21.01.2022 | “There’s A Dread Deep Down In Our Bones…”

Lyrics: “The Lifeboat” ~ Frank Turner, 2018

During a phone conference with two coworkers this morning I rather off-handedly mentioned my MS (and my low antibodies numbers, more on that in a bit) and the new coworker was “OMG, I didn’t know you have MS”, which showed me once again, how invisible this disease is and how rarely I have a reason to talk about it. And I’m grateful about that, because in the over two decades I’ve been living with this now I’ve met my share of fellow patients who were doing much worse than me. I’m also grateful for living in Germany with a decent healthcare system, where I don’t have to worry about the cost of any treatment or monthly medication. FYI: My medication alone are costing my health insurance about 1.800 € per month (!) with only a negligible co-pay from me.

I don’t want to reiterate all the ups and downs physically and also mentally/emotionally I experience with my MS over the years. There have been some. Currently I’m doing fine physically, well MS wise anyway. Overweight and out of shape otherwise, but that’s got nothing to do with the MS 🙂 Emotionally the pandemic had it’s ups and downs so far. Or rather downs and back to normal, I guess. No ups, really! About 10 or so years ago the my MS reached such a progressed state – even though I don’t really notice that, except for the clearly progressed damage shown on the MRI films – that I’ve been taking medication to suppress my immune system to some degree, because MS is an autoimmune disease. The medication I’ve been on for over five years now is a proper MS wonder drug which so far halted the MS from progressing. There are a few other health issues I should / need to look out for, but so far so good.

But of course COVID changed a bit of those rules. Taking immunosuppressants put me in the higher risk group, because… well, my immune system might not be able to fight this new virus as well as it should. As it’s all a scientific-discovery-in-progress with COVID there is still so much unknow. But taking ANY kind of immunosuppressant got me vaccinated a bit earlier than ‘regular’ people, which was cool, of course. Not so cool, that my antibodies were rather low even after the 2nd shot. As it was summer 2021 and the COVID numbers were low I didn’t really worry too much about that. I knew I’d be one of the first eligible for a booster shot in the winter anyway. Two days after my booster my neurologist told me, that I might still need to be very careful, as new studies had shown that my medication – Gilenya/Fingolimod – reduced the immune reaction to the vaccine and leads to lower antibodies numbers than in regular / healthy people.

Last week I got the numbers from my current antibodies test and once again they are on the lower end of the measurable scale. As expected. As troubling. I hate this. And yes, I know that it’s more than antibodies which determine how severe or not a COVID infection will be. But it still sucks to know that one part of the defense is broken down long the war has even started. I now also have to figure out a new plan how to avoid to get seriously ill with COVID while the Omicron wave is raging through Europe. I got some advice through friends, who got it from their doctor friends. My GP doesn’t necessarily agree with that advice, but would act on it, if that’s what I want to do. I asked the MS nurse at the neurologist to put my dilemma to my neurologist and ask for his opinion. He obviously wants to talk that through in person only, so I hope he will have the time when I need to pick up a new prescription next week.

I don’t know how much time I spent these past few days with explaining the situation to other people and asking for advice. Reading up on the whole dilemma on my own. Time worrying about it and being anxious. Having a chronic disease AND being an anxious worrier at the same time is annoying, in case you were wondering. All in all it sucks up so much of my energy and time and just… ugh! It’s hard.

It also makes me less understanding and lenient towards all those people who “finally” want (their) life go back to normal, because they have been giving up so much in the past two years and they’re fed up. News flash: So am I! People who gather in crowded cafes on a Sunday afternoon. People who say “we’ll now all get it at some point, so why bother with any regulation (masks, restrictions…).” People who say “cancelling gigs for February has been an overreaction”. The latter is a very specific pet peeve of mine to be fair. Because… I have NO idea when it will be safe for me again to be at an indoor gig. Not to mention, if I will feel safe and be able to enjoy it, even when all the facts say it will be safe. At the moment I avoid spending time in any crowded place at all. At least until I’ve talked to my neurologist and we come up with / agree on a plan or at least can see some kind of perspective. One might be to make sure I’m eligible to be pumped with the state-of-the-art-meds once I will – inevitably – catch COVID this year. But so much is still so uncertain for me. And that’s dragging me down. And making me grumpy and bitchy. I don’t like myself when I’m like that, but sometimes I can’t help it.

I was supposed to be at Cambridge Junction right this moment, waiting for Frank Turner and the Sleeping Souls to play a gig. To be fair, when I bought the tickets in September (?) I wasn’t sure If would have felt comfortable going. Because I knew I would always be at a higher risk. But it was a nice dream for a while and then it all got cancelled anyway. I was afraid if I’d spent the weekend at home I would be wallowing miserably, so rather on a whim I booked a stay in a serviced apartment in Cologne for the weekend. Unfortunately the weather is a bit dreary at the moment, so I didn’t spent too much time outside – taking photos or just walking around – yet, but I still feel like I’m on a mini vacation. Spacious room. A different view. A change of scenery. Anything to take my mind off the things I’m missing at the moment (hypothetically, because the tour isn’t happening) and to distract myself from worrying too much about the things I might still need to miss in the future. Depending on how my perspective as someone who takes immunosuppressants during a pandemic will be…

Cologne Cathedral, 2022
Cologne Cathedral from my window

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