Well meaning friends!

[Jacksmom516]

I have been receiving an abundance of e-mails about aspertame poisoning and how I DO not have MS but need to stop drinking the two diet sodas I drink a week and all these symptoms will go away.   Little do they realize how much both myself and all of us with this disease wish it were that simple!  I said something to one of them that I am closest to and got the reply well if you do not want to help yourself?!?!?  So I promised to ask my neuro on Wednesday since I have an appointment already scheduled.  

Love them but this isn't the kind of support I need

[rendean]

Have heard all the "cures and causes" from friends and family. I personally will be mentally replaying Jane's comment from now on. Thanks Jane!!!!

ren

[doublevision1]

Over the years I've received various versions of the aspartame email.  A friend is convinced that yoga will cure me.  A relative is convinced I got MS from living near the oil sands industry and that my health would improve if only I moved.  Now that I actually am moving, will be interesting to see what she thinks when I'm not cured.  An acquaintance recently urged me to try 'reconnective healing' telling me that my disease has taught me all the lessons it came to teach me, and I just need to say goodbye to it and it will leave.  Seriously.  I just don't have it in me to thank them graciously for their input and 'concern.'  I challenge their simplistic notions, and try to educate.  The ones that are truly concerned are truly curious and interested in learning and understanding.  In my view, those who aren't truly interested, aren't all that concerned.  Oh well.  

[dogmum]

I'm still relatively new to this, but I'm already getting tired of getting told how to cure myself.  I read a short little book on kindle just yesterday that sums everything up pretty well and I wished I could get a few people specifically to read it.  It's called "The Dumbest Things Smart People Say to Folks with MS".  

Needless to say, I had a good laugh/groan.  I guess unless it's happened to you personally, other people just can't understand.  Feeling thankful for the internet!

[Lulu54]

I would be happy to give up aspartame if I ate/drank any.  I would also be willing to ingest round worms (at least a few) or subject myself to bee stings if either of those were proven cures.  Until the science backs the ideas, I will stick with the doctor's plan and smile and thank those people who insist on offering treatment ideas.

This was a great thread to read.

[Jacksmom516]

LMAO  Thank you!  Was off line all weekend and just read these!  That is an awesome response.

Thanks to all for your input and I am taking it to heart.  When someone suggests something like this I am just going to say thank you and that I will discuss with my Dr.  The easiest way to handle -  

Hugs to all!
Tracy

[doublevision1]

haha, great answer, Jane!  Love that.

[JaneK1975]

Sometimes you just gotta ignore the dipshits, T. You're smart. You know how to take care of yourself. End of story.

Hugs,
Jane

[candy158]

Grammalaurie, you are like talking my whole story.   This is to weird that you have dealt with the same kinds of issues.  Everyone`s has had or is having people tell them what to do, and not to do.  I have had the same things.  I have lost friends over this, and I still , hang on.  

That is what we all need to do, hang on. !!!  No one told us this would be a smooth ride, and we can all attest to the fact that they are right.

Praying too,
Candy

[HVAC]

My best friend latches on to this stuff. She wanted me to eat round worms once. Now she has a rife machine that kills all diseases. The AMA ad FDA do not like it because it would put all doctors out of business. WE can't have that. Now her kick is I actually have LYME not MS. I just agree to disagree. I tell her thanks but no thanks and I love her for caring.

When you get cancer everyone has to put their two cents in on how to beat it and why you got it. I had someone tell me I deserved Cancer because of my eating habits in college. This person is a fat alcoholic.

I take the intent of the comment. If it is out of true ignorance but with kindness, If not I tell the person to mind there own business.

Alex

[vwick77]

Don't pay attention !  These things go around ALL THE TIME on it effecting disorders or diseases.

Yes, I agree that Aspartame is NOT good for you and no one should be putting artificial anything into their bodies but some of these go beyond.  

I myself eat all natural and Organically!  I don't touch any of those types of perservatives or ingrediants yet I have been having problems and a probable diagnosis of MS.  

