When I cannot remember “Faking” is when you talk to someone in the hopes that you will pick up cues and/or remember who they are. I was not faking very well today. Some more memory is gone, at least for today; many words gone too. I watched a video of me playing badminton. I put it on the blog yesterday but I do not remember playing those games. But I must have remembered yesterday.
Today I went to watch a movie and I knew the ending, I knew I had watched it and yet, I could not remember anything until it happened, at which point I could remember that I had seen what just happened before. Linda says for most people this sometimes happens. It was not something that happens to me. I do not know how to cope with that, reminded every minute that you can’t remember. So I turned it off.
Then we went to see Janet who had fixed a racing wheelchair for me. I can remember a picture (I put on the blog) of me in the chair wheeling with a blue cart in the bushes in the background, but remembering that is not remembering DOING it. And I can’t remember wheeling it. But now I have the racing chair. Linda says there is a “story” to the chair, how it works now and before it did not.
When we came out, I went to where the van was, at the end of the row. Only Linda was standing holding open the door of a black van at the front of the row. We have a black van, but I KNEW, I REMEMBERED it was behind another van at the end of the row. Indeed, even staring at her with an open door of the black van which logic tried to say should mean it is OUR van was not as strong as what I REMEMBERED. My MEMORY was that the van was not there, it was at the end of the row. So I had to go to the end of the row and come back. It is things like this which make this a “Bad day”
Linda says that our van WAS at the end of the row last time, on Monday, behind another van. But I do not remember that. I do not actually know what “Monday” means. Except that I remember that there are seven days and one is called Monday. But to remember what happened today and then remember what happened yesterday and the day before. This is not what I know. Linda says today is Wednesday. She says that Monday comes two days before Wednesday but I have no memory or memories that links the days between today and Monday, so it could be a week or a year from the Monday of the van memory to now. I remember going to the track, I remember going to the hospital, I remember doing a video of pictures, I remember going today to see Janet. I remember the movie and seeing Janet. But the other memories I do not know how those go and link up.
I went tonight and played a little badminton, after I slept a long time. Linda was working at home on the computer hooked up to the government. She did not like that I went. She says I “push myself” and while many people will not let me fall, because they only see me as doing things that are good and not the other times. She also says that I do not know how to stop: I do not know how to fall, only to break.
I lost some games tonight at badminton, two games 14-14 lost 2-3 in the tiebreak. I also sprained/pulled/bruised part of my left foot as it is dark purple. This was probably when I pushed myself out of the chair at 14-14 and missed the drop shot the other team made. When I hit the floor, my racket went flying. I wish I had made the shot. But now my foot is funny. The two times tonight I fell over and the chair fell too, I made the shot. I think I should learn how to move the chair instead of falling over.
Linda put up a Hello Kitty hanging by my bed because I don’t remember buying it. That way I can enjoy it again and again. I like it.
I can write the word “scok” but not say it. Except the computer says that is not the right way to type it, but that is what I say. They are things you put on your feet. And I called Jeff at badminton, “Ffej”. He thought that was funny.
Linda says that maybe tomorrow will be better.
I’m sorry but today this is what I know.
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34 comments:
Memory wise it doesn't seem to be a great day. But, you are still here, still blogging, still resisting in your way.
No badminton until Saturday now if I remember right so why not take it easier for the next couple of days.
Remember this, Elizabeth: you are loved, and we, your online family, are here thinking positive thoughts for you and Linda.
Now do what Cheryl tells you! And Linda too.
Hugs and prayers for a good sleep and a better today tomorrow,
Neil
I am with Linda on the you taking it easy thing. It's one thing to push yourself to do things that need doing or that you really want to do. It's just stubborness to push yourself out of habit. I'm sure Linda can mind the blog for you while you take care of you.
As for forgetting things, I have bought the same book three times, only to realize in the middle of it that it was a crap book that I had bought and gotten rid of previously.
My postcard from Japan arrived today! Thank you so much. It is going up on top of my chest of drawers where I can see it from the bed :)
You're still writing and we're still reading. Good and bad days & all the days in between - we are still friends. Let yourself rest.
