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.

Do what’s supposed to fit in, then repent

You always said people don’t do what they believe in, they just do what’s supposed to fit in, then they repent

And that's one reason a poll showing changing attitudes and awareness can be incredibly important. We kmow that humans have a huge tendency to assume the attitude that they believe others have and to project their existing attitudes onto others. The more people are shown that attitudes are changing, the more attitudes will change.

What if it's attitudes that are not improving? Harsher times making more and more people hostile and prejudiced?

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.