Re: others reactions

[Guest guest]

I'm sorry this happened to you Jayme. I can't even wrap my mind

around why a parent would act like this. I'm glad you realize that

she has the problem, not you. Maybe things will get better. I hope

so. It was my mom who made me finally go to the neurologist for a

diagnosis and she's been active in my rehabilitation ever since.

Moderator

>

> I was diagnosed with MS six weeks ago. I told my mother in an

email, and she

> has totaly shut me out of her life ever since. I know she would

rather

> pretend MS doesn't exist, and in order to do that, I can't exist

either.

> This has hurt me to the core, but I know it's about her, not me.

>

> My question is this -- what kind of reactions did you get when you

told

> others about your diagnosis? I guess I want to know what

a " normal " reaction

> is. I don't think my mother's reaction was a common one, but I may

be wrong.

> That's what I want to know.

>

> Thanks,

> Jayme

>

> My MS blog:

> http://raynesworld.blogspot.com/

>

[Guest guest]

You are right, . It is fear. She is overwhelmed by it, and this is how

she handles fear. She walks away and doesn't look back. She's done this in

the past, but we have been forming a wonderful relationship the last five

years. I really thought she had changed. This is a disappointment more than

anything. But she is who she is, and she's not going to change. (obviously)

When I told her, I also gave her some positive links to learn about MS, but

no response. Finally, I wrote to her again to tell her that if she is

interested in my life at all, here's my blog address. Then I just quit

writing to her. I don't expect anything of her, not anymore. I never really

expected support from her, just maybe an acknowledgment that I still exist.

But nothing. Her fear must be huge.

So yes, I am getting support from my friends and other family members, and

it's totally sufficient. I love this group, too. It's my favorite! I

appreciate the support here more than you know.

Jayme

Re: others reactions

> Hi Jayme,

>

> My mom was always worried about me and encouraging me to seek help. I

> have talked with many others who have MS and other illness, the one

> common reason why spouses or loved ones act this way is fear. They are

> too afraid to face the whole thing head on. Men are usually the ones

> that act this way cause they like to fix things and when someone is

> sick, they cannot fix it. I think educating her is the best thing you

> could do. Send her positive info from this forum, let her know that the

> disease is real but that it does not mean you have to end up in a

> wheelchair. Think of it like a death, and people all mourn differently,

> some get angry first, some go into denial, some get busy, etc., In your

> moms mind with what little she probably knows about MS, she is thinking

> everything will now be differnt and that change scares her. Your mom

> probably needs some time to think about things and will come around. I

> don't know what your relationship was before and that could have an

> impact on how she is acting now. Seek support elsewhere for now and

> certainly its not about you.

>

[Guest guest]

Tom,

You have some incredible insight about why people react the way they do. I'd

never even thought of some of the things you wrote, like the myths

surrounding MS. My mother only has one experience with MS -- a friend of a

friend who ended up dying in a nursing home. That's it! That's probably what

she sees for my future even though it's not true. I know I will outlive my

mother. I know I will be okay.

I do forgive my mother. I do it for myself more than her. I'm the one who

would have to live with resentment otherwise. I actually have a strange sort

of compassion toward her. I just can't imagine what life would be like to

allow fear to make your decisions for you. That's a rougher life, in my

opinion, than dealing with MS.

Thanks for your response,

Jayme

RE: others reactions

> Hi Jayme! What a terrible thing to have happen... To be devastated by

> the disease and then see people turn their backs on you as if you are

> contagious. Unfortunately there are a lot of stereotypes and myths

> about MS that prevent people from understanding your situation. I know

> in my wife's case her mother and her sister just assume that 'If you

> just work harder, you can regain the lost functionality.' They try to

> ignore my wife's condition and don't even think of modifying their lives

> in order to assist her.

>

> Also, people do not like the idea that you never 'get over' MS like you

> do the flu or a cold. They are truly not prepared to listen to the

> answer to the question 'how are you doing?'. That makes your isolation

> even worse.

>

> I hope your Mother's reaction is only temporary and that you can forgive

> her for not being there for you. Bitterness towards others is not

> helpful and only adds stress to your life.

>

> Tom Nesler

>

[Guest guest]

Hi Jayme,

When I was at my most sick, I never wanted to talk about it to anyone.

It was my way of denying that I had a problem. In every other area of my

life I like to talk about things, but not when it came to my health.

