[Jesse88]

I feel so stupid. I've been having more memory problems than usual lately and so far have been pretty successful at hiding it from everyone except my husband. But today I had to call some neighbors to confirm a dinner engagement along with two other couples. I had to leave a message and started to mention the names of the other couples (who I know very well) and couldnt' come up with their names. So when these people get home, they're going to get a message on their machine which sounds very odd while I struggled to find the names in my mind. (I never did until after I had hung up). What must these people think of me? I know I sounded like a complete idiot. They know I have lupus/Sjogren's but they don't know it can affect the brain. I have CNS involvement and when this "grasping for words" problem happened before, the rheumy said it's the disease process. I feel pretty well overall with the meds I'm on, but this stuff really upsets and scares me.

In addition, I'm more emotional lately. Right now I'm in tears thinking about how stupid I must sound on that message, but I've just been more weepy in general. I'm not prone to depression and I usually snap out of these dark spells quickly, but this emotional symptom is something new and scary.

Well, enough of that. I have to pull myself together before my husband gets home. He worries enough as it is. Thanks for listening.

 

[Tom]

Jesse, :hugbetter:

I understand the frustration, anger, and sadness you're going through with this. Your experience is all too familiar for me as well, especially in the last couple of years. I respond to things and realize the next day my brain didn't process it correctly and I feel so stupid. I don't understand how this can happen and has driven my confidence level pretty low in talking to others.

Making decisions has become very difficult as well and I have to take a day or two to let it process before I can trust myself at all. I can only take the good days with the bad and try to make adjustments in my life. Unfortunately it's left me with very few friends who probably don't understand. I can't blame them since I don't understand it myself, but make the best of what I can.

I'm sorry I can't offer much on a positive note but I hope you feel a little better knowing it's not just you that deals with it. I do hope your good days overwhelmingly outweigh the bad. Don't be too hard on yourself and let your husband know what's going on when your ready. You have to keep him in the loop more than anyone. Take care.

 

[Jesse88]

Thanks Tom, it was good of you to respond, and so quickly. I'm so sorry to hear this problem has left you with few friends. I suppose you could say the ones who left weren't really friends to begin with and in the end you're better off without them. That's how I'm going to look at it when/if it happens to me as well. I fully expect some people will get tired of dealing with me, if not because of the lupie days, then because I'm also half deaf and they are getting tired of hearing me say "what?" and having to repeat themselves. That gets old very quickly.

Its true misery loves company and it does help to reminded that I'm not alone in this, but I sure don't wish it on anyone.

 

[Clare.T]

((((((( Jesse )))))))))))

You are definitely not alone ! My main experience of cognitive defects was due to a drug I was taking, one used only for skin lupus. My short term memory was badly affected. Activities like packing to go on vacation were a nightmare and I couldn't remember conversations at all and had to write everything down.

But now that I am getting on in age I'm having a variety of other problems which to my horror remind me of my mother's gradual descent into vascular dementia. Forgetting words and names, losing track of what I was saying mixing words up, endless typing mistakes even when I have checked and edited several times, a frequent feeling of confusion, repeating myself and asking the same question two or three times embarrassing forgetfulmess and so on. That includes clean forgetting to take my meds which luckily isn't life threatening. Heaven help me if I had a responsible job. As it is, I can laugh it off as many people my age have similar difficulties and I just remind my kids to shoot me when the right time comes. But that doesn't stop me feeling depressed about it.

I realised that I was in fact badly depressed for other reasons too and I must say I am functioning better since I started Prozac. I also made sure I wasn't suffering B12 deficiency which my father had, or any other sort of anemia. I decided that as well as laughing it off, I had to accept and adapt, however painful acknowledging it was. For example, I never start on a story now or talk about any topic without checking that I know the names of the people involved. I make notes of what I want to say when I make phone calls and of what info I need to retain. I force myself to focus on one thing at a time - multi tasking is out. I also go over each phone call with the person I am talking with and frankly admit when I haven't understood. I even say that my brain isn't working too well these days and ask for patience. How I hate saying that

Many hugs
Clare

 

[onetay]

Jesse,
It can be very scary well new things happen to us. Maybe it is time to come clean with your friends and if they truely are your friends they will understand and help you whenever they can. It is important for you to calm down and see if there is something out there that might be able to help you with the depression or the memory. Speak to your doctor and if there is anything I am sure they will help you. We are here if you need us at anytime for support.

 

[lazylegs]

Hi Jesse,

I totally understand where you are coming from. It is hard enough to see your body decline, but when the brain starts to go it is devastating. Any self esteem you had really takes a hit.

When the memory loss first started I searched Alzheimer's sites for tips. They had some good ideas and I have since developed my own strategies. Maybe it is time for you to come up with some some simple tactics of your own.

Take care,
Lazylegs

 

[Jesse88]

Thank you all, you really are so helpful to me. I think you're right that I need to start changing the way I do things if this is going to be my life now. I will have to start making lists and notes before making any phone calls. As for talking within a group, I'm not sure how that will work because I can go over what I want to say in my mind, but by the time I start to say my piece, the info could slip away anyway. But at least I can make my phone calls more understandable. Clare, that part about "losing track of what I was saying" rings so true! Only those who have experienced it can know how embarrasing it is to be in the middle of a sentence and then lose the ending.

I'm going to do some research on vascular dementia when I can get up the nerve. My mom died from Alzheimer's so right now I don't feel like I have any chance to age gracefully as far as my mind/memory goes. I don't know if I'm just being absent-minded like my mom was before her Alzheimer's started, or if it's the lupus. I'd like to know because I could increase my medication if it's the lupus causing it. I need to remind the rheumy about my mom's Alzheimer's and if he still thinks this is the lupus, then I guess more meds are in order.

