Scatterbrained, with Heavy Fog.

Eleventy-One Things About Me, #50: I'm not as smart as I used to be.

Note: This is a post I wrote several months ago--actually started writing before I knew I was pregnant. Things have gotten a bit better since then. My doctor told me that it's quite common for pregnancy to make cognitive issues worse; that "pregnancy brain" is a real thing even for people who don't have underlying cognitive issues in the first place. The first trimester was the worst; and was the most frightening since I didn't know there was the factor of pregnancy exacerbating things.

Things have improved a bit, or I've gotten better at coping, since I wrote this . . . I've gotten lost while driving far less the last few months, and have been able to get places in at least somewhat of a more timely manner, for instance.

But as we approach the baby's due date (5 weeks away as of tomorrow!), I know that once the sleep deprivation of having a newborn hits, it's almost certainly going to get worse. Massive sleep deprivation tends to have a hugely debilitating effect on me, which is one of the reasons I've basically stepped out of nearly all commitments for the next year or so. I'm planning ahead for the baby by not planning anything at all. My plan is to stay home, rest, and do as little as possible for as long as necessary. :)

I was conflicted about posting this, but I finally decided to go ahead and put it up. Maybe it will help some of my family and friends understand a little better.


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"You're just so scattered!" the voice on the phone screamed. "You never have it together; you forget things; you're so slow and I always have to wait for you! How could you not have all the information together when you asked me to call you??? You make me crazy!!!"

"I'm sorry," I wept. "I'm sorry."

"Don't tell me you're sorry! I don't want to hear that! Just--just stop being so scattered!!! I want nothing to do with you any more. I've had enough of you. I don't want you in my life, and I don't want any dealings with you, ever again!"

More incoherent screaming, and then the phone went silent as the person on the other end slammed it down.

I had tried to share some upsetting news that I thought they would want to know ASAP, and that I felt it would be better for them to hear from a friend than to find out online or in the news. I wanted to shield them, to make the blow softer. But, although I had gone over and over the information before the phone call (both aloud to my husband and silently reading it repeatedly to myself), and had pulled up a web page with the information so I would have it in front of me before I sent a note asking them to call me, my efforts only backfired.

Between the time when I'd first started trying to contact them and when they called me back, several hours had passed, and in the interim my brain had crashed.

I'd opened my mouth to say the name and thought I had said it correctly, but the voice on the other end of the phone told me that I'd said a different name and was yelling at me wanting to know which it was. I didn't think I had said the name wrong, but it was quite possible that I'd said my sister's name instead of my own middle name; the name of someone who had been killed in a tragic accident. Sometimes what comes out my mouth is a different name or word than what was in my brain or what my eyes were reading, and it often happens without my even realizing it.

At that moment the internet crashed (service is spotty out here in the boonies) and the screen went blank both on my phone and on my desktop. My mind went blank with it. I simply could not retrieve the information. The dreaded brain fog and short-term memory loss hit, and the more stressed I got the more my inability to process or communicate information suffered. The harder I tried the worse it got. Even if I'd had written it down on paper, at that point there was no guarantee I would have been able to make sense of the marks on the paper.

I didn't blame them for being upset; I felt terrible for botching something like that so badly, and said so.

I frantically tried to get the internet back up and pull up the information, apologizing and trying to explain what had happened. But by then my "friend" was screaming and yelling, and then hung up on me.

I tried contacting them a few times to explain and apologize, but it did no good. The relationship was gone.

"Just stop being so scattered." If only I could.

A few years ago I had hired an acquaintance to do some work in the yard, and was trying desperately to communicate with him, but having difficulty understanding what he was trying to say, figuring out and communicating what I wanted to say, walking, writing, talking, and just plain staying upright and functional.

Finally, half-joking, I said to him, "You know, I haven't always been this way. I used to be really smart."

His eyes widened. "Really? Wow. What did you say your disease was called again? I had no idea it could do that."

It can, and it does. Studies have shown that several of the conditions I have literally cause brain damage.

