The Desiderata

A forum to talk about the general challenges of daily life with MS.

The Desiderata

Postby Loobie » Sat Oct 20, 2007 7:31 am

I was walking around Halloween shopping with my family when I came across this prose taped to the bathroom wall of a used bookstore we were perusing. It's amazing where you find inspiriation. I was in a major funk because I was realizing how hard shopping has become for me. There have to be bathrooms close by, my legs just can't take it, and if it's a crowded store, I can't move around well at all (you all know the drill). Anyway, I wanted to post it because it's the best thing I think I've ever read in terms of encompassing a "life view". It may have been posted here before, but I haven't seen it. Here it is:

Desiderata

Go placidly amid the noise and haste,
and remember what peace there may be in silence.
As far as possible without surrender
be on good terms with all persons.
Speak your truth quietly and clearly;
and listen to others,
even the dull and the ignorant;
they too have their story.

Avoid loud and aggressive persons,
they are vexations to the spirit.
If you compare yourself with others,
you may become vain and bitter;
for always there will be greater and lesser persons than yourself.
Enjoy your achievements as well as your plans.


Keep interested in your own career, however humble;
it is a real possession in the changing fortunes of time.
Exercise caution in your business affairs;
for the world is full of trickery.
But let this not blind you to what virtue there is;
many persons strive for high ideals;
and everywhere life is full of heroism.


Be yourself.
Especially, do not feign affection.
Neither be cynical about love;
for in the face of all aridity and disenchantment
it is as perennial as the grass.


Take kindly the counsel of the years,
gracefully surrendering the things of youth.
Nurture strength of spirit to shield you in sudden misfortune.
But do not distress yourself with dark imaginings.
Many fears are born of fatigue and loneliness.
Beyond a wholesome discipline,
be gentle with yourself.


You are a child of the universe,
no less than the trees and the stars;
you have a right to be here.
And whether or not it is clear to you,
no doubt the universe is unfolding as it should.


Therefore be at peace with God,
whatever you conceive Him to be,
and whatever your labors and aspirations,
in the noisy confusion of life keep peace with your soul.


With all its sham, drudgery, and broken dreams,
it is still a beautiful world.
Be cheerful.
Strive to be happy.



Loob
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Postby AllyB » Sat Oct 20, 2007 1:47 pm

Hey Lew

I loved this, it is very touching and inspirational. "...strive to be happy." Sometimes, you do have to strive, but happiness is possible.
Thanks for posting it.

p.s.
BTW, have you tried baclophen? I started taking it recently for spasticity, and as an added bonus it seems to help me with emptying my bladder (I have a neurogenic bladder with retention and great difficulty emptying my bladder). I don't know how it works (don't guess it is meant to help this), but it seems to help relax my bladder somehow, also my doc gave me a Rx for a drug called Flomax (here that is it's name) to also help - it is maiinly for men with prostatic hypertrophy which causes difficulty voiding, but I haven't tried it yet as the baclophen seems to do the trick...Just thought I would mention that, don't know if it will help.

Take care & thanks again.
Al
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Postby Loobie » Sun Oct 21, 2007 6:32 am

Hey Ally,

I have tried Flomax. I can't stand that stuff. I'm sure you won't have all the side effects I had from it, but the big one for me was dizziness and I already have that bad and I just couldn't take it. It didn't help me void at all either. Let me just say that those commercials where they talk about the sexual side effects aren't kidding. Nothing drastic, but that stuff gave a whole new meaning to the term shooting blanks. Probably TMI, so I'll leave it right there.

My bladder is so bad, but I still have not started cathing or taking an anticholinergic. I just hope and pray that there may be some slight repair if the Tovaxin keeps the disease down that I don't want to harm anything. If it doesn't, I will start IC'ing. My thing is called detrussor sphincter dissynergy which is basically the voiding musle and opening muscle not working in concert, so maybe the baclophen would help. I'll ask my neuro. about it. I am just so leery about any new meds since my dizziness is so bad. It seems that every damn drug has dizziness as a side effect and I simply won't be able to function at work if I'm any dizzier. I'm so dizzy I have to force feed myself lunch pretty much daily. I've learned to get through it, but keeping the calorie count up has become a challenge from the lack of hunger from the dizziness. After it gets dark and I smoke a little bit, my dizziness subsides and I absolutely pig out. If it weren't for MJ, I would probably be wasting away right now due to lack of appetite.
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Postby mom10789 » Sun Oct 21, 2007 8:00 am

what about SERC for the dizziness
could you try botox for you bladder
not sure if it works for everyone but it really works for some
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Postby Loobie » Sun Oct 21, 2007 8:40 am

