Ideas to improve the board - post them here!

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Having a less involved spouse does affect how I feel here

Postby kqbear » Thu Oct 05, 2006 7:52 pm

Hi Richard and Erin,

I appreciate the fact that you care to respond but my experience on the boards have been different. When I do post I get a lot of "well it could be worse". So I guess this isn't the place for me.
kqbear
 

Postby Immi » Thu Oct 05, 2006 8:31 pm

kq,
Although no one has ever said it to me, I frequently feel that others on this list have it worse than me. I hope you won't leave because of feeling like this: after all, you are a well spouse to an ill one. This is an excellent spot for learning how to fill that position.

If you feel that someone has actually criticized you for having it 'easy,' I would think that was unintended.

best wishes.
IS died at age 57 on 9/5/09 of Multiple System Atrophy-Cerebellar, a neurodegenerative disease.
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Postby samann » Fri Oct 06, 2006 10:29 am

kqbear, your last post made me feel bad, so I went back to re-read your previous posts and the replys. I didn't get the same feeling from the responses as you seemed to. I, myself didn't reply to your first post, but if I may do so now, I'd like to. My IS has MS also. He also has a hyper active sex drive, only in his mind, not the physical ability. For years I endured his feeble attempts because I believed it was my duty as his wife. Finally, I just couldn't do it any more, it made me feel so awful afterward. It's now been over 5 yrs. He still pushes for it, but I just can't. It's not that I am repulsed by him, but that when all is said and done, he is depressed and apologetic and I am sad, empty and frustrated. Please know that you are not alone, and definatley a WS and that you do belong here.
Sandy
WS FOR 30+ YRS., IS WITH PPMS
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Postby Erin » Fri Oct 06, 2006 2:05 pm

kq,

There was a time in my life when things were a lot worse. A time when I couldn't talk to ANYONE about what was going on at home, with my IS. People wanted to believe that everything was fine, getting better, and because it was too hard to tell the truth, we led them on. I needed a place like this where I could just tell the truth, mourn my losses, accept what I had and find a way to live as well as we could with the situation we were in.

I feel downright awful for many of the people here. Many people DO have a tougher time than I have, and I am very sympathetic. I'm sorry that you were made to feel that you didn't belong here because things "weren't bad enough" -- I apologise on behalf of anyone who might have made you feel that way.

I can only say that for me, every day is different. Some days I don't feel like a Wellspouse at all, and other days (usually the day after the good day!) I'm ready to tear my hair out for deceiving myself into thinking that I wasn't the day before. Crazy life.

If you need us, we're here for you.
- Erin
My best friend and IS has had Chronic Fatigue Syndrome since July 1999
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Erin

Postby kqbear » Fri Oct 06, 2006 6:23 pm

So you acknowledge that there are many different levels of IS and different needs for each stage. So why would it be so difficult to create a separate forum for people who's spouses are in the moderate category? I don't understand why a simple suggestion can't be considered.
kqbear
 

Postby Immi » Fri Oct 06, 2006 6:58 pm

kqbear,
you could start a new thread under 'help and healing' or 'specific diseases or disabilities' and see what develops.
IS died at age 57 on 9/5/09 of Multiple System Atrophy-Cerebellar, a neurodegenerative disease.
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Postby Erin » Fri Oct 06, 2006 10:27 pm

Great idea. Try something like "moderate ability."

That's how new forums were created in the past, when there were too many new threads in "Help and Healing" that it made clear sense to start a new group.

I am by no means opposed! Try it out as a thread first and let's see what happens!
- Erin
My best friend and IS has had Chronic Fatigue Syndrome since July 1999
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Good idea

Postby kqbear » Sun Oct 08, 2006 10:12 pm

O.\K. That will give us an idea if this is just my perception or if there is a need. At the least I get to "cyber meet" anyone who posts.
So I'm off
Kim
kqbear
 

