My MS group is stressful
 

About a year ago a local woman with MS started a badly needed support group for this area. There were several attempts at getting groups started in this area, but the leaders never hung around long enough to make it work. They would do two or three groups and then quit. This got folks discouraged, and many simply stopped coming. Several times you would show up, only to find a cancelled sign on the door and no further instructions till the new leader took over.

A new woman took control of the group about a year ago, and well...she is ...pushy. I cant blame her one tiny bit, but it bugs me. I say I cant blame her because the locals here need encouragement to get anything done. There are more than 100 names on the list, and yet frequently she is sitting with one or two folks. She takes alot of time out of her own busy schedule to find speakers, and arrange meeting places, and be supportive only to find herself abandoned on meeting day.

the few meetings that I have gone to were dominated by the newly diagnosed. Which rightly so, they have many questions, and many fears, but we never seemed to get off the "how do I do this" topic. or the "how to be a new patient" at least 50% of this crowd is no longer new, and many of them are PPMS or SPMS and dont wish to hear over, and over and over about DMDs. for example, one month was a copaxone speaker, and the next was a betaseron speaker, and the next was a LDN woman, and then it was a cancelled speaker to talk about DMD side effects. If you have a computer, or a town library you can easily look up the basics yourself. I think support group meetings should be about support!

so, recently this woman has found herself ALONE on meeting day, and is now starting to get aggressive with her campaign to get folks in the door. I feel bullied into going, and yet I feel badly for leaving her sitting there alone. yep, I have MS and Yep, I feel like I can contribute to a meeting, but its hard to get there, and its hard to stay there. I dont want to hear about being newly dx for the 20th time.

I have spoken to her after her last email blast about "how could all of you leave me sitting here alone!" she wanted input and suggestions on how to pick a better day/time for the meeting, but didnt seem receptive to to what info to have at the meeting. She said she works very hard to get speakers of ANY kind, and its too hard to be picky. I suggested maybe NOT having a speaker, but allowing those who attend to share their stories, and be supportive of each other, instead of having to sit for a 45 minute speach about stuff we dont want to know. It upset her, and she called me ungrateful and told me that if I thought I could do a better job, to bring it on! it really did make me sound ungrateful.

I could use some advice here. If I stop going, the group will die. If I keep going I feel like I am wasting my time, efforts and energy hearing over and over and over about stuff I dont need or want to know. Should I keep going so the group stays afloat? Should I take care of me and just stay home?

Why would the group die if you stop going? Are you the only other member besides the pushy lady? That's alot of pressure on you alone....and nobody should have to bear the entire burden of keeping this group together.

Maybe after she's had some time to calm down and think about it she'll change her viewpoint and not think that you're being ungrateful....just realistic. If not, I'd just tell her that having MS is enough....you don't need more stress and pressure. If she won't take constructive criticism and other ideas for the meetings then she's going to find herself alone. Not too many people will keep going back if all their ideas to help are poo-pooed.

Groups can be stressful.
 

I went to my local a few times. Half of them get tears as they go around circle. I open my mouth to add to what they said and usually I have them all clapping, smiling like a AA meeting lol (no I never been to aa just what I see on tv) so Dej, you're call. If you can be the uplifter and get that good feeling inside from helping others (and not want to go home and hang yourself), do it! :)

I am one of 3 who go on a regular basis. There are 5 others that come rarely, or occasionally, and a few dozen come once in a blue moon, and only if it is a brilliant speaker. They want high quality snacks, and while one is too warm, the other is too cold, and one is crowded, while the other complains that no one is here. Yes, I fear that as one of the 3 if I stop, its just one other and the pushy lady.

I think support groups can be so valueable, but I too dont want to hear that folks are amazed I am not in a wheel chair "yet" or to see that John has gone from walking and bouncing to a rollator and then into a chair. its hard to watch them fall.

I do want good speakers, but I dont want to hear the same thing over and over and over. I dont want someone to "sell" me on their drug, alternative or idea. I love that they will tell me what they have to say and let ME choose what I want for ME. The BVT or bee venom person had some really awesome info but didnt seem to appreciate that I am allergic to bees. The monavie sales man was very nice, and had good info, but gave off the attitude that we were sealing our death warrent if we didnt use his product. I dunno. am I being picky?

I know I cant continue to go simply because I fear the group will fold if I dont. The pushy lady gets so upset if the core 5 dont show. I cant blame her, and completly understand how frustrated she must be to give up so much of her own time to just have folks tune out.