Sharon
I wish I had your ability to push myself. I didn't make it out the door on Tuesday because I just couldn't get myself going. I think it was the rain that threw me down below the event horizon of the black hole. Yesterday I made it into work about 3:00 pm and worked until 7:00 then walked home and fell asleep from 8:00 pm to 1:00 am. Now I am up until probably around 5:00 am then sleep again until 1:00 pm and start the struggle all over again. I have missed 4 out of 6 work days over the past 2 weeks and have gotten way behind. I am just a volunteer, but it seems I am the only one there that knows how to use Adobe Illustrator so if I don't force myself to go for the next week, the paper will go to the printers without any ads in it (and then we won't be able to pay the printers.)
Come to think of it, I guess I do push myself somewhat. If I had taken the bus home instead of walking the 3 km from James Bay I would have only needed a 3 hour nap instead of a 5 hour one. But that kind of pushing only happens when I am already out and about and have built up momentum.
BTW, you may not remember such a small incident, but that was me who said hello to you on your way to badminton yesterday.
Ugh, I hate when I lose words.
Hang in there, kiddo, but above all, do what Linda says! Pushing is good, but rest is good, too. You rest and you can push more another day.
Best wishes from your honorary eccentric aunt Sara in Massachusetts
xoxo
I find that if I try to force myself to remember what I cannot, it stresses me out and actually makes it worse and happen more often. If you can, sometimes it's best to just 'let it be' (so waaaay easier said than done for someone very type-A!) and wait for things to come back and if they don't, then they don't, you make new memories.
One of my docs once said it's like a tape recorder where the machine is running and the little red 'record' light is on so looks like it's working fine, but not actually recording anything to play back later. Or what little it does record is done more of a 'mixed tape' that jumps around than a proper one that plays an entire song in 1 setting.
Frustrating, I know. Hope today is a better day for you.
More hugs. Rest and try not to push. Memory is a tricky thing. It will come when it comes and not before.
Aw, sweetie. So sorry you're having a bad day. Please rest and let the memmories come back at their own speed.
Elizabeth, just ignore the email I sent you for now; I know it probably does not make sense at the moment but don't worry about it. I hope it is useful to you but you dont need to concern yourself about it. Concern yourself with yourself, that is what is important right now. Taking it easy, taking care of yourself is not bronze, it really is a sign of strength.
And last week I came home from grocery shopping proudly showing off the fact that I had found a can of this stock I can never find .. and Collette showed me the two other cans I had in the cupboard, purchased by me in the past two weeks. I told her "I can't remember anyting anymore" and she said "No, you just want to make sure you don't forget"
Take care
prayers and positive mojo coming your way...
Personally, I'd prefer you don't go to badminton on Saturday. You need sleep, you need things that are slow and beautiful and don't involve you throwing yourself out of your chair.
You pushed yourself too hard at badminton (entry previous to this one), and this is the result you said may come. It's time to rest. Badminton will still be there next week.
Thanks to everyone who has so far reassured me without knowing it. I have in the past purchased multiple copies of videos and books, and for a while there was a running joke about making sure we bought spaghetti - we had 10 kilos of the stuff for a while.
Beth, while you may need exercise, try something more gentle; feeding squirrels is good.
In the five months I have been reading your blog, Elizabeth, I have learned to look at life, and the people around me, much differently. I have learned a lot from you, and I hope to keep learning. Thank you for being here.
Big, Russian-style bear hugs to you and Linda from Neil in Saskatchewan
Hang in there, cuz, keep resisting, and get some sleep. Remember, you may have a crappy memory right now, but you could STILL whup my little girly ass at badminton, boxing, or just about any sport 10 ways to next Tuesday.
I think Dawn's on to something:
"You need sleep, you need things that are slow and beautiful and don't involve you throwing yourself out of your chair."
(And Linda's right about the movies: part of the pleasure that comes from re-watching or re-reading comes from the forgetting.)
Even though it's impossible, try to rest.
Cheryl: Tonight is boxing nite, I think. It is a better day but not a good day.
Neil: the people online are my family. I have no other. Linda is very bossy and has MANY things she tells me to do.
Yanub: I am not stubborn (or I am stubborn but on this I am not subborn) I am just doing what my habit informs me.
Other people forget things, I do not. I am sorry you kept buying the book. When I remember, then I can recommend some books.
VK: I called Linda about this to find out how long it has been since Japan and she says this is a long time to come for a postcard - our apologies for the postal delay but glad you like it.
SharonMV: Yes, I will try to rest and I am very heavy. But I will do my best to stay connected.
Stephanie: that sounds rather frustrating, both missing the days and then when you do something finding yourself so tired. I did see you and said hi but I was very late and if you do not show up in X amount of time, your spot is given to someone else which is why I continued on; sorry.
Saraarts: Words are what I am, what I use to paper my life. I need my words. Things are heavy and flat without them. I will try to rest. I fear to rest lest I do not rise. I think I am like an energy anorexic, I fear to give in - in case I am not longer able to get it back.
Katrin: I do not understand your doctor. But I do understand that I can go around words until people know what I mean sometimes. I have more words today than yesterday.
Perpetual Beginner: And yet I had more, even the people around me look at me oddly now because I am not supposed to be like this, though I do not know how I can be any other way, they will not tell me how to be the way they expect me to be. Sorry, thank you, some frustration.
Lene: My memories are on vacation and I think they lost all of themselves in Vegas and now I will never get them back.
Victor: To do nothing or to sleep and wake up a different collection of what is inside is an amazing idea. How does it work? I hope it does work. Maybe I will take many naps and then when I get the "me" I want I will do all my writing then.
Yes, sometimes I cannot remember except that something must not be forgotten.
Coopernicius: Thank you, I need more mojo!
Dawn: My arms turned green today. That was slow but not normal. I do not like it that what I do, makes me less of what I am. Is that not the opposite of what doing things is supposed to do: make your collection of what is you greater?
Neil: I thought badminton WAS the gentle exercise, maybe it I don't throw myself out of the chair so much?
You said to Dawn, "I do not like it that what I do, makes me less of what I am. Is that not the opposite of what doing things is supposed to do: make your collection of what is you greater?"
I humbly suggest that what you do does indeed make your collection of what is you greater. You are just having some trouble putting it all together in your head. I hope you can take some reassurance from the fact that all of us see you continuing to expand who you are, and that maybe you can have some patience with you. You are worthy of patience.
I look forward to your book suggestions.
I am torn Sis... on the one hand sweating does seem to help your circulation and boxing makes you sweat... on the other hand the strenuous activity may well be TIA overload.
Ummmm... if you do box I urge you to not spar or at the very least don't take head shots.
Did you take a picture of your green arms?
Yanub: It is an interesting idea, like a person who cannot see themselves in a mirror. I will try to understand. Are people my mirror? I look forward to suggesting when able.
Cheryl: No, I did not know where the camera was but I did show them to my home care person who said that heat and me did not seem to mix. If it happens again, I will take pictures, as I can (the stupid cameras like to "autoajust" for "natural skin tone").
Linda says with a strange smile, "I am the boss and you aren't going boxing." She says that I can play badminton with you if you stay instead.
Just wanted to stop in and say hi for a minute. Sorry about the memory problems. Love the Hello Kitty hanging!
Love and hugs. Please rest so you are good for a visit. The frogs command it.
I think maybe you're going to have to trust Linda (who loves you very much) to be bossy in order to keep you as safe as possible.
She can see a bigger picture than perhaps you can right now and she is the one who is always there good days or bad.
I don't ever want to tell you what to do because I wouldn't want to deny your passion and your fire.
I know you struggle to see quiet and rest and not-doing as things which are rewarding. But I know it IS possible for these things to be fulfilling. But it might take some time to adjust to that idea!!
My brain is muddled so I'm not sure I have a point!
Lots of love to you and to Linda.
Sigh. Sending prayers and hugs. M also plays as if she understands or "fakes" understanding. Some times I fall for it and then realize she has no idea what I am talking about. This is the worst during her cyclical vomiting episodes. I imagine it is quite a frustrating feeling.
Catching up on your posts. Despite it all you do manage to post. Hugs to Linda as well.
I think that not remembering movies (or TV shows) that you've seen before can actually be a good thing. I know sometimes when I'm tired and/or not functioning particularly well, I can watch the same video three times in a row and its new every time. Which saves on rental fees and finding new things to watch, I guess. Your favorite shows never get old, and you don't get bored as easily, when things are always new.
That's all the optimism I've got; I always did suck at being positive. Anyway I think you're brilliant (in both the intelligent and the bright shining star senses) and I hope you have some better days soon.
