guilt trip

[Guest guest]

Hi TerriI have that same problem until I found a grocery shopping online. I don't know if you have that kind of service in your area but its savior to me also since I ride a scooter. "You cannot do a kindness too soon. because you never know how soon it will be too late." Re: Re: guilt trip

Terri, In regards to grocery shopping, before I was first diagnosed I went with my husband every week rountinely. After the symptoms and diagnosis, I couldn't go at all. By the time I got halfway thru the store, I was hurting so bad, I had to go sit in the car. There was a couple of times that I didn't, and I ended up passing out by the time we got home. That was 4 years ago. Since then my husband goes alone every week. I know he hates it, but he realizes I can't take it. Sometimes I feel so guilty when he gives me dirty looks and gets aggravated when he has to some weeks. I tried to suggest the carts with the seats, but he just won't agree to that. He doesn't want to "look different". It embarasses him. The same with other stores that I can't walk thru. If I go to the mall, I make it thru 2 stores then that's it. I have to home and take a long nap

after, just like

you. Whew, did I go off about that subject, I guess your post just hit a nerve! lol Hugs, Debbie T. Co-Moderatormosaicgirl1 <mosaicgirl1@ yahoo.com> wrote: Bonnie,I agree with Rose. I forgot to include that in my post. I used to workhard all week then sleep all weekend so I could do a great job at work. How screwed up is that. Now I would be happy to only have to sleep onthe weekends. I pushed myself too hard and now I pay for it. When I amflaring I have to sleep 3-4 hours during the day then go back to sleep 9hours a night. Do you think I get much done now? My biggest thing isgrocery shopping; I might sleep the rest of the day after that.I should have gotten my priorities straight first before I got likethis. But I didn't and now I deal

with it. Don't make the samemistake. Money isn't everything.Terri G.~~~~ *** ~~~ *** ~~~ *** ~~~~The Neurosarcoidosis CommunityNS CHAT:- FAITH CHATS: WEDNESDAY 9PM EST. 8PM CENTRAL. 6PM PST SUNDAY 12 MIDNIGHT EST. 11PM CENTRAL. 9PM PSTOPEN CHATS: THURSDAY 9PM EST. 8PM CENTRAL. 6PM PSTSUNDAY 4PM EST. 3PM CENTRAL. 1PM PSTCHATROOM LINK: http://www.emxpc. net/chat/ index.php Message Archives:-http://groups. yahoo.com/ group/Neurosarco idosis/messagesMembers Database:-Listings of locations, phone numbers, and instant messengers.http://groups. yahoo.com/ group/Neurosarco idosis/database

[Guest guest]

Hi girls, this topic hit home with me, too. If I go to church, even with my wheelchair, I am so totally exhausted that the rest of the day is shot...and maybe the next day, too. Once I went but I was in so much pain that I was almost crying by the time the service was over. It's either exhaustion or pain that inhibits what I do. If I'm having trouble with both on a day I 'know' I will be crying at some point and I figure why put someone else through watching me. I know it frightens other people and I find it somewhat humiliating at times when I used to 'have-it-all-together'. I haven't driven a car or gone grocery shopping on a regular basis for over seven years. I'd really be up the creek without a paddle if something ever happened to my husband. But I really do try to do as much as I am physically possible(which isn't much) able to do. I do try to do all the

paperwork in the house...and I have made some big goofs in the checkbook but he still rather I do it that than him. I sure am glad he adores me...but I am not always sure why anymore. My town is pretty small but I'll have to start asking about grocery deliveries cuz the more people who ask the more likely they'll see the demand for the service, right? I order aLOT of other stuff online so why not groceries? Hang in there girls and try to look for and concentrate on the positives in life cuz dwelling on the crappy parts will just make you feel worse. EVERYBODY, I mean, everybody!, has something hard in their lives to deal with. At least that's what I tell myself when I am feeling awfully sorry for myself. (Once a week to be sure!...lol.) hugs S. Shyrose Keira

wrote: Hi TerriI have that same problem until I found a grocery shopping online. I don't know if you have that kind of service in your area but its savior to me also since I ride a scooter. "You cannot do a kindness too soon. because you never know how soon it will be too late." Re: Re: guilt trip Terri, In regards to grocery shopping, before I was first diagnosed I went with my husband every week rountinely. After the symptoms and diagnosis, I couldn't go at all. By the time I got halfway thru the store, I was hurting so bad, I had to go sit in the car. There was a couple of times that I didn't, and I ended up passing out by the time we got home. That was 4 years ago. Since then my husband goes alone every week. I know he hates it, but he realizes I can't take it. Sometimes I feel so guilty when he gives me dirty looks and gets aggravated when he has to some weeks. I tried to

suggest the carts with the seats, but he just won't agree to that. He doesn't want to "look different". It embarasses him. The same with other stores that I can't walk thru. If I go to the mall, I make it thru 2 stores then that's it. I have to home and take a long nap after, just like you. Whew, did I go off about that subject, I guess your post just hit a nerve! lol Hugs, Debbie T. Co-Moderatormosaicgirl1 <mosaicgirl1@ yahoo.com> wrote: Bonnie,I agree with Rose. I forgot to include that in my post. I used to workhard all week then sleep all weekend so I could do a great job at work. How screwed up is that. Now I would be happy to only have to sleep onthe weekends. I pushed myself too hard and now I pay for it. When I amflaring I have to sleep 3-4 hours

during the day then go back to sleep 9hours a night. Do you think I get much done now? My biggest thing isgrocery shopping; I might sleep the rest of the day after that.I should have gotten my priorities straight first before I got likethis. But I didn't and now I deal with it. Don't make the samemistake. Money isn't everything.Terri G.~~~~ *** ~~~ *** ~~~ *** ~~~~The Neurosarcoidosis CommunityNS CHAT:- FAITH CHATS: WEDNESDAY 9PM EST. 8PM CENTRAL. 6PM PST SUNDAY 12 MIDNIGHT EST. 11PM CENTRAL. 9PM PSTOPEN CHATS: THURSDAY 9PM EST. 8PM CENTRAL. 6PM PSTSUNDAY 4PM EST. 3PM CENTRAL. 1PM PSTCHATROOM LINK: http://www.emxpc. net/chat/ index.php Message Archives:-http://groups. yahoo.com/ group/Neurosarco idosis/messagesMembers Database:-Listings of locations,

phone numbers, and instant messengers.http://groups. yahoo.com/ group/Neurosarco idosis/database