Its a no win situation. This isnt going to end well. :(

Holidays can be stressful for some(the group) but Dej, you'll handle it. Bet ya 1$.

Hey how about you get the whole group on Marinol and have a laugh fest? I mention it often! It works :)

Gosh Dej, I feel really guilty now. Today is our meeting and I decided I just couldn't be bothered going. My bad! Our meets are monthly and I used to go every month if I was well, but lately I have become apathetic about it.

When we lived in a different state, my hubby were really involved and worked hard to help the group make money which was given back to the MSers in our area (providing equipment, medications, repairs, etc), but since moving I just can't raise the same enthusiasm.

I put it down to several things, like the different personalities. The group is small (about 8-15 people) and there's always one who moans and complains, nothing ever pleases her. There's one who knows everything and talks over the rest of us, and there's one who's always saying something smutty ... you get the picture?

Also, this group won't do anything for themselves. While our group (in the other state) was smaller than this one, it was very active helping each other by raising money, this group refuses. They want the Govt. and the public to donate everything as they believe it's owed to them because they have an incurable disease.

I guess that's why I have become disallusioned, and it is a shame to have good speakers arrive and have few people to listen to them but it's always a select few who decide who's to be invited to speak, and who isn't. Does that happen with your group? Does everyone get an equal say?

If none of my reasons apply, then can I suggest a social meeting? No guest speakers, no stress.

Rather than the room/hall or whatever place you have the usual meetings, may I suggest that you have a meet in a park with a barbeque, at some-one's home and everyone bring a plate, or anything else along those lines? Send out invitations to all on the list and ask for an RSVP.

Then, have coffee and something to eat and before people leave, have the meeting. Ask for suggestions on how to get people interested again? You could even ask those invited to suggest one thing each if they can, without puting them under any pressure if they decline to do so. Maybe this simple change (and it might or might not be, a one off thing) would be less threatening, especially if there's a good reason why the number's have dropped off.

That's all at the moment, but I'll add anything else I think of later.

I live over 60 miles from a town that has a support group. I have always wished I could go....but now I'm thinking maybe I'm not missing out! :rolleyes: It seems like a hard thing and I surely don't know the answer. It seems like there are as many different support needs for each person are there are different symptoms.

I do admire you for trying your best to help keep it going...but please don't let it cause you more stress than it is worth for you. You certainly don't need extra stress. I know it took me years of exhaustion (before I even knew I had MS) to finally learn it was okay to use that nastly two letter word..."NO". You can only do so much and you can only worry so much!

Here is a big :hug: for you. I can feel your frustration! Hang in there...or don't!!! :D (The meetings I mean!)

Let us know how it goes.

OMG you hit the nail on the head! not only the earlier part about one whining and one that knows it all, and one who is smutty, but the fact that the folks in my group feel and act so powerless.

We spoke about getting a yoga person to come and teach yoga, but the crowd complained that if they continue to do yoga the classes cost money that isnt covered by medicaid. They want PT or OT or massages that are covered. When I mentioned fund raising you would have thought I brought up mass murder. I spoke about maybe calling some local legislators to give opinions (dont care which way) on some hot topics in our corner of the state (medical MJ) or (clean air action days making riding the local buses free) and not one wanted to even pick up the phone.

What happened to trying to help yourself? Since when is being accepted into state services an excuse to give up, sit home and eat ring dings? They dont want to hear about nutrition because they believe the foods being spoken about are not covered by food stamps. Of course food is covered! They dont want anyone taking away their diet soda or mc rib diet, cause we all know that losing weight is too hard if you are sick.

When I mentioned that losing weight and feeling better with small amounts of exercise would help many be able to cut back on their insulin I was blasted with the "dont you realize we are sick!" comments.

I guess after some reflection on why this group bothers me so much, I have seen several issues that have hit the nail squarely on the head. Its hard to help people who dont want to help themselves. I gave up on my family for many of the exact same issues, and yet here I find myself once a month sitting in the middle of a group with the same attitudes and ideas that I refused to accept from family. *sigh* :(

Maybe I just dont feel kinship to 99% of the folks that when they do come, only come for the handouts. They are furious if they dont have a fatty snack and a bucket of coffee at the meeting. I too have MS, but I want to get up! I want to fight! i want to work out what I can work out. I want to know about things that can make this better, even if it means some work on my part. MS is incurable, but that doesnt mean you sit down in your chair and sink with the ship, does it?

