Friday, September 26, 2008

My progressing Brain Damage #1 accompanied by Oga and other beauty

This is a post about my brain and the destruction that is happening to it. A destruction that seems permanent and no matter how horrific or terrifying I find that statement to be it doesn’t make it go away. I am putting in pictures from the double width page Oga Exhibition Catalogue, 268 pages shipped from Japan of an Exhibit, now finished of his complete work, and a Catalogue in Full and breathtaking colour. The first picture is a three double width page large display, a foldout starting his work (and a few pictures of other pretty things).

How do I begin? Because for me there is no beginning, there is no day, or week, or month, there is now and soon, and tomorrow sometimes, and sometimes literally just “now.” And when I am in a better state, I am able to articulate or try to explain to Linda how she needs to talk to me, which is to use simple sentences that do not refer to time or things outside of my memory. I need this because otherwise I will become worried to the point where fear overcomes me and I may be curled up because I do not know what “We have some bills hanging over our head but that should be okay by December” means. I know “Bills” and I know it is my fault and I know “hanging over head” and that is all I know. I don’t know what to do, I know that Bills must be dealt with and if they are “hanging over head” then they are serious indeed. I am frantic and by the time Linda sees me seven hours later I am trying to wheel down to a book store with books to sell or I have already done something. I have sold something and have $12 and I give it to her crying and ask, “Is this enough? Will this stop the Bills?” I do not sleep. So she needs to say, “Everything is okay.” Or “I am glad you bought that gift for XXXXX but we need to not buy much for a little time, okay?” and sound calm. And then say that again tomorrow or the day after because I cannot remember beyond five days, or what used to be five days, only now sometimes it is three days or less. “We are going to not buy anything more for a few days but everything is okay.” She says a few days later.

Do I know that being talked to like this makes me sound like a child? Of course, and people who are intimate with me say things like “while you might be not as smart as you used to be you are still one of the smartest people I know.” Which hurts. A lot. Because I spent my life obeying what I believed what my calling, my vocation, my onus by God, to use the gift given to me, of a unique mind that could remember almost anything. As Linda says, “There wasn’t a word or phrase however obscure I could say that you couldn’t talk for an hour on the history of or how it came to be or was used in history.” Which isn’t as boring as you might imagine as I delighted in the obscure like the rich who used to advertise for hermits to go with their “follies” (fake castle ruins, that they built; which wouldn’t be complete without a mad or poetic hermit to go with them).

And I am not a person who sits in my 60’s or 70’s or 80’s and realizes that a bit of blurring on the edges is inevitable. I am a person in my 30’s who has had a partial stroke in the right temporal lobe (it is believed, and all evidence supports), and now has seizures there, big seizures which PERMANANTLY destroy even more of what is already damaged. If not for Linda, Cheryl, my workers, the computer, my wall charts and other systems, the damage would be affecting my writing and my life more than it does. How do I know I want a punk backpack and now one with wings from Japan? Because I think about it EVERY DAY (it is literally re-imprinted daily). Things that are important I have routines. I also have sheets Linda has written and posted in places telling me what my routines are. What do I do to get to go to bed? It is written on a list, is #2 done, okay now on to #3…

See, I can’t even tell if I have already written this in a post for everyone to understand. But I have good days and bad, and I think this is a good day.

This lack of remembering is in a way why I am putting up pictures of beautiful things, because the things I remember best are those I am most emotionally connected to (I might remember the pictures and thus remember this blog). But yes, I forget Linda, and on a regular, almost a bi-weekly basis. This is painful for her, I know, and for me, because I pretend later, that I cannot imagine what it might be like for your partner of 15 years not to know you. What should I say, “Sorry about that TIA/mini stroke I had that night where I forgot you for two days.” It is only recently that I am now back to the present, or so they tell me, since I believed it was 2003 after another seizure. But with only 1,000 words or so, you don’t see what I have been hiding since…….haha, see, I don’t know. We argue, Linda and I: I say I have know someone for “years” and she says, “Since June”. To me that means almost the same thing except that it wasn’t as recent as June because June was very, very recent, and only now and then can Linda and Cheryl convince me that it is NOT June. I am not sure why I think it is always June or 2003 but I do.