Only people who were close to me knew I had a problem, its not always

obvious at first. I always considered myself so strong and healthy. It

was hard to take. Part of not accepting it was healthy because I never

did believe for one minute that I would not get better (well maybe a

few minutes I did not beleive). SO perhaps its the same with your mom,

if she does not talk about it, then its not real. I do not know how I

would react if my daughter came to me with this news. The way she is

going with her diet and junk she puts in and on her body I keep telling

her she will need my advice on alternatives more then ever when she gets

older. I think I would be terribly scared for her and I would probably

want to control everything she did at that point.

Don't give up on your mom, even though you don't expect much from her, I

know you want support, who does not want their moms support? Just love

her and accept her and don't talk abour your problems with her right

now. These forums are great places to talk and talk about things and

time with your mom can be spent like it used to be. Consider the fact

that you are still the same as you were before diagnosis, right???

Having a doctor tell what is wrong did not make your symptoms get worse

over night so what has really changed, its your perception on things,

and her perception on things. Fear is definately the enemy with this

illness or anyother, stay strong you will get through this.

Jayme wrote:

> You are right, . It is fear. She is overwhelmed by it, and this is

> how

> she handles fear. She walks away and doesn't look back. She's done

> this in

> the past, but we have been forming a wonderful relationship the last five

> years. I really thought she had changed. This is a disappointment more

> than

> anything. But she is who she is, and she's not going to change.

> (obviously)

>

> When I told her, I also gave her some positive links to learn about

> MS, but

> no response. Finally, I wrote to her again to tell her that if she is

> interested in my life at all, here's my blog address. Then I just quit

> writing to her. I don't expect anything of her, not anymore. I never

> really

> expected support from her, just maybe an acknowledgment that I still

> exist.

> But nothing. Her fear must be huge.

>

> So yes, I am getting support from my friends and other family members,

> and

> it's totally sufficient. I love this group, too. It's my favorite! I

> appreciate the support here more than you know.

>

> Jayme

>

[Guest guest]

,

Yes, it could be the email. But the thing is, we've never called each other,

even when my brother died. We either see each other in person once every

few years or, recently, email each other. She doesn't like email, though, so

she always answers my emails with a snail mail letter.

Our relationship is sounding more and more abnormal as I write. LOL!

Jayme

Re: others reactions

> Jayme,

>

> Do you think it could be the way you told her? Through email? Some

> Mother's get upset when you don't call them directly. My Mother

> wouldn't care but my Mother-in-Law would.

>

>

>

>

[Guest guest]

a,

Another reaction I got from a friend was, " Well, at least you'll be getting

lots of attention. "

Well, at least she made me laugh )

Yeah, I am totally giving up on my mom ever understanding. You're right -- I

don't need the stress. Plus I am 44 years old. I don't need a mother! She's

never been there for me anyway, except for things that were her duty as a

mother. She does hurt a lot inside, though. Her life has been incredibly

traumatic. My birth was also a trauma for her. She is a perfectionist and

expected a beautiful baby daughter. I was fat and ugly with a lazy eye.

Eeeek! She never got over that.

Thanks for your email, a!

Jayme

Re: others reactions

> HI JAYME ,

>

> I'M VERY SORRY YOU ARE HURT .

> I KNOW WHAT YOU MUST FEEL LIKE . WHEN I WAS FINALLY DIAGNOSED ( AFTER 2

> YEARS OF NOT KNOWING WHAT IS WRONG ) I CALLED MY MOTHER TO TELL HER THE

> NEWS

> THIS IS HER REACTION :

> '' BE HAPPY THE DOCTOR DIDN'T TELL YOU THAT YOU HAVE SIX MONTHS TO LIVE''

> SOMEONE ELSE CLOSE TO ME SAID '' IT'S LIFE ! DEAL WITH IT ! ''

> PEOPLE HAVE REASONS , I GUESS , TO REACT THAT WAY . I HAVE NOT FIGURE OUT

> WHAT THIS REASONS ARE AND WHEN I TALK TO MY MOTHER I DON'T REALLY MENTION

> MY DISEASE.

> I GAVE HER TIME TO UNDERSTAND . I DON'T THINK SHE DOES UNDERSTAND YET .

> BUT SHE IS MY MOTHER AND I THINK SHE IS HURT DEEP INSIDE . SHE JUST DOES

> NOT KNOW IT YET.

