Memory, and the lack thereof.

Something that's been bothering me for .. well, two years or so now is memory loss. As in, my loss of recall.

I used to be able to recall events that happened with incredible clarity, as if they were happening right now.

Today? I can't remember what year I graduated my engineering degree, or what year my uncle died. I can work it out - but I don't remember the events. I can barely remember the first time I met my husband, our first kiss, or our wedding. What I do remember are like photographs - single frames - instead of being able to remember the sounds, the touch, the tastes, the smells, the feelings and what I saw as a seamless whole.

And it's more than just not being able to remember long-term memories, things that happened years ago. It's being unable to remember what happened last week, last month, needing to visit a place a few times before remembering where it is and what it looks like.

What I do remember is having near-perfect recall of places, and how to get there; or being able to remember what I did last week; or being able to remember people's names and faces; or being able to remember what year important things happened, and in what sequence.

I remember being able to do this things as recently as ... well, after visiting linkedin, I know it was in 2009. I couldn't remember the year, but I could remember where I lived and worked.  Kind of. So I could work out when it was. That's fairly typical for me, these days.

I have improved a little over the past year; I no longer have quite so many issues with recent events. According to some friends, early in 2011 it was truly frightening to see how quickly I forgot things; how much I just didn't remember day-to-day. Now, if I've met someone, I'll at least remember I *have* met them, even if I don't have a clue of their name or anything else about them, although I do sometimes recall names. I usually remember if I've made appointments, and often I'll get the day and time right, although I still occasionally double-book myself. This is nowhere near my previous levels, but ... it's better than it was, when I had to set myself alarms three times a day to remember to take my pills, and write notes to myself so I'd know I'd eaten.

Even at my current level of improvement, it is still incredibly distressing to have lost so much of my life. So much of the things I know I used to know, I no longer do. So many skills. It reduces me to tears if I think about it too much.

I have no idea why this has happened to me, or how to fix it. I have had more pressing and immediate problems to deal with. Those are, however, mostly either under control or uncontrollable, so I can start dealing with this particular issue.

I'm going to start by sending this entry to my GP, and beginning a document that chronicles my major life events, so I can at least put things in the right order in my mind. I can only hope that some of my memories are recoverable, and not gone forever.

Inversions: Challenge cycle Nov to Dec

New cycle, new challenge points. 4 goals, six weeks, but this time, some inspiration from George Orwell. 

 

 

Six Week Challenge The Fourth: Nov 12th to Dec 

 

Goal 1: WAR IS PEACE: Challenge my war on myself - Find and change one negative thought cycle or behaviour a week

 

I've developed some negative patterns. Not caring for myself, eating things that I know will bite me back, avoiding new experiences, that kind of thing. I don't necessarily expect any changes to stick; but awareness of habitual thoughts and actions is the first step.   

 

Goal 2: IGNORANCE IS STRENGTH: Challenge my ignorance - Complete monitoring every day

 

I've started using Patients Like Me to gather information about what's actually going on inside my head and body. This involves at-least-daily quick updates of overall mood, and recording what each of my major symptoms is doing. I may talk more indepth about this at another time. I will also attempt to keep a daily log of what I do, and publish it here on my blog. I may or may not publish my recorded charts of symptoms at the end of the period.

 

Goal 3: FREEDOM IS SLAVERY: Challenge Immobility, Inflexibility, and Atrophy - do my physio exercises daily

 

Well, that one's obvious. Although, if I manage to do other physical things, I get bonus points here.

 

Goal 4: DOUBLETHINK: Challenge my mind - Research and write at least one article on my blog a week about something I've learnt

 

Again, this is pretty obvious. I'm going to say it has to be at least 400 words, although I will allow new recipes, tea reviews, book reviews, introspection, and similar. 

Goals are subject to review and update if I find they are not working, or similar. 

This goalset is somewhat less physical than the previous ones I've set, rather more meta and very introspective. I will still attempt to maintain and increase my physical activity, but my focus is very sharply on what's causing me to not be doing said physical activity.  As always, my greatest enemy is myself.

The theory and practice of energy reserves

Today I am coping with what inevitably happens when I exert myself the previous day.

