[lilirishrose]

My memory has gotten so bad lately. I feel like I am in a fog. I'll go to the store for something and forget what I went for. I have sat for 30 mins trying to remember something, and my partner will try to help. She will name stuff we talked about and usually that will jog it. I have to write down everything. Now I need to start carrying a small notebook and pen to write stuff down. Its frustrating.............................Melissa

 

[lin]

i know just what tou mean, here are times i forget, but so d normal ppl when i was a child i remember now the lady at the shop saying to me, if you fetch anything else back we are not going to serve you, without your mum writes down what you ahve come for lol, so it does happen to ots off ppl even without lupus :hehe:

tkae crae Lin x

 

[LolaLola]

Hello Melissa, (pretty name),
Nothing wrong with having a notebook. Please don't worry, other people really don't notice very often when you have a blank spell. Try to laugh over it. I know it is yet another thing that illness takes from us, but it can be lived with.
x Lola

 

[ALWIN]

Hello Melissa

I have bought a big A4 size page a day diary for many years now. It sits open on the current day on my kitchen work top.

Everybody in the family has to write down their plans in it with contact numbers in case I forget where they have gone (children and husband). For example, I will suddenly wonder where one of my children is having agreed to them going on a sleep over at a friends house. Several times I have tried to be calm hoping they would get back home soon. The diary has stopped me from calling the police to report them missing on a couple of ocassions!

Every time something pops into my mind that I need to do I write it in there straight away. It contains lists of things I neeed to remember and there is a slip of paper clipped to it on which everybody can write down what we have run out of so I can add to it and take it to the supermarket with me.

I often have a secret micro-panic when approached by frieends or neighbours because I have temporarily forgeotten their name - rembering names is a big problem to me - takes ages with new people.

I am so used to it I no longer feel embarassed, or feel stupid, but it is very frustrating and I can waste hours loking for things I have put somewhere safe only to forget where that safe place is.

I even forget well travelled journeys from time to time. I will set off in my car and suddenly think, hang on, how do I get there? It once took me 1 hour to do a 15 minute journey because I repeatedly left the motorway at the wrong junction. I kept returning to town, getting back on the motorway, taking the wrong junction, ending back in town, leaving town, hitting the motorway ... I think I did it 4 times.

I forget how to spell things and get words mixed up.

So, Melissa, I really sympathise. It is very frustrating, but lists are not a bad thing at all, and the process of writing things down can help you to remember.

Wishing you a bright and memorable day.

 

[Katharine]

Hello Melissa,

Yes, that does happen a lot to us and it is not nice. I agree with Lola, most people don't notice (up to a point) and they don't notice notebooks either.

I am wondering though if your disease activity is well controlled for the moment? Cognitive problems can often be a lot worse when disease activity is not well controlled and improve when it is. Have you stressed this to the doctor, that it is getting a lot worse?

Usually it is not serious but my cognitive problems and memory problems became bad enough to have me forgetting which side of the road to drive on coming out of a one-way street. That's unlikely to happen to you unless you've driven in countries where the side of the road changes but still I had been driving here (and soley here) for eighteen years when it happened.

So, yes, it is very frustrating. Very often something we do have to learn to adapt to and live with but nonetheless something that needs to be monitored and that should be explained to the doc giving concrete examples of what you "forgot" so that they actually take it seriously. If you just say "I'm more forgetful" they don't take much notice.

all the best,
Katharine

 

[Katharine]

Wow Alwin, just saw your post, you are SOOOOO organised!!!!

