Dave y Needs a Break from Stress

Highlights Only
E

EyeoftheWild

Well-known member
Dave y, you are in definite need of a break. The above post is full of angst, and probably does more harm than good. Why do some find it so difficult to be positive? I can imagine the panic in someones voice as they say, "can others see it," etc. To a person already on edge it will only further their consternation.

In Dave y case, I know he means well, and is as smart as hell, but he is also full of fear. He knows more than I will ever know, or care to know about emg's, and other such tests and diseases. How has that helped him...well, it hasn't really.

If I may use Bill as an example. He often gave out words of wisdom, and the same kind of very useful information that Dave y so generously gives out; and no, I'm not being facetious. However, in Bill's case, it was couched in a kind of softness, that I don't think ever alarmed.

How many people have had perceived speech problems with other odd sx on this forum. Many, and there are new ones everyday. Has anyone of them come back and said, "Oh crap I've got a nasty disease...NO, they haven't."

What use is it to post to someone words of caution, and filled with fear, and then not a minute later post on a new thread of how one must leave the forum, because it is exacerbating their own health anxiety? I'm guessing none.

Do I think that it is possible for people who are still in health flux to help others, yes, of course I do. I am only pointing out the obvious contradiction that can be inherent in such helping. For this reason careful consideration must be given, to whether a post is alarmist or not. We must ask, am I giving out helpful information and sharing a shared experience, or is the pervading emotion just conveying my own personal fear?

If we believe in our wellness then we have a golden opportunity to embrace our health, and then the unspeakable joy in the process. It does no harm....which is after all, the credo of the physician.

Cheers,
Basso
 
Geez Basso,

Lay off the Valium for a bit. Facial paralysis is not something ignore. It can be caused by such things as strokes and tumors, among other things, both of which can happen at any age. Do you really think if someone called a doctor saying part of their face is drooping they would be told "don't worry, be happy!"? Having had a family member recently who had stroke, with some facial paralysis (droopy left side), I can tell you from experience they tell you to waste no time in getting it checked out.

No, I don't live in Lollipop land. Bad things do happen sometimes. If I would have followed your advice in my own past I'd be dead twice over.

p.s. now I'm really really taking time off. just had something to finish up with and felt compelled to reply to this...
 
Marty,
Didn't you say you'd been examined by your doctor a few times and nothing has been found wrong?

I think the key here is whether your face is, in fact drooping or if this is something you are perceiving from hyper-fixating on yourself.

At one time I was quite convinced my eyelid was drooping as well as my mouth on one side, but when I smiled, raised my eyebrows or gave someone the raspberry, :p my face was perfectly symmetrical.

Has anyone else noticed it? The facial drooping associated with anything serious would be noticeable, not subtle.

I think it is easy to get an alarmist attitude when you are already feeling the strangeness of bfs, and our beloved EyeoftheWild is trying to prevent you from freaking out about something that is probably nothing.

We always hear folks tell us "listen to your body, you should know if there is something wrong, yada yada yada." But let me tell you, if your "body" is lying to you and telling you that you have an incurable disease when you DON'T, you ought NOT be listening to it.

I was SO convinced I had ms once that I wouldn't get out of bed in the morning, AND I developed many of the symptoms of it in a relatively short period of time. Four months of my life were wasted, going from specialist to specialist, test to test, and I could not be convinced that I was fine.

On this board, we see much more of this insanity than we do legitimate life-threatening illnesses, and so, while EyeoftheWild's advice may seem dismissive and casual to some, (or should I say, 'one') those of us who know his kind heart appreciate his perspective and wisdom. He has helped many of us with his special "kick in the tookus" approach.

If you need to see a doctor, do what you have to do, but if he/she tells you that you are fine, please believe him/her.

Blessings,
Sue
 
I have to totally agree with Dave-y on this one. If other people can see what you're describing you need to see a doctor. Apart from autoimmune PNH the other clinic my neuro runs is for MG. Two of the symptoms are drooping eyes and a difficulty in pursing the lips. You should get yourself checked. These are not scare tactics just common sense advice as not everything in the garden comes up smelling of roses.

