Comments on: How to say “Take it easy”

By: Jeff

Jeff — Thu, 29 Jan 2009 03:17:33 +0000

@mctd_hubby Great point about the high risk OB. That’s really important.

By: mctd_hubby

mctd_hubby — Thu, 29 Jan 2009 02:35:14 +0000

My wife also has issues with doing too much when she is feeling ok. Her first major flare came on following a bad car accident. Prior to that she had some symptoms, particularly when she was pregnant with our daughter. Before that original flare, she was very active. She worked full time while going to school full time. Now she can only do so much without paying for it later. For example, last weekend we drove to Buffalo (2.5 hours) for my nephew’s birthday party. We spent the night and came home the next day. She is just now beginning to recover and has yet to leave the house since returning. I have to remind her constantly to back off and let me do things.

@Jennie: Don’t feel at all guilty about being a ‘sick mom’. While there are times that my wife is unable to play with our daughter, she makes the most of those times she can. Our daughter is six now and understands about Mom’s illness and tries to help take care of her when she isn’t feeling well. I don’t know if her being so responsible is a result of Mom being sick or just a coincidence. My wife scrapbooks when she is feeling up to it so that our daughter has something to remember in case she isn’t around later on. And as far as feeling that its unfair for hubby, it sounds like you have been sick for a good portion of your relationship. I wouldn’t worry about him if you both truly want children. Be sure to see a high risk OB as well.

Sorry for rambling, lots of things percolating in my mind at the moment!

By: mackie

mackie — Tue, 27 Jan 2009 00:01:58 +0000

My husband is also wonderfully supportive and does so much in our lives to take up the slack that I can’t do because of my SLE. But he can get overprotective at times and then I have to stop, look him directly in the eye, and tell him that he can’t expect me to spend the rest of my life on the couch. When he hears it put that way and puts himself in my shoes for a minute, he understands.

I think it will always be a matter of balance and communication between the caregiver and the person with lupus, with ebbs and flows as the illness flares and recedes.

I used to be a total overachiever, control freak, super-athlete, you name it. Now my motto is: “How can i do this task the easy way?” It’s been a journey to get to that change in outlook but it has made a world of difference in my health. I’d recommend moderation to anyone with lupus…it’s worth it.

By: Jennie

Jennie — Mon, 26 Jan 2009 18:27:49 +0000

Thanks Jeff for your advice. It helps.

By: Jeff

Jeff — Sat, 24 Jan 2009 16:04:46 +0000

@Psychscribe I think that’s how my wife feels about it as well.

By: Psychscribe

Psychscribe — Fri, 23 Jan 2009 20:08:41 +0000

Hi- I’m another lupie who behaves just as your wife does. For me it is psychological – i feel like I don’t know how much time I have left on this earth so I want to enjoy every bit of it that I can while I”m feeling good….Not very wise considering my condition, but I”m just being honest here…

By: Anita

Anita — Thu, 22 Jan 2009 22:11:59 +0000

Do any of you have lupus or a family member/spouse who has lupus who is not taking any medication for it? What are alternative methods for dealing with the pain?

By: Jeff

Jeff — Thu, 22 Jan 2009 17:23:00 +0000

@Jennie While I’m pretty sure that having children kicked my wife’s lupus into overdrive, I can tell you that neither of us would change our decision to have children. My wife may be a sick mom, but she’s still a great mom. I had a terrible mom and she was perfectly healthy.

@S. I will check out the book. Thanks!

@celestial My wife also has a never ending list of stuff she wants to do. I try and help as much as I can, but getting her to rest is a real challenge.

By: celestial

celestial — Thu, 22 Jan 2009 14:49:17 +0000

I wish I had some advice, my husband trys to “drug me” into submission when I’m going through a rough time with my Lupus. I’m a total control freak and always have this laundry list of things that I want to accomplish.

Maybe that’s it, try to step in and take over her laundry list. Give her a cup of tea and a blanket, make her sit on the couch and rest?

Something that all of us lupus patients need to remember is that our families suffer too and that our resting/taking it easy is going to actually help our families and friends suffer less.

By: S.

S. — Thu, 22 Jan 2009 03:01:27 +0000

I am the one that has Lupus and my husband is very supportive. It seems to me that your wife has a hard head! Of course, we don’t bring Lupus on ourselves, but we can bring on additional flares if we don’t adhere to frequent rest periods! What’s going on in her head that has her thinking that she has to do soo much? Have you ever read that book, “Women Who Do Too Much”? It’s a must read for people like her. I used to be the same way. I realized that I was in denial about my disease and having guilt feelings about not being able to do the things that I thought I should be doing. Who cares! Your health is more important than anything. Now, my attitude is that whatever it is, can wait and I don’t overdo it anymore. I force myself to rest, even on my good days and what I have found is that I feel better longer this way.
I think a good Psychotherapist is also a good tool for someone like your wife.
Live Well and Love Your Lupie. Take care.