Presence of SX's

[Waydwnsouth1]

My DW and I had a talk last night and I realized just how much she does not understand about MS. But then I thought maybe it is me. We were talking about the presence of sx's. I explained to her that everyday is soemthing different. I have the same sx's but just not everyday. The only constant is my legs. I explained that there are days when I have dizziness, there are days when I have pins and needles, numbness, blurred vision, and days when my feet fell as though they are on fire. She just kept asking if the medicine (Avonex) ws working. I explained that DMD's only slow the progress and not stop the sx's. SX's will always be there just to varying degrees. I hoping there is someone out there that can give some advice on how to get her to understand just what MS is and what it does. Her sister works with a lady that has MS. She is always saying how good that lady is and if she did not tell anyone about the MS noone would ever know. Well, I did not even try to explain that. OK I know this is getting lengthy justlooking for some advice. Thanks!!

[heliotrope]

Many of the MS Societies run caregiver groups. Might suggest them to her? Books might help, but she has to be willing to read them.

I know when I was first diagnosed my family went right to the first person they knew about that had MS and assumed my symptoms would be the same. Of course, that person had benign MS (I know it's an iffy term, but they're really not even to RRMS). Not even close. It took them a lot of time - and me explaining what was happening - to understand that my MS wasn't like that. You're not the only one with the issue.

[cosake]

Hi there - you may want to have your wife join the board and do some reading.

It must be hard for you that she does not seem to understand.

I have explained it to my kids and everyone else that MS is completely unique in every person - no two people have the same course of symptoms nor will the same treatment work the same on two different people. I have explained that my symptoms can vary from one minute to the next and you never know what to expect. And just as quickly as a symptom starts, it can stop . . . or it can continue for days or weeks . . .

Does your wife accompany you to doctor appointments where she could learn more ? Do you have the pamphlets and documentation on the Avonex that your wife could read ? The NMSS also provides pamphlets of information explained in terms everyone can understand.

[candycane]

I've given up (trying to change others minds)

I can't tell you how many times I've heard "This person & that person have MS & you'd never even know it!" I've probably even said it myself at one time or another. I also know that there are many MSers suffering from all kinds of symptoms (myself included.) It is extremely difficult to get others to understand & lately I've stopped trying. I think the most important thing for me to work on is to not compare myself with anyone else & to give myself the gifts of self awareness & self respect & just walk my own path.

[Lendi]

The NMSS has written material that helps explain it all in a simpler format. Books and articles are great too but with MS baby steps works better where education is concerned, especially for family or friends. Give them a call, they really nice people and get stuff sent out ASAP and don't charge anything.

I think the drugs are the hardest to explain. Society expects medicataions to fix things.

I understand what you're saying when friends/family hears or knows others with MS. My DH talked to people who had loved ones or friends with very, very progressive MS and it scared him to death.

[WACVet]

How do you explain this crazy disease to anyone?!

I still have a difficult time understanding how I can walk one moment, and the next my legs do what they want to.

How do explain you have an itch, or pain, but can not pin down the exact location? Ah, it hurts somewhere between my thigh and knee. Somewhere on my back I have an itch, would you just scratch the entire back, please?

I know I was watching TV 5 minutes ago, but now I can't see it!

Oh, I meant to fling my body to the floor, even though I didn't trip on anything

I know I vacuumed yesterday, but I can't walk today.

Yep, see the lovely muscles in my arms...I'm very strong, for a very short period of time, but not long enough to wash my own hair!

MS is soooooooooooooooo bipolar!

[Waydwnsouth1]

There are some great ideas here. The only problem is I have tried most of them. I called the NMSS right after my dx and had all the material sent to me. I even went through it piece by piece and laid some aside telling her this would be great for you to read. I bought the book MS for Dummies and I believe I am the only to have opened it. I even have DVD's and I am the only one to have watched them. I keep them right by the dvd player but to no avail. I don't know what else to do. Perhaps I should just learn to live with the unwillingness to learn. She does go to the Neuro with me but he says the samething I do. She suffers with migraines that will hit her every now and then. Even with my MS I stay up late with her. I have found her on the bathroom floor before so I do not like her to be alone. I wait on her hand and foot. Now that's not what I am asking for I just want some understanding. I used to suffer from horrible migrianes so I do understand her plight. I know I am not alone with this problem and though I say I will just not worry about it that's not true. It is very important to me that she understand. You know we (MS'ers) are in a bad position. Before our dx we suffer from the sx but choose not to say anything because noone believes that there is actually something wrong. Then we get our dx and all of a sudden we talk about our sx. It's like I told her last night. She asked how did these sx just all of a sudden appear. I chuckled and said they didn't they have been there all along but you kept telling me I did not have MS and all the docs said nothing was wrong so I did not say anything. I suffered in quiet. Well welcome to my world.

[jumpinjiminy]

Sounds like denial. An emotional blockage. Like she's not processing what's happening to you. It's hard when a spouse won't acknowledge or accept the process and compares your experience to that of others asking why you aren't as well as they. She wants it to go away. Which is understandable, but unrealistic. I don't know how long you've known or been dx, but she might be stuck in the grieving process.

[Windwalker]

Go out to "YouTube" and look for MS related Videos. Although, none really blew me away as being what I wanted to show people, I.e. "See people, this is what I'm like", some really show people with serious gate issues, good explanations of how MS affects them, etc.

Seeing it can bring the message home better than reading it in a lot of cases.

[CarrieMpls]

I agree that it sounds like she’s in denial. She doesn’t want to know, so she’s blocking it all out.

Maybe it would help to explain to her how important it is to you for her to try to understand? That as your wife, she’s your partner in your healthcare and her being knowledgeable about your disease and symptoms both now and down the road can be useful for both of you. Ask her to put herself in your shoes, wouldn’t she expect the same?