Maybe its me. :confused:

I admit...I'm not a big fan of "in person" support groups. I'm not anti-social.......but it's a big energy zapper to actually go to one of these meetings only to find that the ones there are only there to complain about everything that isn't just to their liking. The location is bad.....the food isn't good enough.....the speaker doesn't talk loud enough.....or talks to loud......the parking is bad......etc. :rolleyes: At some point, MS or not, people just have to realize that everything is not about them! I hope that doesn't sound callous or cold but c'mon people.......if you look hard enough you can find something good! :rolleyes: That's the main reason I stopped going......even if I did only give it a few tries. It's just too exhausting to be around such negativity. If I'm going to expend the energy to go out I at least want to have fun.

Maybe if MS wasn't the main focal point......just meet to be social and get together with friends who understand if you don't want to hit the dance floor or if you spend 20 minutes in the ladies room just to wee wee! :o

When I was dxed the 2nd time in 1993, I met a friend who headed a support group. I loved it, no one biotched, everyone was up beat and so helpful to newbys. We had parties and stuff too.

I stopped going when the local NMSS office moved to Cincinnati and the dynamics and support from NMSS dropped off.:rolleyes:

My friend stopped heading it and then she too, stopped attending. I blame NMSS for that failure..the turds..:mad:

Anyway, just like coming here, it's hard sometimes to talk about our MS and that's why we have the Stumble Inn, so we can just have fun.:D So the social meeting may work better, for the P2P thing, IMHO.:)

IMHO, support groups are whine festivals...unless they have a specific issue at each meeting, someone ends up taking over and talking ad nauseum about the first twitch they had, and tells every symptom up until that moment.

I've tried one for incest survivors, and one for fibro patients, and both were serving whine but no cheese;)

You have to do what is best for YOU, Dej...sometimes you have to just let go...no matter who is hurt/insulted, etc...

A study (for what that's worth to anyone) found support groups can bring people down rather than being helpful. I think I would not like them and have never gone to one.

I found this to be true with the bereavement group I joined after my DH passed away. I left feeling worse than I did when I got there. After a while it was apparent that this type of "support" was not helping me. I think the same holds true for any type of support group. If you aren't getting any benefit from it then it's time to move on.

Support Groups -
 

The MS support group I attended for a few meetings was really nothing more than a whine-fest for a select few. Anytime anyone tried to steer the conversation towards anything remotely positive it was quickly turned back around. I think alot of people (including me) got tired and quit going.

:pYo All - never been to a "support" group but from what Im reading it sounds like my 24/7 senior community apt complex group. UGH, everything in life is negative to them. I avoid their social gatherings like the plague!

I judge everything by this statement, "I'm under strict doctor's orders to only do Happy.:p

Plus, if I am going to spend any energy going out - you better believe it is to enjoy life - art, yoga, theatre etc.

Just my little 2 cents.

I went to an online bereavement support group, after DH died and at first, it was nice, but you're right Kell, after awhile it was depressing.:(

I guess that's why some come and go here, but I come here mostly because you are my only friends now and I enjoy your company.:grouphug:

Well said, Sally!!! :hug:

I am lucky enough to have a fantastic support group in my little town. When first diagnosed (2001) I went, and to my horror there were three older women in wheelchairs (one terribly disabled), two younger men with walkers, and a couple of people with walking sticks.

It was like a snapshot into a very scary future.

Unti we started talking. It was then I realised that this was an upbeat, fun and intelligent and diverse group of great people - defined not by their disability, but by their genuine desire to support and nurture others along the path that they have taken.

We alternate between social and formal meetings - and sometimes we just get together for a catch-up.

People have come and gone, but the essence is still there. I have been around other groups that do nothing more than complain about there symptoms and how little support they get, and it does get you down.

You can't be responsible for other people like that - it is their choice how they 'live their disease'.

Lyn

Wow, Lynn, really nicely said. I've always "known" this or tried to put it into practice...but the way you just stated it...was like a light switch was just really turned on for me. Thanks!!

I have decided to go to Tuesdays meeting, BUT I plan on talking to fussy pants to tell her that I am simply not able or willing to try to make every meeting. I am not going to pepper her with my reasons, I already have stated my reasons to her.

If I am not willing to put up with this malarky with my family, why would I continue to allow it from strangers? simply because they have MY disease and I want to make an effort? Well, effort has been made, and its costing me. I dont think this woman is a good leader, nor do I think she will last much longer. I am impressed she has lasted this long.