It could be worse

Postby mary » Sat Sep 29, 2007 7:32 pm

People say and type many weird things as they are focusing on saying something that will cheer you up. Forgive people for saying the wrong thing or the depressing thing. Be grateful they do care about helping you.
I do not think it is important whether others have it worse or don't. The focus is on how best to help and support you. You need to post and let us know what helps and what hurts.
The guy who has it worse, whatever that means, may have more people to support him, or may be feeling better than you that day, or may have more money, health, IQ, who knows what. Who can say what having it worse means? People here want to help you and you have to do some guiding, teaching, and maybe a lot of criticicizing and complaining. some of us really want to help but are inexperienced at doing so and sometimes just slow learners.
When I'm flustered I say weird things. Don't ask me if I committed a crime when I'm upset as I'll probably reply "maybe." The maybe is the "things could be worse"---just words from a nervous person trying to help.
Keep posting please.


kqbear wrote:Hi Richard and Erin,

I appreciate the fact that you care to respond but my experience on the boards have been different. When I do post I get a lot of "well it could be worse". So I guess this isn't the place for me.
IS died Oct. 27, 2009 from a massive stroke.
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Re: Ideas to improve the board - post them here!

Postby mary » Sun Sep 30, 2007 7:55 am

It might become a problem for security or let the unwanted onto our site if you followed my next suggestion.
I would love to be able to forward many of the postings and replies to my friends. I loved the Caregiver letter from mommo1953 on the Wellspouses are People posted Sep 27. That people are so giving even when they have problems of their own is just so inspiring.
I would love to be able to forward what Erin wrote on Religious and Moral Tolerance under the boundaries forum.
so if there is anyway that we could forward some of the postings consider it. If it could allow any of the porno or money seeking crowd please just forget this posting.
Mary
IS died Oct. 27, 2009 from a massive stroke.
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Postby Erin » Sun Sep 30, 2007 3:50 pm

Mary,

Writings posted on the WSA forum are the sole property of the WSA and the person who wrote them. You are NOT permitted to copy and paste what you read here anywhere outside the forum.
- Erin
My best friend and IS has had Chronic Fatigue Syndrome since July 1999
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Postby adelle » Sun Sep 30, 2007 5:06 pm

Thank you Erin for clarifing that! Sorry, I gave wrong advice. Adelle
IS passed on September 2, 2010 from complications of MSA.
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Not permitted

Postby mary » Sun Sep 30, 2007 5:10 pm

Erin, I will not forward anything from this site. thanks for telling me.
Mary

Erin wrote; Writings posted on the WSA forum are the sole property of the WSA and the person who wrote them. You are NOT permitted to copy and paste what you read here anywhere outside the forum.[/quote]
IS died Oct. 27, 2009 from a massive stroke.
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Re: Ideas to improve the board - post them here!

Postby thefourthson » Sat Nov 29, 2008 12:40 pm

Why can't we edit our post? No a major issue, just wondering.
IS has PPMS, bedridden, tube fed, can't talk
Life is like a hot pepper, what you do today, just might burn your butt tomorrow
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Re: Ideas to improve the board - post them here!

Postby Devotion and Hope » Sun Nov 30, 2008 1:17 pm

First, (((kqbear))). Hi. I am a WS of someone who is very needy in physical terms. And sometimes, I confess, it is very hard not to compare. But one of the most important lessons I've learned here is that our emotions and challenges as WSs are universal almost regardless of the individual circumstances. I hope you will continue to post; create threads that address your own truth and I believe there will be others who will get it.

Second, I've been giving thought to recent posts about private messages (p.m.s). When I first joined WS Forum, I often p.m.'d in an effort to get to know a member more personally, or to address an issue without "hijacking" a thread. I surely hope none of those p.m.s were taken amiss; in fact I made a few very close friends. But given that there have been some people who have posted their discomfort with unsolicited p.m.s, I wonder if we could add a sort of "permission" box in the Profile so that we'd know if we need to request permission first or if all pms are welcome.

And, Erin, (and Melody! hi! welcome!), I totally get it that the auto-responses you receive must be incredibly annoying, but I gotta' say I kind of miss the notifications that there's been a response to a thread in which I've participated. I try to log in often, but sometimes I miss reading something. Is there a way to reinstate the notifications but not permit the auto-responses?

more trivial: I'd love more emoticons. And maybe a way to post photos directly here?

finally, I'm still curious about the painting at the top of the new site. What is it?

no. now finally. Thank you Erin for all your hard work on this. Truly, being here has saved my life and my sanity.
Husband & love of 38 years passed away on May 25, 2009.
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