please see your other post.
i have commented on there for you.
I have been with my partner for 6 months and she told me after we were close that she had lupus... I think the only reason she told me was because of the mood swings and I wasnt dealing with it... Anyway we have been going back and forth with the mood swings but at times I feel like she is shutting me out... We love 30 minutes apart and see each other on the weekends when we can... I can't tell when she is in pain when she is not with me... It hurts not knowing why she has claimed up and won't talk to me... I can't just jump up and head down there because I have kids and so does she... But itis crazy because when she is in pain and with me we are good she wants me to lay down with her and hold her... but when we are apart... I just don't know what to do..
please see your other post.
i have commented on there for you.
For Steve... I didn't see the reply from you... But today was not a god day... she told me that she didn't think it was fair to me if we were to stay together... she stated that she is about to start the mdication for lupus and it will make her unearable to deal with... she will be evil towards me because she will not want me there to see her in that condition... she loves me too much to do that... That she wants to see how this thing is going to effect her and if she will be able to get a control over the way the medication will make her feel. And that she does not feel like she can do that and give to me too...I held my composure and let her know that for me to love her the way I do I have to take her feelings in consideration and let her do what she has to do... I let her know that i am not happy about her decision in know means and it hurts but I will be here when she needs me... I will continue to love her and when and if she is ready she knows where I am... She said that she wil always be my best friend and that she will continue to talk to me (and her norm is to cut everyone off when its over no contact) and we can still hang out and be friends... that the decision was up to me... But honestly I don't know how I am going to be able to handle this... This is tearing me apart... My love for her is stronger and more passionate than any person I have ever been with... My heart hurts so bad... and I don't know how to stop the pain... but I don't want her to see my pain either... we are so compatible, we have so much fun when we are together great conversations and we share common likes and dislikes... She is my confidant, my lover, my best friend... I lost all that in a matter of minutes.... What do I do???
I am so sorry that this is happening to both of you. Being diagnosed with a chronic disease is so hard on everyone, especially family and friends who want to help but can't. My first thought is that you both need emotional support, and since you are the one that is here asking for help, my suggestion is that you see a counselor to help you deal with whatever lies ahead. Maybe your friend would be willing to join you at some point, but you can only change things for yourself - she will have to chose her own course.
If she is a single mom, getting this diagnosis is probably overwhelming and terrifying. Being in a long distance relationship may be more than she feels she can handle right now. I know when I am in pain or don't feel well, I just want to be left alone - even by my husband, whom I love very much. On the other hand, I try to behave as normally as possible even when I am flaring because I don't want to be a burden, so my husband often thinks that I am doing well, even when I'm not. And that's OK because I don't want him to constantly worry or feel bad for me. Maybe your friend is the same way - she doesn't want to talk about her health issues or focus on the pain.
Lupus can definitely affect a person's moods, directly (by causing depression, anxiety, paranoia and even hallucinations) or indirectly (pain, disability, worry about the future). It is possible that getting on the right combination of medications will help even out your friend's moods. If she is taking high doses of prednisone, that can rough on your moods. Most people aren't on high doses long term, however. The other drugs could possibly make her feel rotten, but most people do pretty well and actually feel much better after a few months.
I know this is horrible for you, but if you are able to take a step back and give your friend the space she is asking for, things could take a turn for the better. The fact that she still wants you in her life is a good sign. She just not be able to handle more than friendship right now. I have always told my girls to marry their best friend, that way even if the romance wears thin, the core is still there. You sound like a great guy, who is willing to stand by her through the hard times. Remember to take care of your own emotional needs, since your primary support person can't carry that load right now.
can she stop you friom being there for her ?
can she stop you from visiting ?
can she stop you from phoning ?
just be careful not to become over bearing.
true love can win out.
Thank you for the advice and the insight... As you explained it above is exactly how it is.. I am willing to give her space... I just don't know how much space to give her... I mean she say we can call and talk to one another... But Can I??? Or would I be pushing her??? I text her this morning that I love her... she replied good morning to you 2... I mean how do I know if I am pushing too hard??? Or do I just stop calling and wait for her to reach out??? I could lose her that way...
Thank you Steve... I will always be there for her... I will visit her when she allows... so yes she controls that... and as for phoning... I don't want to be over bearing so I have to figure out when is a goo time to call and how often to call...
I just saw this but my philosophy on love has always been that loving someone, truly loving them, can never be overbearing. I can understand being sick and embarassed by the illness, just wanting to be left alone..no questions no fixes. I become paranoid that people think I am lying or just lazy. It fuels that bad mood and only makes me want to be by myself more. I get angry when people tell me it's going to be okay because it's not okay and never will be again. When you go from living your life, taking it for granted and never being sick to one day being unable to lift your child or put on a shirt it's NOT okay. I just know that those words are like nails on a chalkboard to me.
BUT I always welcome someone asking or phoning to see how I am and just being there to listen...no judgements and no advice. Just listen to me, believe that I suffer and reassure me that you're there.
I'd say call her as often as she allows but try your luck every day. Call to talk, call to catch up, ask her how she's doing and offer your help if she needs it. Chances are she will trust you enough eventually to let you back in.
I find for myself that it's very hard to trust even my husband nowadays. It's human nature to reject the weaker, sicker humans. It's the animal way. It's not a far stretch to assume no one wants to put up with us. She's built a wall of protection in case of rejection. I'm probably rambling in a less coherent way but I hope you get the idea!
lots of hugs
Whenever I don't feel like doing it, I always remember that tomorrow I may not be able to do it. Then doing it becomes a blessing instead of a burden.
I got some stuff goin' on.
Sorry to hear that you're going through this. From my perspective, and most of us here, we understand what its like to be sick but not many of us understand the other side of what it's like for our loved ones. When I had my first flare which lasted for a little while I was hideous to be around, I couldn't do anything for myself nor did I really want to talk or be around anyone else. I was one big emotional mess, coming to terms with having a chronic illness that cant be cured and dealing with all the aches and pains that it brings. But it does get better. Then when you feel good physically (maybe not good for some, but better at least) you realise you do want to be around people and the ones that stuck around through those shit times are the ones that mean the most. So my advice through all of this....stick around, show her you're still there no matter what. Some of the things I reflect on now from when I was sick are the things that people did for me, makes me pretty grateful for the people I have in my life and I always remind myself how lucky I am to have my family and boyfriend!
Diagnosed with SLE and Antiphospholipid Syndrom - June 2010