Scared to Death and Feeling Guilty

[fourcats]

I have been dx with MS for only about 4 months, but have had symptoms for 27 years. Anyway, I have been struggling emotionally, and physically. I decided to go to an MS support group tonight. My best friend drove me (she is so sweet) and when I got there, there was just the moderator, and a woman and her husband, a total of 5 people, --3 of us who had MS. I sometimes need a cane but right now I am doing fairly well. The other two ladies were in wheechairs and barely functioning. The moderaton looked at me and said--I was like you just a little while ago. Now I can hardly move in the wheelchair and the other woman could barely talk, just nodded along. I left there feeling as if there was no hope. I thought the women were really kind and I felt so bad for their progression of MS and I can see mine ramping up so to be frank---the meeting freaked me out. We walked back to the car after the meeting ended and I cried. Now I feel so guilty for my reaction and not ever wanting to go back. They were just being honest--I realize my reaction is my issue, not theirs but --- boy it was had tonight.

[Mynamegoeshere1]

guilt

There are some support groups that make you feel better about yourself and some that don't. One of the first things the people in my support group told me is that there will be people coming in wheelchairs and scooters and not to let it scare me. I told them it will not, as I am getting a wheelchair too, just waiting for them to come fit me for it

One thing to remember is that everyone's MS takes it's own course. Just because she was just like you and now in a wheelchair does not mean that is your fate. It was extremely wrong for her to make you feel that way. I have an aunt who has MS and never progressed as quickly as me and she has had it for 30 years. I have only been diagnosed for about 1 year and have progressed to almost her level in that time, but have had it longer without diagnosis.

My mom's high school best friend also has MS and has never taken anything at all for hers and she still looks just perfectly fine and healthy, although she does have her days of pain like we all do. If that support group was not a fit for you, find another. But remember, God might have sent you as an Angel to give the others support which might help you too. Just a thought......

** Moderator's note - Post broken into paragraphs for easier reading. Many people with MS have visual difficulties that prevent them from reading large blocks of print. **

[Camsue]

I understand fourcats!

I went to an MS group about 20 years ago that consisted of about 5-6 people 3 in wheel chairs... then they rolled in a lady on a gurney ..

This was before the days of any medication other than steroids..the site of her scared me to death! I didn't go back again and felt guilty for feeling that way...Hence I try to remain grateful that I am doing as well as I am.

In Jan 2011 I joined Weight Watchers (again) and after attending for 6 months I shared with the leader that
I have MS...She then directed me to 2 others in our group that also have MS, had met their W.W. goal and are doing very well..

Relax and take care

[alishape]

Wow

You know fourcats, I have never been to a MS support group, but I am slowly coming to the realization that I am an alcoholic. Yes, you can see that this is getting fairly personal, lol. Anyways I went to a couple of AA meetings and the people there always scare me so badly. People have lost children, become addicted to drugs, lost homes, etc all because of alcohol. I just feel like I am slowly inexorably turning into my mother. Which believe me is bad enough, but it just doesn't seem to be on the same scale as many others there. I feel guilty for not wanting to be around some of the people there and also for feeling a little smug in the knowledge that I haven't as far out of control as some of the others. Ugly emotions I know.

Nonetheless I do get something out of going to the meetings. Everyone there has the same problem I do and we are trying to find a new way to live. I see that it is possible to not turn into my mother. I can also see what could happen to me if I don't get myself together. The meetings make me feel grounded in reality instead of fears for the future, almost the same way this site does with my MS. Maybe you should find another meeting, because they can give you hope and insight with the additional plus of helping others.

[JerryD]

I have the same reaction to the MS support group meetings and dinners. I leave them and ,I mget a little more depressed.
I think that Camsue is taking the correct actions and trying to improve her health in an active way. All of us with MS should be taking aggressive actions to improve our situation. We all know the results of the opposite actions.
fourcats, you are not alone in those feelings. I hope you will take this time to reflect on the plight of those who have been torn down by this disease and do everything you can to fight for your health.
Some people living with MS have found ways to get their lives back. Keep searching for your way. And do your best not to avoid depressing situations. Good luck

[hunterd]

I echo the thoughts of JerryD. He said it perfectly! Keep trying to find what's best for you.

