In an ongoing effort to learn more about who visits msconnection.org and why, we’d love to hear your answers to a few questions. Thanks in advance for any opinions you’re willing to share.
Why do you visit MS-related online spaces like msconnection.org? What are you looking for and how do you know when you’ve found it? What is the most valuable part of the experience for you?
Apparently nobody wants to answer your question. I came on here last year hoping to talk to others who have been dealing with what’s happening to them. But i got no response no one seems to want to talk about it.
This time i came on to see if others have had the same physical experience as me with burning of the head and ear. We’ll see if anyone responds.
Ive heard many say that they don’t like to tell people they have MS, I say why not tell them ?
Its nothing to be ashamed of it’s not something you could help, it’s not your fault. I don’t look for pity when i tell people but it’s more of an explanation and besides in my life i’m In God’s hands what better place to be.
Sorry i just ranted on your post. I come on to try to relate and understand others and what they’re going through.
Thank you, itsingodshands. Hearing what brings you here and how you feel about it is exactly what we're interested in knowing. :-)
Well Kris, There may be on line related spaces but they are not like msconnections.org. msconnections is not selling everything or anything, that is why I visit here. I have been to multiplesclerosisnewstoday.com and as soon as the page appears I get dizzy, there is so much going on I lose focus and feel disoriented AND I need to filter for myself the sales pitch from the reality. Here is an honest rapport about how people are feeling and what is going on with them, even though the discussions are sometimes quiet. And even with the silence there is the honesty about how people are trying to cope with all the surprises from ms.
I appreciate that no one is selling anything here and we can have a discourse about everything and anything though some of the anger gets filtered out. Even with the breaches in security it is a reasonably safe space. A clubhouse without walls.
Thanks so much, Maria. This is exactly the kind of insight we're looking for and things I hadn't thought of. Thank you again for taking the time to respond. :-)
First, my single biggest personal complaint about MSConnection.org: The site refuses to add formatting to my "My Story." :( Being the long-winded type, I took the trouble to use paragraphs and formatting, but the site insists on presenting people's My Stories as a wall of text. Considering the site uses a slick WYSIWYG editor, why not present people's My Stories as formatted? Those stories are great I think, but the wall-of-text angle discourages people from reading them.
Aside from that pet peeve whine, the site is useful just to connect with other MSers. Since we can have a strong tendency to become housebound, depressed and/or isolated, developing connections with other MSers is critical and desperately needed.
The site seems well-run and is heavily moderated, but some aspects are "clunky." For example, the "Connection" procedure seems a bit odd (but I'm not a Facebook user). The person-to-person private mail systems seems a bit odd (and underused?) too.
And I still wonder about the wisdom of limiting reply threads to posts down to 2 levels. In some ways that's good to prevent people from going off on tangents and evolving sub-threads of different topics, but it also seems a bit limiting.
One thing I'd encourage more of is to have MSConnection folks chime in with links to the main MS site. That main site has a wealth of info, but like any site with tons of info it's hard to find what you're looking for. The MSConnectioners whacking us with a clue-bat, so to speak, is a gentle reminder to us that there is a gold-mine of info on the main MS Society web site.
Hi golgotha -- Thank you for the insights (I'm collecting them all) and the Friday laugh ("whacking us with a clue-bat"). Laughing any day is good but laughs seem to come quicker and are more enjoyable on Fridays. Thanks again and have a great weekend. Kris
When I was first diagnosed 16 years ago this august, I didn't know ANYTHING about MS. I was very scared. I went to a local support group in my town that ate at shoney's once a month, thinking that I would find commiserate spirits. It was just basically a social club situation. I wanted information on research and things I could do to help myself. I really wanted knowledge. And a woman came in with her parents, and she was in very bad shape. She was in her 30's, and this group just had nothing to offer her. I felt so very bad for her -- I will never forget her! She was lonely. This site is a support goup in its essence. It gives me a chance to connect with others and to learn. Thank you for this site.
I do agree that I would like to read others' MS stories.
The information you have posted is very useful. The sites you have referred was good. Thanks for sharing
subway surfers online
I'm a spouse caregiver. I just joined today.
It is REALLY frustrating to be the spouse of an MS victim. First, you are watching the most important person in your life suffer and struggle with this disease. Second, we too just lost the life we had planned to live, and must now devote essentially our full time to caring for an invalid. To have worked and saved and scrimped for a lifetime with the goal of traveling and participating in various activities when retirement age comes around, only to have the rug pulled from beneath you just as you enter the so- called "golden years," is cruel and devastating.
The problem is compounded when your ill spouse refuses to admit to anyone that they have MS, and would be unhappy knowing that the caregiver spouse has emotional needs that they can't meet resulting from the burdens of caregiving and the unwelcome imposition of a sexless marriage. Having an online resource like this gives us a place to vent and console one another without our spouses knowing that we belong to a support group.
90ragtop, thank you for your honesty. We appreciate the truth, ms uncovers our nedd for honesty, and your words are true for both the older of us and the younger of us, and it, for sure, changes the way we look at life.