I am exhausted.

Admittedly, I didn't get to sleep until about 3am. And I didn't sleep in past 9, so I only got 6 hours of sleep. I did spend quite a lot of time dancing, and also walking, last night. I also spent more than the usual effort to make dinner yesterday. I had two glasses of wine and a bottle of Coke; this unusually high dose of sugar and caffeine may be a contributing factor to how I feel.

As a result, my usual dose of wakeypills is just enough to keep me from going to sleep sitting at my desk. Barely. If I ate something and took away the vaguely irritating feel of hunger, I'm not sure I'd be awake long. If I went to lie down on the bed, I'd be asleep in moments. I've utterly exhausted my energy reserves - at the moment, I'm trying to work up the energy to go get myself a cup of tea. Probably peppermint; caffeine has funny interactions with other stimulants, and I'm not in a mood to risk feeling even less awake.

For context, a normal person, on 100mg every eight hours, can easily stay awake, with elevated alertness, for 40 hours without side effects. In that same 40 hours, I will typically have had 8 hours of sleep, and 600mg to give me approximately two 12-hour periods of wakefulness, the quality of which is highly variable. There are another 18 hours in which my wakefulness will probably be fairly low grade, and my alertness will almost certainly be low. I will be able to perform simple, repetitive tasks, such as reading, reading internet articles (but probably not remembering them well the next day), or staring at the wall. Tasks like stacking the dishwasher, making a simple, familiar meal, or playing a familiar video game that requires any form of fast reflex action or thought will probably be too high energy. There's quite a big difference between myself and the frontline soldiers (or the students and truck drivers who consume the bulk of modafinil sold).

I note in passing that this current state is a vast improvement over a few months ago.

There's a long way between me and normal. I use 'normal' in the sense that it is medically normal for an adult to not require sleep during the day; to be able to function at a reasonable level of alertness and wakefulness during the day; to have a standard response to heavy-duty stimulating drugs where sleep is prohibited for the time the drug is in the system. Of course, circumstances of disrupted sleep, depression, some forms of anxiety, high levels of stress, bacterial or viral infection, or similar are exceptions to this normal. Even so, I'm aware of very few adults even under those circumstances who would go to sleep sitting upright if they stopped concentrating on not sleeping for a couple of minutes.

Moving on to why I feel so rotten today. I've noticed in the past that I can build up energy reserves over time, so that a particularly active day, week, or month doesn't knock me flat. Everyone has these - everyone can occasionally push themselves further and harder (sometimes hugely so) before they have to go back to a normal level of activity to recuperate. Things like swot vac and exam week, NaNoWriMo, a software release, a two-day hiking trip, a marathon. Those are circumstances where you extend your reach for some sustained period; afterwards, the best word I've come up for the feeling is drained. It's not so much exhaustion, but the sense that even after you rest, you have nothing left to give. Your batteries are flat.

Over the last few weeks, I've had a lot of things inhibiting my ability to build up a reserve - a bad head cold (still not quite over) and the week in Kirkland which drained my reserves to the point I was quite literally in bed for a week. So I've zeroed my reserves, and haven't built them back up much.

Yesterday's exertion (maybe an hour all up of mixed low and high intensity cardio; making dinner using new recipes) was enough to drain me again. Not as bad as the Kirkland trip; I'll probably be back to my normal low level of function tomorrow. I have my generally increased physical and mental activity to thank for this increased resilience. The more you do, the more you can do, as the saying goes.

Obviously, I'm walking a pretty fine line between doing more and doing too much. To a certain extent, I can borrow from my reserves a bit to extend my reach slightly - but only when my reserves are full enough such that I don't drain them by doing so. To recharge my reserves, I need to rest, and not just physically. It's the mental aspect, the energy involved in decision making that's important. During normal times (that is, when I've recovered enough not to be utterly flat, but I still don't have full reserves) this needs to be active rest - a term familiar to anyone who's delved deeply enough into the world of fitness. Mentally, this means learning new (but not overly challenging) things, routine planning activities (like a weekly grocery shopping list and meal plan), or easy creative things, like writing a blog entry.

