Twitter posts, and I can get a link which allows me to see Instagram posts on a new tab, but facebook links just don't exist for me on this forum - they just show a blank post.

But I could see your facebook link when I opened it on another tab, thank you.
 
Perrier said:
I also just read dear Whitney's piece. I became weakened, devastated and crushed as I once again faced the reality of what living with this hell is like.
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Just a word of support for you, @Perrier. I often think of the sadness and horror faced by those who love someone with ME. For sure, it's not just the ill one who suffers, but anyone who loves them, too. :hug::hug::hug:
 
Trish said:
I have no idea what Whitney means by that statement, but if it makes him and others feel good saying it, that's fine. I wish him well.
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I'm sorry Trish, I don't understand what you are trying to say? Your comment has a very dismissive feel to me, but maybe I'm reading it wrong?

Whitney's message resonated very deeply with me, actually. That's why I shared it here.

The sentiment feels very life-affirming and empowering to me. To me it's about standing up (sorry for the poor choice of words) for ourselves and our rights as human beings and patients. Refusing to accept the abuse, the neglect, the harms, the discrimination etc. Taking a stand against the fact that society couldn't care less about how badly we are treated, couldn't care less if we all died today. Resistance by existence; our mere existence is a form of political resistance.

A confirmation of the fact that resistance can come in all shapes and forms, and that it matters. We matter.

ETA: To me it has the same kind of energy as Jennie Spotila's message "Be gloriously, defiantly noncompliant. Speak truth to power.", "Be brave. Be noncompliant." Which I also love.
 
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Without pretending to know exactly what he meant, I simply understood the sentence as : the daily courage shown by the pwme, which in the worst moments or states is pure survival, is an act of protest against the disease... a perseverance in hoping that science will one day find a cure for ME.
Or maybe I'm wrong.
 
Jaybee00 said:
Sort of a depressing update here—seems like he has become tolerant to Abilify (i.e. it stopped working for him).

https://www.facebook.com/1123385636...LLtTUWSMbWUaFVtDDWvQabjqAJ8T7wS1xydKqj3l/?d=n
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As expected, unfortunately. I do not know if developing tolerance to psych drugs is more common in ME patients relatively to the general population, but I have had the same experience with benzodiazepines.

I hope that he does not start having withdrawal symptoms, in which case he would be forced to taper off of Abilify (which would very likely be devastating for his health).

It is indeed endlessly frustrating to think about all these things we would love to do all day long while being bedridden and sometimes blindfolded, but can’t.
 
My family has lots of experience with mental health drugs. As I write this, I have several family members under the care of psychiatrists and others are in therapy. One of my relatives took full strength Aripiprazole for bipolar 1. It stopped working for him.

I've taken the drugs myself and I've went to therapy. I no longer need therapy and I'm drug free. Hooray! Here's my opinion. The drugs that take weeks for the effect to begin are working downstream of the problem. The longer it takes for the drug to begin the farther it is downstream.

Greater compatibility with a person's body means better effectiveness and the longer a drug will last. Sometimes a person can get years before the effectiveness diminishes.

When the drugs start producing weight loss and/or sleeplessness that's a sign the drug's compatibility is diminishing. Increasing the dosage delays the loss. (Increasing the dosage can lead to addiction, yes even drugs psychiatrists say aren't additive.) Jumping from one drug to another also delays the loss of effectiveness.

The drugs produce withdrawal when stopped. The longer the drugs are taken the greater the withdrawal when stopped. Taking stimulates and/or sleep aids to stay on the drugs makes the withdrawal worse. Being stubborn and staying on the drugs anyway, produces severe side effects in the end.

The withdrawal can be brutal. I've done it myself and watched family members endure it. 0-10, do not recommend. It's better to stop the drugs using medication than cold turkey.

It's best to never start taking them.

Whitney has the most expensive experts in the US, I hope they can find him a good solution.
 
Trish said:
Perhaps, given Whitney's very severe ME he is reminding us that his illness is not invisible. One look at the pictures of him now show he's a very sick man.

Maybe 'hidden' would be a more appropriate word for those who are severely ill, since those of us stuck at home all the time are rarely seen by others, and can therefore be ignored and forgotten and the majority of the population are unaware of our existence.

For those with less severe ME, invisible might be a good word because when ME is milder we don't necessarily look ill. The person is visible, the illness is not.

In terms of advocacy, I think both hidden and invisible can be useful terms.
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I think the splitting of the spectrum was the most important move BPS did. Mild they call invisible but really it’s ‘don’t acknowledge’ the symptoms from certain things as they ‘aren’t that bad to be obvious’ - people got away with that for years when I was moderate even tho I know that they must have seen it wasn’t in their interest then they didn’t

severe and very severe they think ‘it can’t get that bad’. Because of the lies they tell themselves about the consequences of what they do to those who are moderate and mild.

apart from getting shot of old physios and staff who make it clear they won’t change and don’t have the personal qualities to respect the patient and create a safe space for them to communicate limits. The most important thing I think is that a medic is required to ‘take ownership’ of ‘a patient’ over a lifetime and to monitor stages and report on them as happens with any other disease. And that includes deaths.

invisible probably is wholly inaccurate and it is more important to get across facts on what is present eg PEM and the whole scale and progrsssion. Do people call mild MS invisible because I think of MS based on whatever I’ve seen which had some pretty debilitated people.


It’s an interesting note to be debating and nuance is marketing and messaging - so v important to get right
 
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