Today and yesterday I asked five people “What IS Thursday?” and only Linda was able to answer me. She showed me on the graphs she puts besides my computer where she was and where I go and who comes and goes. I point to her sheet and point to 10:00 am and said, “I called, you not there, not Thursday. What is Thursday?” She said that she was different but Thursday was here. This is a concept I cannot understand. There are a lot of concepts I can’t understand. In fact, I can only write this because I haven’t HAD a seizure in three days, because time before and after a seizure is forgotten, and the mind retreats and I retreat. In my recent seizure which turned into a TIA (which is a micro stroke), which I can remember afterward, I woke up in an apartment I did not recognize. Linda was there but not Linda, a different Linda. And I came into the middle room with the computer and the computer my hands knew how to turn on, though I did not know how they knew that. It asked if I wanted to play a disc, and I did, and a show started playing.

The phone rang and there was someone on there I did not recognize so I dropped it. Linda was not here. There was a lot of mess. The counter was covered with things, and there were wheelchairs all over. I was very tired. Linda showed up. She said she was at lunch. I asked her why I wasn’t teaching. She said that I was sick. I said does that mean I wasn’t going to get any substitute teaching jobs until I was over the Mononucleosis (a disease which makes you tired for a month or so, easily caught at uni). She tried to explain that I was sick longer than that. I gave up listening and she could see that because my head was hurting. She told me I needed to use the wheelchairs. I said, “Isn’t this a bit much for mono?”

She laughed in an odd/funny way and then got me lunch and I fumbled with my hands, I must have been more tired than I thought. As she left she asked me what year it was and I told her (2003), and she shook her head and said she would see me in several hours. I watched the disc until it was done and then I went on the internet which was much faster than I remembered. But then, sometimes when someone would ask a question, like on the blog, I would know the answer but afterward my head hurt and I couldn’t remember how I knew that. I couldn’t remember what I had just written (which is on my left side of my brain) and when I read it back it sounded like someone far more sure than I would say.

Sometimes there are days that I cannot go outside or someone has to be with me to stop me from trying to go “home” wherever that is that particularly time (in this picture you can see Kiki if you look closely, from Kiki’s Delivery Service, running up the path home – Do you remember Lene, I still do?).

I also have emotional liability, which means I have extreme emotional responses, sometimes from nothing at all. I am not sure if I have talked about this. But for example, I have cried through almost two complete toilet rolls for no perceivable reason. This isn’t depression because that I can remember. And sometimes I am very content for no reason, but that is less often, because there are always so many people who want answers that I don’t know the answers to.

I spend my time getting postcards ready for people I cannot remember. I have to look up each persons' name on the computer and cards and read all the text and get a sense and pick the card for them and then do the next person, all 30+ cards. And when I do the wood blocks and the rubber stamping, I have to do it all over again. And when it is done and I put on the stickers and write the note, I send it out. One of the reasons I take pictures is that I have no idea how many postcards I have sent out. Cheryl I think estimates it is about 400-550. I don’t know. I don’t know how many “surprise” presents I have sent out or to who, I think it is 50-70. Maybe more. Now that I have no money I just use what is lying around. Which is the other reasons of these pictures is because I will keep things and then I will send them off but because I don’t know that I will remember a week or a month later and want to see it but I gave it away. So like a butterfly, I must appreciate what is around me, which is why I try to surround my desk with things that will appeal to me and stop me from looking elsewhere. I sometimes buy things like this A4 holder about the Anime show Air TV, which I can relate to far more than I would ever want to (“Gao!”). This I traded for, so it cost me nothing at all, actually I got some postcards in the deal which I sent out.

I think what I was saying is by the time I get the thank you from people for the postcards, I have NO IDEA what you are talking about. Please don’t stop from emailing me, because it is the way I know I am making a difference. I try to fake it in a reply but if they are happy then I am happy because the part of me that had a brain that day did good, even if the me of today can’t remember. I have a list, or lists for the weeks of the post and gifts that are sent and this week and maybe last week, I can’t remember, but there are ticks by some names so I have been trying to send out thank you emails to people. I am sorry if it is weeks late or only a week later, I don’t know. Sometimes the lists Linda or Cheryl make don’t have dates. One week Cheryl brought boxes and then we were busy all weekend and I simply didn’t open them until she returned because I could not trust myself to open things by myself, not to get them mixed up. I need someone there, someone with a REAL brain, to remember what came from which package.

I appreciate every piece of post and every gift, and I try to write back how they are emotionally remembered by me. And I hope that if you sent a gift you got or will get a email about that. But you can see why for me, I cannot carry the obligation of financial issues. I simply am not mentally capable anymore. I can work at making people happy, people who I may often forget until I repeat their name every day or every few days. Or people who make a strong impression. Or I will have a seizure after I open the gift and then forget and receive the gift all over again. Which makes it sound very romantic, like Totoro here from the movie of the same name, making the sound of the wind, creatures of the wild, of myth, always existing in the now.

