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Posted 7/28/2007 12:54 AM (GMT 0)
I was kind of sad tonight. My SIL called and said her and my bro and a neighbor wanted to come over and play cards and order pizza. I said no. My house needed picked up and I needed to clean myself up. I knew if I tried to do that I would be exhausted before they got here. Even though it's hard to be alone somtimes it just doesn't feel like it's worth it to try to do things. Boy I miss those days of just being spontaneous. The thing is people don't get it. It seems like I need at least 24 hours to really get myself prepared to have company or go some where. The days of Hey let's go to the movies is over. I wish people understood because I want them to ask me  to do stuff. I would like to do things I just can't jump up and do it. Than I feel so bad because I missed out. Oh well I'm sure you all know what I'm talking about. I just wanted to vent.

Love ya all

hope you have a good weekend

carol 

Posted 7/28/2007 1:42 AM (GMT 0)
Okie,

Know exactly what you are talking about.  I just wish at times I could jump up outta bed in the mornings, shower and dress and GO do my day like I used to do. I was one of those types that was up and out early and going all day long.  Not that way anymore.  My family called and asked me to go out to dinner with them tonight and I just couldn't do it.  I know a lot of like that here and it is sad and depressing at times.  How are you feeling these days with getting over the "bug" you had and stuff?  Hope you are much better.

Now I'm going back to bed.

Posted 7/28/2007 2:01 AM (GMT 0)
Carol,

You are not alone. My husband and his family want to drive to Corpus Christi this weekend and even though it sounded like fun, I just seem to anticipate having to recover from it all (its about a 2-3 hour drive). I had a very hard week as I hardly was able to get any sleep and I know this weekend I have to play catch up. My guilt though is that my hubby says if I don't go, he won't go and its his family that they want to visit. I have told him to go but he said no, he would stay with me. The guilt can be so overwhelming at times. I wish he would just go and have a good time. HUGS to you.
Posted 7/28/2007 4:54 AM (GMT 0)
Ladies, I could cry you a bucket full. You have now touched on probably my single most hardest subject! The "what used to be". People who don't have or never have had many real health problems never seem to truly understand those who do. Even if you were to take the time to try to explain it, it's like it just goes in one ear and out the other and no connection was ever made. You might even get a short sympathetic one liner, but then the subject is changed. This is true for me even having the physical (visual) disabilities I have left over from my car wreck and head injury. Our world today has desensitized people. It is a rare occurrence to meet someone who really has an understanding nature right off the bat...and if you do, I can almost guarantee you there is a personal or family trial that brought it to be. That is why your faith, first of all is so important; and second, those rare people who really DO understand. You must be strong! You would be amazed at just what you can bare. We can draw strength from each others words. As a matter of fact Carol, you were the first person that made me smile here! Thanks! Take Care! tongue
Posted 7/28/2007 5:48 AM (GMT 0)

(((((((Diane,Des,Sharen,))))))))), give you all a big hug!

Diane I am doing better the last few days. Thanks for asking.

You know I really wouldn't wish this on anyone but just for a week I wish my loved ones could feel like it feels to live my life. I am actually dreading talking to my sil again. I know she's gonna say "well it's not like we never ask you to do anything with us". They just don't get it. Yes I get lonly here. Yes I like company but no not on the spur of the moment. Than I feel guilty because alot of the best things people do are on the spur of the moment. I can't expect them to change their life for me. I get these feelings like they say "it's ok" just to make me feel guilty. and it works.

Des I'm sorry about this weekend. I know exactly how you feel. Feeling guilty over something you have no control over stinks.

Sharen, I'm glad I made you smile. At least you didn't say you were laughing at me. LOL tongue

Well it's going on 1 am here and I havn't slept yet. I'm trying to get off of sme of the heavy duty sleep meds. I am hoping that might help me not to be so wiped out all the time. Like ya sharen you got to have faith.

I think that's why I love all you so much. I don't have to explain myself to you.

love you all

carol

Posted 7/28/2007 10:01 PM (GMT 0)
Carol,

You sure don't have to explain yourself to us! I know just how you're feeling. You know, Carol, I've learned to make adjustments and not to apologize for them. While I always got dressed up and made sure my hair and face were fixed before anyone came over, now I've gone over to the "au naturel" look. If the house or yard aren't as perfect as I would have them, so what. That's one of the blessings of this awful disease. I've learned that things I used to think were important, like having things perfect, aren't important. We have to learn to reevaluate things if we're going to survive lupus with our sanity intact. So if someone calls for cards and pizza, ask them if they mind if your house is a wreck, and if they don't, throw a scarf on your head, brush your teeth, and put on your prettiest smile (under your oxygen mask!)

I try to be cheerful around my family and I don't bring up how I'm feeling unless someone asks. Then I'm brief. If someone wants to do something & I say I can't, they seem to understand. Some folks have kind of dropped off the map, but then were they really good friends to begin with?

I do know how you feel about the loss that comes with not being able to be as spontaneous as you used to be. If we had life to live over again, think of all of the things we would do differently. I know I would not rush through life and try to get so much done so quickly.

