my partner has SLE

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TammyJ
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Date Joined Feb 2011
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   Posted 2/5/2011 12:49 PM (GMT -6)   
Hey--I found this website after a long hard road of humbling myself to my partner that I don't know how to help her or take care of her. I know I love her, but I don't know how to love her with SLE. I'm committed to to making changes within myself that will remove me from the center of the universe so I stop casting such a large and painful shadow over her, but I'm not sure how to do that. I know that I have to keep talking and learning about what it must feel like to be powerless over your own body. I also know that I must learn to identify with the guilt and fear she has. The more I try to be a part of her chronic illnesses the more I am pushing her away. Nothing I know how to do in regards to nurturing is working with her my actions are pushing her away. I need help understanding what she feels like. Am I in the right place to ask for help? I was filled with the fear of losing her and the more I tried to hold on to her the farther away she went form me. Thank you Tammy

Hickoryone
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Date Joined Feb 2011
Total Posts : 32
   Posted 2/5/2011 3:49 PM (GMT -6)   
Tammy,

Like with any chronic illness, those around the person suffering suffer too.

I believe educating yourself on the disease, lupus, or as I call it, "Poopus" will help you in understanding what she is going through.

I too am a *** with a partner and it has been difficult from my perspective; I am the one with the Lupus.

The song, "Diamonds falling down" by Rob Thomas was written about his wife who has Lupus....it is perfect in description, if you imagine what his lyrics mean, of how it feels from his side and how difficult it can be.

I know there are days when I push people away....I do this because I can barely deal with how I feel that day let alone deal with things like relationships, friendships, chores, etc.,

There is a certain amount of depression that comes with being diagnosed with a chronic disease like Lupus...also anxiety. Imagine the grieving process when you loose someone dear to you...the stages of grief....most times those with chronic illness go through the very same stages.

Sometimes the effects on the neurological system, in Lupus, can cause anxiety, depression, and other abnormal behaviors in a person. Add to that the medications used to control the symptoms which have a entire list of both physical and mental side effects....you then begin to see all the variables.

Have you spoken to her about how she feels? What it's like to have Lupus? Is she sad? Is she anxious? Is she afraid? It's important to not only have been witness to the affects of Lupus but to ask the person with Lupus what it feels like; you can learn much in doing this and in-turn it will assist you in knowing what to concentrate on.

I hope things go well for you.....my best...

TammyJ
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Date Joined Feb 2011
Total Posts : 51
   Posted 2/5/2011 4:11 PM (GMT -6)   
Thank you do much--instead of asking her how she feels I did the opposite and tried to pretend everything was ok--that is all I knew how to do--but it so the wrong approach. I wanted to take her mind of her diseases and so I constructed this wonderful life that didn't really include her even though it was for her. When I thought I had asked her if she would like to move in and the like she said what I actually did was tell her this is when you can move in. my approach has been all wrong--I now know that. She is in a flare up and just as you described she has pushed me away because she can barely deal with herself let alone me taking the wrong approach with her. we have a long road ahead and as much as there are times in life that love is not enough love is a beginning. We really do have the budding of something special between us and we do love each other. If I can be supportive, ask her how she feels and listen rather than tell her how we are going to deal with the chronic illness then we will have amazing time together. Thank you so much--I was feeling so alone and she was too sick to talk to until last night when finally we were able to talk. Tammy

Hickoryone
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Date Joined Feb 2011
Total Posts : 32
   Posted 2/5/2011 4:41 PM (GMT -6)   
You are very wise in your assessment of how what you do affects her, etc.,

It is very courageous and kind.

My "partner" said she always assumes everything is fine as I don't explain fully how I feel; I tend to minimize it with simple things like..."My wrists ache." When really I should be saying, "My fricken wrists hurt so bad, like toothaches and I can't tolerate it!" Does your "partner" do the same?

I think this comes from a fear of feeling like a hypochondriac if you say too much about it too frequently and it is something those with Lupus know very well. We look fine by outward appearance and society has this thing that if your not gushing out gallons of blood...nothing is really wrong with you. I know this from being hard of hearing....it can't be seen, my hearing deficit but it exists as I exist.

Don't be surprised if she doesn't share too much at first regarding her feelings.....that is normal too because sometimes we haven't processed the emotions we feel well enough ourselves to relay them back to others. As she begins to trust that you will not judge her as a hypochondriac she will begin to give you more of how it feels.

Hickoryone
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Date Joined Feb 2011
Total Posts : 32
   Posted 2/5/2011 4:51 PM (GMT -6)   
Turned this into a two pager instead of a rambling one page.....

