Siskiyou,
I hope that this site provides a "safe" place to say what we feel without fear. You have great advice, please don't feel afraid to share it.
XOXO,
DeAnne
What does "safe" mean, to you? I am confused by the statement.
whathappensinvegas said:
Siskiyou,
I hope that this site provides a "safe" place to say what we feel without fear. You have great advice, please don't feel afraid to share it.
XOXO,
DeAnne
Unshoreandscared,
What I meant is that you should feel able to say what you wish without fear of anyone judging or belittling your feelings. We all process this disease differently and cope differently and your way may not be the way others deal with it, but you shouldn't be afraid to say what you think. This is what Sis said.
I hope that cleared it up for you :)
XOXO,
DeAnne
I agree with everyone. I went to the lupus foundation website and printed out everything that I thought might help give a little perspective and had my husband read it. I also played him the spoon theory video along with quoting some of the things that people here have said. Remember as hard as it is for us to wrap our brains around it is even harder for them. Talk to your boyfriend and be totally honest with him. I also explained to my husband that asking for help all of the time makes me feel like a total failure because I was always a very independent person. Over time he began to understand and instead of making me ask he started to pick up on things and notice the signs and would just do. It is a long process but over time it can be managed. Information and communication are key!! Good luck!! Stay strong 
Anybody up
Just pray about it, share your feelings honestly with your boyfriend so, he can get a better understanding of how your feeling on your “not so good days”… You both need each other to balance out your world. I broke up with my boyfriend of four years because he was selfish and didn’t care about me during 2 years of this ripple effects of illnesses.
What a beautiful suggestion! In some situations, the only thing you can change is your mind...;-)
Latina said:
As an educator, if I had a bad class that year, I would count the days. Ill as I am now, I count the hours 'til tomorrow, because "I will feel better tomorrow". Tell yourself you only have so many days until the end of your internship. At the end of every day, scratch off another day in your mind, and it makes you feel as if you really can endure until the end. This mind exercise will actually brighten your mood to go home less stressed. Get a jar and fill with M&M according to the number of days left in your internship. Eat one at the end of the day and see the jar emptying. The sweetness in your palate will help you smile.
Trust me. Most school years I cried on the last day of school. It was rare to be glad to see a class go, but...I always hoped that class got at least wiser that year. Yes, I did try these tricks, and others. They help me cope now.
My daughter got a tatt in honor of me having lupus, I am in tears I think it’s the best thing anyone has ever done for me
NCar48
Please join the WOMAN's GROUP on here if you havent already.
I literally just made a POST called MOOD SWINGS!!!!!! and this was exactly what i was talking about.
It is so hard to suffer and not make those around you to suffer with us! grrrrr, i hate it!
Pther Members on here are so good at giving PRACTICLE suggestions yu can ACTUALLY apply... so I am am going to try to lend some tips that may ASSIST YOU.
1.Be aware of your BAD days. On those days.... ask those closest to you to be patient with you becuase your having a difficult time coping with the pain physically and mentally. then smile and leave it at that.
2. EVERY chance you have to say "i love you, I appreciate you, THANK YOU. I am so grateful for your support , I am greatful for your love in my life....etc// etc."
4. Being so busy- can make those in your life feel unvalued- with LUPUS added to that... You will have to go the extra mile to VALIDATE YOUR love and their IMPORTANCE in a small way at EVERY chance your given!
Give a hug. Look at them in their eyes when they are talking. Give them full attention even if only that moment.
* please share how things are going...i know there are losts of responses. but we do check back on your post to see how ur doing
i am up! :)
Syeetha story said:
Anybody up
agreed. ANY friend in your life..... boyfriend... fiance... etc...... that doesnt show concern for you when your ill ---- may be on their way out of your life....
I would hope those clotest to us- is concerneed about our well being.
wishing much success for you.
I am married now. But yes... i was just diagnosed when we were dating... and i coped. and he was patient ... but horribly selfish THEN. but it was lack of undersandng LUPUS.... not becz he didnt care.
He is amazing now.
Queenie said:
I agree with everyone. I went to the lupus foundation website and printed out everything that I thought might help give a little perspective and had my husband read it. I also played him the spoon theory video along with quoting some of the things that people here have said. Remember as hard as it is for us to wrap our brains around it is even harder for them. Talk to your boyfriend and be totally honest with him. I also explained to my husband that asking for help all of the time makes me feel like a total failure because I was always a very independent person. Over time he began to understand and instead of making me ask he started to pick up on things and notice the signs and would just do. It is a long process but over time it can be managed. Information and communication are key!! Good luck!! Stay strong ;)
HI DeAnne!!! how are u this evening.,,,?
I agree ... this is the place where we get each other... the fear.. the panic... the UNKNOWN... the stages of lupus... or progression...
HERE we can talk without fear of JUDGEMENT. it's definitely a safe place for convo!
whathappensinvegas said:
Unshoreandscared,
What I meant is that you should feel able to say what you wish without fear of anyone judging or belittling your feelings. We all process this disease differently and cope differently and your way may not be the way others deal with it, but you shouldn't be afraid to say what you think. This is what Sis said.
I hope that cleared it up for you :)
XOXO,
DeAnne
I haven't been on here in a bit because I just finished my Master's program, so life has been crazy. Hope everyone is doing well though :-)
Have you ever read the "spoon theory"? I just recently got up the nerve to ask my husband to read it and since then he has been so much more understanding. Before I was diagnosed I would hide how bad I was feeling most the time because I didn't want him to think I was a hypochondriac. I remember feeling so sick and having overwhelming fatigue but he would say things like" your always sick and tired". I would sleep when he was out but get out of bed when he was coming home because I was afraid he would think I was lazy. I had so much guilt and depression because I felt ill all the time. Now that I know what is going on in my body it is easier for me to deal with it, yet I always feel bad when Im in bed. I don't want my children to remember me like this. try looking up the "spoon theory " if you haven't already read it. It really helped me, to forgive myself and take one day at a time.