This keeps happening

One little encouraging thing keeps happening from time to time.

I'm out and about as much as I possibly can, a lot more than I would be if I had no excuse for it. Often I'm either going to or from work or to or from therapy or exercise, but above all else I'm probably playing Ingress. The result is that I'm out walking, a lot. I don't go anywhere without a cane and truth is I don't walk very well or very fast even with it, but most of the time I probably don't really look like I need help.

Occasionally I overdo it for some reason. I end up not being able to walk more than 20 meters before I need to rest, and rest generally means I need to sit down. I usually only need a minute of pause but unlike some negotiable desire of a functioning person, there's really no option for me other than to just sit down and wait. I imagine at these times I probably do look a bit of in need of assistance.

Now, I don't know exactly how miserable I look to a random passersby, and frankly I can't remember or imagine what I would have said or done if had come across someone in my state, but it's quite remarkable how often when I need to just stop and rest that someone stops and asks if I'm ok.

I get offered a seat on the bus and things like that almost daily but that's a little different, it's a predictable situation in which we're taught how to behave and what to expect. It's helpful and makes me glad but it's still on some level the expected thing to do. This stopping on the street to ask if I need help is more than that.

That this keeps happening makes me think that maybe people aren't really aware how nice and helpful the average person really is.

Random people on the street, you're often better than I expect.

Charades

From time to time I have an over-whelming sense of being in some sort of act, a charade.

I was going to write "still feel like" but I changed my mind. It sounded like this should have been something that a thinking intelligent person like me would have moved past by now - learn, accept and adapt. There isn't much of that I'm afraid.

I find myself suddenly thinking of dancing a little, like a Fred Astaire in the elevator, and then I remember that ... uhm, no, I won't be doing that.

What's weirdest about this is that the handicap is on my mind,  constantly. It's hard to not be reminded of it for every step one takes.

Especially in the mornings. I really hate the mornings, before the good pills have effect. And the evenings, when everything just wants to shut down, and the afternoon when I'm hoping to have some more time before it's lights out. And maybe around lunch, when I have to constantly remind myself to think about what I'm doing, that not all things one thinks of as normal are within reach now.

 Most of the time, not even a doctor House imitation. It's just a little too risky, trying to do anything beyond moving in the right direction without hitting someone or falling over. I'm aware that I speak more slowly nowadays, more carefully. It used to be that I held back the flow hoping to say slightly fewer stupid things, nowadays it's mostly to avoid sounding stupid when I say them.

Sometimes I wonder if I'm losing consciousness while I'm talking to people. I suddenly find myself looking at the one I'm talking to, and they're just staring at me like waiting for me to finish a sentence or a story. I of course have no idea what that story might be.

Writing really should work better for me now. Or even better, I should say. With the words in front of me I can at least just go back and see what I was writing a moment ago, even though it might be hard to figure out where I was going with it.

The strange silence that happens when someone expresses regrets about me being sick, is different. It took me months to realize that I'm probably being a complete jerk in those moments. The only answer I can think of is usually "Well, life is what it is and at least I'm not in pain". Which is true, but I finally realized that I should be saying "thanks".

Anomaly

So I went ingressing again, more than just a detour or extra yard. Helios anomaly in Gothenburg. By now I'm back at "home" and indoors and relaxed with a glass of wine, not even frozen hands. Gothenburg was true to its reputation, not with rain but it was stormy enough to be pretty cold at the end as the sun stopped warming.

It's pretty nartural when you think about it but nevertheless annoying - the denser clusters of Ingress portals are always in the oldest part of town sp that's where most farming takes place and that's where the anomaly takes place. That means cobblestones and lots of slopes, so awful spots for me. Climbing around old fortifications isn't really my chosen passtime.

I did do it though, and it was fun and I felt great about it from the minute I arrived and heard the shouts and greetings from people I only met a few times before but who share this ... little interest. People who I know are on my side, in some sense. There's something pretty unique about that.

With the book fair taking place this weekend, Gothenburg is busy enough that us dorks with our phones didn't really stand out in the Saturday afternoon crowds. Outselves, we could easily spot the allies and enemies: stationary teams milling around the hot spots, bike runners and response teams on their way to a target.