I haven't always been this way. It's not because I don't try or don't care. And, yes, it breaks my heart that my disabilities cause so much trouble for others; that it affects so much more than just myself.

No, I won't stop trying to find ways to manage it better; to be more functional. I don't use it as an excuse to stop working at doing better, and I won't give up. But I can't always predict when things will change; when the coping mechanisms that I've been using fairly successfully for the last several months or years will suddenly no longer be enough.

Some days are better than others. Especially if I rest up for several days ahead of time, I can often pull out several hours of relative sharpness and functionality. I can often function decently well, especially in a situation that encourages adrenaline production, and especially if I don't stop or slow down until it's over. But it's difficult to predict when it will all come crashing down, leaving nothing but shards of broken energy and clarity.

Ironically, it's the day-to-day things that cause the most trouble. Getting ready to leave for an appointment is one of the worst. I look at the clock, but have trouble making sense of it. Or I go downstairs and then get there and can't remember what I came for. Things always take far longer than I estimated, and the more stressed I get the longer they take. I drop or spill things trying to hurry. Most of all, I can't find things--I've tried to establish specific places to put things, but that doesn't always work.

I can't find my keys. I look at surfaces and into spaces, but my brain has difficulty registering what's on or in them. I look everywhere I can think of, looking in the place where my keys are three times before I find them. I already looked there twice; how could I have missed them? They were right where they should have been.

But I must have dropped my cell phone while I was looking. I go to look for that, and it's the same thing all over again. I finally call my phone, and find it dropped down behind the bed when I hear it ring.

Then I realize that I have no idea where I put my keys. I had found them; they were in my hand, I remember that, but I have no memory of what I did with them after that. So looking for the keys starts all over again.

I had my purse; I looked in it when I was looking for my keys, but it's not where I left it, so I must have moved it while I was looking for my keys.


I try so hard to get out the door on time. Before long I'm tired from rushing around and going up and down stairs, and it's harder and harder to keep moving. I desperately need to lie down, or at least sit down and rest. I want to just give up and stay home, and if it's not something I *must* do, that's often what happens. But some things can't be postponed. If it can be postponed, by the time I get ready to go I often just end up deciding to stay home, too tired from trying to get out the door to actually go out.

It's not just objects I lose. I lose time. I lose numbers and facts. I lose my train of thought. I lose names, both of people and of objects.

"That thing, you know, that big white thing that keeps the food cold," I say. Or I call a spoon a cucumber, or tell the kids to put the rack on the shoes instead of the other way round. They think it's hilarious.  It's not funny, really, but what can I do but laugh?

"Oh, I do that too," people say. "Everyone forgets things."

I have trouble with my own telephone number; relatives' names; times and dates, even of important events (my wedding, my kids' ages and birthdates, my own age and birthdate). Faces, places, long numbers or mathematics are next to impossible.

I write down an event on the calendar, but put it on the wrong date, or write down the wrong time. Or even if I wrote it down correctly I read a note that I have an appointment on a particular day and time, but that information may or may not sink into my brain. If it does, I may know I have an appointment Tuesday at 1:00, but calculating back from that to figure out when I need to leave and what has to happen between now and then might as well be quantum physics; especially figuring out how much time to take into account for things I drop or lose.

Sometimes I try to count something--a simple number, under 50, or even under 20, nothing complicated--and I can't manage it. I count and recount, but I forget where I was part way through, or I can't keep track of which number comes next, or I count them all but the number comes out different every time. Or I count them successfully, manage to get a number I'm sure is correct--but forget it before I can write it down. A simple task like counting how many places to set at the dinner table and then making sure I get the right number of items becomes terrifyingly frustrating and confusing.

Last week a package was returned to sender because I couldn't remember my address when I ordered it, and gave a conglomeration of our previous address and the address we've lived at now for well over a year.

It's not just an occasional occurrence. Every single time I have to say or write down my address, or my phone number, I'm frantically going over it in my mind, not sure I have it correct. I ask my kids or my husband to double check if they're available, but if they aren't there and I can't find a piece of mail to check, I just have to hope I got it right. I don't even try with my social security number--I know I won't get that right unless I look it up or ask my husband. Sometimes I even have trouble with my own name.