How does a 3 year old child who has our symptoms (I was contacted by his mother) embrace his health in an effort to feel unspeakable joy.

I think it's time I followed Dave's example and leave in case I am accused of doing more harm than good, that way people can get on with the more saccharine approach.
 
I have to totally agree with LisaLM agreeing with me on this one. LOL

If one reads something, whether it be an internet posting or a book, it is read through the filter of their own experience; and hence their own bias. Our fellow bfser Marty has already seen a doctor, and has further appointments scheduled, so he hardly needs us exhorting him to do what he is already doing. Before I post to a person with whom I am unfamiliar, I always read their previous posts. This way I have assurance that my advice, meagre though it is, hits closer to the heart of the issue.

To point out scenarios of people falling ill, even if it is first hand, is simply scare mongering. I repeat, Marty has already seen a doctor and is going again. He also has done himself the disfavour of googling his perceived sx; and thus he hardly needs a "worst case scenario." He is already scared shytless. We must strive to bridge the gap between our own biases and helping.

For those of you who are so terrified of being part of that infintisimal percentage, one of the "unlucky ones ," how many people on this forum have come down with ALS: answer: none, and with MS, none, and with MG, well, that would be none as well.

Before one trumpets out stats of this and that, they should peel back the fearful or bitter cataracts of their own view on life, and they will see, with this new vision, a life eminently worth living. If sweetness helps to guide people to the miracle of their own life, then what I ask you, could be wrong with that?

Cheers,
Basso
 
Steve-Paul,

Have not seen you around these parts for a while, I am sorry to see you stop in and leave again.

Wow...everytime I don't look at the board for a day...stuff like this sneaks in!!

I certainly do not think of Basso, as the leader of lollipop land..or whatever he is being accused of here. He, and Suzi are two peple that I am proud to call my friends, who have done more good on this forum than almost anybody. The advice that Basso is giving you is real, from his mind, and heart. He knows all too well what kind of tricks the mind can play on the body. He, she, we all lived it. We are trying to spare you the pain of going through what we all took lots of time to go through. Everyone is on here to share advice, and to give encouragement. Having gone through the scare myself, I feel almost manic about helping the peole who are in pain here now. If I can spare someone what I went through for NOTHING...I will be very happy. I know that is how they feel.

That being said, you should for sure go to the Dr., you should be completey checked out for everything that is ailing you. Sure, things do happen...lots of things. If they didn't hypochondriac's like myself would live a much better life. BUT...you wandered into ABOUTBFS, where we have symptoms of bfs...a shi**y, but benign thing. Most of us would figure you are frightened like the rest of us, and will follow the same course of fear, and peace that most of us do.

I do feel that you are well...and hope that you get reassurance from your Doctor soon.

Dave..I see how having a family member who had a stroke can be frightening. My Father had a stroke, and it affected his speech. He made his living with words, and he was brilliant. It robbed him of so much. I would never think of making light of it, believe me. But based on what Mart has been saying on other posts..I just don't think so.
But Dave... what is wrong with being positive? Where will the opposite ever get you?


And I am a New York girl so do not attack my friends...or you will have to mess with me!

ristinaL91
 
If we're taking sides here ( :) ) I think it's worth reading through mart_mcg's original post on this site to see their health anxiety is (self confessed) off the scale. I would therefore assume that the current symptoms are due to an over fixation, but of course go and see the doctor and get it checked out, just for peace of mind, it would be daft not to.

As for the sugar coating I think that's the best way to take your medicine isn't it? When I found this site I was lucky to find Basso with his bowl of sugar, I needed calming down rather than having three colours of sh*te scared out of me :)
 
Hi ristinaL91,

I've not been around much as there has not been many posts that have interested me and I found myself reeling out the same replies. It was only when I saw Marty use the word "distinct" in his post that prompted me to reply. If he had used the word "perceived" then I wouldn't have bothered.

To all

Now unless these two words have the same meaning (and no doubt someone will tell me) then he should see his GP. and the sooner the better if, as he says, this facial droopiness is distinct.

