Multiple Sclerosis (MS) Support Group
This community is a place where members can discuss current events and weigh in on what's going on in the world.
This community is a place where members can discuss current events and weigh in on what's going on in the world.
I can sure understand the kids not wanting to hear about MS. They want to think of us as Mom or Dad...Always gonna be there and our job is to take care of THEM...lol...But siblings? I would expect a sibling to listen with compassion and understanding. It is sad that so many close down when the MSer needs to talk. My sisters are both very good to me. I would be lost without their support.
You really do need to find someone to hear you. Maybe a friend? Just start by saying you need to find someone to bounce off your feelings. I sure hope one answers the call.
As for the tripping, yep thats the MS alright, just means you need to take extra care and be aware when you might normally not.
Do you have a dx or is your MS undxed at this point in time? I think that matters to your family in their accetance of this disease.
The tricky thing about families is that no two peple are likely to experience or express the inner feelings of your diagnosis at the same time or in exactly the same way. It is common for people to have trouble talking to each other about stressful or frightening things, meaning your MS. To enhance your communication, you need to make it a point to get better acquainted with your illness. Because people tend to like their information in different formats, here's a "menu" to consider:
* Readng material. The National MS Society has a library of brochures on virtually every aspect of MS. They are available on line at www.nationalmssociety.org/brochures MS for Dummies is a great easy starter book, and you can buy it online reasonably at Ebay.
* the Nationall MS Society Web Spotlights series is designed for folks who want to zero in on particulr topics without having to hunt around. See www.nationalmssociety.org/spotlight
* Direct them to online programs like DS, Loved Ones who Support MS sub group.
* Support groups, invite a sibling to go along with you. Call the National MS Society (800-fight-ms) or the Multiple
Sclerosis Assocition of America (800-532-7667.) for information about local suport groupd.
The challenge is for each of you to find out your favorite way to gather information, and then figure out how to talk about it. Remember, no two people have the same coping style. People still have a lot of misconceptions about MS (thinking it is muscular dystrophy or other disabling diseases). Your family members may be worrying about upsetting you or each other. Some subjects just may be too uncomotable for folks to discuss, even with someone they love.
2) I think we all experience this to some degree. Kids probably don't want to know, they want to believe that you are invinsible. But your siblings/friends should be there for you. I would try to get them a book and ask them to read it. Or invite them to a MS outing. My family was always tight-lipped about my MS until I asked them all to please join my MS Walk team and told them how much it would mean to me. They get caught up in the spirit of the event and it opened them up considerably to my situation. I'm actually deciding which family members I want to bring to the upcoming local MS Chapter BBQ event.
Also considering finding a local support group or join the MS Society if you aren't already - they have partner programs where you can get a phone buddy to just bounce your situation off of regularly if you just need to vent/talk it out.