People in here will be helpful to you in terms of how it feels to be the one with the chronic illness....this will be helpful to you in many ways as there are many dimensions when one is faced with a chronic condition. Learning, as I said in my first post, all you can about Lupus and it's affects will help you tremendously in understanding the mood swings, depression, anxiety, fatigue, pain, fear, etc.,

Lupus can be a horrible disease and if you can imagine every part of the human body, all the muscles, bones, lungs, heart, brain, blood, arteries, eyes, mouth, etc., as potentially being affected you begin to understand it's devastation.

I believe every person diagnosed with Lupus who is in flare should be given as a automatic some form of anti-depressant. I believe this with those diagnosed with ANY life changing disease. I believe this is often ignored and the concentration falls on dealing with the physical symptoms when the mind has just as much to do with treatment as does the body. It is one more pill in a Lupus patient's treatment, yes, but it can make all the difference in the world in how the patient responds to not only having the disease but coping with it daily.

I commend you for your love of this woman. Very brave to wish to continue despite the obstacles....support from family, friends, and loved ones is as important as any treatment for the disease lupus and I say this because, AGAIN...to look at the person they seem just fine....no blood pouring out, no bones protruding from appendage. There is a story online you can look for....it's called, "The spoon theory" and it was written by a woman who has Lupus who describes to those who know her what it's like to have the disease. She touches on the fact that she too looks fine...healthy....

This will also help you understand your partner. It's good for the one with the Lupus and great for those trying to understand those with Lupus.

She has to be one special girl......my wish for both of you is nothing but the best!

TammyJ
Regular Member


Date Joined Feb 2011
Total Posts : 51
   Posted 2/5/2011 7:52 PM (GMT -6)   
Wow I need to start proofreading before I submit :)

Yes my partner does minimize and I don't know how to ask her how she really feels--I am a master of fluff, but to really know how to ask how she feels I don't know how. I mean I do say "how are you feeling today" and then she says just like you said my hips hurt, I didn't sleep well--she minimizes--I know those are fluff answers and I have asked a fluff question so why would I expect her to answer with real feelings--I don't know how to rephrase so she really let's me in and tells me how she feels--I want her to be able to start leaning on me for support--time I know. And also I don't know how to respond to her saying she hurts and doesn't feel well or sleep well I feel like any response I have minimizes her struggle--if I don't know how to respond to the fluff I certainly am not going to know how to respond to the whole truth of how she is feeling.

Can I ask her if she worries and is afraid of talking too much about her illness and the pain? The trust you talk about that she probably doesn't have in me I know can only come with time--I just want to learn all the right ways to communicate and approach her because like I said everything I know how to do to help someone doesn't work on chronic illness.

I can't even begin to express my gratitude for finding this website today--much anxiety, fear and loneliness has left me just by talking to you today. I'm trying not to beat myself up for not knowing what I didn't know and she is so forgiving of me--this morning she told me it was ok because I had no way of knowing until I went through it and in some weird way that hurts me because I put her in a position of having to forgive me when I was trying to be the strong one and here all the time she was being the strong one--if I have come to understand anything today it is that ego and false pride have no place in loving someone with a chronic illness.

She does take anti-depressants and I guess my question is during a flare is it common to increase the dosage of the anti-depressant? She has had the same doctor for 15 years and trusts her and has faith in her--I don't interfere in that at all--I just offer to go with her and support her and share in medicine changes and so on. That is none of my business right now and may never be.

I will search for the story "The Spoon Theory" online now. I can't even begin to express to you all that she means in my life--the only thing I can say is that I am a professional writer and she is my muse--that is what she brings to my life. I adore her special falls short. Thank you so much for your help today.

TammyJ
Regular Member


Date Joined Feb 2011
Total Posts : 51
   Posted 2/5/2011 10:12 PM (GMT -6)   
WOW!!!!! I just read The Spoon Theory--blew my mind--can't send it along to my girlfriend right now I think I have probably overwhelmed her a bit with mychange in attitude today. I'll give her a few days and then I'll give it to her. Thanks again. Good Night.

TammyJ
Regular Member


Date Joined Feb 2011
Total Posts : 51
   Posted 2/6/2011 8:30 PM (GMT -6)   
HickoryOne how are you today?
If you see yourself in others, then whom can you harm? .........Dalai Lama

BadDay
Forum Moderator


Date Joined Jan 2011
Total Posts : 1067
   Posted 2/7/2011 1:05 AM (GMT -6)   
Hi Tammy,Yes i Totaly Relate & Everytime i hear Diamonds falling down "Rob Thomas" i SO relate, i actually Tried to push my partner away with the old You'd be better off without me idea, but he just -stayed. i also feel why whinge they won't understand anyway or all i do is whinge good morning dear how are you? CR#P Dear how are you Every Day- NO,i wouldn't want to hear it if i were my hubby so i say Fine how are you. The Fact you are seeking out these sites shows you have every intent to Be there and are looking at this as a joint issue and it will be,all you can do is be there and one day when you least expect it your partner will either cry or hug or talk or do whatever is needed to share feelings that have built up. Wish you all the Best and Without People Like you people like me would be well sitting covered in diamonds falling down with No one.
 

