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.

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.