I'm sorry you're feeling down today and I hope you can find some way to comfort yourself. After all, you're doing the very best you can. And we love you!

Love,

Pat
Posted 7/29/2007 3:20 PM (GMT 0)
Carol, there is just so much loss with this disease. I could write an entire page (maybe more) about the things I miss and the things that this disease has taken away from me. It's hard not to get down about it every so often, we're only human. A few days ago my kids and hubby and I all talked about going to see a movie today, but I am so tired today that I can't imagine taking a shower and getting dressed to go and then deal with the drive and sitting through the movie and then the drive home. I felt bad telling my husband this morning that I didn't feel up to it. Then, when I did tell him, he said he didn't know if he wanted to go if I wasn't going. It was very sweet of him to say that, but then I feel guilty and I wish he would just take the kids and go to the movie. So many of the things I miss are lots of the physically active things I used to do like running, hiking, bike riding, playing soccer, etc, etc. I alos miss my pre-lupus body. I still don't recognise myself some days and am regularly shocked and surprised by what I see in the mirror. The flip side of this whole thing is that I appreciate things I never would have appreciated before. I am grateful for so many little things that I would have taken for granted before getting sick. I am grateful for the days that I have the energy to take a shower without a struggle, and the days I feel up to doing laundry or the days I feel up to taking my kids somewhere. I seem to live a lot more in the moment now and really savor the good moments that I would have take for granted before. I know I wouldn't make it through these hard times and these times of grieving nearly as well without the support of everyone here at this forum. Knowing I can come here where people truly understand the rollercoaster ride of this disease has been a life saver. I think everyone here is really amazing and that all of you cope remarkably well with everything that you've been given to deal with.
Posted 7/30/2007 10:20 AM (GMT 0)
Hello Carol,


I was reading these posts I sure do understand people who do not struggle with health issues just do not get it. So take it easy on yourself, pace yourself thats all we really can do and trust God to carry us through!

I see the rheumotologist again this friday the 3rd for blood test results and hopefully some answers.

My husbands drinking is out of control and he just doesn't understand the extra stress it puts on my illness.We have been together for 5 years married almost 4 and he has seen my health go down the tubes and says he is sick of it...I have had about enough of this senario....I have given him so many chances to get help and he just refuses.I gave up everything to move to Texas so he could be near his family and the thought of giving it up and starting new again scares me, depresses me and literally makes me ill. My only choice is to start looking for a room to rent but I really do not know that many people here in Texas.and being on disability leaves my resources low...

For 30 years I took care of sick and elderly folks and I miss it tremendously I just wish sometimes someone would take care of me.

Well enough griping and complaining I am having a sleepless night in Texas....

I hope you are doing ok

Love from Texas,

Sheryl

<edited to remove extra white space, no text was touched>

Post Edited By Moderator (Lynnwood) : 7/30/2007 10:19:13 AM (GMT-6)

Posted 7/30/2007 2:45 PM (GMT 0)
Spontaneous events cause me great chaos and makes my head spin. I have to say that is my greatest source of stress. I hate to be an organized methodical planner (it is just not me) but I have no choice. That is a lot of spoons to give up - the stress alone takes half away :) No one will understand unless they experience it. The next time they have the flu invite yourself over last minute with pizza and good intentions, when they tell you you are crazy, say "Oh yeah, I know exactly how that feels... If they are astute they will get the point, but even then it is quickly forgotten. I am tired of saying no and it seems there are no easy choices to make anymore. Do I have clean clothes or do I eat today? Not exactly a win-win choice. Had a horrible birthday this weekend. Boyfriend stood me up after making plans and then The Parents showed up and disrupted everything for a day and half w/ three arguments. Then my mom did her "poor me" imitation when she saw how wiped out I was and left me by myself to care for my kids (5 & 10) in that condition. Lovely. No clean clothes or food in the house now. Don't know why people with Lupus get depressed. - Kristin
Posted 7/30/2007 6:18 PM (GMT 0)
Petuniablue,
Your post responding to Carol really touched me. I feel so deeply for you. Please know that there is hope. If I can do it, anyone can. I was married for 10 years. The accident which gave me a traumatic head injury as well as physically disabled me was my husband's fault. This eventually started him to drinking too. He later tried drugs, and ended by having an ugly affair at his place of work. I too, had given up so much for him. At the end of my rope with the situation; only drawing disability for income and not even having relearned to drive yet--I had to step out on faith that I could do it and I did not have to live that way. You can do anything with God's help! That was six years ago but reading your post made it seem like only yesterday. I was so scared. And it did take a lot of courage AND work. I don't know what the answer is for you. I'm not advocating just to run out and get a divorce as I believe that God created marriage and I respect it as well as the responsibilities He gave us in it. I'm simply supporting you and assuring you that whatever the answer is--you can handle it! You are not alone! My thoughts are with you, Stay Strong!
Posted 7/30/2007 11:11 PM (GMT 0)
Carol, I think you're feeling better today. You're so sweet and always worrying about everyone else.