Oh, and the final thing that bugs me. She sells Avon, and every week I get an email telling me about the latest Avon bargains and how to order online using her name to give her credit. At one meeting she spoke at length about how hard it is to find ways to make money and spoke of how Avon is going to save her. Well, I dont wear jewels around the house. I dont wear make up, and I use a bath products from another place. I find Avon products to be ok, but just ok. I guess now Avon is selling clothes and Curves items too. I appreciate the position she is in, but dont like that she is using her co ordinator job as a rolodex to get avon clients.

so, Tuesday will be my last meeting with this current set up. Thanks for all the good guidance and encouragement. If the group dies, it dies. there is nothing I can do about that. :(

:circlelove::yahoo::I-Agree::You-Rock:

Dejibo - Atta Girl!!!!

Lead On!

Take that Bull by the Horns!

I'm way happy for you.

Dej, I understand. Our local group started in 2004 and went strong for 4 years. Then we had newbies join that didn't ask questions. Instead they just complained about other things in their lives instead of talking about their MS difficulties.

The leader got discouraged and quit. The new leader didn't know how to contain this sort of complaining, so most of the oldtimers quit. Me included.

I found it was just better for my sanity to find online groups for my interests. Sometimes we just have to do what is best for us. I now only go to advertised events with doctors and speakers on the agenda.

I recall now -
 

WAY TO GO DEJ!!!! IMO, it sounds like you've made the right decision. As we've all learned from having this miserable disease, we can't "fix" everything and sometimes the opinions of others just makes things worse. That's the time to just walk away.

When I was diagnosed in 1990, I attended a support group in the nearest city......maybe three or four times. Seeing so many with more advanced MS, was very depressing for me. Now that I'm in that same boat, I don't have the energy or desire to participate again. Like Sally, you all are my friends and support. We can come and go as we please, not at any set time. Everyone "gets it" and we feel free to talk about anything pertaining to MS.......or not -- in the Stumble Inn! :)

Dejibo,
 

I am relieved "for" you! I was feeling a little stressed...and I'm not even there. So glad you have worked through this in your own mind....now stick to your guns! ....and I agree that she shouldn't be using the ms groups as a platform for selling her Avon.....really? seriously????

Let us know how the meeting goes. Good job!!!:hug:

Tomorrow is the day! I have been rehearsing my attitude, and my speach of what I what and how I want to say it. I promise to not lose my cool because she is using this group as a way to sell avon. I think its unethical to poach this email list to bombard us with avon flyers every 3 days.

The DH leaves for a long hunting trip tomorrow, so I am stressed already, and dont want to head out to this group, when I could spend a few hours with him, but this needs to be done. DH is going to leave at the same time as I do in the AM and I may be late, but will show up and end this madness.

I have gotten it down that I am telling her IF there is a speaker of great interest to me i will TRY to show up, but if not, I am NOT going to be the anchor for this group simply to keep it alive. If it folds it would actually take pressure off me, because I wouldnt have to worry about going anymore, anyway. HA!

Thanks for all the support. :grouphug:

I went to a few of the meetings at the local group in my area, those people are really suffering from depression. Just not my kind of party. :eek: oh no were all going to die! :)

I went today. 2 others besides me showed up. I was kinda happy I went because the speaker is married to the new neuro guy in a town close to me. I am happy to know I dont have to deal with the old dismissive dude anymore.

I went early so I could chat with her. She saw me come in and said "oh thank God! I was so afraid i was going to be sitting here all alone...again!" I told her that I showed early to have a chance to express myself to her. I went on to explain that.

1. I am NOT the facilitator nor do I want to be one. I dont want nor need the responsibilities of running a group. I dont wish to co-chair a group either. She responded that she didnt ask anyone to co chair. I told her it appears other wise. To put the level of guilt on the backs of a couple that do attend, with comments like "if you dont come the group will just have to fold" isnt fair. I too have MS and I too dont feel well, and I too have a real life that doesnt revolve around meetings, or activities planned or unplanned by anyone including my family. You CANT count on me to show up, so...please dont! I got a lecture on how strong we are as a team. I repeated myself that I am giving her notice. I will come and go as I please, when it suits ME, and not because it makes anyone else but ME happy. I am sorry if that hurts her feelings, but there it is.

2. some speakers are great, and some are horrible, and some have no business in an MS group, but since I dont pick um, I can only vote by showing up or not showing up. If folks are telling you to stop bringing them the quack snake oils cures, then why would you keep booking them? and then keep being mad at folks for not coming? if the speaker is fabulous and I am feeling great, I will be here. if not, please dont take it personally. I have MS! I dont make many important meetings in my life, let alone lectures.