Great tips there

 

[lilirishrose]

Thank you for all the wonderful suggestions. I will start carrying a notebook. my lupus is such that I am always in a major flair. Its severe, so I am always dealing with something. Several specialists say that that can happen, especially when its inherited lupu which mine is my dad's family all have horrible cases. My aunt and dad both died from complications of lupus and cancer. Any way thank you for all the support.........Melissa

 

[onetay]

Mellissa,
You are not alone here, many of us are having the same issues. It is often very hard to handle, as it was not that long ago I was pretty sharp. I am finding the the short term memory is the most effected right now. You are doing the right thing by find a pen and paper to keep important things on this will cause you less frustation in the long run. Does this go away? That I am not sure of some days are better than others. I myself have only been having this for about the past year now. There are some on the site that have had this longer that might be able to answer that question that I am sure is in the back of your mind somewhere lol. I am finding that words I should know and have said a thousand times are escaping me when I am talking also. I have tried some gensing but don't seem to be helping much guess it does not work for me. I wish you the best with dealing with this new symptoms and in feeling better soon.

 

[jillybean2003]

Hi Melissa

I am the same and at times it can be frightening and frustrating. Mostly tho I manage to laugh it off.
The latest episode for me was in the self service part of my local super market. Having put most of my items through the till point I picked up a vegetable and for the life of me could not remember what it was!!!!

With a queue behind me of about 5 people I just stood there staring at this green thing in my hand frantically trying to recall what it was! In a panic I began scouring the screen in front of me hoping to get a clue of its name and just as I was about to swallow my pride and ask the person behind me what I was holding the word BROCOLLI came into my head! Phew!

I am sure people must have been wondering what on earth was going on!
Well I have had many a laugh recounting this to friends and family. I really try to make light of it. It does seem to be a fairly common condition of this disease so I try not to worry about it.

I do find I have to write things down and always carry a note book or put reminders on my mobile phone. It is the only way I can get things done! LOL!!!!!!!!!!!!!!!!!!!!

All the best
Jill

 

[Sage Hen]

Hi Melissa,

I am sorry, your having severe memory problems, because of lupus.

It is so frightening. I have done most of the same things listed in the other posts..I even got lost on a walk, just a few blocks from my home, and couldn't find my way home. Thank goodness, a man saw me and realized, I wasn't "right." He gave me directions back to my own street.

Once, I got on Cellcept and Prednisone..along with the Plaquenil. My memory improved, however it is still very bad. I can read again, though
and it is such a pleasure..

I hope you can find a medication, that will help you with your memory.

The other's had some great memory joggers. I had to start using post-its. I would put them on my bathroom mirror..so I had to see them.

I called to cancel a dentist appt, just a few weeks ago, because I felt terrible. The receptionist told me since my appt, was only one week away, she was not going to give me a reminder call, a day before my appt.

I asked her could she please call me and remind me? She said.."can't you write it down?" I replied.."Yes, I am writing it down, but I won't remember to to read, what I have written." She got very indignant with me..I didn't feel well enough, to go into detail explaining to her..why I couldn't remember to remember..I ended up crying, after hanging up the phone.

I guess..I am blabbering on..but, I want to encourage you..Melissa. Hang in there, and be patient with yourself. You really, are doing the best you can, in life.. and hopefully, other's will be patient with you, also.

Love,
Sandy

 

[Pink Pearl]

Hi Melissa,
I will add myself in the "yup, me too" group. The hardest part was when I went thru steroid psychosis. It damaged my ability to turn short term memory into long term. I also lose words......can give the definition, the letter it starts with, how many letters it has....but the word itself is gone temporarily. It can last a day or weeks. Describing it was hard, until my doctors finally saw it happening.

I have always been a list maker, but am now an extreme list maker. If it isn't on the list, odds are it won't be coming home with me.

Hopefully things improve for you in a big hurry,
Sally

 

[pollianna]

Would like to add a little positive note to this thread. I couldn't make memories for 18months or so, still watch movies I am told I have seen and don't know how they end :lol: Most ironically 50 1st dates included :lol: I was sooo bad I couldn't dial a local land line number because I couldn't hold the digits in my mind long enough to get them to the phone on time. Every darn time I tried the phone would cut out as I took tooo long...

It does get better. I had no treatment and slowly it improved as I got a little better. Have to say though, am still unsure if I have replied to this thread before .It's still there but not as bad and I haven't had treatment until now....