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Posted 1/5/2007 7:49 PM (GMT 0)

Can anyone give me advise to get me out of the house? I am on permanent disability, can't work...barely leave the house...all my friends left me when I said, I have MS...I'm depressed, moody and am becoming a negative loner...does anyone know what I am talking about? I hope I'm not alone!

Posted 1/5/2007 8:13 PM (GMT 0)
Friday p.m.

 

Dear Aliss:

 

So crazy, crazy sorry that you are in the situation that you are.

 

Do you live anywhere near a MS Society office?  I know here in Michigan, they have singles get togethers.

 

Are you religious?  If so, your church, maybe?

 

Some city organizations?  My thoughts go out to you.....

 

Maybe some on-line groups?  John

Posted 1/6/2007 4:42 AM (GMT 0)
Hey Aliss

I'm sorry u'r in a sad place now, but hang in there. Yes, i've heard of others who's friend's didn't know how to deal with ms or didn't want to deal with ms and they ended up walking away, but as some move out of u'r life, others move in. U have a whole community of people here who care about what happens to u and how u feel. We understand what u'r going thru and how it affects u'r relations as well. John mentioned some very good places for connecting with others. Sometimes u just have to push and get out there and give u'rself a good time..and along the way u'll meet others. Consider the places and things u did before u were dx'd. It won't likely be easy, but u'r payoff will be great. Hang in there. U are far from alone!

rhonda
Posted 1/6/2007 4:53 AM (GMT 0)
So sorry to hear that you feel alone.  You sure aren't!  Look how many of us are here with questions, suggestions and just general support and information.  I also am on permanent disability.  I find that if I throw myself into organizations that help people who have a harder life than I do it really helps.  Go volunteer at a homeless shelter, soup kitchen or veteran's hospital.  There are many place where you can volunteer whatever time you can without demands for more than what you can offer comfortably.  Good luck!  Know that there are always people here who "get it".  This place has made me feel so much less alone and hopeless that it's incredible.  We may never meet face to face, but everyone here seems to give freely to one another to make it a really special place.
Posted 1/6/2007 9:04 AM (GMT 0)
Hello,

 I was reading what you wrote yesterday. I want you to know that your not alone in how you are feeling. I am going through the exact same thing. My friends have disappeared. My husband left. I can no longer drive. My apartment has become my prison cell. Having to give up your career, dealing with the bomb shell of MS, friends and some family leaving. It is not easy. Just not being able to go out and get into my car and drive is horrible.

 

I look at this way. I am at a cross road in my life. I do not know what is next for me. I do know that I am a person and I do have something to contribute. I do not yet know what that means for my future. Please try to remain as positive as possible, I know it is not easy. There is something out there for all of us. Don't let MS become your legacy. I refuse to be defined by my disability. For right now take it minute by minute if you have to. We never know what the sun may bring. Please email me if you ever just want to vent. It does help.

 

Cathy

 

 

 

  

Posted 1/8/2007 12:29 AM (GMT 0)
Thanks for your input...I've thought about joining a support group at the hospital, I'm sure if I asked someone there they could point me in the right direction, but my problem mostly lies in motivating myself to get out of the house. I guess I could try the online support...do you know any sites?
Posted 1/8/2007 12:44 AM (GMT 0)

Aliss said...
Thanks for your input...I've thought about joining a support group at the hospital, I'm sure if I asked someone there they could point me in the right direction, but my problem mostly lies in motivating myself to get out of the house. I guess I could try the online support...do you know any sites?

What kind of on-line support are you looking for? This forum -- and there are tons of others -- are one form of on-line support.  The support group at your hospital -- is that sponsored by the MS society in your community? They often have group meetings, educational sessions, and social activities you can participate in.

I've had MS for 23 years, now....and while I've lost some friends because of it, and have had to greatly curtail my activities, I've made a conscious effort to find other things to do with my time and interests.  For example, I used to weave. When my legs became too weak for me to manage a loom anymore, I turned to creating dollhouses (my hands and arms still work).  I just bought another one the other day.

And I have a whole host of internet connections -- people that I "know" through the internet. It's not the same as face-to-face friendships, to be sure....but we spend a lot of time e-mailing each other, and sometimes telephoning each other, too.