3. please stop trying to force others to carry your workload. If you took this job on, then YOU took it on. If you refuse a co chair, then you get to handle ALL of it alone. I will no longer feel any responsibilty to fill out replies, play 20 questions about needs, or MS or whatever, only to find that you are throwing the info away, and following your own drummer.

last but not least 4 is that I HATE the fact that my inbox is now full of AVON come ons. Every 3 days I get an avon flyer reminding me how my MS leader is an AVON rep and how I can be one too! it offers me nothing special to order using your name, and I think its just sad that you pilfered names off an MS list to get customers! good gravy! as I finished saying that another woman with MS was walking in and she said "AMEN!" please stop sending me this crap. I dont want to buy make up, and if I did it wouldnt be avon.

The host seemed quite hurt. it stung, and I was thinking that perhaps I should have waited till after the meeting, but worried that I would be too tired or too distracted. So...there ya have it.

Thanks for all the support. :grouphug:

I am sure that wasn't easy for you and probably very exhausting...but, I hope you feel a weight lifted from your shoulders. I feel like you must! :hug: Good job!

So, how was the speaker?:hug:

Dej, I'm late reading this and it's all come and gone before I butt in.

But it all sounds very stressful. Had it been me, I'm afraid I would have bought a nice big bar of chocolate, rented a good film and sat at home.

If I need a support group, I just log on here. I know I can flit in and out of here, pick what I read about and know that if I need help, someone will try to pitch in.

Leave the Avon lady to her thing. Walk away... :)

I can come to NT in my underwear - priceless.

The speaker was wonderful. Her hubby is the new neuro in the big city up from me, and he is sorely needed. The old guy is grouchy, and dismissive to MS patients.

The topic was bladder, bowel, and sexual dysfunction related to MS. One woman had her whole large intestine removed due to Chrons disease years ago, and its a mess. The other has such a slow paced intestine she can actually got 12 to 15 days without pooping. Said "I get busy and dont notice till I start vomiting, and then I know there is a problem" WHAT?! How do you not poop for 2 weeks and not know you dont have a problem? anyway, we spoke of how the intestine has an intelligence all its own. its nerves and signals work independantly of the brain and body until it comes time to open the exit door. if the exit door signal cant get thru to the brain, then the door can either stay stuck open or shut. She talked about pelvic floor exercises are useful to keep the floor strong, but if the signal cant get thru, it doesnt matter how strong the floor is.

She spoke of how many woman get a UTI after intercouse because the urethra isnt as tight and closed off as it used to be, and bacteria can wash upwards into the bladder. Since MS patients tend to not flow as strongly as non MS patients we dont get to flush all the bad stuff away after. We have to become extremely well hydrated in order to keep the fluids moving.

She touched on urinary retention. How the gate simply cant get the signal to the brain to empty. The gate stays closed, and urine can remain trapped in our bladders which causes them to over stretch and ruins the signal process even more. The woman who runs the group retains about 300cc of urine before she becomes painful. We spoke of self cath options and ways to do it.

So, the speaker was well prepared. she was good with her message and had everything timed wonderfully so that at 12 on the dot, she was ready to leave. After all was said and done, the woman who runs the group was gathering up all of her avon books, avon flyers and some MS pamphlets and had quite a load. I said "do you need help?" and she said "yes, if you could grab this stuff for me" and pointed to a large pile of Avon stuff that had been unseen till then. I said "hang on a sec." and I went to the front desk of the library. I asked if they had anyone that could "help that woman with MS" up on the 2nd floor. She called to Randy a big strong teenager and asked him to go up to the 2nd floor to help carry stuff. I got in my car and left. I am NOT good at carrying things. most stuff ends up on the floor and me with it.

So, there ya go. :cool:

Deij - way to go. I know I was stubborn but finally admitted to myself and the world, I'm really not good att carrying. I think I'm fooling the world and me that I REALLY can do it. Not.

I had the UTI from hell, it would not go away, saw a great Urologist. He got rid of my UTI, put me an 1x day Nitromono/flurn, (an antibiotic a)nd I have not had an UTI in almost a year. My PCP tells me 2x a day for 2 days following sex - which honestly doesn't occur that often now because of mobility and pain problems. DH has been great about it.

OR, without..:eek::D

:Thats-Funneh:
:holysheep: :Funny-Post:

I agree with this whole-heartedly...ESPECIALLY today of all days! :grouphug::grouphug::grouphug: