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cjc
01-25-2008, 09:30 PM
The other day my husband said to me that he shouldn't bother telling me anything because I don't remember. My memory has gotten so bad lately that I really feel stupid. I don't know what to do about it, I tell my rheumy but he doesn't seem to think it's important I guess. Does anyone else have this problem?? I have to write everything down or I will forget, there are times I get up to do something and by the time I stand up from the chair I have forgotten what I was going to do. :mad: I am to the point I feel like it isn't worth getting out of bed. This has caused so many problems in my marriage lately... I hope someone can give me some ideas on what to do or who to talk to....

CJC

Faith
01-26-2008, 12:34 AM
Hi CJC,

Well, you are not alone as many of us have memory problems. I can be in the middle of a conversation and, another thought enters into the brain, I have lost track of what I was initially saying.

I write a lot down so I don't forget and I put appointments in my phone; can't remember when they are. Then I later can't find my notes, lol. The last dr appt I was a day early; embarrassed to say the least. I have also stood up from my chair and walked to the fridge; suddenly I am blank and can't remember what I was going to do.

During Lupus/Fibro fog in the afternoon I put the Peanut Butter in the Fridge and the Jelly in the cabinet. Mmmm; it's pretty common. I would suggest talking to your spouse and explaining that this is typical of Lupus and could he please be patient. The movie comes to mind, The First 30 Dates, where she lives the same day over each day and can't remember anything. :lol:

Hang in there and you are not alone.

Take care,

Faith 8)

Oluwa
01-26-2008, 11:22 AM
Hello CJC,

Don't let forgetfulness or his insensitive comment keep you in bed all day. I know your spirit, heart and mind hurt...I am sorry. I know how it feels. It isn't a great feeling is it...hugs.

It happens to all of us, forgetfulness like Faith said. So, I know I am not stupid, nor is she or anyone here. Nor you! So stop the name calling to yourself, in your head, in your thoughts. It feeds the disease.

I think of Lupus and it cronies as its own entity. Stress, self insults it just loves. Keeps it alive...Lupus feeds on it. So stop it already. Why let him get any bigger. She can be a girl too. I show no bias.

Do you need words to speak with your husband about his insensitive remarks? Does he feel he isn't important when you forget, or that you can't be relied upon? He is rude? Insensitive? Tell me more, I have lots in my heart... on feelings I can share....

Or do you just need aids in remembering? One time I was in the car and couldn't remember if I was gettiing in or getting out... Oh, we have many funny stories here..can be scary at the time...

Aids:
Keep a notepad with you.
Use stick ems.
Use a hand recorder.
Use your PC, some software, servers has schedules that will annouce, flash when you sign on important things you want to do each day.
Maintain a hand daily appointment ledger.
Address Books.
While getting up from the chair, repeat it over of what you were going to do as rising.
Do puzzles, read to keep your brain active. Penny Press Books at the grocer has many puzzle ones.
NintendoDS, Brain Age to work your brain.
Keep a dictionary handy when forgetting to spell.
I use Word, to correct my errors when typing when I can't even phonetically pronounce it out. I could have won a spelling bee prior. Now, I don't know if I am Smarter Than a Fifth Grader...Simple as the word above..."active." I forget, but after saying it over and over, it click..

And when totally stumped..Say I love you but I just can't remember.

Medically, if you are worried ask for a scan. You can seek a second opinion. Tell your Rheumatologist, it is important to you! And ask what involvement can Lupus affect the brain. Asks for test. Demand. You need to put your mind as ease, so ask for them...

Again, if it a relationship issue, communication perhaps I can help. Or read about the forum, on other threads and see how we handle our relationships with our spouses. Many have wonderful ones, and some of us don't. Mine is ah, so, so...

Also you could find a counselor, for one on one to talk about you, your thoughts about life with a disease, your relationship....

And don't be mean to youself..Lupus assaults us enough. Now give yourself a hug from me, all of us...

And You are Smarter Than a Fifth Grader..
Oluwa.

cheryl_v
01-27-2008, 09:03 AM
I know how you feel. My hubby gets so aggrivated because I forget everything so often. I will be walking to another room and forget why and what I was going to do. I make list on the fridge of things we run out of and always forget to take it with me to the store. I actually forget too that dishes need washing, or put the laundry on and forget and never put them in the dryer. Or forget to do it all together. I will go in a room to clean, and already have done it without remembering doing so. These are only a few things, my hubby gets so grumpy. I try to explain, he just roles his eyes like it's just an excuse. It's part of my life and I just except it, told him he just needs to do so as well. I hope you feel better about yourself and see that many others truely understand. Chat with me or others all you want, we understand all to well. :D

Saysusie
01-27-2008, 11:16 AM
About a year ago, everyone here had some fun with this malady, "forgetfulness". We all posted funny stories about our forgetfulness and were able to laugh at ourselves and provide comfort to one another. Yes, it is a big problem for almost all of us and I do many of the things that Oluwa suggested. I even program things in my phone: I program a month prior to remind me that something need to be done next month...I also program it a week prior (because I know I will forget about the month reminder), and I program it a day prior (cause I've already forgotten about the week reminder) and I program it 2-3 hours prior and finally at the specific time. So, as you can see, memory problems are something that we all deal with and we have to accommodate our bad memories in the best way that we can. So, you are certainly not alone!

Peace and Blessings
Saysusie

cjc
01-27-2008, 12:09 PM
Thank you all so much, you have made me feel better. I thought it was just me. I guess I just need to sit my husband down and explain things... oh wait I did that already. And he seems to think that I can remember if I want to. That there are things I can remember and things I can't, like it is selective or something. Why are people so critical? It really makes me mad sometimes that even my friends think that this is all a game because I don't look sick.... what am I suppose to look like then? GRRRRR.... I am so glad I found this site it has been a big help to me in understanding this disease and it's effects on other people and to know that I am not alone in dealing with the effects of it. Again thank you all who responded.

CJC

Saysusie
01-27-2008, 12:20 PM
Let him read some of the posts here so that he will know that it is a real symptom that we all have to deal with! Print up some of our posts and tape them to a mirror where he can see them! It sounds as if he needs a bit of an education about this disease!

Good Luck!
Peace and Blessings
Saysusie

mnjodette
01-28-2008, 04:14 PM
These are some great suggestions! I have the same problem with memory, and have some friends with CNS lupus who really struggle with memory issues. I'm going to share some of these at our next local group meeting. You see, CJC, you really aren't alone! My husband is pretty kind about it - at one time he was the original 'absent-minded professor' type so he doesn't have any reason to point a finger at my forgetfulness! Between the two of us, we might remember about half of any conversation! :lol: :lol:

sick n tired
01-28-2008, 11:50 PM
Hi CJC,

My heart goes out to you. I endured some years of insensitivity where my husband is concerned. Not just with memory, but with my endurance not being there and always being sick but not looking like it. I had a doc who told us that it was all in my head. I suppose that my hubby bought into that. Actually, I started to doubt myself too. Anyway...when I got a new doc and he tested me that is when my hubby started to come around. He knows now lupus is real and it can kill and it has scared him to death. Now he is better. I have been having some time with the memory.

I was trying to introduce my closest friend to an acquaintance and forgot the name of my friend.....we just laughed...and she introduced herself.

I will be praying that you can educate the hubby and he will become the real man you married.

In Him,

Karen