Hello everyone. Danish man, 37 years of age, living and working in Japan as a high school teacher. Err I guess I basically don’t actually have anything to do with UK. Except going there a few times on trips and enjoying the lovely British accent whenever I can.
But well, looking around a bit I ended up giving this community a try, I’m sorry if I’d have been better off looking for a Danish one. I’m just going to blurt out my story.
2 years ago or so I disappeared from the world it seems. My wife tells me I suddenly got all stiff and starting squeezing really hard on what I was holding and like bit really tightly, cutting rather deep into my tongue. Like an epileptic attack or something I guess. My worried wife patted me and I fell sideways off my chair, slamming my head into the wall. Apparently I then starting walking around, talking without making much sense. Seems I apparently went to get a beer, interestingly enough. She tried to stop me and I sort of whined about being restrained. She called emergency services and they came to pick me up a short time later. The hospital was about half an hour drive away. Just before arriving at the hospital, I came to my senses. I woke up, I guess you could say. Very confuse. Where the hell was I? An ambulance? I promptly threw up while lying down and I remember panicking a little. I had no idea what had happened, last I remembered was working my way through breakfast. I was hospitalised for 2 weeks while they ran various tests and about a week in they tentatively concluded it was MS, and put me on that prenidsone or something steroid for 3 days with IV.
I was put on Tecfidera I think it was called, and there we go, a new life had to start. Away from my home country in well let’s just say a slightly different working culture, Japan rather than Denmark, and then suddenly with a chronic disease, it was rather a difficult situation.
This was just when Corona came around too.
And just a few months later, my wife finally became pregnant after years of trying in vain. I have to move on very shortly as I am writing this at work, and there is a meeting in just a few minutes. So I will cut the story short somewhat. Happy to talk about it more and explain if there is any interest.
About half a year after my diagnosis, I started getting a prickling feeling in my fingers on the left hand. MRI scan showed quite a few new spots in my brain. Talked about changing medicine to Gilenya. I thought the side effects sounded scary so I hesitated. Symptoms got worse, spreading all the way up my arm, shoulder and chest, eventually also reaching my toes. Another 3 days on IV steroids, and then changed to Gilenya. Got a heavy rebound a short time later it seems, became unable to walk properly. Driving to the hospital to be checked again was super scary. Another IV steroids. Got a little better. Yet another 3 days IV steroids. Got a all better, and contrasting agent MRI showed it was now calming down completely. That was around Christmas last year.
Now I’ve been getting more prickling sensations various places, more fingers, the rest of the hand, and my face, lips, cheek and tongue. Especially the tongue is super scary. If I lost my sense of taste I sure would feel empty.
I’m trying to bring up changing to Kesimpta or some other such of the new stronger ones. But the MRIs so far haven’t shown particular new wounds.
Doctor says it’s probably just old wounds acting up. Finally got him to do a contrasting agent MRI on December 28th in 2 weeks. Hoping that’ll show something so I can move on. Really hate having this feeling.
I rushed my above post because I was in a hurry, but there were a few more things I wanted to mention and talk about. Since I am in the care of the Japanese health care system I imagine maybe things are quite different from most people here. I generally pay 30% of all medical expenses for example, and MRIs and sclerosis medicine generally fall rather heavily into the super expensive bracket it seems. But since I am essentially paying for everything myself, treatment is also perhaps faster? If I want an MRI, I go as for one, and they basically stuff me in there as fast as possible, like, even the same day if they can get the technician to use his lunch break on it for example. I don’t know, but I have the impression from reading about patients in Denmark and indeed UK, that things seem a little slower. Whenever I talk to my Danish family they are also shocked that I was diagnosed so fast and put on medication immediately. It seems like you generally need a much longer time with persistent symptoms and such before this level of treatment kicks in. I keep hearing how most people barely have any symptoms and not needing medicine. And since my first err visible symptoms were basically a complete blackout and like a completely different person using my body for more than an hour, I sure worried about the future. Are all my attacks going to be blackouts like this? I have a 1 year old toddler and since my wife became pregnant basically I have been constantly terrified with worry. Will I forever just have to stay away from my little boy? If I carry him and poof blackout like that, will he fall down and get hurt? If I drive with him in a child seat and I get a blackout, will we both crash and die? It’s going to be 2 years ago in a few months, and from what I have at least noticed (I wouldn’t know for sure of course) I haven’t had a blackout since then. So have been able to calm down a tiny little bit.
But this is just so hard. Living and working in Japan 12.000km away from any family or friends without speaking Japanese very well, struggling for years to have children like I always wanted, and then finally finally such a cute little angel is safely born, but my reality is now this illness. I went straight into being depressed after his birth basically. It sure didn’t help that I wasn’t allowed to even visit him and my wife in the hospital at all due to Corona, and they had to stay there for 1 week. Didn’t see my son at all until a week after he was born.
It’s a struggle to keep this job so that we can live, and it’s a struggle to not be able to be by the side of my child, and then it is a struggle to be such a flimsy, awkward and shy father when I am finally there, tired, stressed and worried about everything.
I just go around randomly crying all the time.
I feel like I am the tiniest little inch away from disappearing into some black hole or something. I am basically writing here in a desperate attempt to at least talk to someone, anyone. Well, it is all entirely selfish. Everyone has their own struggles. And I have so much happiness I just need to properly acknowledge and treasure. Melancholy and depressed feelings are such an annoyingly difficult thing to push away. The first time I had my little boy alone in the car in his child seat after a bunch of standard hospital checks for babies where he had been stretched and turned around and such to see he was okay, he was exhausted from crying for a long time. So very tired but I got him safely sat down, and then he suddenly looked up straight into my eyes and held my gaze, and seemed to light up a little bit and made this tiny little “huu!” sound of recognition. He was just a few months old and hadn’t actually started smiling yet, and had indeed barely ever looked me into the eyes or looked like he knew me very well. But he was definitely happy to be safe with me in that little moment after his struggles.
That was without a doubt the first and strongest moment for me to really feel like his father, that he needed and wanted. And it definitely saved me. I knew that no matter how much I really loathe this rubbish disease and how disillusioned I may be about life in this country, this little boy is here and as long as there is a shred of anything left in me it’ll be for him.
BOOM MS and then BOOM parenthood sure is a roller-coaster. I’m sure either would be plenty rough by themselves, even if I lived in my home country. But wow everything at once sure is a tad rough.
Well, I’m still limping on. And I’m writing way way too much sorry. I haven’t been able to get all of this out this whole time. I cannot find a Japanese MS society, and I really just need someone to talk to.