I'm not a mind reader and neither would I presume to know which word he intended to write so you can only advise based on the word he used. Marty posed a question to which he received various replies some of which where thought to be irresponsible. Personally I'm bewildered that someone who says he has "distinct "droopiness in their face muscles is to be kept wrapped in cotton wool and think happy thoughts, it seems to me that some are becoming detached from real life. Marty brought up the subject of MG and some of us replied pointing out that what he described is symptomatic of this disorder. Now you can dress it up any way you like but it doesn't alter this fact or make it go away and I wouldn't be hanging around waiting for my next Dr's appointment.

I'm lucky, I've never had the ALS, MS or MG scare, my approach was with rational thinking and when it's applied to the symptoms of BFS it's not difficult to rule out what applies to you. I've never been one to mock a mans religion but as with any form of treatment not everyone wants it rammed down their throat.

Morris_M I'm happy for you.

ristinaL91, I'm sorry to leave especially as you've enabled me to put a face to your name, but I wish you all the best and take care.
 
Hey, gee...has anyone seen Mart anywhere?

I mean, do we even know if he's okay, because if I were him I'd be feeling a little disenfranchised just about now.

I feel as though I'm watching a cyber soap opera, and all the characters are stomping out of the room and slamming the door. In the meantime, we have Mart, who could give a rat's azz about this one or that one's knowledge and experience. He came here for reassurance, comfort, suggestions and help, and he got some of that but perhaps a whole lot more than he bargained for.

So...might we perhaps turn our hearts and attention back to our friend and fellow sufferer and leave the rest of the minutiae behind?

Mart, how ARE you feeling today?

Blessings,
Sue
 
Freaking awesome Marty, great to see you are on the up and up and up and away. Keep off the other sites, and if you have time between swinging the world by the tail and kissing your girl, let us know how everything is going otherwise. Nineteen year olds, such as yourself, don't stop by here for long...they have better things to do with their time. LOL That is the way it should be. Through your posts you have shown you are a very intelligent young man, your future looks long and bright.

Cheers,
Basso
 
I thought that this was the "Support Group". That would tell me to come here for "support". What Basso did is not sugarcoating, it is "support".

Basso,
Whatever you do, do not try to make someone feel better, or you'll get called out for it. :rolleyes:

Mart,
Great to hear you are feeling better! Now stay on that path.

Why did this forum become so controversial. How come so many threads are becoming forums for people to argue. I thought it was here mostly to help people "cope" with this syndrome, not to argue our own medical thoughts, our morals, and our ethics.

Sounds corney (spelling) and I know it is a cliche, but if you don't have something nice to say, just don't say it. It is one thing if you're just trying to give advice, but there are certain ways of doing so.

Stevepaul,
Not calling you out, because you have given so much to this board, just saying I think Basso's intentions were good and well thought out.
 
Ahhh ristinaL91- Italiano? Tu mi fai squagliare come neve al sole :D)

Sorry Mart, hijacking your thread again. Good luck at the doctors, I'm sure you will be just fine :)
 
Oh il bambino, come lei parla !! Che la cosa dolce di dire.



Morris_M, I hope I read that right, lol!!! I'm working on some very limited Italian spoken with my Grandparents (dialect) and college Italian...so I hope I read that right :rolleyes:

ristinaL91
 
Spaghetti, pasta, pizza, forget about it, gravy (not red sauce), the two yutes. Just figured I would add to this Italian talk.
 
il mio cervello lavora troppo duro! ma i ringaziamenti sono troppo dolce. Devo ritorne agli inglesi...I'm a little better at it ( a little!)


ristinaL91
 
Oh good God Morris_M...what the heck am I saying, lol !!....If I am going to have to talk Italian, I am going to need some help, I thought I was saying one thing...but maybe I'm putting hits out on people?????

I will be sticking to English from now on....mi dispiace.

ristinaL91
 

Users who are viewing this thread

Total: 1 (members: 0, guests: 1)
Back
Top