I will tell my friends about the CNS involvement. I've avoided that part because I don't want to be thought of as a ditz, but that boat has sailed. I look like a ditz now so I have to be sure they understand that it's something outside of my control. This is a small town and people talk, so this will get around, but I guess it's better for it to get around that I have mind problems because I'm sick, not because I'm stupid.

You've all been a comfort to me and have given me good advice as well. I will put on my big girl panties and get started on making yet another adjustment to my life.

 

[LolaLola]

Dear Jesse,
This sort of thing happens to me too. In fact, as well as the mouth freeze I recently had an episode where I could not even move. That was embarrassing there was no hiding it.

I just tell friends it happens, and I don't explain to strangers unless I really need to. Everyone messes up sometimes. Don't dwell on it.
x Lola

 

[Douglas]

I too have been experiencing more Lupus fog mental lapses lately. All my life my brains have been the best thing about me and now I feel as though my much vaunted brains are leaking our my left ear. I feel as though I can honestly say, "Of all the things I have lost, the one I miss most is my mind."
The thing about these memory lapses is that *everybody* has them. Lupus just makes me have an excuse.:lol: OK. Maybe the lapses are caused by some aspect of Lupus but, seriously, people understand. If they do not then I really don't care to know them.
May our brains come back. Or if they do not, let us not be bothered by it. I know lots of folks who have done well in life without showing any evidence of intelligence.
Douglas+

 

[teachmom67]

Word retrieval is tough for me when I try to do too much and get too much on my plate. When I take more time for breaks, get enough rest, and use organization helpers, I do better. I was also recently diagnosed with Attention Deficit and take meds for that which have made a huge difference.

Amy

 

[teachmom67]

I was 41 when dx with Attention deficit. They told me that more and more people are being diagnosed as (not so young) adults.

Amy

 

[momof2boys]

Jesse- I know exactly how you feel. The other day I wanted to check my e-mail and I forgot my password. I use this password at least 10-15 times a day, it is a work password. I literally sat up for about an hour trying to remember it, but I just could not. I got so frustrated and upset. I have been noticing other memory issues but I have been in such denial, I think this just proved to me what I already knew.

 

[LolaLola]

Jesse, You sound pretty upset about this and I am concerned for you. Accepting your losses takes time, and sometimes a big lump of negativity just comes round again to hit us. It won't always be like this. I have been ill well over 25 years, particularly bad for the last 9 or so, believe me it can be got through. Lupus never strikes the weak ones!
x Lola

 

[pollianna]

Jesse, please don't worry about this too much it does get better. I couldn't even make memories for a year and a half when I first got ill almost 10yrs ago. I couldn't hold a local telephone number in my mind long enough to dial, or remember seeing a movie. The doctors missed the Lupus, I thought I was done for. I started to make lists as you are planning and as I got a little better with every month I started to regain some of my short term memory capacity. I am about where you are now but I function. My manager at work knows and makes me get my diary if he needs me to change my routine.

I know about the embarassment, my spelling has gone straight out of my head but my grammer is still perfect? weird!!

Tell your friends that you have an illness that creates a problem with memory recall. Everyone I know knows and they are fine with it and help make sure I write down things I need to. Sometimes opening up makes things easier for us to accept. There's no shame in this and people can surprise us with their kindness and acceptance, those who don't aren't really friend material....

P xxx

 

[Jesse88]

Really, I don't know what I'd do without you guys. Your support and personal experiences really help me feel less alone. So much of what all of you say rings true, especially the "having an excuse" part where I can blame it on the lupus, whereas some people just have to admit to the aging process. I just wish it wasn't true.

I totally agree with the part about not overextending, in order to minimize the brain fog problems. I had been very busy the day before and was feeling "out of it" in general anyway and I'm sure that contributed to the problem. I guess little by little I'll learn how to deal with this, and your posts go a long way toward that end.

I'm still feeling a litte down today but I think it will pass, as usual. For the most part I just keep all my little lupus worries separated so it's easier to deal with them, but once in awhile I do get that "big lump of negativity" and this is one of those times, I guess. The good thing is, despite the Sjogren's there's nothing wrong with my tear production! I remind myself of that every time I tear up over some dumb little thing.

Lola, please tell me more about your "freezes." That sounds scary but you seem to handle it so well.

 

[LolaLola]

The most recent time I "froze" I had been to a funeral(not anybody close) and was going to make coffee afterwards for a couple of friends. I walked half way across the room then stopped dead, arms and legs wouldn't work and I couldn't speak or think. I apparently looked awful, as both friends who are not very observant usually were worried. When I was able to move again I went to the kitchen but was very clumsy, couldn't think what a sugar bowl looked like etc.

I do have some brain stuff going on. The worst thing is when I am in the car having arrived home and can't think how to open the car door. Another time I rode up and down in a lift at least ten times because I could not recognise the right floor despite having been there before and there only being three floorS. I even worried that someone would come and tell me off for messing about in the lift. Usually I cope but to be quite honest sometimes I feel like a three year old in a grown up world.

Hope this helps!
x Lola

 

[Jesse88]

Wow, Lola that sounds awful. I would have totally freaked out about it. Have you told the doctor? Doesn't this need to be addressed?

I just read on another site (for Sjogren's) about a woman who also could not figure out how to get out of the car she has driven and owned for five years. It seems brain fog is extremely common in lupus and Sjogren's.