Post Edited (BADDAY) : 2/7/2011 4:05:00 AM (GMT-7)


TammyJ
Regular Member


Date Joined Feb 2011
Total Posts : 51
   Posted 2/7/2011 7:35 AM (GMT -6)   
Thank you and Good Morning--I do intend to be there and yes you described what happened and what is happening perfectly--I'm being pushed away because I would be better off--but not completely pushed away there is just enough room for me to have hope--and I didn't help by thinking I got it I'm all set--I told her the other night that the hurt is overwhelming--she was there one day and gone the next and I have been going out of mind because it was like I didn't have a chance to say good bye or say see you on the otherside.

The fellowship on this site has also been amazing. Thank you so much. Believe it or not I was actually able to comunicate with her last night and told her I know I struggle when you drive by the exit how does it feel for you to know you have to drive by my exit. We'll see if she answers.

And I worry that asking her every day how she feels just reminds her that she isn't feeling well--but I guess she never forgets and so since the condition never leaves when I add "can I do anything for you today" to "how do you feel" it isn't a reminder anymore it is acceptance that I know you are hurting, I want to be a part of how bad it feels and I am available if you need or want anything.

We had a whirlwind romance before reality set in and we never courted--so now I will court her for however long it takes to have that moment you described when I least expect it that she will "cry or hug or talk or whatever to share her feelings with me."

You gave me hope this morning and some patience--I am a "I want everything now" personality and that just doesn't work with chronic illness. You all are teaching me a new way to live--thank you. Love, Tammy
If you see yourself in others, then whom can you harm? .........Dalai Lama

Hickoryone
Regular Member


Date Joined Feb 2011
Total Posts : 32
   Posted 2/7/2011 8:15 AM (GMT -6)   
Hello,

Haven't been online in a day but I see you are processing still. That's good if that relationship is what you want.

I didn't mean to ask her everyday how she is feeling....I just meant at her low points....I wouldn't want to hear that every day either!

It's difficult with those already in a established relationship let alone one in it's budding.

Have a good day.......

Lynnwood
Forum Moderator


Date Joined May 2005
Total Posts : 7720
   Posted 2/7/2011 8:25 AM (GMT -6)   
You will learn to know how she's feeling without asking.

Remember to take time to do things without her, for yourself - it's good for you and decreases the guilt for her.

It sounds like you are already familiar with 12-step recovery programs - you might consider AlAnon - it will be helpful. Living with Chronic Disease is not all that much different from living with Alcoholism.
Lynnwood, Lupus & Sjogren's Moderator
"Life is far too important to be taken seriously" - Oscar Wilde

TammyJ
Regular Member


Date Joined Feb 2011
Total Posts : 51
   Posted 2/7/2011 8:49 AM (GMT -6)   
HickoryOne--thanks and I won't ask every day :) I know she is at a low point today--paying the price with her body for helping out our friends over the weekend--if I hear from her at all today I will be pleasantly surprised since she has no choice but to sleep and rest to recoup from the weekend.

Lynnwood--yes familar with the 12-steps--celebrating an anniversary in another month--in my head I was thinking that by seeing me active in my life going out and doing things that would make her feel worse instead of better since she can't do as much a I can. I was wrong though because you are right I was the one feeling guilty over being out and about while she was happy I wasn't pining away for her sitting at home alone.

I know I want to go down this path with her and have this relationship--the million dollar question is will she let me back in sense she has had to push me away--I don't believe in second chances--I believe in starting over with a different attitude--I'm not asking her for a second chance--I'm hopefully letting her see that I'm changing my attitude and the starting over that she wants will be with me but a me with a different attitude. It will all take time--in the program time stands for Things I Must Earn--pretty apropo don't you think :)

Have a good day everyone. Tammy
If you see yourself in others, then whom can you harm? .........Dalai Lama

pink blobs
Regular Member


Date Joined Jan 2011
Total Posts : 54
   Posted 2/7/2011 10:42 PM (GMT -6)   
TammyJ said...
instead of asking her how she feels I did the opposite and tried to pretend everything was ok--that is all I knew how to do--but it so the wrong approach.


