Since I was DX'd

[Waydwnsouth1]

I have noticed that I am more aware of how my body reacts on a daily basis than before being dx'd. I have come to understand that everyday it will be something. It may be the same thing over and over or it may be something new. It may even be a combination of things. Understanding it and coming to grips with it are two different things.

Understanding it also makes me realize that it is truly impossible for a person that does not have MS to fully comprehend what we go through on a daily basis. My DW asks me everyday how I feel. I love her for it but sometimes trying to answer that on a daily basis is difficult. I told her yesterday " Baby you need to understand that it will always be something. I will have good (bad) days and I will have bad (bad) days." I try so hard to convey to her the mental and physical aspect of all this, but it is truly difficult. I have ordered brochures and books to help with all this so we will see.

How did everyone else handle this? Does your loved one ever get to the point where they really understand you? I know my DW wants to help and she is very concerned. I just don't want her to feel locked out because she cannot understand it. I want so bad to be able to talk to her and have her understand. I don't know, maybe she does. Maybe I am selling her short.

[Lendi]

She may not be able to understand exactly what you're going through. No more than you can exactly understand what someone with arthritis or back issues or...

She can empathize and do her best, though. Picturing how it feels in general not to feel your best or the issues involved. Isn't that the important thing, anyway.

Plus, you might look through information on the internet that helps to explain it. Find articles that make sense on your problems. You might check with the National MS society too. They may have information for loved ones.

[Krysalus]

day at a time

My 'SO' is a concerned loving person. He is supportive of me, but I don't think he can ever truly understand what I go through. I wouldn't wish him to. His life is difficult enough dealing with it from his side of the dx.

He understands that when I'm not steady, he needs to watch me because I may be falling sometime soon. He knows that if I seem a bit hazed when he's asking me stuff, he is the one driving and I'm not cooking dinner that night. He knows that if I am in pain, all the ibuprofen in the world just might not help. I don't need him to read my mind. He's learned to read my sx as they relate to daily life.

Your wife is showing caring and concern. She has to live with your dx, too. It can be really hard on a relationship. I think as long as you are honest and share your life with her, she will understand what she needs to. I think if she gets locked out as you call it, it will be because you stop communicating with each other. It takes two to have a conversation.

Getting and seeking more info is good. If nothing else, it will help you to start the dialogue. She might be afraid of upsetting you. She might be afraid of the future. All the things you're afraid of, she might be afraid of. Or she just might be stronger than you think. She could be planning for possibilities. She might not want to know more than how she can help on a day to day basis. She might have researched enough about MS to get a PhD. already.

Talk to her. It's the only way you'll know.

[KMCangel00]

I'm sorry to hear about your diagnosis, Waydwnsouth1 You must be going through a ton of emotional/physical upheaval right now. I'm about 2 months into the official diagnosis and I still feel like I'm having more bad (emotional) days than good, that's for sure.

It's tough when you think about it. I said to my mother the other day that I didn't anticipate ever truly feeling good again. It's never going to be like it was. It's always going to be something. And she said, "Well, I guess you're going to have to get used to feeling bad." It's a lot to take in.

Maybe I won't feel as crappy as did when I was flaring - but I'm gonna have some degree of tingling/numbness every day. My legs are probably always going to be tight, heavy, spastic, etc. It might not be a lot, but it's more than someone who doesn't have it, so I get pretty upset when others look at it as "Yeah, but it's not that bad..."

My boyfriend is definitely sympathetic, but he can only understand so much. He tries his hardest but I see a little bit of the "it's really not that bad right now," in him sometimes, too. It can't be easy for him, either. We had just begun the process of starting a family which totally blew up in our faces when I had a miscarriage that brought my flare and diagnosis to the forefront...now he is living with this 28-year old woman who kind of has the dexterity, memory and and energy level of an 80-year old...hahaha!

Even if they can't understand, they love us enough to understand as best they can. And, I think that is enough. Maybe he drives me crazy when he says that he knows how I feel because he gets tingly sometimes too (HAHAHA), but after he drives me crazy, he rubs my leg to get some of the tension out. I guess he deserves his crazy for putting up with my crazy, too.