When I listen to phone messages on voicemail, I play each one over many times and am still not sure if I wrote the name and number down correctly. I have to set aside a decent chunk of time just to listen to the messages, and by the time I get through a few, I'm mentally exhausted. It's such an ordeal that sometimes I go weeks without listening to my messages. It helps a lot if the person leaving a message spells any unfamiliar names and repeats numbers twice.

I usually use my GPS even driving somewhere I've gone hundreds of times before, because if I don't I could end up in the next county, but occasionally I get cocky or the GPS won't work. Sometimes even with the GPS I still manage to turn the wrong direction or get on or off at the wrong exit. Lately I try to avoid driving as much as possible, especially if I'm unusually tired or having more brain fog than usual.

A few days ago I got lost picking the kids up from school. I was trying to drive straight from school to home, with no detours. The normally 15 to 20-minute trip took us more than an hour.

The next day I got turned around trying to get onto the freeway near my home, and ended up going north when I meant to go south, but it took a while before I realized I was going the wrong direction. That evening I got lost three times--significantly lost--driving home from my mother-in-law's neighborhood. I can get lost no matter how familiar the route. I drive up to an intersection I've been at hundreds of times before and it looks completely unfamilar, and I don't know if or which way I'm supposed to turn.

We got home, and I was so exhausted and in pain that I had to lie down. The other plans, things I had needed to get done that afternoon and over the next day or two would have to wait. I needed to conserve what little energy I had left for the most urgent things, like feeding the kids. Spoons are in limited supply.

It's been worse lately. Things I used to be able to count on my brain for, it will fizzle out on. I'll think I've planned for all the contingencies, that I have everything under control. Things will be running along smoothly and then, suddenly, I'm figuratively or literally lost; confused about what went wrong. Information that I had at my fingertips is suddenly inaccessible. Something that should be simple to understand makes no sense. A task that should be quick and easy to do demands colossal effort, and takes many times longer than it should.

I can handle the chronic pain, especially if it stays below a 7 or so. But it's the severe, bone-wrenching fatigue and the cognitive issues more than anything else that leave me feeling that both my body and my mind have betrayed me, and afraid of what the future might hold as things progress.

I've been cutting back on my activities and commitments, and even on social outings. Part of it is just that I'm focused on basic survival right now; and things like meals, sleep and the most urgent of the daily chores take priority. But part of it is that I'm afraid to let someone down; afraid to take on a commitment I won't be able to follow through on; afraid of the impact my failures have on others.

Most of the time I still do OK in writing; it helps a lot to be able to look back at what was already said in the conversation, or in whatever I'm writing. And I can take breaks and come back to it later without completely losing my train of thought. So I do much of my social interaction online, on Facebook, message boards, etc.

And, really, it's not always that bad. I am able to function adequately for most things. I don't need to be able to remember what exit to take in order to cook a fabulous dinner. Although I get lost a lot, I do fine with the actual process of driving, and I don't have trouble remembering things like the rules of the road. I even drove to several places today without getting lost once. :) I may not be able to remember my kids' teachers' names, but I can read the kids a bedtime story. If I can't figure out their homework, I can point them to someone who can. Usually I can carry on a conversation and participate in social gatherings just fine, at least for a period of time.

Most of the time, I function well enough that most people wouldn't notice anything amiss, or if they do they just think I'm unusually scattered and disorganized.

Thankfully, I do have people in my life who have the patience and understanding to love me and want to spend time with me anyway. Those are the people I need to surround myself with. I can't spend my limited functional time and energy going overboard trying to maintain relationships with the people who can't or won't understand that I don't struggle with these things on purpose just to make their lives difficult; or who think it's because I don't care or don't try.

Of all the elements of my health issues, it's the cognitive issues that scare me the worst. I find myself writing things down when my mind is relatively clear, hoping that somehow it will help me and/or others later. I can usually do better in writing than with other types of communication, because I can go back to read and re-read what was already said. I'm so thankful to be able to go back and read blog entries I wrote about my kids and about events and people I'd never remember otherwise.

