is it just me?

[mrshoobery]

Hi everyone,
I was diagnosed with ms about 3 weeks ago and recently started avonex. My right leg is still numb and really heavy. I know it will take time for things to get back to normal, but my family seems to think I'm not so much faking it but over reacting. I'm only 27 and using a cane on my bad days. How do you get over the other people in your life who just don't understand. Maybe I'm just easily irritated.

[concerned40]

I get it!

No I completely understand and I haven't even been diagnosed yet. Folks who aren't experiencing what we are experiencing just don't know what to say or how to act and sometimes that makes us feel badly. In the end we know what you are experiencing and are here for you. Time will tell regarding your leg. Hope you feel better soon.

[Cindarelly]

First off you and your family need to understand none of these meds will FIX your ms.
At the best it will only slow this disease. MS is not going to be a set in concrete type of disease by any means, it will change every day and every month, week yr.

It can be light, moderate, or severe and then get better. I think your closest family needs to go with you to the neuro and get some reading material as soon as possible.
At least your spouse and children.
Then always be prepared to run into those that will say they can fix you up with a diet, a vitamin, special water.. God.. high oils or low oils or anything else under the sun that man has ever dreamt of.It takes a very tough skin to have a chronic illness that no one else understands.. This is a very good time to educate yourself about MS.. and no where you stand .. so your not on shaky ground yourself.. I am sorry if this sounds harsh. It is not meant to. You will run into many more than myself that will rock your world and send you crying.
Trust me I know, I have done it, that if I had only had more faith or ate a better diet.. or learned more about which diet was "a Godly" diet or not had dog's or you name it I have been told ...........by all the ones who love me the most............... I have learned they do not count

[nixiepixie]

It is irritating. It doesn't help that with MS you can be fine one day and a physical wreck the next. People just don't get how it works. All you can do is try to educate them the best you can. Have you shared the Avonex book with your family? Or the super cheesy DVD? Granted, I laughed at the DVD, but my mom found it helpful. I ended up with two of the red books and gave her one. She really got a lot out of the book.

[mrshoobery]

It's the little things

Thanks for all the replies! My hubby completely understands everything and is beyond supportive. My mother on the other hand is not. She has been to my appointments and was even the one the Avonex nurse trained for my shots. When I got sick after my last shot she informed me she knows lots of people who take Avonex and don't get sick and that it must be in my head. When my hubby bought my cane she blew up saying that he's enabling me to be lazy. She has said since I'm 27 I shouldn't be needing a cane and keeps repeatedly saying its all in my head. She's read all the books and everything I've been sent. It's tough because she always calls and asks how I'm doing, I've learned to just lie because I'm tired as it is and I don't have the patience for her remarks. Has anyone gotten past this stage?

[Cindarelly]

Let me say this, knowing your mother is acting this way.. then let me say.. could it be this is HER denial.. she pains knowing your sick and how serious it is..
I know it sounds as if any normal human would not act this way.. I am a mom and there are just times when normal won't override.. denial when its really more than I can handle..
She may not ever "get it"
Try giving up teaching her and say Gosh I am glad your doing my shots.. wants some coffee.. then talk about whatever she is interested in......... Let her see that YOU and hubby can handle this MS... maybe she will learn that SHE too can cope with it.. Good luck... Mom's are hard to crack !

[Just a small town girl]

I feel for you. My mother-in-law has been more passive aggressive than your mother is being. For her it's the little things like, well why don't you switch to this other medicine, my friend's friend gets that for free and basically insists that nothings really wrong with me.

For the first two months I was ticked. I mean royally ticked. Her daughter (my sister-in-law) has fibromyalgia so you would think that she could get this. But no. Eventually I just got to the point that I realized, my husband thinks her crap is crap and I think her crap is crap, so even though she's generally a great mother-in-law she's just not going to get this. Since I've realized that I can't try to talk to her about any of this, things have gotten a lot better and I'm not angry about it anymore.

With all that said, it's always harder when it's your mom. Maybe she's just going through denial. If the comments don't stop and they keep bothering you, you might want to try telling her that you're having a hard time with this and that her comments are making things worse.

Keep us posted and I hope things get better.

[Cindarelly]

That would be hard to take from my "mother in law" the manipulations I can imagine would be "hE double toothpicks... I know what the pain would cause from a mother.. but I would really want to kick some serious behind on an in law..
I was harsh in my post, I can assure you, my family has dished me EVERYTHING that can be dished... I have pleaded, begged cried and lied... ( avoided family reunions, funerals) you name it.
Half of them think I should be healed, the other half think I deserve it.. (by what reasoning I do not know)
The rest just can't imagine what could be wrong with someone Younger than them.. and I still could possibly ever eat a popsickle or any junk food..
All the time.......... preaching that drugs (meds) are the devils works. I basically have no siblings anymore and my parents are deceased. I have finally had to come to terms with the fact that they are all very dysfuntional and they are not healthy for me to have a close relationship too. It has not been an easy road to go down. I resent that I had to go without their bond and my child had no aunts and uncles and cousins..

[lusgirl]

It seems that when you tell someone you have MS, they have all these "pictures" of how you are supposed to be. Because MS is an invisible disease, they feel that you are just imagining things or faking. I understand your frustration. I am learning that the best thing to do is take care of yourself and do whatever it takes to do that. Your health is the most important thing now. If they have a problem with the fact that you can't do what THEY think you should be doing, who cares? You have to do what is best for you, not someone else.

Just because something worked for one person does not necessarily make it a cure all for me or everyone else. I am learning if a person has not walked in my shoes, their opinions are of little value.

Staying connected with people who understand what you are feeling is so crucial in helping us to live and thrive in spite of this MonSter.

Keep your chin up!