Except in THIS WORLD I have to be watched all the time. I have a lifeline phone with reminders and the phone will NOT stop telling me there is a reminder until I push the big button and then Linda’s voice comes out and tells me exactly what to do. And I do it. Because the person who is MOST likely to overdose me is ME. I can’t remember 10 minutes later if I took a pill.

Is it great that the people and places I go know that I am brain damaged, that I “Used to be someone”? No. It is not fun to have a 20 year old snidely remind you that you took out that DVD last week, and “You ranted about how bad it was for 10 minutes.” And I have to smile and say thank you and find something else. Because I will remember the story: stories I remember.

I guess this is the end of part 1 of trying to explain what it is like to be brain damaged, and I REALLY hope I have not done this part already. Next time I will try to explain the idea of language schema and how exactly my language center is damaged and how sometimes I can fool people and how and why it becomes obvious. The fastest way is just start asking me questions, and I think I am speaking normally only I am speaking slowly with mixed word or “word salad”: words that start with the same letter but mean something else altogether, or I just get stuck and start stuttering, or I look around in confusion. And people turn and start talking to Linda because what is the point of talking to me, even if I CAN understand them. Except sometimes I can’t and I say, “I don’t know what you mean.” And sometimes they say it over and over and I keep saying “I don’t know what you mean.” And they get angry, this happens with Time a lot. My care worker stopped getting angry at me and now says, “Today is Thursday and soon you see Cheryl and then I come back.” Which I can understand. I still have a high IQ, reason and deduction, I just can’t understand sequencing, and I don’t know why, but knowing that you can’t understand something doesn’t make you understand it. I wish it would.

Oh, if any of the pictures here end up in a package to you, that means I have emotionally enjoyed them and am giving them on to you. It is okay to get them, and if you don’t enjoy them, please send them to someone who does. Because I am trying to send you the feeling I get, not just an object. It is a form of communication.

22 comments:

yanub said...

Yes, it is true that your brain damage does affect your ability to communicate--both to say what you wish clearly and to understand what others say. And that has to make everyday frustrating, especially with the diminishing grasp of time. Still, you are enjoyable and expressive, and it will be a long time, if ever, until you can no longer get an idea across. You are doing a great job of going around the mental roadwork signs and getting to your destination.

As you say, the postcards are a way to communicate, and they are not only beautiful illustrations with lovingly done add-ins, they are a beautiful illustration of how you have found ways to communicate what you are really feeling. I have loved each one you have sent.

Anna said...

Funny thing this brain of ours, It really is. It is hard to understand your difficulties since you are still very intelligent and extremely good at writing and expressing yourself. So thanks for trying to explain it. I am sorry for the loss. I really truly am. I have experienced similar things, but since this was due to depression/psychosis it went away when that did. It is hard to understand how time, and for me memory and certain skills just disappeared. It is frustrating to in one way be intelligent and then sort of mentally disabled in others, and understand ones limitations. It is also difficult sometimes to explain to others. You did a great job in doing that. I still has memory problems and to explain to people at work or otherwise that while I might seem quite smart and creative in some ways my shortterm memory is completely crap, is hard.

Thank you for your recent postcard, it was a japaneese anime, stamps and stickers were theme friends. And thank you for your e-mail. If you don't remember sending it, I still remember getting and enjoying it:)I'm using the last postcard as a bookmark.

SharonMV said...

Dear Beth,
Thank you for telling us how the brain damage affects you & how you & Linda work around it. I have cognitive difficulties sometimes when I'm sick, but it is transitory. I get extremely emotional when the Lupus is affecting my brain - it messes with the neurotransmitters. Sometimes I become extremely depressed for no reason. Now that I know it's because of my illness, it doesn't bother me as much. Sometimes I get very anxious & worry about everything & I can't think straight. Getting a bad viral infection or bacterial infection makes the thinking & emotional problems worse. Often the emotional effects come first - now that I understand this, it serves as a warning to me that I'm getting sick. It is hard when your brain's not working right, yet you have memories of it working better. For me, the worst problems are transitory.
For you it must be very hard living with the brain you have today but remembering how things used to be. I would be scared to wake up & not know where I was. You and Linda have adapted and found ways for you to function. And once again, just as with your time-sequence problem, you have a keen understanding of exactly what you have lost. And the skill to show us what it's like to live with that loss. Proof that parts of your brain are still functioning at a very high level.

By the way, bills are very scary even if you do understand the linear time sequence. Especially if you're the cause of them. sometimes that really upsets me too.

Sharon

Neil said...

Thank you for the explanation about your brain, Beth. I cannot imagine how frustrating it must be for you to be able to say so eloquently that you're no longer eloquent.

I'm still here, still reading. And I will be here until you can't post, whenever that is. And I'll still be here after that, wishing you strength and comfort.

Love and hugs to you and Linda,
Neil

Lene Andersen said...

"I simply am not mentally capable anymore."

That one shook me and it's going to follow me around all day. Probably longer. What it takes to realize that you're not intellectually capable to do something must be so bloody painful. Big hug sent your way.

Abi said...

This is a fascinating post. It's such a strange concept that you should be able to understand that you don't understand concepts many people view as basic. You have explained it very well, I think.

I feel so sad when I think of how you used to be. You seem to be losing more than most could, by virtue of having more in the first place.

Veralidaine said...

How silly of someone to say that you aren't as smart as you used to be. Smart does not mean knowing obscure bits of history, although that sort of thing does help notify other people that you're smart. You are every bit as smart as you have always been, Beth, because it takes a helluva lot of smarts to second-guess specialist after specialist, to make choices that hurt now but might add a few days to your life later, and to decide to reach out and make other people happy even as you are losing bits of your memory and function every day. I think maybe you are SMARTER now than you were before the seizures, because you now know things that nobody wants to know but most people will never know... like how to live as full a life as possible when you have a degenerative, terminal condition and brain damage.

I love the postcards and how they help you communicate and send feelings to others. I sent a friend of mine a link to the postcard project and she posted it on a forum. A few people sent their addresses and got postcards, and in case they do not get around to thanking you personally, here are some comments my friend emailed me from the forum:

"I just got my postcard, today! Very cool! It's a Princess Mononoke card with the main character riding a deer. On the back, the card is decorated with neat stickers and beautiful stamps. I sent the barest description of myself, and it's amazing how much the card and decorations match my personality. I love it!

I'm going to be searching for a postcard and some stickers to send back!"

"Very cool project, just thought I'd update...

Sent in my info a few days ago - got my postcard today! It's awesome."

"I got my postcard today - it's so pretty!"

So there are three more people who got a chance to communicate with you and experience some of those feelings that you send to people. There are three more people who may never have communicated with a person with brain damage before, but who now know that brain damage or disability doesn't mean someone is stupid or incapable of reaching out and being a friend to others. There are three more people who, just maybe, if you happen to wheel into their video store, will just say, "I remember that you didn't like that film. Are you sure that you want to watch it again?" instead of being insensitive and snotty. At least, that's the way I look at it.

cheryl g said...

Hey Sis

Thanks for the explanations on how your brain works now. I know I have said things without thought and have hurt you. I am sorry and will try to do better.

Your postcards are a wonderfully expressive communication with us. I know I cherish mine.

Nancy said...

Hi! Your lovely postcard arrived in the mail today: it's a Japanese scene of boats on a river, and it's absolutely gorgeous. I've put it on the fridge, so I can see it often. :) Thanks very much!

Laura said...

The way that you write makes it so hard to believe that you have such problems. I know that it takes some hard work to continue to write at the high level that you do. Your drive and determination serves you well, you still manage to LIVE! I just wish things ween't this way for you. I don't think that I would fair as well as you have. Love and hugs to you my friend.


T-shirts with the wheels and wings design: Come to http://ofwheelsandwings.blogspot.com Leave me some suggestions as to what you would like.

Neil said...

It sounds like your brain can do things if you're not quite concentrating on them, like using the computer or answering certain questions.

As for the 20-year-old clerk who is rude about you renting a movie twice in a week, well, there are some people who just can't understand real humans. Maybe you wanted to give the movie a second chance, or had a reason to look for a particular scene.

Just communicate the way you can when you can. We'll keep reading, and keep loving you from afar.

Hugs,
Neil
in Regina, where it's cloudy and the green trees are turning yellow and gold.

rachelcreative said...

When my brain stalls it can feel so devasting - like I am still me but trapped somewhere inside in a place where even I cannot connect to. I am lucky lucky lucky that for me this comes and goes - that most of the time (currently) my brain is working with me.