Ingress is pretty darn cool and I feel great for having been part of today's event. Today ended up a very narrow defeat but I really don't give a damn about that.

I will sleep so well tonight.

Strangers

More MS: I don't know if it's strictly an MS thing or if it's more properly a thing with optic neuritis, I think they're conflated, at least in my case. I have this really annoying inability to remember faces nowadays. I always considered myself pretty bad at remembering faces and names but now it's ridiculous. It's not just learning new faces, like my fellow players in Ingress, but old faces too, like all my colleagues.

There are about 700 employees in our office or roughly thereabouts. After 7 years with the company I thought I had a pretty good grasp on who most people were that had at least some contact with the stuff I do. I could chat pretty freely with anyone I met at the coffee machine.

I still remember those I work with daily or weekly and the people I have more personal relationships with but so many are complete strangers to me until I find something to connect with them. I find myself searching the intranet almost every day trying to remember who that guy was that I talked to in the elevator because I just know we had some incidents we worked on a while back, or who that cute girl was that I chatted with who seemed like she knew me.

I figure it's something with the pattern recognition or contour finding mechanisms. Since I still can't see most of those hidden numbers in the color spot plates I think it stands to reason that perhaps I just don't really see peoples' faces like I used to. Not that they look different, more like I just don't get the pattern trigger even before actually recollecting or remembering a face.

It's a minor hassle compared to having difficulty walking but it's pretty damn annoying.

Sort of an anniversary

Some time this month or thereabouts, two years have passed since the first concrete signs of what was to become MS showed up. I believe I had some symptoms before that as well but from this point it was to be an unbroken chain of them instead of some isolated occurrence that took care of itself after a while. The very first thing I can firmly connect to MS was that I suddenly had trouble with the workout group program at work.

At my workplace, we have some very nice arrangements that allow us to use a gym and access to workout groups and other activities and I really liked doing those workout sessions. Then, for no obvious reason, I discovered I had trouble keeping my balance in some of the exercises, not enough to skip that class but enough to notice. Other things got in the way and kept me from the workout class for a while and after that I had already gotten so sick I couldn't do any of the group stuff at all.

That was about 6 months after what I now see as the first signs. Another 6 months later, I had to stop trying to go to work at all - so that's about a year ago now. (Actually, it'll be another month until that anniversary.)

For me it was balance that was the only symptom I could pinpoint for a very long time. That was unlucky, cause it's not what causes doctors to start thinking about MS. I realize now that I had temperature issues long before I got my diagnosis and that fatigue was an issue from almost as far back as balance but I didn't realize it at the time. Numbness or tingling didn't show up until much later and still only happens for very short periods when I'm having a bad day.

And when I say balance, I don't actually mean balance. It's neurological control of the legs that is failing, not my actual sense of balance. I took several rounds of tests and they all showed my sense of balance was just fine.

So, happy birthday MS. I still think I'm gonna beat you. Now, I'm heading over to the gym.

Item #8452673

Yet another odd thing about a nervous system reset, or whatever it is: You may be familiar with "Bilar" even if you're not Swedish. The candy stuff, cars, I understand IKEA sells them in some countries. Y'know they're three different colors, ostensibly three different flavors? At least that's how I always saw it, I never did find much difference between green-white-pink cars.

But I suddenly found out, now I do. I'm not a huge fan of bilar but the train shop had limited selection so I bought some and ... either the maker changed the recipe or I can now tell those different flavors which I didn't use to be able to distinguish.

Weird.

Six month report?

It's been what, six months? Two weeks? My sense of time and proportions have almost entirely disappeared but here's a bit of summary of how I'm doing lately. I'm doing fine, sort of. Apart from the fact that my body developed a taste for self.destruction, I'm doing great. I moved to a much better apartment (ground floor, no stairs), and that's great. I'm trying to increase the amount of work I can take on and spending three days a week at the office. That part of recovery is one of those areas where I set impossibly high goals for myself and won't be happy with anything short of coming back to "normal" but I can value progress anyway and there is some of that. At least I think there is.

The move to the apartment came just after the holidays and the end of my previous agreements on therapy and training but I'm renewing that now and will be back in the gym soon. The lapse in workouts doesn't bother me in the least, I'm certain I'm getting enough exercise. Gonna try some water exercise in the upcoming months, see if I can find some of the movements I lost.