People do leave when someone they care about gets a chronic illness.  But sometimes we drive people away, too, if we're negative, or always talking about our illness, or expecting them to "take care of us because we're sick". I've learned to keep my mouth shut and just get on with my life...and folks have come back that left, earlier.

I hope you find some new connections.

Posted 1/8/2007 4:24 PM (GMT 0)
I think this would be a great place to start...I'll do that.

I didn't realize so many people had answered my post! I tried to join an online support group similar to this one and when I posted my question...even after quite some time, no one replyed. Glad to find one where people reallycare.

I should probably explain myself a little better...I feel alone, not just because friends left me and I have a hard time making friends now (because of the whole "loner" thing) it's because I have NO family. My fiance and I are alone in this and he tries SO hard to understand and deal with me, but it gets really difficult sometimes. I feel I need more, but he seems like he doesn't know what else to do. Do you know what I mean...there is only so much he can say or do for me in the area of MS.

I know with so many people out there with MS, there's got to be several out there just like me, so I can't always play the "pitty party" and I really do want to get out of this funk and make, not just my life better, but mine and my fiances life better. But right now, I just feel bad.

Amy
Posted 1/8/2007 4:45 PM (GMT 0)
Hey Amy

I'm so glad u came back and saw the responses. Yes, the people here do really care about u and how u'r feeling. It's so easy to feel down with a chronic illness. So much is thrown at u at one time and u'r expected to just deal with it. Well, u can't always just deal with some things. U need help. We all do. Getting out and about will aid in that for sure, but talking either here or in a face to face relationship will also help. Just knowing someone who's listening really understands...that means everything. Having someone listen means they hear u'r pains...and getting to say them out is a form of therapy that we all need. I imagine u'r fiance is doing all he knows to do without the experience of having dealt with this himself. Motown John always says u can't understand the ms fatigue unless u've had the ms fatigue. He's absolutely correct! Just to feel it gives u the empathy u can't posses otherwise. Lay u'r troubles on us and continue to talk to him, but also continue to be understanding to his inability to feel what u feel. We all need to have a pity party from time to time, but don't stay there long. Reach out as u have with us and let us hold u up as u need it. Take care and feel better friend.

rhonda
Posted 1/8/2007 10:09 PM (GMT 0)

I see in another post that you're only 26, pretty young to feel like you do. When you talk with your doctor (you mentioned in the other post that you're seeing your neuro, soon) talk with him about the possibility that you might also be suffering from depression.  Depression can happen with MS -- a chemical imbalance in the brain, caused by a lesions in the wrong place.  Lots of folks take antidepressants, which also can sometimes help with fatigue, and even pain, so it's worth asking about it.

You should also ask about going to see a physical therapist.  If your walking is a problem, and that is why you're staying inside, you might need to learn how to use a cane, which can help with stability and get you moving more.  I use a wheelchair full time, but still get out and about, doing things, particularly when my husband is around to help.  I thought you were all alone, but you said you have a fiance; I'm sure he'd be glad to help you with canes or forearm crutches, if it meant you'd go out and do things.  Even an afternoon shopping, or hanging out at the mall, or going out for dinner, will help your overall attitude.

YOu say your fiance is trying to "deal with" you. Exactly what is it that you're asking of him?  What are you not able to do by yourself, that you need help with?  Talk about that here, and maybe we can offer some ideas about how to increase your independence, and build up your confidence about getting out and about in the world. 

Posted 1/8/2007 11:21 PM (GMT 0)
Hi Amy,

 

    Sorry I'm a little late jumping in here but I did want to welcome you.  I'm sure you'll find this group of people on this forum very helpful and supportive.  I'm sorry you feel alone and having trouble getting out.  You really should be proud of yourself though, seeking out support is a great first step.  Sometimes just talking to people who are going through what you are can help tremendously.

    Your fiance sounds like a great guy.  He may never be able to understand completely what you are going through, but he is trying to help in ways that he can and that is indeed wonderful. 

 

    Please feel free to vent or ask questions anytime, we'll be here to try to help.  We also have live chats on Mondays if you're interested, you are more than welcome to join us.  Take care and I hope you feel better soon.