Clearly I need to plan my time better, and further in advance, so I don't hit bottlenecks like this - at least, not until I have the reserves to deal with it without derailing the following day entirely. Of course, planning activities with that kind of scope are fairly decision-intensive and mentally draining, which is a wee bit on the challenging side when I'm running low.

Sometimes I feel like I'm in a bit of a Catch-22 situation.

Oh well. Small changes will eventually add up to big ones, I hope. One day at a time.

State change

This morning, I've reflected on the changes that have occurred in the last few weeks.

A few weeks ago, I was depressed. I cried or felt like crying all day every day. I didn't leave the house, because it was too hard. I didn't write, or cook, or take photographs, read new books, or do anything much. I hadn't called my family in weeks. I hadn't had a marginally acceptable night's sleep either, due mostly to insomnia caused by the depression.

What changed?

 Nothing.

I have a history of depression and anxiety. Quite a long one, really. Caused at various times by various things. This one was mostly culture shock compounded by hypersomnia, and adjustment to a lifelong illness.

This episode was, in some ways, the worst I've had for nearly a decade, and it was very self reinforcing. It was a feedback cycle - I didn't do things, felt I should, felt worse, so I didn't do things. That's a pretty strong cycle, and the generated feelings did leave me pretty much comatose or zombielike, and in any case were rather effective at preventing me from doing anything much.

But the cycle was clear. That, in the past, has frequently not been the case. To get out of this all I had to do was break the cycle. Amongst other things, this would return me to my normal sleep patterns, which would also tend to enable me to do my normal activities.

I used anger. Not the whiny, useless, energy-draining spinlock frustration I'd been engaging in, but full-blown raging anger at the universe. I said a giant "FUCK THIS!" to myself.

That's really all it took for me to start the process of getting rid of the backlog of tasks and associated guilt. I was too angry to be guilty, and I was energised by that reckless anger.

Of course, the anger wore off. But by then I'd accomplished enough and set up enough frameworks to keep accomplishing things that it didn't matter. I was free from the black cloud for the first time in nearly a year.

The somewhat daily posts are part of this framework. That's where I tell myself that I am doing things; I can do things; I have done things - things which matter to me. Doing a load of laundry or restacking the dishwasher doesn't sound like much, until you realise that those chores are things I've been unable to do regularly for the better part of the last 3 years. Mundane in the grand scheme, yes, but a vital part of helping me feel like I'm an able person.

Another element is addressing my physical fitness, and setting up support frameworks to ease the personal load on my mind. I know that my lack of fitness is limiting my physical energy greatly, so becoming more fit is a really cracking good idea. I find it easier to keep appointments than to just make myself go to the gym. And I find it easier to achieve goals if I set small, measurable goals, and if I have encouragement from peers and friends. Rejoining the Nerd Fitness community is a part of that.

Creativity is also rather important to me. To a limit, the more creative activities I do, the more I can do - similar to physical fitness, I suppose. On the other hand, having deadlines (such as the daily deadlines imposed by the 365 project I attempted) doesn't work for me at all, mostly because of my physical limitations. I therefore set myself this goal: for six weeks, I will write at least one blog post a week that wasn't the daily update. The weekly post could be a ramble, a photography post, a cooking post, a book review, or whatever seemed good at the time. I'd say, judging by my archives, that this goal is doing what it's supposed to be doing. It's giving me sufficient motivation to write, photograph, and cook, without loading me with stress. So instead of a single post a week, I'm doing significantly more than that - and not only that, I'm creating elsewhere.

A broad theme I've been thinking along, which is implied by all the ways I've addressed my situation, is self-acceptance. Learning to work within my limitations. Before, those limits distressed me greatly, which shrunk the limits hugely. The goals I've set have a great deal of flexibility built in, even though they are highly specific and time-driven. Some days I'm not going to be able to do much more than lie on the couch and read. Some days I will be able to take photographs for six hours. I can't predict when in advance which day will be which, but I can take advantage of the good ones, and not stress about the bad ones.

This has the effect of greatly expanding my limits. I have fewer bad days when I'm generally positive about the direction of my life.

I have a very long way to go in certain areas to get back to something resembling what I once was, yet I have significantly more confidence in my ability to get there eventually.

It's looking up.