I believe these ingrediants can contribute to having side effects to that specific substance and causing flare ups in symptoms.  

This isn't the support your looking for,  try to block it!

Wellness to you
Valarie

[LilMinnie]

Excellent point! As a good friend once told me... Less is more.

[PastorDan]

My first class in ministry was Pastoral Counseling (long story why that's the case).  One of the first things we learned was to ask people how they felt, and after they replied, "Fine," ask them, "Okay, how are you, REALLY?"

Also, it was noted that Job's friends were pretty good counselors for the first week -- while they sat with him in silence.  They only got in too deep once they opened their mouths and spoke.

[byyygrace]

My church family does pray for me, but like you-they don't understand or know what to say or do when "I look so good"! I guess that's one thing to be thankful for, hehe!

[LilMinnie]

My daughter told me about the aspartame. I agree it is annoying, but I know she loves me and cares about me and just wants me to get better.

I don't drink diet drinks, actually never have. Mostly drink water, and Poweraide Zero here and there. I don't know if it has aspartame or not, but I don't think I drink it enough to matter.

I guess I am glad my daughter takes my health seriously and wants to help, even if it is a bit misguided :)

[grandmalaurie59]

I am sorry you are going through this Colin. I unfortunately KNOW how you feel.

I have been a Christian since 1980. I had my first attack in 1993. I remember the days when my fellow church members (most not all) would think I was faithless, being punished for sin, living/eating wrong, or just stressed.

Now, with my symptoms returning after almost 20 years....not much have changed. I go to a different church now. The people are wonderful. But again Most do not want to hear your "complaints". Even Christian people don't know how to handle a chronic illness....

The flu, broken leg, surgery, pneumonia, even cancer is easier for people to 'pray' for. They can "see" the disease and it can go away with 'prayer and treatment'.

Because I usually "look" good. They don't take me seriously and when I did "complain" they would say...yea I feel like that or you just need more rest...or you look good now....ect...I have learned that the ONLY people who truely understand are other people with MS. period.

It gets VERY lonely sometimes, especially when I am with my friends, family and church people. No one can really understand. I am still trying to except that. It is very hard. I know all these people love me. They just don't know the "right" things to say to show me love and compassion WITHOUT the advice and remedies.

I believe you have come to the right place for support for your MS. I am sorry about your church, they should at LEAST take your prayer requests and pray for you no matter what they might think!

Prayers,
Laurie

[byyygrace]

Hi, I had a friend just last week send me a link on that! Actually, I didn't read it. I emailed her back and thanked her for thinking of me and told her that "fortunately or unfortunately, I'm not sure which-but I don't consume "diet" anything!

I'm often told of things that if I would just try them, all of my problems would end!

These don't bother me that much but there's another one that does! I have become increasingly isolated from my church family this past year and that really saddens me. If someone ask how I am and answer anything but, "fine" or "blessed", I am immediately shut down and told that I'll be prayed for or to not speak "like that!".

I absolutely know that God's will is healing and He's not holding out on me and I believe His healing power is working in my body now. The fact is I have MS and all that comes with it. The truth of God's word changes facts. I am waiting for that manifestation but until then it certainly would be nice to not be treated as if I'm a faithless hypochondriac!

I so appreciate this forum where you all "get it"!

Thanks!
Colin

[essdipity]

This one is quite old but makes the email rounds periodically. If you check snopes.com, that debunker of urban legends, you will find ample evidence that the aspartame thing is totally wrong.

However, many people don't want proof that their beliefs have no basis in fact. There are other claims that this, that and the other diet or treatment will cure MS. It's difficult when friends who may mean well hang onto such ideas and then imply you don't want to be better when you don't buy into them too.

The only thing to do is to thank them for their concern and assure them that you continue to do everything scientifically possible to improve your outlook. If they protest, repeat statement as needed. Just ignore what you can't control, to the extent you can, but above all don't let this kind of thing get to you.

Good luck with this.

ess