I'm not pretending to understand what it must be like for you. But your blog post about it tells us so much and I thank you for your courage in telling this story.

I wish I had something cool or comforting or wise to say. Instead I just let you know I'm listening.

Tammy said...

The brain is so complex. I can not fathom what is happening to you, or understand completely how your mind works, but I can see that you are still very much you.

I recieved another postcard from you today. You have no idea how much of a lift it gives me. Thank you.

Victor Kellar said...

I have a weird kind memory, Collette is convinced that it is "selective" I can remember whole scenes of dialogue from a movie I saw nearly 40 years ago but I struggle to remember phone numbers; I can remember snippets fo conversations I had in the early 80's but if Collette tells me at 10 pm to bring up the laundry in the morning ... there is a slim chance I am going to remember it.

My sense of time is a little strange. I have a very good grasp of when a minute has passed, or an hour, but don't know if some even happend two years ago or five, in my mind it feels the same.

Some of this is just the way my brain works and maybe some of it is from some things I did in my youth. I am in no way comparing my situation to yours, Beth, but I do have some small appreciation of what you are talk about, as have had others here.

Like everyone else, Collette and I love receiving post cards from you and we were rather overwhelmed by the fan and bento box you sent us; but really, all we want you from you is your friendship and the connnection afforded to us through this blog. And although I know your pain is real, I know you despair for your mind, your voice is still clear, it is still strong and we are still listening

OneSick said...

It's a funny thing about the "hand memory". I get that a lot. I won't be able to remember a phone number. But if I pick up the phone and think of the person I want to call, my fingers will somehow pick up the pattern. Maybe the pattern is stored elsewhere in the brain? However, if you tied my hands behind my back, I couldn't *tell* you that number to save my life.

I wonder if this has been studied?

And I wonder about the time thing? I tried to research this a little because I thought "'temporal' Doesnt' that mean "of or pertaining to time"?" OK I didn't have the exact dictionary definition in my head. I just C&Ped it, but I was there.

And then I tried to look up how and where the brain processes time, and I couldn't really find it in the time available to me. Maybe I couldn't find it because the because the answer is in the question? Hello? Why are they called *temporal* lobes otherwise? So it makes perfect sense that your time and sequencing is getting messed up by temporal lobe damage.

Not that it helps to know that.

Having lost about 40 points off me own IQ, I do know some of your pain and frustration. Brain damage sucks. Period. And it is difficult to see the Bewildered Looks of people who know that you used to be able to understand/do/process that, and the horrified realization on their faces of How You have Changed.

All's I can say to them is deal with it. This is me now. Love me or leave me.

OK. How did I manage to turn a comment in support of *you* into a rant all about *me*? I'm talented, I am!

(((hugs))) You are not alone.


One Sick Mother

desdemona said...

Hi!
I'm sorry I've kind of dropped off into the ether for a bit but life's been hectic. Not as hectic as yours (used to be?), I didn't have appointments every day, only every second day, but they completely did me in!
I gave Sam the Kiki movie a few years back, I think for easter or christmas or his birthday (how's that for memory loss, ey?) and he loves it and I enjoy it, too, so it's not such a pain to watch with him ;-)
We have a movie with a walking house/castle, but I don't know the english title. If I remember to look it up I will.
I don't have brain damage or strokes, I'm only breastfeeding (still) and as you can see I'm totally worthless at remembering stuff.

yanub said...

Oh, you big silly, the photos are great! I really enjoyed them while I was reading your post, but was just too tired to incorporate that response into my comment. But I should have, because you put so much effort into making your blog visually appealing. The four panel nature scene? Very wonderful! As are, of course, the rest of the Oga and the Ghibli.

Elizabeth McClung said...

I am not sure how to respond to some comments, because this was probably one of the most vulnerable posts I have written but I WILL come back and give individual responses. Because pushing myself to be honest and record this is important to me.

A Bear in the Woods said...

Hi Elizabeth,
You are someone very special to me.

And you are a great writer, no matter what your brain tells you (or doesn't tell you).

The ability to catch the flow of the moment in words is rare, precious, and very costly. To the writer, I mean.

When I read this post, I feel almost as if I am looking at one of those late Van Gogh canvases where you can feel the sun bathing the wheat, and the wind brushing the stalks.

You make me feel it when I read you.

Elizabeth McClung said...