Hey Elizabeth, yes, I think we are your mirror. And if we see gold where you see bronze then maybe we have a clearer image.
I'm sending love. I'm grateful that you are writing.
Now pay attention to Linda a bit, she has your best interests at heart.
Go Linda! OK, no boxing and we can play badminton Saturday. It's a good plan.
Elizabeth, this is scaring me. Please take some time away from doing things? Go visit the squirrels, give them nuts. Watch a movie, even if you've seen it before -- ask Linda which ones you like.
So long as someone keeps us up to date, we won't mind if it's not you.
Michael
I've always been bad at putting names to faces and sometimes I find it hard to recognize someone who has had a change of haircut. I've evolved strategies for dealing with this, ranging from the question, "What have you been doing lately?" to the acknowledgement, "I know it's silly, but I'm bad at remembering names - can you remind me?" I don't like doing this but it's one of the ways I cope with a poor visual memory - a problem I've had since childhood. I can make myself remember things visually and train my visual memory but it's a conscious process that I developed in adult education classes in art history and film - you may find you can train your memory too - I believe the conscious process may use a different part of the brain.
Dear elizabeth,
just checking in to say goodnight. Sending my thoughts up north. Yes, listen to Linda, the boss lady.
My state, California, legalized same sex marriage today. Hooray for CA!
Sharon
Elizabeth,
The delay was more likely to have been my end. Postage in Bristol is going stupidly slow at the moment (and there isn't even a strike on!)
I'm a cynical bitch who never says this to anyone, but Elizabeth: you are very loved. Please put me on the list of people you might call on if you ever need anything. You are my friend.
Frida: thank you, I like the hanging as well, it is very Japan AND very Hello Kitty.
Maggie: I do not know if I can be good, but I can be visited, and someone said there is up and down and so when I am up, like when I woke from my nap yesterday, I go with it. I guess living in the NOW got a bit more immediate.
RachelCreative: I think you have a point and as Linda showed, if you distract me with enough gothnip, I can actually be distracted enough to be excited (not exactly QUIET, with the squeals and such) but less taxing on the bod. So I think I need to make a list of activities for the different Elizabeths.
Marla: Thanks for coming by, I know you have some major things going on and I have been thinking about you. I get tired of having to tell people I am stupid, or I don't know and so it is better to pretend and then ask Linda later (if she isn't the one I am pretending to), what the person was talking about. This happens sometimes when someone uses a sentence that is in my "black space" and I don't know what they said, it is just like they spoke an alien language.
Tayi: Yes, I should find my favorite shows and rewatch them. I did suggest to Linda that this week end we watch a particular film and she told em that, um, we had watched it last weekend. And I said, "But it is a really good film!" (I did not remember rewatching it) - which makes me think my viewing habits are like a child who will watch it over and OVER.
That was optimistic and I will have better days and bad days. I know how to be when I am better, I do not know how to be when it is bad.
em: I am sorry that I cannot read all the blogs and sometimes when I can, I have to catch up because of the other days but I am glad you like that I write and I will keep writing regardless. Linda has interests at heart, are they mine?
Cheryl: Plan implimented!
Raccoon: This is kinda of scaring us too because we cannot understand what is causing these things; I am healthy but I keep having attacks and seizures, so I am not healthy, and I keep going into heat exhaustion and the circulation in my body keeps flipping (sometimes every 20 minutes) and I do not know why. I do not know what to do or not to do.
But for now, a little rest and see what happens. Thanks for your concern.
Kathz: yes, I must work at linking things, and connecting things, at remembering things that have happened. When what used to be automatic becomes a twisted path, it is hard to know what one is supposed to do.
Sharon: I read, it was great - two down and 48 to go, we can ALMOST move to the states if we want. Or at least to California. Congrats.
VK: well, it came, and that is important. Bristol is the sink hole of post? hmmm?
Retired Waif: I understand, thank you for telling me, particuarly becuase you mean it when you say it. I don't think a friend (me) who was a friend would ask much of a new mom who is recovering from IVIG illness, but thank you, thank you. You are my friend too.
Memory loss doesn't have many perks, but it's kind of fun, in an odd sort of way, to enjoy something as it if were new again. My mother loved having a rapt audience to all of our family stories (some of which have been shaped and moulded into real narratives) for the fist time in years.
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