A functional mind is a precious thing, and feeling that it's slipping away and not knowing if or when it will come back is far worse than any physical pain.

Who knew MSDS sheets could be so helpful?

A couple of nights ago, DH was putting the kids to bed and AJ asked him if nail polish was poisonous, why people made it and put it on their fingernails. She showed him in the poison safety coloring book she got from the fire station that nail polish was one of the things listed as a "poison."

She hasn't been believing our reassurances based on our own authority, so instead of reassuring her immediately, he got online and did a search for "poison nail polish."

He found a page explaining emergency procedures if someone ingests nail polish, and let her read it. It said that if a person had only drunk one bottle of nail polish, the ER staff probably wouldn't be too concerned, but if they'd ingested about 5 bottles of it then there would be cause for worry. This vastly relieved AJ. She and DH talked about how unlikely it was that anyone would actually drink 5 bottles of nail polish, and how silly that would be.

Then AJ started running her finger across the picture in the book, giggling and saying, "Look! I'm touching poison!" and giggling again.

Yesterday I had a chat with AJ, explaining to her how the 3 rules about germs, with very little tweaking, also applied to poison. Then we spent quite a bit of time in the evening going through the poison safety coloring book, looking up the MSDS (material safety data sheets) on the various substances.

AJ was surprised and pleased that information on the contents, toxicity, effects and treatment for all those substances were readily available. She loved reading them, kept wanting to look up more and more substances, and didn't want to stop at bedtime.

Of course, not one of the items was something so toxic that a trace amount touching something which touches something else which touches someone's hand or lips would be a big issue. I think learning that even for highly toxic items, there are actually established treatments for what to do if someone ingests them was comforting to AJ, too.

After I finally told her it was time to stop and go to bed, she said she felt "mildly relieved."

Then she said, "Mom, if I get up in the middle of the night worrying about poison, can you remind me about this?"

She didn't wake in the middle of the night, and for maybe the first time in weeks she didn't wake us first thing in the morning crying and worrying.

It's too early to tell for sure how much it helped, but so far today we haven't heard a single mention of poison, and AJ seems quite a bit more relaxed.

Rules Needed

Before this poison kick, AJ was worried about germs (interspersed with other things like being concerned about people mispronouncing or using the wrong words or putting the pens away wrong, of course).

We tried lots of different things, but finally DH came up with a strategy that seemed to be pretty effective. He came up with three "rules" for AJ to use to determine for herself if she needed to be concerned about germs or not in any given situation.

I'm not sure I have them exactly the way he taught them to her, but the basic idea is this:

Rule 1: Only worry about major, really bad germs that come from things like toilets. Most daily objects don't have bad enough germs to be a concern, but if you've done something really germy like go to the bathroom or something really dirty like play in mud, you may wash your hands. [We were trying to limit the handwashing because she was doing it so much she was damaging the skin on her hands.]

Rule 2: Only worry if the germs are going into your mouth. So if you plan to eat or stick your fingers in your mouth, go ahead and wash your hands.

Rule 3: If it's already happened and there's nothing you can do about it now, don't worry about it. So if you wake up in the night and realize that you touched the wall which might have touched your nightgown, which might have touched the toilet earlier, don't worry about it. If you realize you just ate something off a spoon that had a speck on it, don't worry about it because it's already happened and there's nothing you can do about it now.

After a while of fielding questions and worries by reminding her of the specific rule that applied in the situation, eventually it was only necessary to say, "Rule 3" and she would say, "Oh. Yeah. OK." and at least stop crying and talking about it, if not thinking about it.

She's a lot less worried about germs the last couple of weeks. Of course, she switched to worrying about poison instead.

As Kevin pointed out, maybe we should come up with a similar set of rules to help her determine whether something is poison or not, and what to do about it.

Any ideas?

She actually did it

M&M and Ebee are getting pretty good at trying to think of ways to distract and cheer up AJ when her brain is stuck. It doesn't necessarily work, but it's sweet to see them try.