I have a bunch of doctor's appoinments, some days the stack of mail is just preposterous and it's all medical stuff. Still I think at this point I've more or less exhausted the available options. Depending on what's gonna happen in the next months I might be switching modification meds but that's no big deal, really. Be nice to get one that one goes in to get once a month instead of self-administration. It's gotten to the point where it's such a non-issue that I tend to forget to take my meds.

Attention span and concentration are probably my biggest problem right now. Fatigue makes them worse and it's sort of a showstopper for me. Losing count of how many meds I've tried for dealing with that and I'm well into stuff I'd never have wanted to try a year ago. But I need to handle this somehow, I'm not happy with the current state.

My tingly fingers stopped tingling when I use touch-screens. Kinda sad about that, but it does make using the phone and tablet slightly less uncomfortable.

All other stuff, I can't think of anything else to say than, it's going fine.

Six months in

It's been six months since I was diagnosed with MS. I don't know quite what to say about it. I'm doing fine, really. I am getting better. I'm frustrated and more than just a little bit angry that I can't find the right buttons to push and pills to take to just make it all go away, but I am undeniably better than I was and if I'm just honest about it I can see that I'm still improving. I just can't accept that I can't control it more and hurry things up.

I'm just stepping up the pace and starting to go to work three days a week. My employer has been incredibly cool through all this and the boost I get from every day I manage to go to work and feel like I'm actually doing some work, it's very hard to describe. I wish everyone could feel as happy about going to work as I do.

Having the perfect alibi for just doing... nothing... it's weird. Let's just say, when things just aren't possible to do anymore, it puts another perspective on it all. That old "you don't value what you have until you lose it". It applies to walking, running, going to work.

My promise for the weeks until the holidays: I'm gonna talk less about being sick. Enough of that already. Not because I don't want to but it's about frickin time to have some other things in my life too.

That doesn't apply the same way to writing though. I'm trying to find space for writing more and about more things, but I'm not going to limit writing about being sick, that's just for real life conversations. So, on blogs and stuff, more MS TL;DR.

Focus

Back in my twenties,I probably made the assertion that programming must be one of the most intense efforts of concentration and focus of just about any professional line of work. With age may come just a little bit of modesty and I wouldn't have claimed that later in life.

However, now that MS has made it so that maintaining focus and concentration have become some of my greatest challenges, I'm re-evaluating that. Drilling down into code, solving the problem, building the abstraction house of cards, is by far the hardest thing I'm trying to do right now. I have comparable difficulties in other areas but they differ in at least one critical aspect. Physical effort is hard because it's, well, hard. On the other hand it's the area where it's easiest to see the improvements, and it's incremental. If you pass an obstacle you've come closer to your goal.

Social interaction is incredibly tiring but at least it's self-driving. I do tend to nod off in conversations and I'm less active in discussions than I used to be, but at least it's situations that keep dragging one back in.

On the other hand, if a coder nods off, the code just sits there. You have to maintain focus through an effort of will. And that's frickin hard. I'm sure there are situations that are just as hard for others, like writing for instance. For me writing is pretty effortless but coding requires a level of concentration that is very hard to maintain. Keeping focus on writing for a long period of time would be similarly hard but at least in the short term, maintaining visual focus and staying awake are the bigger obstacles.

What else could I tell you about experiencing MS?

Multiple sclerosis is different in every patient. I understand that, but it's very hard to accept the consequences of it. Once you have a diagnosis you want to ask your physician, "Can I recover? How much of this can be repaired? Will I get worse?" but if you have MS, no decent physician will make such a promise or forecast, because it's all individual.

Why is that? Simply put, MS just means you have some damaged nerves. How many and which ones, that's individual, and the nervous system is a really complex landscape. No two individuals have exactly the same layout of that landscape - sure, it follows the same basic pattern but the nervous system of an adult is like a tree. Two pines may look similar to a casual viewer but if you look carefully they are very different, as they are both the result of the environment where they stand. Even if they are cloned and have identical DNA, they will grow into quite different trees. With a random disease like MS which can affect any part of the nervous system, that matters.

