pharmacieuticals make me grumpy?

[Polar Bear]

My heart goes out to both of you.

[ViewsAskew]

Interesting morphing of the thread.

I spend so much time fighting to make myself *look* like I used to be. Competent, talented, good-at-her-job, top-pick by many clients, etc. And, I can't do live up to it. So, I do very little so they can't find me out! I am president of a small non-profit (volunteer) and do other visible things that make it look like I'm still who I was.

But, I'm not. As with all of us, my partner and close family and friends are the real casualties. I'm often amazed that hubby hasn't thrown me out the door, yet. I'm honestly not sure why at times. In reverse, I have to wonder what I would have done. My family gets it as all of the people on my mom's side have WED - and I think hubby's family does, too. Three of them have autoimmune disorders, so they understand what chronic illness is like. I guess I'm really lucky in that. I've long ago run off most of my friends through lack of availability. No, sorry, can't do that movie. No, sorry, can't go see your band play. Oh, I wish I could go shopping, but I can't make it that morning...etc. They just sort of stop trying after awhile. I do have one very close friend - she has lupus, so she, too, gets it.

Per the holidays, we have luckily been weaning away from them for years. Long before my income got so compromised that I couldn't afford them, I started giving less to family until I stopped completely. First it was to stop adult gifts. Eventually I convinced them that we should donate to others instead as we all had so much. Part of my family is not Christian, so that was easy, but on the side that is, it was a bit harder. By now, though, we just don't *do* Christmas.

We will see my hubby's family on the 24th for a dinner - they are Italian Catholics - so there is this big dinner followed by midnight services. We don't go to the church service with them. We'll spend the 25th doing what we usually do on a day off. He asked for meatloaf and mashed potatoes for supper .

[majoraward]

He asked for meatloaf and mashed potatoes for supper .

You don't know how good that sounds to me just about now , actually anytime it would sound good.

[debbluebird]

That is so weird that you say your son hates you. Guess what, this past July I had a huge fight with my daughter. She says that she will never visit here again and no longer speaks to me. She says I try to control her life. This was all news to me. I thought our relationship was fine. It was very hurtful. Oh well. Like you, my husband is the only one left in my life. Thank God we are happy. He is very protective of me and is my memory.
DEB

[majoraward]

That is so weird that you say your son hates you. Guess what, this past July I had a huge fight with my daughter. She says that she will never visit here again and no longer speaks to me. She says I try to control her life. This was all news to me. I thought our relationship was fine. It was very hurtful. Oh well. Like you, my husband is the only one left in my life. Thank God we are happy. He is very protective of me and is my memory.
DEB

Well maybe they are angry at us for getting sick, stranger things have been known to happen. "This was all news to me. I thought our relationship was fine. It was very hurtful." Exactly the way I feel about the whole thing - it is weird - and my wife is also "protective of me and is my memory." We are happy too but the RLS makes it so we can't make any plans because we never know if the RLS will be under control or not, or if the control means I am in zombie land again.

[badnights]

This thread is really hitting some profound notes.

I have both kinds of person in my life, the kind that "gets" it and the kind that doesn't. Rthom, I think one of your biggest non-health problems right now is that you have only the one kind of person in your life; none of them really gets that you're sick, and that the sickness has a devastating impact on mood and perceived personality. Majoraward, from what you just said in this thread, you seem to have mostly that kind of person also (the exception being maybe your wife?).

I am lucky to have both. There are some people who always knew me but didn't have much to do with me before the disease took over (or I didn't have much to do with them?), who have stuck by me and bothered to ask and bothered to listen. The others, though, just look at the me of now, and judge me by that, regardless of what I was like when they knew me before, and what I may have done in my life before they ever knew me.

Ann, my mentality is so like yours. I am so little like what I was, yet I keep trying to accomplish the same things. But I took an extra step toward doom last summer. I tried so hard that I damaged my reputation, perhaps irreparably. And the people who chose to damage me could have instead chosen to believe I was exhausted (I had explained the disease to them), instead of deciding I was a nasty person. Perhaps they didn't have the imagination to realize that people can sound nasty when they're exhausted. If only I had been willing to admit that I was not capable of working like I used to! But I tried so hard... & only succeeded in setting myself up for a brutal fall. Like everything in my life, I have to learn the most bitterly hard way imaginable; maybe I've learned not to over-extend myself.

I don't want to dwell on how much of me I've lost. It never stops hurting.

Rthom, try to imagine how a person would react to you if s/he knew what you were going through. Then imagine that person in your home with you daily, "getting" it. Then compare that to how the people around you act. Do they get it? Can you believe that you are not the problem?

Maj., and Deb too, I'd like to say something that may or not be relevant. A few years ago, my (then almost-grown) son realized he "hated" his father (who hasn't lived with us for a long time).
Throughout his childhood I had told him his father loved him. I had forced the boys to have supper with their father whenever he wanted (which wasn't often). Then one day when my younger son was about 17, he had a violent emotional outburst during which it became clear that he harbored very strong negative feelings toward his father. I was wise enough by then to tell him it was OK to hate his father, that whatever he felt was an honest feeling, etc. So he got over that big hump, eventually, and a few years later has come to realize that, although he is bitter about broken promises and the obvious lack of care and attention, he no longer hates. The situation is quite different with you and your son, Maj, and with your daughter Deb, but perhaps the nature of the "hate" is the same, is transient and overblown. They do get older and wiser.

Love to all tonight

[debbluebird]

I have actually thought and hoped that my daughter will become wiser as she gets older. She happens to have a difficult child, age 8. I also wonder what their relationship will be like as time passes.
I don't think that most people get it. I am very grateful to have a husband who gets it. He has said that he wouldn't have believed what I have gone through if he hadn't witnessed it himself. If I didn't have him I probably would be alone.

DEB