I find myself getting irrated more, sometimes I can' remember when the last i used the bathroom, and especially if I have to do too many things, or try to remember too many things at one time, it get so fustrated, I become angry. The social security people say that I may still be able to work, and I don't think so. I just want peace and quite. They don't know that putting me in the wrong situation can be a bad thing. I cant remember how to spell simple words sometimes. The lady asked my wedding date the other day and I had to ask my husband, BOY DID THAT HURT ME. I am the one who get on my husband about forgetting it. I feel like the lupus fog is getting worse. ANY SUGGESTIONS, ANYBODY. I do all kind of memory games, but I guess it is not working. Lord knows Of all the things I have lost I miss my mind the most (L0L)
Hello Fighter,
I've been irritated for a good while and i think that happens with us actually through flustration of what the lupus does to we, regarding our memory, trying to do things when at one stage we would'nt have thought twice about it but i have days where my irriation turns into a bad temper so my husband gets it, he's found me in places in the home standing on the spot totally forgotten what i was going to do.
Lupus is an hard thing to prove i think because it's an hidden disease, i know of someone who had to get solicitors involved before they saw sense, i think it's how they'll look at you....sorry for sounding negative and i hope you can get somewhere but it's another issue trying to prove things.
I'm not just saying this but i bet alot of memeber's can agree on the same thing...remembering how to spell words as gone terrible for me and i have to check on google to make sure with some and then half the time i still end up editing because i've missed something or my sentences sound funny but sorry to hear you got your wedding date confused but i bet your hubby understands.
I'm being truthful here i don't do anything to help regarding my mind and if it goes it goes that's how i've got with suffering with bad flustration over it all and my hubby knows how i feel about it all because no matter how hard i try and concentrate to make me think better it never works...so i carry on daily and just keep facing what comes at me.
((Hugs your way))...plus i know how it feels. xxx
I am having the same problem. I keep calling my husband my brothers name I actually call my 5 month old nephew my dogs name. My kids think it's funny, sometimes I laugh with them but deep down inside Im crying cause I know something is wrong with me and my mom is starting to see it. I never told anyone this but about 2 months ago I went to the grocery store and when I came out I forgot where I parked. That was the scarest thing ever. I had to sit in my car and cry
. I sometimes get my words so messed up that I have to stop myself and start the convo over again... I hate this... REALLY I DO... Is there something out there that can help us with this problem... please let me know.....
Hi fighter, I know it is not easy, but you are doing what helps by writing about it and reaching out. If you are like me, I get even foggier if i try too hard and if I expect myself to remember everything. I can tell you that having a sense of humor goes a long long way...as hard as it may be, if you find yourself in a foggy state do what you did in your post :make a little joke. Chances are it will help release the chemicals in your system that will enhance memory and your mood.
do you have anyone helping with you ssi? a lawyer? or advocate?
keep me posted, ok?
Hi fighter, i have the same problem, a lot of times i get in my car and start driving and a few minutes later i realize i dont know where i was suppost to go, or at times im driving with my hubby and kids and, i cant remember my way to where we going, my hubby thinks im joking when i tell him i dont know which way im going…it happens to me at work all the time…it kinda scare me since i have a two year. Old boy…but i try my best to not let it get to me, i dont know if its anything that we can take for this, but i anyone finds out please please let me know, just b positive fighter, stay strong and pray…hugs and kisesssssss…muahhhhh!!!
janice said:
Hi fighter, I know it is not easy, but you are doing what helps by writing about it and reaching out. If you are like me, I get even foggier if i try too hard and if I expect myself to remember everything. I can tell you that having a sense of humor goes a long long way…as hard as it may be, if you find yourself in a foggy state do what you did in your post :make a little joke. Chances are it will help release the chemicals in your system that will enhance memory and your mood.
do you have anyone helping with you ssi? a lawyer? or advocate?
keep me posted, ok?
Hi Tanya,
Soemtimes when i speak my words won't fully come out so i stop trying to think what i was saying, then i'll say a word and it's totally opposite to what should have come out my hubby laugh now but i find it flustrating and sentences seem to sound backwards....it's funny but this lupus as so much to answer to in more than one way but like forgetting where you car was the foggyness must have come in strong.
((Hugs)) Tez
tanya said:
I am having the same problem. I keep calling my husband my brothers name I actually call my 5 month old nephew my dogs name. My kids think it's funny, sometimes I laugh with them but deep down inside Im crying cause I know something is wrong with me and my mom is starting to see it. I never told anyone this but about 2 months ago I went to the grocery store and when I came out I forgot where I parked. That was the scarest thing ever. I had to sit in my car and cry
. I sometimes get my words so messed up that I have to stop myself and start the convo over again... I hate this... REALLY I DO... Is there something out there that can help us with this problem... please let me know.....
