Hi again-you guys are so patient with me and my litany of questions!! Gracias!❤️😁
I’m trying to keep this nondescript as possible so I don’t offend anyone.
I have been working on this for over five years-about the time my MS progressed quite a bit more.
I very much want to attend a weekly group—a Support group but more structured. Basically a fellowship group.
Attending weekly has been extremely challenging! Some is on my part; relapse, fatigue, pain, etc. Some on the building side: unable to keep my walker nearby during the event (space issue I guess), can’t bring my rollator/walker into the bathroom (it’stoo small), no handicapped bathroom stalls so no safety bars). The after-event fellowship hall is difficult to navigate or even get through . Chairs and tables are closely arranged. Potluck is a line that if tough to file through to dish up food. Finally, there is NO ONE who checks up if you’ve been missing-for months even. No one to CALL or visit if I’m housebound.
It’s a similar experience I’ve had at other groups like this.
My “trying harder” to be a part of something bigger than myself has been frankly, discouraging!
A lot is now online like this group! But I constantly question myself if it’s enough or good enough, or am I making an excuse the exclude myself by not bucking up and showing up?
I knew you’d understand my dilemma, and might have thoughts or encouragement for me?
All my experience with MS groups has been online.I've never joined a group specifically for MS until recently. This group here seems to be very supportive when members need it and they can also be a lot of fun to goof around with.
I appreciate that kind of thing very much and it makes MS and all it's BS easier to deal with.
Online is good for me as I can come and go whenever I feel like it and some days as you probably know,are better than others.
That is a wise answer- seems so straightforward and practical! Thanks!! Did I mention I tend to overthink things until I have my compromised brain in a pretzel??😜
I’m puzzled about the group meeting in a place that makes it very difficult for people with MS. That doesn’t seem terribly supportive.
If in-person support is important, could you suggest a change of venue? Or is there anyone in the group with whom you seem to hit it off and with whom you could meet for coffee?
I guess we can’t expect any one person or group to meet all of our needs, but I do hope you find the support you need. I wish we could all meet in person because I enjoy our little family here so much. But I’m grateful for the real friendships that have formed over the 2 plus years I’ve been on the this forum.
I have an in person MS support group, we officially call it a connection group, that meets once a month. That is usually easy to do. We have guest speakers come to the meetings to discuss various things such as exercises to help with balance, new medications on the horizon or clinical trials that are going on, diet and nutrition, and a whole bunch of other stuff. I've been with that group long enough now that if I didn't show up someone would call to check up on me. Yet the weekly trivia group that I meet up with, i don't think most of them would care or notice if I ever showed my face again and I've been doing that almost as long as I've been with the connection group. It just depends on the group. But if the location isn't accommodating for you and your mobility equipment maybe find another fellowship group to meet up with. Maybe a small group would work better too.
I really like this group though. I can come and go as much as I like anytime of day or night to talk about just about anything. Somebody usually answers or comments within a few minutes to a few hours. Primarily because we have people on here from all over planet Earth and the majority of us I think have sleep/wake issues related to MS and we get the general gist of the issue without having the need of a long drawn out explanation of what the MS symptoms are first. We just make the comment or ask the question then wait for a response. Sometimes we just share thoughts, funny stuff, photos, crafts, art, pets, and so on, and that's cool too.
I think I tried to be too vague-it’s actually a church- I hope that’s ok to say!😬😁
You have written that "...there is NO ONE who checks up if you’ve been missing-for months even. No one to CALL or visit if I’m housebound." - well - at the risk of being blasted by other forum members - I have to say that I don't find that a very "Christian" approach or ethos. To put it bluntly, the attitude of those in the group you are currently attending leaves a lot to be desired, and I'd say you're wasting your time even bothering to make what is clearly a considerable effort just to be there. Cut your losses, and if the religious aspect of it is important to you you might be able to find a non-denominational but more welcoming and friendly group to go to instead - or maybe consider finding a common-interest group which is not religious or church based - at least then you would have social interaction with people who might give a damn (e.g. cooking, photography, woodwork or whatever).
Furthermore, I assume you are in the USA, and I have no idea about anti-discrimination laws over there, but where I am it would be considered that the "organisation" running the group would have breached anti-discrimination law by not enabling reasonable access for disabled people and by not providing disabled facilities such as accessible toilets - unless they had a b... good reason to get a special exemption from minimum legal requirements.
I have to agree. My tendency is to blame ME-am I reading into things, could I be more “faithful”? Only recently have I even considered this and many other churches having failed me-I haven’t failed. Any search of “homebound” or disability service focuses on the church doing the outreach, not the disabled wearing themselves out to be let in their group!! I’m currently checking if there a few folks where I live if they want to gather. We’d all be in the same boat!!😃
bischaar If memory serves (and it may not serve very well) the National MS Society (NMSS) lists support groups in each state. If you live in a major city, one of these may be accessible. Since they are specifically MS focused, I would expect them to have solved many of the issues you describe. I don't think you are making excuses for yourself. Each of the challenges individually may not be significant, but add them up and whoa! the fatigue load increases and what seemed like a good idea suddenly has created another problem.
Speaking for myself, I find food lines at meetings very challenging. I tend to hang back to keep from slowing things down; sometimes I'm unable to carry cup, eating utensils, and plate in one trip. Often, when I finally sit down with my food, everyone else is finished, my food is cold/congealed/wilting and the speaker has begun. I've learned to brown bag or avoid these situations.
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