I've come to compare it to pouring water on a slope. You can say "It will run downhill" but there really isn't much else to say that will be meaningful. Even if you only talk about slopes of such and such inclination and covered with a similar surface, on some level the results will differ.

Comparing MS to pouring water on a slope, "it will run downhill" corresponds to "some nerves will have damaged myeling sheaths". Apart from the type of damage to those nerves we don't know much about how this will manifest itself to someone with MS. The range of symptoms MS can cause is huge. If something in your body has a nerve - and it has - it can be affected by MS. Well almost, MS only affects nerves that are white matter, and generally not the peripheral nervous system. That doesn't really give much of your body safe passage from MS. Autonomous systems are generally excluded so MS probably won't affect your heart or lung functions, but a lot of functions you think  of as autonomous but which actually are not, are frequently affected, such as nerves that control muscles you aren't consciously controlling. You cannot feel or control the muscle that controls your eyes' focus for instance, or the muscle that opens your bladder when you pee. Your throat may feel like a simple thing to control but: you do not have one effin clue how to swallow a mouthful of water unless those muscles do it for you.

As far as I understand, MS mostly affects the nerves at the boundary of decision making, where the simpler signal is about to be interpreted by the brain (or conversely, where decision in the brain is about to be transformed into signals to a muscle). One example would be the optic nerve, which I can describe in person. The function I lost was nothing that happens in the eye itself, but the ability to find some types of patterns - I lost the ability to find contours in multicolored images (as I described), my vision at the level you think of as "vision" seems quite untouched.

The frustration this causes is pretty hard to imagine. You don't know what will mend itself and what is lost, and the doctors won't say. And no matter how hard you try, most of the stuff that is affected is very hard to measure. Once you get past the really simple maneovers, it all comes down to willpower, because your enemy isn't really function, but fatigue.

I take walks, in order to practice. I need both to relearn how to walk, and I need to find both where my limits are and how to cope with them. Problem is, I find it very hard to say where my ability ends and willpower takes over, and that makes it very hard to measure improvements. In the beginning, I had very simple abillity tests: walking up the stairs, how many steps can I go without hitting or scraping the step with my right foot? After a while, I could climb two flights of stairs, so I started trying to run, and after a while I could do that too. I try to do anything that makes the whole thing more fluid, but that's hard to measure. The distance I walk every day improved nicely at first but once I had done it, the pace doesn't change much, and how long I can keep doing it is more something that's determined by the fatigue and my willpower than by any ability I can train.

I have one ally in trying to get my walks, anyway - Ingress, (app store) an "augmented reality game" by Google, where you play the game by visiting places in the real world and, well, doing things at those places. It let's me tell myself I'm not walking because I just "need to walk", I can tell myself it's a little bit important that  I go visit that spot, even though I know exactly what is there and I was there earlier today. Convincing myself is sort of a game I play with myself. So far it has worked, at least inasmuch that it helped me move and get out a bit.

Writing these posts about the disease is part of me trying to relearn and get back ability, of course. My fingers have forgotten how to type, and I have trouble watching anything for any stretch of time, for two reasons: first there's a general problem of attention and concentration. Second, there's fatigue hitting the focus of my eyes. There's also a lot of frustration from typing so badly (horribly!) but at least I've relearned enough to be able to write this.

I didn't plan to make this a series at all, it grew by itself. I also thought this third part was going to be the last one but I think I may want to try to describe fatigue, too. Not right now though, I'm way too tired.

Oh, and I'm on the Enlightened side, of course.

My game today

When I was my sickest, I couldn't really take in information. As I've been getting better, I've started to catch up a bit. I've started reading about MS and neurology, and one of the things I've dug into is the trove of my journal notes, which I can get digitally. They're fascinating reading. They show the slow path of finding out what was wrong with me and they hint at some of the mistakes made by some of the people involved - I'm not saying those mistakes were necessarily the fault of the doctors, I can mostly understand why they thought the way they did. Much of the red herrings follow straight from my story as I lived it and as I told it, and not even my telling was at fault, I'd tell the same story again and it would have been fabulous if those conclusions those doctors came to had been correct. Sadly, I wasn't just depressed and in need of a good shrink.

