I keep trying not to mention Multiple Sclerosis in the blog but it seems to always sneak in. Even if it is not mentioned explicitly the impact it has, for example the need to wear a leg support or use a walking stick when getting around Berlin. This reflects daily life. Everything I do has MS and its impact factored in. It is just inescapable.
Everyday
That inescapable quality touches everything. Cognitive impacts are the worst because of their invisibility. The physical impacts are currently quite manageable with a little planning. If people see me walking stiffly due to my walking aid or walking stick they often make allowances. Apart from a couple of old tw*ts who have a good stare… do they stare at people in wheelchairs? Arseholes.
A minority, though. Noticeable but a minority. Part of everyday life.
Planning is now part of everyday life. If I go anywhere I plan the stations I use. Utrecht, for example, has more working escalators than Amsterdam Zuid or Hilversum. So I try to go via Utrecht to another city, depending on the destination. I also try to travel outside of rush hour. If I need to walk anywhere I factor in roughly 20 minutes extra.
More Countermeasures
It is also important to be open to medication. Ocrevus, which I have mentioned before, is not a cure in any shape or form. What it does is slow or stop lesion growth. It does that through impeding the part of my immune system that has decided I am a threat to myself. It will not repair the damage already done, though. So progression is going to continue.
Newer is Fampyra. This basically works through ‘bypassing’ damaged nerves. Very basic. It works, I think, as I notice when I forget to take one of my twice daily pills. The pills are effective for twelve hours and, when a dose ‘runs out’, my mind becomes a murky soup. I cannot follow conversations well or concentrate, walking is more challenging than it normally is. And, perhaps worst of all, my mood plummets. Is that a direct effect of the pill or dealing with the impact that is not there? I am not sure. It is something I have been reading about and definitely something for my next neurologist appointment.
Retaining Control
There are also nice, simple ways to keep a semblance of control. Typing, for example, is easier on an iPhone.
What? A little iPhone?
Well, yes! Two thumbs as opposed to lots of fingers. OK, it is not perfect. But a nice habit. Some of these posts are now written on an iPhone and then checked on the PC. I then cross-check spelling with AI, giving strict instructions. No dashes, no Americanisms. There is a lot wrong with AI but… for me, it does help. I stay as active as I can, with cycling simply being easier than walking. The distances are down but the enjoyment, that is still there. Rather than tearing through at 40 kilometres an hour, it is nice to stop, sit down and look around. Hear the sounds. Reading a book now needs to be in silence. No music in the background to distract me.
I also have a little notepad on my iPhone where I write down things about friends. Their children’s names, where they are going on holiday, what their jobs are. I also have notepads to keep a medical record, a notepad for what I want to do on a specific day. Questions for friends. Even this blog! I’ll have thought of brilliant, amazing ideas for posts! And forgotten them, within half-an-hour.
This is all unscientific. It just seems to work for me.
Inescapable
Still, MS is going nowhere. It is also progressing. That is a simple fact. It would be complete bullish*t to present my life as one long act of resistance. I struggle with it sometimes. More often than I used to. It is easy to be heroically ill when the impact was not that big. OK, there were times when small things were noticeable. Looking back in the blog, I mentioned that nearing the summit of Gavia, I commented that it felt like I was limping on the pedals. Although it must be said that after, 25 kilometres and nearly 1500 metres of climbing, who wouldn’t be limping!
The small things are accumulating into larger wholes. I am noticeably slower doing anything now. I get confused quite easily, especially when I forget Fampyra. On that note, though, it is worth remembering. For all that is gone, there is still a lot there. I just need to do things a little differently. MS is inescapable, that is true, but my life with it is pretty good.