 

Kimber

Posted 1/9/2007 6:29 PM (GMT 0)
Tuesday p.m.

 

Hello Amy:

 

You had said how your fiance is tring so hard to hekp you...

 

But I think someones previous suggestion about some anti-depression drugs might be appropriate.....

 

An I don't know if you have a big wedding planned, but I bet there are at least a thousand Healing Well folks who are expecting an invitation..

 

Goin' to the chappel of love....John

 

PS---You know what, Amy...your fiance, and my wife,are among a special group of people...she married me after I was DX'ed with MS.

Posted 1/9/2007 7:36 PM (GMT 0)

Welcome-I am new myself.  You've already made the 1st step to getting out by joining this forum.

Wonderful folks all banded together by a frusturating disease.  As you read thru posts you'll find alot of answers you hadn't thought you'd needed and they all help.

I've been in a wheelchair for years and cannot get out w/o assistance tho have a wonderful husband who makes sure I get out whether I realise I need to or not!  It does make a great difference to be among the 'living'.

This past year I took up watercolor painting.  It's good home therapy and keeps your mind off of lurking depression.  I started going into the local art store for supplies and started making new friends there.  From there I was invited to different painting groups where I'd gotten alot of help w/my painting.  The amazing thing was everyone accepted me as a regular person, offerred help w/wheelchair but did not make any overtures @ my disability. 

It's a very good feeling to be among well people and be thought as one of them.  The ms groups I've joined were a bit depressing looking at all the disability devices,...  Have met 2 women in my painting group that use canes and we'd never questioned each other until after a few months and sure as heck they have ms too.

Alot of times my husband'll drop my off somewhere outside by a picnic table or picnic shelter while he shops and I paint.  You'd be suprised how many people will stop to visit with an 'artist'.  Most towns have a 'dial-a-ride' system for disabled which can take you anywhere.  If you take painting supplies as I do or even a book to your downtown park that is a big step on getting yourself out and you'll have that book or whatever to rely on that you are not alone.

Good luck to you, life is hard even w/o ms.

Posted 1/11/2007 6:09 PM (GMT 0)
John...Your right he is sepcial! We hadn't even started living with one another yet when I was diagnosed. I even gave him the option of leaving because it was such a new relationship (1 year). Telling him to think about it for a while and then let me know what he came up with. He came back after a couple days and said I'd have to come up with a better plan to get rid of him! :) funny guy...now, nearly four years later we're getting married. As for the invite...if my backyard was big enough, I would almost consider inviting all you wonderful people. But seriously, I do consider myself lucky. I've heard so many times now, of the partner leaving when the going gets tough and that totally brings tears to my eyes because I know, even though he'll never really know what I'm going through on a daily basis, if he wasn't there...I'd be lost and incredibly devistated!

Frannie...I just recently joined a once a week technical drawing class...it's been nice to get out (although I have been for two months) but I find, even when I'm there, I don't socialize. But it is STILL nice just to have other bodies around.

Kimber...Thanks for your input...it does feel really nice to talk...really talk. Not have to try and explain every little detail and have a person who has no idea try and decipher what it is I'm feeling. Thanks!

Uppity...My fiance tends to forget I have a bad memory and when things don't get done or I forget many times, he gets slightly annoyed. I get annoyed because I am a clean freak (or at least used to be) and now it takes forever to clean but I try my hardest to keep the house nice by doing a little bit by little bit. Then he comes home and the shoes are here, the dishes are on the counter, his towel isn't folded nice and proper, he's left a pile of cloths on the floor. The more mess he makes and the less effort he puts in to help me maintain the house...the more I want to scream!!! We've had talks and he just keeps saying, remind me. I say, Remind you? Why should I have to...you have one thing to do, PICK UP AFTER YOURSELF!! So I don't have to...it goes in one ear and out the other. Very frustrating. SO he thinks I'm too picky (has even used the term obsesive compulsive) and I think he's too bossy and doesn't appriciate what I do. Yes, I do have depression...my doctor and i are still trying to come up with a mix of pills that work. I do know that for conservation of energy and cane would probably help durring walking...but right now I don't have huge problems with balance so I tend to think a cane can wait. I guess part of that is I'm so young...can't a cane wait?

Rondab...thank you!
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