There are also some interesting observations about me in those journal notes. Like "tends to give very long answers". I bet readers of this blog and people who know me in real life or from the internet would happily agree with that. I have no idea what giving long winded answers is supposed to mean in doctor-speak, but there it is, and it's true. I try to tell everything I have even a suspicion that whoever I'm talking to, and who probably knows more than I do about this crap, might recognize as relevant. Just like how I want my users to not edit or censor their error reports thinking they know what has gone wrong.

Another observation in the journal notes that at first I found baffling occurs several times, and I've gotten it a few times in peson as well, is that I'm "extremely competitive". This just doesn't fit my image of myself. I'm supposed to be this laid-back person who, if anything, seems to not care enough.

However, when it comes to driving my therapy on, I'm pretty vicious. I'm not allowing anything to stand between me and my workout. I decided as soon as I had some idea of what was coming that I would claim every benefit there was to be had. No shrinking from interviews or forms, if there was something I'm entitled to, I'm going to claim it. None of that "I'm doing ok, don't worry", I'm sick enough to take all the stuff that's promised and pity the fool that stands in my way cause I have a really heavy binder full of papers saying I should get it and I'll smack whoever tries to stop me over the head with that binder and a truck-load of guilt. So far, it's working pretty well.

Being me, I prefer therapy I can measure. My first weeks were quite easy - I couldn't walk up the stairs so I started counting the number of steps I could take and lift my right foot up the next step without touching it on the way up. After a week or two I could do it all the way up. I upped the challenge a bit, I tried running up but it's really hard work and often I can't do it because I'm too tired to begin with. I started logging my walks. I began using Endomondo a few years back for my inlines skating and it works just fine for my convalescent walks as well. So I started logging those walks and I'm really glad I did. They show very nicely the progress I've been making this summer.

One problem with walks is that I can't really increase the challenge beyond "walk for about an hour". I can't increase the tempo because I can't control my pace very well, every step is at the pace my body sets, not my mind. Secondly, MS fatigue sets a pretty hard limit on how long I can keep going, and evey day has a different limit.

One ingredient in my daily walks, from the start, has been Ingress.Ingress is an "augmented reality game" which means you play it in the real world and the game adds its game content on top of the real. In this case, there's some sort of ... stuff, coming from the centers of human activity and attention, and two sides of players compete to control the stuff. The game comes from Google and it's played on a version of Google Maps. The portals, as they're called, are assigned by Google from player submissions and the game is at least partially driven by Google's data of demographic and usage patterns. Wherever people move around becomes a hot spot in the game

The game is still officially in beta test but it's not hard to get a game account (as long as one is happy to remain or become an Android user). I got an Ingress account in January. At least that's when I tweeted about my first impressions. I loved it, it's a fantastic idea, beautifully implemented. I didn't play it a lot though. Back then, there weren't enough portals around for it to be all that fun and I wasn't interested enough to play a lot. Plus, since the game requires one to visit actual places in the real world (a bit like hunting geocaches) it was getting harder every day for me to play it.

However, once I emerged from the nightmare, in need of motivation, Ingress was waiting for me. By then the portals were everywhere and there were a lot more active players. I found I had a few portals within walking distance of my home, and I started visiting them every day. First one, then two, then more of them. I was also running my exercize tracker but that was always just logging. I soon started saying I was going out to "check on my portals". There's no real need to visit a portal to check how it's doing although you do need to visit them in order to harvest some resources needed to advance the game, it was just something I said to explain what I was going to do. And so, the game magically started to assume the responsibility to motivate me.

Ingress became a reason to get out, the scapegoat I both needed and wanted in order to take another boring, frustrating walk. I was already getting very frustrated with how hard it was to reclaim what MS had taken from me. Ingress became a goal that bypassed some harder things and set something small within reach and I let it motivate me and I blamed it for quite a few unnecessary expeditions to places I didn't really need to visit when I'd much rather have stayed at home on the couch, dozing off, instead of worrying about where to find a toilet and looking nerdy stumbling about with my crutch in one hand, phone in the other, looking for a portal to attack.