Okay, I can do this:

Yanub: I was hoping that except for those days when I come from the hospital and have a large "Brain go boom" episode, my ability to communicate had not been changed that much on the blog. I do take several hours to do what used to take 40 minutes to two hours but still it is just a small part of my day (sorta). I don't want to be simply entertaining, but then, That IS why I have no advertisement or anything else becuase I want the writing to be compelling. I want people to be challenged and keep coming back, that's why I will keep writing parts of this even if it hurts me (like makes my head hurt) to do so.

I am glad that the postcards are also visual metaphor. I hope so which is why matching the postcard to the person takes about 20-40 minutes. Seriously.

Anna: It is a funny thing, you don't know what you had, until you did not have it anymore. I know that I cannot remember every line of every book I have ever read anymore (no more easy catching of students plagerizing). I cannot write short essays using sources because I cannot remember the sources.

I too used to have a non-memory, or a blank memory due to depression but since I was unmedicated bi-polar, I would use the highs when I was able to think at 3-4 times the speed other people could as a time to catch up. To be unipolar um, to put it mildly, "Sucks!"

I think it is always hard to try and explain memory or brain problems both because, how can you explain what doesn't work with the organ that isn't working (the brain) and second, people tend to react poorly.

SharonMV: What you say about the emotion and the neurotransmitters makes sense, but I wonder about the story behind that - the years when you did NOT know why it was happening.

Interesting that you can use brain changes to note physical changes. I think Linda and Cheryl are beginning to do this, to notice an increase of word salad or other things, as well as some genuine 'damaged' behavoir and figure out ways to help me get out of them since I don't realize I do them. When I was told I think I cried for several hours straight as what can you say when two people you trust say, "Yes, this is how you act, this is how you talk" and it sounds like not you, but some person who has had a car accident or some mental damage and you CAN'T REMEMBER what they are talking about, or the day even.

The difficulty is that for me, as they see my loss of verbal and other skills as signs of physical issues, I tend to relate it much more to the infantilization of illness; that in essence the solution is to go to bed, that I am, like a child, out of control and thus need a nap. It isn't that simple of course, but emotionally it feels that way.

Thankfully my sort of Parkinson's aspects of fog life only seem to be about once a week - I have to wonder if I leave a map in my handwriting by my bed, would I recognize and trust it? When my memory is gone. Would I know to wheel to my study? Dunno, I don't see any books on this.

Neil: Once I am without language, I will cease to be Elizabeth. So I will post in some fashion or another until it is done with eye blinks. The problem now isn't always that I can't communicate, but rather, does a confused Beth of 22 know how to blog?

Lene: The list that follows that statement seems to get longer every week and I can't say that I don't cry about it and it is one of the things that is causing my current "blues" - How do I show I love Linda, how do I make a difference to others, how do I continue? The obstacles become higher every month.

Abi: I think my dexlexia and other invisable disabilities I grew up with helped me know and spot in others things that people took for granted that a person should have. And so I can continue to spot them and be attuned to some inconsistances and the reactions of others.

I suppose the bright spot is that my mind, like my body, having spent so long to get it to a high level, can take a beating that might incapacite others and still manage. Indeed, 'managing' seems the new hobby.

SharonMV said...

Beth, I didn't know for many years exactly why it was happening (the mood problems & cognitive difficulties that came with a Lupus flare and/or bad infection. I knew these things were associated with the physical part of the illness (which was then still mostly undiagnosed). I thought having a fever & the fatigue & pain of being ill accounted for some of it. And I was diagnosed with fibromyalgia early on & found out about "brain fog" being part of that illness.

I told you before about the one major psychiatric incident I had when I was in my twenties. I just has to put that behind me & go on, as there really was never an explanation as to why it happened. After I became ill again, I was eventually diagnosed with depression & treated for that. But I knew it was more than just the depression that can come when one is chronically ill. And ofter I would have the mental symptoms prior to the physical symptoms at the onset of a lupus flare or acute illness. Out of the blue - for no reason at all. And then hours later, the fever, etc of the physical illness. By the way, I am very much like a child when I'm getting sick & I do need to go to bed. It has been much easier to deal with these emotional & mental symptoms since I know the connection to the physical illness. The used to call Lupus that affected the brain & central nervous system, CNS Lupus (Central Nervous system lupus), now it is called neuropsychiatric Lupus. It has both neurological & psychiatric components. One article I read said that the psychiatric symptoms of NP Lupus are most similar to those of bipolar disorder. So we have yet another thing in common.

Sharon

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Anonymous said...

Don't stop posting such articles. I love to read blogs like that. By the way add more pics :)