> I DON'T EXPECT HER TO UNDERSTAND ANYMORE , I GAVE UP !

> I JUST KNOW THAT I CAN'T STRESS MYSELF OUT ABOUT IT ANYMORE . I'LL BE

> FINE WITH OR WITHOUT HER SUPPORT .

> THIS GROUP IS WONDERFUL . HERE I FINALLY FOUND PEOPLE THAT UNDERSTAND

> WHAT I AM GOING THRU .

> BE STRONG AND TRY NOT TO BE UPSET . LAST THING YOU NEED

> RIGHT NOW IS STRESS . YOU'LL BE FINE !!!!!

> ALL THE BEST TO YOU ,

> DANIELA

>

>

[Guest guest]

Hi ,

It has been a matter of perception! Of course then I changed everything

about my lifestyle, and symptoms have been appearing, thus making it real. I

am just detoxing, though. I get confused on bad days. I forget that I am

detoxing and start attributing everything to MS. I'm sooo glad this detox

period is temporary. I couldn't take it much longer.

Show your daughter how toxic her lifestyle is by challenging (bribing) her

to be healthy for 6 weeks!

Jayme

Re: others reactions

> Hi Jayme,

>

> When I was at my most sick, I never wanted to talk about it to anyone.

> It was my way of denying that I had a problem. In every other area of my

> life I like to talk about things, but not when it came to my health.

> Only people who were close to me knew I had a problem, its not always

> obvious at first. I always considered myself so strong and healthy. It

> was hard to take. Part of not accepting it was healthy because I never

> did believe for one minute that I would not get better (well maybe a

> few minutes I did not beleive). SO perhaps its the same with your mom,

> if she does not talk about it, then its not real. I do not know how I

> would react if my daughter came to me with this news. The way she is

> going with her diet and junk she puts in and on her body I keep telling

> her she will need my advice on alternatives more then ever when she gets

> older. I think I would be terribly scared for her and I would probably

> want to control everything she did at that point.

>

> Don't give up on your mom, even though you don't expect much from her, I

> know you want support, who does not want their moms support? Just love

> her and accept her and don't talk abour your problems with her right

> now. These forums are great places to talk and talk about things and

> time with your mom can be spent like it used to be. Consider the fact

> that you are still the same as you were before diagnosis, right???

> Having a doctor tell what is wrong did not make your symptoms get worse

> over night so what has really changed, its your perception on things,

> and her perception on things. Fear is definately the enemy with this

> illness or anyother, stay strong you will get through this.

>

[Guest guest]

Hi Jayme,

Its very common to blame everything on MS. Once you fully understand

what MS is then you will be able to realize how all these different

symptoms are connected. there are just so many factors that lead up to

the diagnosis of MS. Picture dropping rocks into a bucket, at some point

the bucket is full and you have no more room, this would be the

diagnosis stage. Its our job to figure out what were the rocks, was it

bad diet, mercury, car accident, stress from bad marriage, severe life

trauma, over use of drugs and alcolhol, environmental toxins, etc.,

etc., As we learn what things might have caused us to fall, then we can

start to empty the bucket.

When it comes to detoxing, go slow, drink lots of water with lemon

juice. Make sure you are getting fiber to help draw stuff out and also

extra magnesium is good. You can go through several cleanses but they

usually are not as intense as the first few.

As far as my daughter, she got a serious infection 2 months ago, it was

in her mouth and she lost 20lbs. COuld not eat anything but soup and

hardly even that for 3 weeks. She swore she was going to take her

supplements and eat better. Its lasted about a month and she has fallen

into her patterns again. Where she is the worse is her perfumes, hair

dye, creams, makeup and that kind of stuff. She has given up soda

because of me, and does not eat candy, but she loves bread and pasta, so

that will be her next challenge. Her boyfriend has helped alittle cause

he does not want her sick, so he reminds her to take her supplements.

Jayme wrote:

> Hi ,

>

> It has been a matter of perception! Of course then I changed everything

> about my lifestyle, and symptoms have been appearing, thus making it

> real. I

> am just detoxing, though. I get confused on bad days. I forget that I am

> detoxing and start attributing everything to MS. I'm sooo glad this detox

> period is temporary. I couldn't take it much longer.

>

> Show your daughter how toxic her lifestyle is by challenging (bribing)

> her

> to be healthy for 6 weeks!

>

> Jayme

>

> -----