Sandy,

Have you thought about bring some help in to your household in the form of a person to clean, do laundry, ironing, run errands, etc.---anything that saves your energy and time? It would be much cheaper than a divorce or separation in the long run.

Jean

Jean

i was thinking of something like that. i've already told John that i'm sending the laundry out except for special things that i don't want dried (like my jeans and some shirts.) i already send my work clothes out to be drycleaned or chinese laundered. we have to do several major clean outs and trips to Goodwill this summer (have already done several) and then i think we'll hire a cleaning service at least for the heavy cleaning. we also do a lot of frozen food meals (there are great frozen foods that can be nuked or heated in the oven or toaster) and takeout.

there is still a lot that John has to do to make him an equal partner that he has been avoiding doing. i figure that my lupus = his TBI. this is not a stroke that has left him paralyzed etc like my dad.

sandy

Sandy,

I haven't been married as long as you have but my thinking is that "equal partner" is a myth in any marriage because at one time or another one person always has to give more than 50% to make a marriage work. At other times the roles might reverse and the one giving the most at one point will be at taking more at another point. For me, if Don does his very best to do what little he can do---i.e. dress himself except for one sock, do his own sponge baths every other day, and try his best to get out some language---then he IS contributing his 50% to the marriage. We can't expect our brain damaged spouses to do more than they are capable of doing or resent what they can't help with. As they say, by the grace of God it could have gone the other way and we'd be the onces needing a caregiver.

In your case, with both of you needing help because of illnesses.... you've got the income to buy a lot of equity. Do it and don't look back. Save yours and John's energy for more important things.

Jean

Jean

i am rolling on the floor at your first comment...you have been with Don for over 30 years, you just haven't been married as long as John and i have!

it's true, i am fixated on the "equal partner" concept in a relationship. i guess it comes from the dysfunctional relationship i was exposed to and learned in my family of origin. i feel that John should do the best that he can do, and i feel that a lot of times he slacks off and uses his TBI as a dodge to get over. i'm sure that sometimes he tries his best and a lot of times he doesn't. it's difficult when you have a person who is substance dependent in recovery and also has a TBI. i also feel that my unrecovered codependent side would lead me to take over and do things for John which would exhaust me and which he is perfectly capable of doing himself.

sandy

Sandy, you have been having problems for awhile now....

Maybe a little break away from each other, for a month or something. to sort out feelings, see how you both do...

I know it's no picinic being in an unhappy marriage, or even in limbo..

As Jean says it is not always 50-50 some times 80-20 some days 60-40, but then it turns around... it is that you are there for each other....

I get the feelings from your posts, that at times you feel like you are raising John.

I know feeling resentment is not a good thing.... i don't have any answers, I just hope that for your piece of mind and health that you come up with the solution that is best for you.

Bonnie

Bonnie

you hit the nail right on the head, so to speak. the problem is that i no longer want to raise John, and haven't for a while, and he really resents it. in the beginning of our marriage, we were more enmeshed and codependent and he was like a teenager and he liked that just fine. we had more money than and less physical problems so life was easier. now, he is angry that he is being asked to grow up and take responsibility for his life. he tends to use his TBI as a dodge that he can hide behind to evade responsibilities.

the problem with a break is that he would have nowhere to go. his family made it really clear to John that he had to choose between the family or me so he has not spoken to any of them since Christmas Eve. if we had a "break" it would have to be at least semi-permanent because he would have to go back to work, get some money together, and get an apartment. if it comes to that, that would be fine with me, but for now, we started with taking the laundry out today and having John pick it up tomorrow, and having John fax in his first 3 month prescription to Caremark tomorrow. John prepared all of the laundry (with stain remover) for the laundromat himself, and is currently making the bed.

sandy

Sandy

:friends:

Sue.

Sandy, it is a start... maybe by doing things together, and showing him.. he will gain some insight into all you do. Sharing laundy and chores together...

After my ex and I split I went to co depent meetings and adult children of alcholic meetings with a girl friend.. I went with her. for her..but I learned some things about myself..lol

Well glad to hear you are working on some things and hope John will continue to help you

Bonnie

Both you and John have had way more than your share of stuff. It sounds like you are both trying to make things better. You made some big changes in a short time.

Getting someone in to clean up from time to time for a while made a huge difference to us. [And we had a karate kick-bag in the yard that I'd go and take a few shots at once in a while. ] Just the feeling that it is not all on your shoulders is a huge relief. Plus, with lupus, you have to rest.

T

Sandy,

I found this, I am sure you know all this:

Because lupus tends to develop slowly and evolve gradually over time, awaiting a diagnosis can be like waiting for a Polaroid picture to develop. If you are seen by a doctor at a point in time when only one or two criteria are satisfied, it is like looking at a picture that is only one-quarter or half-way developed. No one looking at that picture can accurately identify what it is. Nor can they predict if it will develop at all or what it will develop into, or how long it will be before it is developed to the point where it's identifiable. Just as there is no good way to speed-up the development of a Polaroid, there is no way to hurry-up the diagnosis of lupus.

The length of time it takes before lupus can be diagnosed is highly variable; it may take weeks, months or years; three years is not an uncommon length of time for many people to have symptoms before being diagnosed. In some cases, it can take as long as 10 years before enough evidence has accumulated to indicate that it is lupus. However, generally a doctor has a pretty good idea, though s/he may not be certain, that a person does or does not have SLE. The important thing is to learn the signs and symptoms of lupus and if you develop something new, let your doctor know so s/he can determine if you have yet satisfied enough criteria to be diagnosed.

Maybe your first DR was right, now it has progressed.

Not sure if I can say anything constructive, but in my opinion try not to be resentful that you did a lot for John after his TBI. You seemed to be capable and willing to do it then. Now you are feeling unwell it must be hard for him to realise that you are not capable of doing everything anymore.

Hopefully this flare will not last too long, but heed it as a warning maybe you were doing just too much....not just looking after John.I think many a well woman would find it hard to do all you used t do. You must prioritise...I think you are trying to do that.

John is not responsible for your feelings. Resentment is an awful emotion.

At least it seems John is tryin g to be helpful now...I hope it contiues

I hope you feel better soon

Mary

thank you all for your support and kind words, and thank Sue especially for the hugs.

just for today, things seem to be looking up. 23 pounds of laundry were washed, dried, and folded by the laundromat, and need to be put away by John. there are three cleaners in my yuppie neighborhood that pick up and deliver regular laundry washed, dried, and folded, as well as ironed or cleaned if you desire. The Fairway, a humongous organic, nonorganic, and takeout supermarket, which only had one store in the Upper West Side of Manhattan, opened a duplicate store in Red Hook, Brooklyn, 5 minutes by car from my house, with cheaper prices. things are looking up.

i really need to recover from this devastating illness and organize my life so it runs more simply. therefore, i will not be on the site, not even to open my mail, until the end of the summer. have a great summer. i'll be back!!!

sandy

Sandy..

Thanks for the warning! :big grin:

Tom