“Let’s go for a walk,” my wife, Jane, chirpily suggested.
This was a bit of a nightmare. I had to put on trousers. I perhaps cheekily get away with only wearing an apron all day. It makes going to the bathroom so much easier. (A little later in the day I spent an hour proving it, so it’s not the aberration of a dirty old man to wheel about the place wearing his sexy nappy, or more professionally, pad.) Trousers can only be put on with my trusty Molift raiser, and despite being on a full dose of steroids this week, I still needed help to stand on it.
This has not been the case all week, however. It’s the old good and bad days scenario.
A year ago, I was still going to work once a week. Once there, I could stumble a few steps, with help, to get onto the venue’s stair lift. But no more.
I presume I transitioned from relapsing-remitting MS to secondary progressive MS as the pandemic was starting. Of course, this is something I need to confirm with my neurologist. Handily, when this column is published, I can send it to him!
It’s a complex area, as this 64-page booklet from the U.K.’s MS Trust lays out.
I was hanging in there with my last disease-modifying therapy, Ocrevus (ocrelizumab), but had to be taken off of it because my leukocyte level had dropped so low. I was at risk of contracting progressive multifocal leukoencephalopathy, a rare but potentially fatal brain infection.
Still, there have been some positive effects from this year’s steroid megadose. My sight has improved so much that I can actually make out the copy of Facebook and Twitter on my iPhone — something I haven’t been able to do in months. I’ve been away so long that it seems like bad grace to join in again. And where does anybody find the time? When you give away the rights to your content, you really are working for the man. Egos, hey! But I digress. It’s an ego thing …
Perhaps that trip to the optician I considered the other week isn’t necessary after all. It’s like when I first developed trigeminal neuralgia (TN). I complained to my dentist about jaw pain, and he gave me a full work-up. When he couldn’t find anything, he diplomatically suggested it might have something to do with my MS. With a bit of research, I realized he was absolutely right. My TN was recently sent into hyperdrive by my first COVID-19 vaccine, but the steroids have calmed it down.
No such luck with my sex life — or rather, lack thereof. Unlike last year, when I had a similar full steroid work-up, the complex series of steps needed to have an orgasm have now been removed from me. I was brought up Catholic. They won — I’m now part “proper” priest. Hey-ho.
So, the combination of a nice day and the protection of my first COVID-19 vaccination elucidated my first trip into the outside world, apropos of nothing!
It was scary — not because of the pandemic, but because of all the broken pavement out there. I might be driving a powered chair, which is the equivalent of a tank, but I’d forgotten the sheer concentration it takes. It was like my wife was taking a timid dog for a walk. Still, the upside is this particular dog will never require a pooper scooper. If it did, well, the steroids will have really worked!
P.S. I was going to write about Rare Disease Day, which falls on Feb. 28, claiming that MS doesn’t qualify as one. Unfortunately, Ed Tobias, another patient columnist and my fellow co-moderator of the MS News Today Forums, wrote about it a year ago: “MS Is a Rare Disease? I Think Not“
P.P.S. I tried to award him five stars but mucked it up and only awarded one, so I’ve really shattered his average. Do us a favor and award him the five stars his writing deserves. Still, if you muck it up like me, well, that would amuse me.
Note: Multiple Sclerosis News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Multiple Sclerosis News Today or its parent company, BioNews, and are intended to spark discussion about issues pertaining to multiple sclerosis.
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