I have no real solution, but ur not alone. I have to ask my kids for my phone number. It is frustrating at times. It's not you, it's this damn disease. Life will get better once we find the CURE.
I really understand the frustration. I stopped driving because of my frustration level when trying find place I have been to many times. One time I had to use my GPS to get home. I laugh at that one often. My greatest concern is that I am a teacher. At last year’s 5th grade promotion I had trouble call my student’s name correctly. I felt som embarrassed when I actually call one student across the stage and called his name incorrectly. When I teaching I forget what I am saying in mid sentence. I had co worker filling in for and students covering me when they see I am having trouble. I such and organized person that I put things in places and then can’t remember where I put them. My children 21 and 23 don’t really understand why mom always forget things they tell me. I have recently too FMLA for a month. I don’t think I am ready to go back for the remainder of the scoop year. One thing I do now is use the reminder page in my phone to write down dates appt. and addresses. I tell you humorous it is, but frustration prevails in the end. Hugs to you! Thank goodness for this site we all do understand .
Rachel,
Excuse my expression but you've hit the nail right on the head with what you've said.
Im 44 this year and walked out of school with high grades in english besides other subjects and when my hubby met me 12yrs ago i was red hot on spelling and the last 2yrs the lupus as hit me hard and when i go to spell something my heads telling me i know the spelling but it won't pronounce itself properly and it gets me down as i end up typing it in google and you can guarentee i'm either 1 or 2 words out or a words back to front.
I really feel for the way it's affecting we all. xxx
Rachel Simpkins said:
I hear you there....your not alone, my mind used to be sharp!! could remember anything! I was always a spelling
bee champ...@ times I cant even spell anymore :( Yes Im losing my memory alot now too :( Praying for us...
HEY GUYS, ITS GOOD TO KNOW THAT I AM NOT ALONE WITH THE MEMORY PROBLEMS, BUT ITS NOT GOOD THAT WE ARE HAVING THIS PROBLEM WITH SO SOULUTION. HEY ONE GOOD THING IS I GOT A KICK OUT THE EXPERIENCES THAT SOME OF US HAVE WITH THE MEMORY LIKE USING YOUR GPS TO FIND YOUR WAY HOME, THAT WAS HILARIOIUS (LOL). IT MAKES EASIER WHEN YOU HAVE SOME ONE TO GO THROUGH IT WITH. I DONT DRIVE ANYMORE, CAUSE I TOO FORGET WHERE I AM GOING AND HOW TO GET THERE AND THE SPELLING IS GONE, FOR I ALSO WAS SHARP ON SPELLING. THANK GOD FOR MY LWL FAMILY. MAY GOD BLESS US, EACH AND EVERYONE. MANY BLESSINGS AND HUGS
Hello all, I had a Dr appt today with my primary Dr and I was telling him about the brain fog and he never heard such thing. I hate when a Dr does that, make me feel like I dont know what Im talking bout.
Tanya some doctor's have'nt got a clue about the disease, especially if they've not trained in that field...you do know what your on about because some appointments i've had to attend for different issues when i've mentioned the lupus some dr's have told me they know nothing about it.
My Rheumo sent a letter to my GP last time i saw him and told him i was talking in "Terminology terms" which was wrong.... (what's all that about because i know what i'm saying) who suffers the symptoms we or Dr's and i told him i was'nt leaving the room till he answered some more questions.
We have a good right to know what's happening with us all....so don't ever let no one make you feel that you've not got a clue what your on about.
((Hugs to you)) xxx
tanya said:
Hello all, I had a Dr appt today with my primary Dr and I was telling him about the brain fog and he never heard such thing. I hate when a Dr does that, make me feel like I dont know what Im talking bout.
That's my Awesome Ann, always worried about others instead of herself, reminds me alot of myself. I understand very well, and I am working on letting go of things, it just that the old devil always finds a crack to creek back into my mind. Also trying to work with this diabetes thing and what to eat and not eat and the portions thing is fustrating, because the prednisone also causes the sugar to elevate. Its a lot to swallow, but I am praying and asking God to give me insight and patients with this problelm and I know he will. My girls call me daily and ask me how things are going, which means alot to me to know that they are conceerned and interested in the situation. But if I just hold on to the Lord, I know that all will get better, it always has, this is just another hurdle that I have to get over and I will. I love you for your concern. Keep in touch my angel. Many blessings and hugs
Ann your correct on that one " The devil will cause us to worry ourselves to death" i've always been a born worry and the stress it put on your body is stupid and all i get off ste is carm down, it's abit late in the at 44 to have a major personality change.