I let the game become my focus whenever I could afford to (and I still do). It's reminiscent of Jane McGonigal's Superbetter (in "the game that will add 10 extra years to your life". If you haven't seen it, do it now. Just click. You're welcome)

Now I didn't have a concussion and I wasn't depressed. I didn't have ALS ("The best part of having MS: not having ALS") or any other terminal illness. I certainly didn't want to die, quite the opposite: I thought I might be dying and I didn't want to.

The allies I make in this game are my allies in extending my life and getting better. Superbetter in McGonigal's words. We even have lunch dates to play. If you were ever a gamer, you can imagine.

I still have MS to deal with, and I don't have any illusions that I will discover The Cure (that would be a beyond-epic win - see McGonigal's first TED talk) or that my recuperation will take me anywhere near where I want to be, healthwise.

However... Among the really, really odd, spaced out weird, strange symptoms I've experienced, a recent one kind of stands out: if you know how touch displays work, you know that most of them will route a tiny electrical current through your finger in order to find out where you're tapping the display. That current is normally too tiny to be felt, but since a few weeks back... I can feel it. I'm speculating that my body is relearning so much, that might be allowing it to pick up this little signal and register it in my brain.

Or, maybe it's my level 10 special ability in the get-well game. Sort of like an X-men mutation. I think I totally deserve one.

Understanding MS, my version

MS is frustratingly hard to understand. It's one of those things you hear about and see descriptions of and you just skip past it and think it's unpleasant and complicated and you don't really need that knowledge anyway. Since I was diagnosed with it, I had to reevaluate that skipping-past part, and this is my attempt at explaining it, primarily for my own understanding of what the hell is going on and how to deal with it, secondly to have a handy explanation when asked what's happening.

Do not read this to understand MS on a medical level, it is probably incorrect on a dozen points. It is only a layman's decription in order to understand what's going on and how to deal with it.

Some basics

The cause of MS is fairly well understood. It's an auto-immune disease, where the body's own T-cells damage the sheaths of the nerves (the myelin sheath). The damage is irreversible, there is no way to regenerate the sheath, although stem cell research looks like it could eventually provide a therapy that eliminates the ill effects. What triggers this attack is less well understood. It only happens in some people. There is an inherited risk but it is not a hereditory syndrome, though the risk is higher for Caucasian people than non-Caucasians, and the incidence is higher for populations in Northern Europe than elsewhere, and higher among females than among males. Onset is typically between ages 20-50.

That's all - as far as I understand - uncontroversial, but also not very helpful. You can't avoid it by living a healthy life and you can't escape it once it manifests.

To understand the consequences of MS, one has to understand a few things about neurology, which is complex far beyond any simple mechanical level. I've found a few analogies are helpful.

Timing

First, a nerve is not one cable that transmits a meningful self-contained message. Rather, it's a bundle of very simple signal paths, like a binary symbol - on or off. Actually it's probably truer to say it's a numerical value (an intensity) but it helps the think of it as a binary (on or off). Imagine you're watching like a film, showing the result of rolling a dice. Accounting for all the different ways the dice could fall, you'd need to monitor nine positions: the positions of a "six", when it falls so the lines of the six are horizontal or verical, plus the central position (for "one", "three" and "five"). We're glossing over that the dice may not always land in a well defined spot or orientation, it's actually not important.

You're watching - your brain is watching - a sequence of dice outcomes, each outcome represented as a set of signals in those nine spots. You can quickly learn what each combination of signals means. Only the spot in the middle: that's a "one". That middle one and the corners: that's "five". Two diagonal corners: "two". And so on. That's what your brain does. It sees that sequence and you experience it as those interpretations, although it is relayed to your brain as separate signals for each spot.

You're watching a series and it is meaningful to you once you've learned to interpret it. This is what you do as a kid, you learn to make sense of the world. Now imagine the timing of those positions being relayed to your brain changed. Perhaps you learned to interpret the signals using a system where the top row took 2 milliseconds, the rest of the signals too 3 milliseconds except the centre point which took 6. Now imagine you're watching one dice roll every millisecond. Cool, it can still be done, the rules are just a little more complex.

Now here comes MS: the damage to the myelin sheath changes the transmit speeds of the nerve. Some of the signals are delayed, say by 2 milliseconds, some by 3, some by 4, a few not at all. All the patterns you learned to look for are now irrelevant. You have to learn them anew. This is not impossible, but frustrating and slow. It's exactly like learning to walk again, which, incidently, is exactly what I just did.