Sheryl, I too am worried about you. When you talked about your husband being "sick" of your illness it made my heart break. We're all sick of this illness, doesn't he know that?

I'm glad you're not buying into that nonsense. Sharen's right - whatever decision you make, you can handle it. But it must be scary to be in a new place whle you're trying to make a big decision like finding a place to live on your own. Don't try to do this alone. We're here for you any time you need to vent or talk.

Hang in there girlfriend,

Pat
Posted 7/31/2007 2:04 AM (GMT 0)
Hugs to all of you! So many here are going through so many difficult things...things that would be hard whether one was battling a serious illness or not!

I can totally relate to the feelings of loss. One thing I miss most is physical activity; just being able to say, "Yes" when someone suggests a walk or a trip to an outlet mall or another area where I know I'll have to walk a long time. I used to love to go walking. And gardening. Man, I miss being able to get out there and do an "Edward Scissorhands" on my shrubs, and haul off the trimmings, sweep, pull weeds, lay out new mulch...all in one day! Now I'm at the mercy of my husband, who, despite being wonderful in many ways, is just NOT concerned about appearances. So my pretty yard is something else I've had to give up.

When I do go out, I just walk by the scraggly shrubs and unedged driveway and remember how nice it used to look. And hope for the day I can afford to pay a gardener!

I do some yoga DVDs at home sometimes, but I cannot get up and down off the floor. So I have to skip the exercises that aren't from a standing position. I've tried doing them on the bed, but it's too soft. Oh well. Even more, I miss getting on the floor to play Hot Wheels or Lego's with my little boys.

But like others have said, I have such a deeper appreciation for the little things. And I never lose hope that one day I'll be in full enough remission that I can do some of these things again.

Hugs all around!

Posted 7/31/2007 2:32 AM (GMT 0)
Sheryl--
I live in a cheap small town a few states over and they are always looking for CNAs for the little local nursing home and home care. Rents and home buys are cheap here, no credit check owner financing zero down, like 300 a month, some places for rent are 275. They aren't the taj mahal, but it is a relatively safe little town with a lot of services here for the retired and disabled, funds and stuff that are always all used up everywhere else. Let me know if you really need to make a change, you would be near the atlantic coast. there is a very good rheumie here and some other good docs and a huge city is an hour away. Take care, whatever you do. I've been there for so long before and finally went through several throwing out of the house ordeals and finally he quit, but it is a day to day struggle for him and I sometimes envy those who don't have to go through this with their husbands. I wonder how his drinking is supposed to be helping your illness? Well, he is sick too, but it is not a disease you can necessarily help him with. There are options if you wish to move. You could probably set your hours as a CNA or home health care and may be able to qualify for it here since we have extra resources. I really feel for you, it can be maddening. I will pray for you.

What I miss? My brain and my self-confidence. But how can you be self-confident when your body keeps betraying you every time you get yourself feeling good? I guess maybe its a yin/yang thing, yes I'll keep telling myself that....
Posted 7/31/2007 8:28 AM (GMT 0)
Carol,

Hey girl, what are you doing up and posting on the forum at 2:45 am. Let's sleep in tomorrow!

Love,

Pat
Posted 7/31/2007 10:17 AM (GMT 0)

LOL hey Patty, like you I can't sleep either! It's making me crazy and I didn't have that far to go as it was! tongue I really hate nights like this. It's gonna be light out before I fall asleep.

Sheryl like the others said I hope your husband gets some help before he looses you completely. Addiction is a hard thing to kick.

love ya

carol

Posted 8/10/2007 7:42 PM (GMT 0)
Hi, I just joined. I have Lupus sle and was doing a google search on guilt. Feeling guilty all the time because I have to makeup excuses why i can't do this or that, and finally telling my husband that I don't feel well!!! And then all the fallout from that. It was good to read your posts here. I am not the only one that feels these symptoms and feels the guilt and wishes my life was like it used to be. Now I can bookmark this and read your posts. I don't belong to any support groups and I'm alone most of the time in a city I moved to for my husband. So I needed to find some sort of support or forum to answer my questions or help me. Thank you all!! Susie
Posted 8/10/2007 8:42 PM (GMT 0)
Hi Susie,

So glad you joined us!!! It sure does help to have a support system with people that do know what you are going through. It always makes me happy when someone joins and can find that here. This group is wonderful and we are so supportive of each other. We come here to talk about our illness, vent, cry, cyber hugs... and all of that helps so much. I have learned so much here with these wonderful people and I know you will too. Please do keep reading and posting... you are now a part of our family. :-)

Take Care
Posted 8/13/2007 6:26 AM (GMT 0)

Thank you!  I am glad I found you all, I have a feeling I'll be visiting often and learning some helpful ideas to manage daily life and hopefully help others on my "good days"!  Like I said, I found the forum and read everyone's post and really felt like it was a great source of support and information.  Thank you and I'll be hanging around!!!  Susie tongue

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