AND WELCOME TO MS WORLD!!!!!

[Cat Mom]

It's kind of ironic. There's lots of MSers on this message board who are suffering greatly from it and the support here is unparalleled. For some reason, I don't find it depressing or frightening to read... but to see it, totally messes with my head. I'm embarrassed to tell people this, non MSers who kindly suggest support groups, so glad I'm not the only one.
Jen

[Special Kay]

I went to a "Newly Diagnosed" support group in my first year with MS and I was by far the healthiest-looking person there. There were people who were already on disability, taking tons of medications for symptom relief, and one woman came in on crutches.

It didn't scare me so much as fill me with compassion for these others. But I did feel like I couldn't voice my own personal concerns in that setting.

I spoke privately to the counselor who moderated the group about my feelings and it helped a lot. The group only met for a period of weeks, so once it ended, I didn't seek out another group and haven't felt the need.

The NMSS branch in my city has support groups of many types, including one called "But You Look So Good." I think that some of the groups meet by teleconference, so maybe you can find something like that if there isn't one physically in a location near you?

[kelly k]

Registered Member

I have to say that support groups make me feel depressed. . .I know what MS can cause but its a different feeling when I actually see what MS can cause.

[Toomnyhats]

I understand the guilt. I go to the same support group as Myname. I don't need any mobility aides but there are several members of our group that use scooters/WC as well as canes. Many were dx yrs before me but then there are those like Myname who were dx after me & have more mobility issues. Like you Special Kay, I think I am more compassionate seeing those who are worse than me knowing it could be me some day.

Now that I think about it Myname, our group is like an in-person version of MSW - many different disability levels & backgrounds but every bit as supportive as MSW. We've been blessed with a good group.

[cosake]

It's interesting to hear this from fellow MSers, because this is the way my husband is. (And I'm not saying it is bad in any way - it is easily understood.) It was very difficult for him to see others with canes, crutches, wheelchairs, scooters, etc. at an MS speaking event we went to, and in the waiting room at the neuro's. He gets upset knowing that it is likely that I will be using aides like these one day.

I, on the other hand, have made my peace with it and don't worry about it anymore. I figure if it happens, it happens, and if it doesn't that's great. I'm not going to worry about it until it's an issue because there is nothing I can really do about it except take my meds and stay healthy if I can.

I do feel bad (or is it badly?) that I am in better shape than some of my fellow MSers. Some of it is guilt, and some if it is gratitude that I'm in good shape (for now).

[Jules A]

You know fourcats, I have never been to a MS support group, but I am slowly coming to the realization that I am an alcoholic. Yes, you can see that this is getting fairly personal, lol. Anyways I went to a couple of AA meetings and the people there always scare me so badly. People have lost children, become addicted to drugs, lost homes, etc all because of alcohol. I just feel like I am slowly inexorably turning into my mother. Which believe me is bad enough, but it just doesn't seem to be on the same scale as many others there. I feel guilty for not wanting to be around some of the people there and also for feeling a little smug in the knowledge that I haven't as far out of control as some of the others. Ugly emotions I know.

Nonetheless I do get something out of going to the meetings. Everyone there has the same problem I do and we are trying to find a new way to live. I see that it is possible to not turn into my mother. I can also see what could happen to me if I don't get myself together. The meetings make me feel grounded in reality instead of fears for the future, almost the same way this site does with my MS. Maybe you should find another meeting, because they can give you hope and insight with the additional plus of helping others.

I love your attitude and perspective on this subject! It might not be easy but I have a feeling you will be an AA success story. BTW there is a ton of evidence based practice regarding the positive relationship between 12-step programs and sobriety.

There are different philosophies and climates among all support groups so if someone needs assistance, especially with 12 step programs, I would urge you to continue trying different groups until you find one that you are comfortable with.

Something I try to be cognizant of is whether my uncomfortable feelings are the result of me not being able to accept that this is what MS does to so many. I'm not a fan of denial and guess I'm just thinking we should enjoy today but also plan for tomorrow.