[Guest guest]

Debbie,

Sorry that hit such a nerve, but I guess that has a lot to do with our

lack of independence sometimes. I know it is not so much the shopping

but the fact that you got out and made your own decisions, used it as

leisure time etc., meant a lot to you.

My husband used to get aggravated but I reminded him how much I used to

love doing those things. I do use the electric carts in the large

stores. I don't care what anyone thinks (including my husband) and it

allows me to have additional energy to do other things.

Isn't it crazy that we used to take all of these simple little things

for granted? I know I have been humbled many a time in this regard.

Terri G.

[Guest guest]

Keira,

We don't have anyone doing it locally right now; one store tried and

gave it up. Hopefully, someone else will give it a try.

I do a lot of shopping on the net now and it makes me feel like I am

doing what I want without having to ask someone else for help. There

are some weeks I don't drive (like last week) because I feel like my

brain is disconnected, so that way I don't feel isolated.

Thanks for your suggestion. I appreciate it.

Terri G.

[Guest guest]

S.

Hey lady! I am sorry you can't go to church. Is there any way someone

could tape the message and bring it to you? I know a lot of churches

around here do that for people who can't come to them.

Have you done any painting lately? I would love to see some of your

stuff.

Take care.

Terri G.

>

> Bonnie,

>

> I agree with Rose. I forgot to include that in my post. I used to work

> hard all week then sleep all weekend so I could do a great job at

work.

> How screwed up is that. Now I would be happy to only have to sleep on

> the weekends. I pushed myself too hard and now I pay for it. When I am

> flaring I have to sleep 3-4 hours during the day then go back to sleep

9

> hours a night. Do you think I get much done now? My biggest thing is

> grocery shopping; I might sleep the rest of the day after that.

>

> I should have gotten my priorities straight first before I got like

> this. But I didn't and now I deal with it. Don't make the same

> mistake. Money isn't everything.

>

> Terri G.

>

>

>

>

> ~~~~ *** ~~~ *** ~~~ *** ~~~~

> The Neurosarcoidosis Community

>

> NS CHAT:- FAITH CHATS: WEDNESDAY 9PM EST. 8PM CENTRAL. 6PM PST

> SUNDAY 12 MIDNIGHT EST. 11PM CENTRAL. 9PM PST

> OPEN CHATS: THURSDAY 9PM EST. 8PM CENTRAL. 6PM PST

> SUNDAY 4PM EST. 3PM CENTRAL. 1PM PST

>

> CHATROOM LINK: http://www.emxpc. net/chat/ index.php

>

> Message Archives:-

> http://groups. yahoo.com/ group/Neurosarco idosis/messages

>

> Members Database:-

> Listings of locations, phone numbers, and instant messengers.

> http://groups. yahoo.com/ group/Neurosarco idosis/database

>

>

[Guest guest]

Terri, this has also helped me to realize the barriers many of us face. I used to gripe to myself about "all" the handicapped spaces available while I was driving around in circles trying to find a spot. Now I find myself griping that the stores need to have more handicapped spaces. Same thing with sidewalk ramps. When I was at the Bug Bowl, many of the ramps were bumpy & uneven, where my son or one of the kids would reach out to steady my scooter. I never noticed those kinds of things before. Maybe that is one of the gifts(?) of chronic illness, a broader perspective.

Ramblin' Rose

Moderator

Reply-To: Neurosarcoidosis To: Neurosarcoidosis Subject: Re: guilt tripDate: Tue, 01 May 2007 17:46:38 -0000

Debbie,Sorry that hit such a nerve, but I guess that has a lot to do with ourlack of independence sometimes. I know it is not so much the shoppingbut the fact that you got out and made your own decisions, used it asleisure time etc., meant a lot to you.My husband used to get aggravated but I reminded him how much I used tolove doing those things. I do use the electric carts in the largestores. I don't care what anyone thinks (including my husband) and itallows me to have additional energy to do other things.Isn't it crazy that we used to take all of these simple little thingsfor granted? I know I have been humbled many a time in this regard.Terri G.

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[Guest guest]

Rose,

I agree that it gives us a broader perspective. It also makes us

appreciate what we do have not what we don't. I get to wake up every

day and see the beautiful sunshine, hear the birds sing, hear the rain

on the roof, laugh, cry, enjoy my family (most of them)....these are all

things I took for granted before. Never again.

Terri G.

[Guest guest]

Hi Terri,You're welcome. I know.... it does not make me feel helpless and dependent!! Lalani-Keira "You cannot do a kindness too soon. because you never know how soon it will be too late." Re: guilt trip

Keira,

We don't have anyone doing it locally right now; one store tried and

gave it up. Hopefully, someone else will give it a try.

I do a lot of shopping on the net now and it makes me feel like I am

doing what I want without having to ask someone else for help. There

are some weeks I don't drive (like last week) because I feel like my

brain is disconnected, so that way I don't feel isolated.

Thanks for your suggestion. I appreciate it.

Terri G.

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