This damage also affects a bunch of nerves that are used for stuff you willfully control but don't really have a conscious image of how you control them - you can't feel the muscle that controls focus of the lens in your eye for instance. You just think of what you want to focus on and, presto, the eye does the rest. If you have to relearn that, good luck trying to do it consciously. Relearning to walk up the stairs is easy by comparison, you know at some level which movements you need to repeat. Not so with the eye.

Chemistry and hydraulics

That's one side of the effects of MS - the easy side. The other side I've settled on to decribe the effects involves a bit of chemistry, or perhaps cars. If there's a leak on the brake system of a car (the old hydraulic sort, not some new-fangled electrical one), oil leaks out when you apply the brakes. The more you brake, the more leaks out, and the less efficient the system becomes. This describes what happens in a nerve with a damaged myelin sheath. The transmittor leaks out, making the signal weaker and weaker, and it leaks out when you use that nerve. Once enough has leaked out, the nerve becomes more or less useless - it feels like an overpowering fatigue that is nothing like what you feel after doing physical activity (muscle work), it feels more like the mental fatigue you feel after taking a math test. And that's exactly what it is, mental fatigue driven by mental activity - neurological activity.

The name "multiple sclerosis" means "many scars", and relates to those damaged myelin sheaths - those scars are both what changes the timing of the signals and what leaks the transmittor substance.

Training and medicine

There is no cure for MS. There are modification drugs, which are meant to stop the flares of the disease, so you don't get new scars, but that's all. You can train in order to relearn some of the signal patterns, and there are some attempts at preventing some of the leakage from the scars. There are drugs and recommendations that are aimed at a higher level, such as giving the body better ability to cope with the situation, like eating fish at least so and so many times a week (the reason is more complex than that).

So that's what I'm doing: training, practising walking and moving, looking for a medicine that will let me handle the fatigue.

Fun with damaged nerves

The nervous system is extremely complex and fantastic in every way, and when it gets damaged in some way all sorts of interesting things can happen. Recently diagnosed with MS, I've seen some pretty fascinating things happen to my body and how it interacts with the world. Almost everyone is familiar with those color blindness tests for instance, colored dots that hide a number and if you're color blind you can't see the number, so I'm told. This summer I was at the ophthalmologist because my eyes were giving me a lot of trouble, and when they showed me those multicolored plates, I thought they were broken, or dummies -  I couldn't make out any contours at all. I could still see the different colors of each little dot, I just could no longer make out the patterns. I'm told this is common in cases of inflammation on the optic nerve. I was relieved that when I did the test again a month later, I could actually see some shapes and I think this is something that will mend itself over time.

Another comic effect I experienced was when I lost my memory of taste and smell. Everything tastes the same as it always did, I just have no memories attached to it. Acquired taste was obliterated. So when I walked into the restaurant at work, I couldn't figure out what was being served without peeking. The familiar taste of something I loved as a kid was reduced to a purely intellectual recognition. Coffee... tasted like it did the first time I tasted it, awful. This was a bit of a problem as I was a pretty big coffee drinker. I blamed the sleepiness I felt on caffeine abstinence and after a while I had actually relearned to like coffee.

It took much longer for me to stop hating ice-cream. I got pretty sick after eating a lot of ice-cream when I was 12. The particular flavor that triggered it was chocolate ice-cream, with chocolate crust and hazelnuts. In case you're familiar with Swedish ice-cream, "88:an" is the culprit. After that I very rarely ate ice-cream, never chocolate ice-cream and wouldn't touch ice-cream with hazelnuts in it. Since it's something I don't eat, it took me a while to discover, but that bad memory of ice-cream also lost its hold on me. When I started having difficulties walking, I started inventing things I wanted to do, and one of the things I decided I wanted was to go get an ice-cream on a hot day. I decided I was going to eat ice-cream and like it. And I did. Whether it's a good or bad side effect of MS I'll let each reader decide, but as with the weight loss, I have to say my opinion is that it isn't really worth going through MS just to lose some weight and eat ice-cream, not even when you get to do both at the same time.