Saturday, November 02, 2013

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.


"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.

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Anonymous Amy said...

Hugs. I've been having worse brain fog since my chronic fever started, too. I also find that it and the fatigue are the hardest to deal with.

This week I lost my car in downtown Portland and spent three hours searching for it. That didn't help my pain and fatigue any! I even ended up talking to the police but they didn't deem it an emergency and wouldn't help. When I'd arrived at the building I was working at that day, I wrote down which road I had walked up, but apparently already forgot I'd made a turn between my car and the building. Finally Mom had to drive all the way to Portland in rush-hour traffic to get me, and we found the car quickly and nearby, but on a different road than I'd written down it was on.

The job I'd just finished was a prestigious one, interpreting for the governor of Oregon and some other big-name people. Sometimes it's baffling how I can be so competent and so completely incompetent all in the same day.

For me the cognitive loss is the hardest to deal with emotionally. Being too sick to work on my novels this last 14 months has been difficult. My creative writing is always something that's been a big part of my identity--part of who God made me to be and a major ministry. And then for a while after the fever I lost even the ability to do the simple editing and formatting that had at least allowed me to help other writers. Sometimes I wonder how God can use me if most days I'm unable to do anything but sleep for 14 hours and then stare at a TV for another few hours.

But things have gotten a tiny bit better for me as well, as my body has adjusted to a chronic fever. I'll pray that the sleep deprivation isn't too severe after the little one is born. I'm thankful we both have good support in our lives.

I miss spending time with you. That's the other hardest thing about this stuff--it can be so isolating. Hugs.

6:32 PM  
Blogger purple_kangaroo said...

Thanks, Amy! I'm sorry you have to deal with this stuff too, but it is nice to have loved ones who really understand.

7:47 PM  

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