MS, humility and self-perception…

I haven’t mentioned my Multiple sclerosis (MS) here or on Twitter or anywhere else on social media for a while. If you think that’s a good sign, you’re absolutely right :-). It seems almost surreal that I haven’t had a MS attack or even flares of one in almost three years now. Which, of course, is the due to the medication I’m on for just as long.
I still get my Tysabri IV every four weeks (it was the 36th this week) and I still have a regular appointment at my neurologist every three months. Nothing has changed, which with MS is basically a very good thing. None of my, by now almost insignificant symptoms, are troubling me. I feel perfectly fine. Which is what this medication is all about, right?
I have to admit that in the first year on Tysbari I was much more observant of my body and tried to notice any small changes, because any new symptom or anything out of the ordinary (cognitive wise most of all) could be a sign for the most dreaded and life-threatening side effect of this medication: a severe and dangerous brain infection (PML). But I’m not so super vigiliant anymore even though I maybe should be, because the PML risk is significant higher after the first two years. But I feel so perfectly fine! Honestly.
Sometimes in the recent months I was wondering though if my ongoing “feeling off and worrying too much…” (not really depressed, but maybe something in that direction) might be caused by the medcation. But then I  remembered that I always had the tendency to see the glass half empty and the world in more subdued colours like probably a lot of other people. I remember angsty journal entries from 20 years ago and very angsty, sad and dark poems I wrote back then. Yes, I was one of those girls :-) So I think this has always been a part of me and to some extent probably always will be. And that’s ok. I think.

I was prompted to truly acknowledge (to myself most of all) the relative good state of my health, when I went to my neurologist’s practice for my blood work earlier this week and saw a female patient who had been getting the Tysabri IV at the same time as I in 2011. The two of us and a male patient spent the few hours hooked up to the IVs together for a few months. The guy had to change to some other medication after a year or so and I think I changed my schedule due to some vacation or a severe cold or some stuff.
I haven’t met that woman since then and now it only was in passing, I think she didn’t even notice me. Already back in 2011 she had been suffering from a lot more MS symptoms and much more severly than I ever did and from what I gathered after this encounter this week it only got worse for her. Which evoked all kinds of different emotions in me.
I felt so very sorry for her, because I know she has a little girl, who already is raised mostly by the grandmother. I got a bit scared, that at some point the MS might hit me just as severly after all. But honestly foremost I was feeling so grateful that this medication has halted the progress of my MS so far. And I instantly felt kind of shitty that it needed such a sad reminder for me to be grateful for how well I’m doing. And to be reminded that so much of the stuff I worry about should not even be a blip on my radar, because so much stuff really is so not worth worrying over. A small encounters like this one really can be such a humbling experience.

But I’ve also realized that I still have to take care to not fall into the other extreme again as well, as I did in the first few years with MS. To play it down and to act (and speak) as if it’s not a big deal and there is nothing to worry about. Because even though I am doing perfectly fine at the moment, I still live with an uncurable neurological disease which will be with me for the rest of my life. And this disease has damaged my brain matter so much already that I had to change to a more aggressive kind of MS medication, which comes with some other health risks as well. I might not notice much of it in my every day life (except the routine doctors visits / IVs etc.) but the fact is that it still remains a serious health issue. I sometimes don’t give myself enough credit for living with it, I think.

And now I’m worried that this last paragraph makes me sound like I’m fishing for sympathies and I feel a bit shitty again. I’m a helpless basketcase in that regard, I guess. Always have been, always will be :-)

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