I am experiencing the same thing with my boyfriend, only I'm the one who is chronically ill and he's the one trying to comfort me. His approach is telling me everything is going to be okay, just as you have been doing with your girlfriend. When he approaches me in that manner it makes me feel as if he's trying to downplay or disregard the seriousness and suffering of my sickness. I feel like he doesn't believe me or thinks I'm silly when I say that I'm having a really terrifying time and that I'm scared I might die, when he's just trying to comfort me by saying it's going to be alright and that I won't die. It doesn't quench the anxiety, it exacerbates it. I feel lonely when he talks that way. He just doesn't understand what it's like to be that scared of his health. Try thinking about if you were sick; what things would make you feel better to hear from your loved ones? Hope that helps. Just ask her how you can help.

TammyJ
Regular Member


Date Joined Feb 2011
Total Posts : 51
   Posted 2/7/2011 11:21 PM (GMT -6)   
Wow that was a powerful message--I've let my girl go--I can't make her love herself or see that she is worthy--she has to do those things on her own--I need to give her room to do that. Love is all about acceptance, tolerance and the action of loving which is to want to continue to grow and move forward--my girl and I aren't on the same page--I'm willing to face my fears and she isn't--however sad that is--it is reality today--and the day is almost over so its time for bed. Good night and thank you everyone.
If you see yourself in others, then whom can you harm? .........Dalai Lama

Hickoryone
Regular Member


Date Joined Feb 2011
Total Posts : 32
   Posted 2/8/2011 8:50 AM (GMT -6)   
It may take some time to be on "the same page". Remember, the grieving steps I talked with you about prior.

I am three months into the actual diagnosis, after being sick over a year...wondering what was wrong, would they find out what was wrong, am I merely imagining all of my ailments, etc., I still go through the various steps of grieving at various times.

The actual diagnosis itself breeds anxiety, fear, and depression in most with Poopus....just as it would with any chronic condition.

There are no easy answers as one of you is sick and the other isn't, no cure for Lupus, it will be, if she continues to flare or stay in her current flare, a difficult road. Perhaps her seeing someone to talk about the emotions she has regarding Poopus would be helpful?

It is actually recommended on many sites that deal with the disease Poopus.

What I do is during my "windows of opportunity" after waking and having far too many cups of coffee, is to do all that I need to do for the day.....sometimes I succeed, sometimes not....but it gives me a sense of usefulness; not feeling so helpless before I am drained of energy or begin running a low grade fever.

She has to learn to "live with Poopus".....she has Poopus, Poopus doesn't have her. It's easier said than done and it's easy to get locked in a dark place if you don't recognize you are heading there and "cut it off at the pass".

my best......

Hickoryone
Regular Member


Date Joined Feb 2011
Total Posts : 32
   Posted 2/8/2011 9:01 AM (GMT -6)   
Pink Blobs,

Since those we are with aren't facing the chronic condition it is hard for them to know what to say, ask, do, etc., We have to be patient with this because they are doing the best they can.

I know what you mean about feeling minimized in your condition....but then you have to, as I said, realize they are struggling too. Chronic illness teaches many things unfortunately......and sometimes the learning can form a bond that overcomes it all.

Truth be told....I lived with a woman who never even looked up the Poopus....never tried to understand it in it's truest sense by researching its affects mentally and physically. I would get instead questions about what I thought was causing this or that. This gets old when it would be easy for her to look the stuff up, even one site would have been helpful and I even pointed out a specific site which encompassed much of it to save her time of surfing for more. NOPE Too easy to ask me about this or that; Need I say this is the WRONG way to approach someone you love who is dealing with differing issues every day.

Those who live with you or are in your presence due to life have a hard role as they learn.....in my case it was more difficult because I couldn't get her to even look up minimal information on it to try to understand. I became her source of information on Poopus and that took it's toll.

This interaction we are currently having shows the affects from both sides and therefore helpful to those of us in this post.

Best wishes.....

TammyJ
Regular Member


Date Joined Feb 2011
Total Posts : 51
   Posted 2/8/2011 9:17 AM (GMT -6)   
Thank you all--I don't know how to respond to I CAN'T HANDLE THIS!!!! STOP!!!!! in any other way than to stop--she is right that I don't have the capacity right now to just be her friend because as much as she is afraid and is saying she wants be alone she dangles these little carrots of hope that I fall for and then a couple of days later she takes them back.

I'm not helping her and I am not helping myself. I have a couple of ideas for projects that will help caregivers of those with chronic illness and I think my energy is best spent on that. I can't make her do anything she is too afraid to do--that willingness and courage has to come from within her--I just have to be me and either she changes and works through her fear or she doesn't--there is nothing left for me to do but live my life, love her from a safe distance for me and pray for her.

Thank you. What a process and learning experience this all is--we get wrapped up in our own little worlds and we have no idea how much the person beside you is going through.
If you see yourself in others, then whom can you harm? .........Dalai Lama
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