This morning AJ was worried that something green on a bowl in the dishwasher was poison, and when accusing me of not believing her or caring about her when I didn't buy into it didn't work, she switched to crying about how Ebee never shares toys with her.

M&M tried to help AJ think of happy thoughts, while Ebee immediately ran and got several of her favorite toys to share with AJ, which rather deflated that particular escalation. Of course, then she didn't want the toys (even the one AJ had specifically said she wanted) and explained that really it was "the P-word" that she was worried about, and not Ebee's toys.

The amazing thing is that ever since I asked her to take a break from talking about poison, she has strictly avoided using the word--has said it maybe once, if that. It amazes me that she's able to do that so well.

It hasn't stopped her worrying about it, but she instantly became very good about freaking out about poison without actually saying the word. She'd be very good at that game where you have to describe things without saying a particular set of words. :)

Her brain works very well with "rules" that she can follow strictly. Now if I can figure out how to harness that to actually help her stop worrying . . .

Please, not the P word!

I let the kids wear costumes to hand out candy to the neighbor kids tonight. They all looked so cute.

Ebee thinks she's found the ultimate logical reason for why she should eat all candy NOW: "But if I don't eat it, it will melt."

AJ's obsession of the month is poison. Probably stemming from a combination of a Fire Department Open House (which included a presentation and coloring book from poison control) and a PBS special on venomous snakes in the last month or so.

I keep reminding myself that at least this time it's not something about one of the other kids (like when she was hiding under chairs screaming and lying awake at night worrying about the way M&M drew pictures, or that one of the other kids was swinging higher than AJ on the swings, etc.).

The counselor says extremely helpful things like, "Well, just stop thinking about it," "Think about something else," and "You're giving her too much attention when she does it--no, wait, you're not paying her enough attention." "If you just punish her when she does this sort of thing, she'll stop." Etc.

She says things to AJ like, "Well you just need to figure out what worries are real and which are just silly" but she hasn't been able to give any suggestions or tools for how to do it.

We are looking for a counselor who is a better fit. Preferably one that shares or at least has respect for our faith, and doesn't respond to questions like "Why did God make bad things like germs?" with a deer-in-the-headlights look and a nebulous mumbling about Mother Nature.

NLASS, who is very good at handling circumstances with grace and humor, watched the girls for a few hours yesterday while I ran errands. She called me two or three times to tell me that AJ was driving her crazy worrying about poison, but she never let on to the kids--just figured out ways to distract them or make them laugh.

She made up silly stories about bungling burglers who spilled poison on themselves while trying to use it on someone else, and came up with pretty compelling distractions. NLASS even drank paint water and licked soap in an attempt to prove to AJ that the manufacturers had not actually lied about it being nontoxic in an attempt to sneak poison into unsuspecting homes.

AJ was asked to take a break from talking about poisonpoisonPOISON for the weekend, because Mommy and NLASS are being driven. crazy. after weeks of hearing about poison approximately 60 million times a day (ok, that might be a slight exaggeration). (And Mommy is very tired, after being kept up until almost midnight and woken at something like 6AM to field worries about poison yet again.)

So a few minutes ago AJ (who mentioned to me a bit earlier that she got her costume wet washing her face and hands) wrote the following note in her notebook and left it open on the table:

"It's Halloween, And my whole costume is wett do you think it mihgt be poisen?"

M&M found the note and wrote on it, "Anser: No. I would say not." and on the next page (which I managed to make disappear before AJ saw) she wrote, "You are So Silly!"

AJ thereupon had a meltdown that M&M wrote in her notebook.

M&M recopied AJ's note nicely on the next page of AJ's notebook, sans answer, crossed out her comment on the first copy and wrote, "Sorry. I diden't now it [the notebook] was yors," next to it.

AJ was mollified.

Sweet. I love it when they're able to do such good conflict resolution.

The kids are also all responding with very good humor to the new "rule" that anyone who says the P word has to immediately do two jumping jacks.