Forgive me if this sounds like a whine. I really don't mean for it to.
Another post got me to thinking about this...about the NEED for there to be support systems in place for those who are chronically ill.
Supportive communities. Support services.
I sure feel like I'm living on an island sometimes. I'd just like for someone to bring over a casserole once in awhile.
I have family nearby that KNOWS. And if I ASKED for someone to bring over a casserole, I'm sure it would be done. I don't want to ask, though. Not the asking type.
Ok..this is starting to sound too much like a whine. I'll stop now.
Posted by carly (Member # 14810) on :
maybe I'm responding like this b/c I'm "in a mood", but: a phrase comes to mind "You're preaching to the choir!"
I agree. If I asked, it would (probably) be done. But why should I have to ask?
If support groups are established to do those things, isn't that the same thing as asking?
I don't think you're whining, but if there's an ember there I just threw gasoline on it.
Posted by John S (Member # 19756) on :
We don't look ill to those who are "normal", so we can't expect them to treat us that way.
Posted by novy (Member # 25987) on :
i'd be more than happy to mail you a casserole ... Posted by Keebler (Member # 12673) on :
- If you don't ask, you can't voice dismay. They can't read your mind. Tell them things that would help. Give some choices, but be clear about dietary requirements and how they can be most easily achieved.
By staying silent you are doing no good for neither yourself or others who might enjoy helping, being part of a support system.
Rather than asking outright, you can make a general statement about the kinds of things that you need help with and are open to anyone who wants to sign up for something on the list. -
Posted by Misfit (Member # 26270) on :
Maybe I just think differently. For instance..my MIL is about to have cataract surgery. I KNOW she's going to need someone to drive her. I throw my hat in the ring, in case I'm needed. As it turns out, I am. And I'm happy to help.
That's just an example. And I've had conversations with family members about the difficulties in simple, everyday tasks. I have explained things in great detail. Now..I get a lot of "oh, that must be rough"...but that's it.
Another family member had surgery and was laid up. When I made casseroles, chili, spaghetti, etc...I made extra and took it over. I knew the need was there, and didn't have to be asked.
Maybe I just expect too much. I'm not going to split hairs over a support group designed to help people with challenges vs. family members. For me there is a difference. I would find it easier to ask for help from a group, as opposed to asking someone closer to the situation.
I've never done anything expecting anything back. It might sound that way, but I've never been like that. And I don't really think I ever did anything special. I knew the need was there, and I responded without being asked.
And yep..this turned into a whine, alright. Just one of those days. I can't tell y'all how much I hate having this disease. Some days more than others. I HATE THIS DISEASE.
Posted by METALLlC BLUE (Member # 6628) on :
I agree with you. Fortunately for me people in my life do this now. They didn't used to.
Being alone and not having people keep reaching out to you even when you've long stopped reaching out to them still hurts.
I have friends now that call me and know right from the get go that I probably can't go, but they ask over and over and over, year, after year. That is serious love and friendship, and it is so incredibly rare.
I sort of feel like I earned it through the enormous amount of suffering I endured, but apparently it isn't earned, it's good fortune after a long long line of unfortunate events and relationships.
Posted by Lymetoo (Member # 743) on :
You're NOT whining, Misfit!!
I think John is right. We look too normal for anyone to think we are ill.
I basically 'covered up' my illness on top of that... so I really CAN'T complain about no one helping me!
Posted by Misfit (Member # 26270) on :
It's just been a bad week, y'all. DH has had to work long hours all week, and worked saturday to boot. He usually picks up some of my slack, but hasn't been able to. Maybe I'm feeling some guilt along with everything else.
But it's been a bad week.
I'm past covering up anymore. I look sick now. Not happy about that, either. But I would have to actually SEE someone for them to notice if I look sick or not.
I could have used it this week. I really could have. Bless my 10yo..he's able to help. But he can't cook. Microwave hot dogs aren't my idea of cooking, lol.
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