My head's slowing down because editing on spelling as started.lol
Ann A. said:
You are the angel Fighter and the fighter angel. I am gonna call you the Angel Fighter. And yes, the devil will cause us to worry ourselves to death.
Hey I like the name,and with God's grace I will live up to it. But all is well for now, just feeling so drained this morning. My daughter is over visiting. Will talk to you later. Many blessings and hugs
fighter it is a good name you choose and i really hope you do fight this battle mate...sorry to hear you feel drained and i hope the chat with your daughter helps...i woke this morning with my hands all swollen and joints in terrible pain, i took my tablets and painkillers besides but it's 23:37pm herein the uk and my hands are all swollen now/joints still stiff and my raynauds have done open cuts on my hands and they're so sore.
Sorry for going on mate...just needed to put out how i've felt all day.
((Hugs to you)) Terri x
fighter said:
Hey I like the name,and with God's grace I will live up to it. But all is well for now, just feeling so drained this morning. My daughter is over visiting. Will talk to you later. Many blessings and hugs
You can tell me anytime what you are feeling and there is no need to feel sorry for it ever. I am sorry that you are in so much pain. I had two good days (sat, and Sunday). It has been a long time since I had days like that, but wouldn't you know it Monday the bad days were back. but I thank God for the two good days. Stay strong my friend God is sending relieve to your aching body, just believe that. I took an anxiety pill the other day because I was feeling so overwhelmed and couldn't get a good nights rest. They help me rest very well, but I don't take them but maybe once a month, because I take so much medicines, I don't want to start any adverse reactions, but the anxiety pills make me sleepy for at least three days, I get up, but I want to go back to sleep after a while. But I feel so rested after a couple of days. Many blessings and hugs
Hello Fighter, How are you feelingin yourself ?
I don't like to sound like i'm going on but sometimes it gives you relief...it's funny but i'm not a church person but i do have my moments of praying for some relief and least, it would be lovely if we all had the same for good.
Once a month won't hurt if it gives you some relief...i think we're all junkies in our own rights and don't have to become one otherwise, well if they make you rest soundly for 3 days all the better for your body.
Now besides my body i have issues with my head such alot and taking a valium every othernight does'nt half lower my cells in the brain which i do need because i'm like a fuse ready to be triggered.
((Hugs your way also my friend and rest well)) xxx
Hello Tez 20, Its ok God dosen't hold it against you for not going to church, its whats in your heart that counts, and praying can be done anywhere, anytime. My health has kept me from church for a while now, and I won't lie sometimes I don't talk to the Lord as often as I should, and I am sure that you and I are not the only ones guilty of this. He knows that we are perfect, thats why he died on the cross for us. But yes sometimes, I need that 3 day rest, to just get away from all the confusion, and stuff in my mind. My nerves seem to be so bad these days, everything seems to agitate me, even too much noise, too many people, and if people go down the same aisle with me too many times in the grocery store, I become parinoid, like they are following me, so if I feel like going to the store it has to be early in the morning when it is very empty. I was never this way before, I was always a people person. Thats why I tell my lawyer that there is no way that I can work in the public anymore, this damn disease and the medications has really changed alot about me and I have to deal with it by staying high basically, to wart of the negative feelings. I am going to have a talk with my physciatrist about this when I go back to see her next month. Many blessing and hugs ( You can get relief by talking to me anytme, not a problem at all)
Hello fighter,
My hubby ste as tried getting me there i can tell you, as he says it will do me good because i can swear sometimes with everything going on but like you say you don't have to go to church to do a pray when you think you need it most.
The 3 days rest like i say does help, it's like me for the last several days just been anyhow and the pain in my head as'nt helped one bit but when it affects my eyes i do have to keep off the pc...i've been treated up the eye infirmary concerning my eyes and they told me just an hour a day on the pc but i don't listen.
Lupus can cause your nerves to be bad...i'm the same as yourself on meds for mine, have you asked for anything to help, sounds like your clautrophobic and having issues of it sending you paranoid...you may have biopolar, i have and the issues involved are terrible as your physciatrist about this....i've been under one for years and he's just had to leave the area which i'm really disappointed about and now i've got to see my GP as a letter as been sent to him about what he thinks next, through the issues i've been through i've been involved with the mental health team and been on 24hr watch in the past.
Thanks for saying i can chat with you anytime as it comes as a large relief to many of us.
((Hugs & Kisses)) Terri xxx