I discussed Botox for my bladder with my urologist. He says it is used for Over Active Bladder, which is not what I have. He thinks Botox would be counterproductive for me since it mainly relaxes the detrussor muscle and helps with OAB. Since my detrussor isn't over active, just not "in tune" with the urethral sphincter, I think he thinks it may lock me up. I don't know what SERC is. If it's another name for Antivert, I have tried that (my Mom had some) and it does help, but I can't take it at work since I got so tired from it.
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Postby mom10789 » Sun Oct 21, 2007 9:05 am

i'm sorry about the botox
i'll try to find out more about SERC
i know you can't get it in US
it doesn't make you sleepy
i have a chiropacter that helped with my vertigo
he used an activator and touch something behind my ear
he saved my life
i think acupunture probably works the same way
good luck
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Postby AllyB » Sun Oct 21, 2007 1:48 pm

Hey Lew

I hope you don't mind, but I did a little research, based on your prevalent symptoms, to see if there were any other avenues to explore. I am sure you have done this exhaustively, but I just wanted to see if there was anything you could safely try that might make life a little easier for you :)

I have not tried the flowmax and I don't think I will mainly because of all the side effects, especially on top of all the other crap I take....

The baclophen probably won't actually make the bladder muscle and the sphincter work in unison, but it will make the bladder muscle less hyperreflexic (make it relax more) which will reduce the pressure in the bladder caused by excess muscle contraction, which may make the dyssynergy less extreme and the sphincter more able to relax too, at the right time. If you have some intermittent incontinence caused by the high pressure in your bladder, this might also be helped. I am no expert though, this is just based on my own experience of the drug, which I initially took for a completely different reason.

I have found that while I still battle to get going and have to push a bit, once I start, the flow is much stronger and better - not so much "starts" and "stops" and dribbles!. Baclophen can worsen fatigue, and it gives me a headache, but no vertigo.

I can only imagine how debilitating that must be for you - I have only had vertigo a couple of times for just a few days, and it is really awful. An added benefit of baclophen is that it may help you with the vertigo - I did some research on vertigo, and attach the url for you to read (you have probably seen it before), and towards the bottom, it mentions baclophen as a possiblity in treating vertigo.

[url]http://www.dizziness-and-hearing.com/treatment/drugrx.html
[/url]

There are also listed many other possible treatments for vertigo for you to discuss with your doctor. BTW, I had serious problems with anticholinergics - they worsened my urinary retention, and made it almost impossible to pee - this may not happen to you, but just be on the lookout for it if you decide to take any - it reverses in a few hours of stopping the drug, so no big deal.

Whilst I fully understand your not wanting to mess with the trial, I think that maybe you can get some measure of relief from your symptoms while you wait, so that you can still get some enjoyment from your life :wink:

Maybe if you find something to help, but it makes you more tired, you could ask your employer (just for a couple of months) if you could just work a 5 or 6 hour day (no lunch break) or do a coupleof hours from home via your PC - if it's for a short duration, most employers would consider it, and hopefully, once the Tovaxin gets working, you can up your hours again. Maybe work 8-2 then go home and nap, then work from home from 4-6, or something?

But life is hard right now for you, and I would love it if something could be done to improve it. Is the Sativex spray avaiable in the US? It is not available where I live, but I believe you can get it in Canada - and that might help you too.
Any way, I hope you don't mind me butting in, and I hope you get some relief soon.

Take care
Al
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Postby mom10789 » Sun Oct 21, 2007 2:30 pm

i forgot about sativex
it does help
buy i think you are right, only in CANADA AND UK
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Postby Loobie » Mon Oct 22, 2007 3:43 am

I know Sativex is not available over here right now, and may not be for some time with our political climate over here. However, I do smoke MJ and it does help my bladder.
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