Approaching Three Years

In a couple weeks, it’ll be the three year anniversary of my brain breaking. A few weeks after that, I turn 43.

I was really excited to enter my forties. Big surprise, something I looked forward to was once again just a kick to the face from the Universe. So far? My forties have sucked. Between the bullshit that is multiple sclerosis, a pandemic, inflation (corporate price gouging) making every dollar shrink exponentially, and watching the province I love be infiltrated by RWNJ and its health care system collapse…I also deal with grey hair, wrinkles, breakouts, hot flashes, mood swings, a spreading middle and boobs an inch lower than where they started.

Aging blows.

There comes a point, after a major diagnosis or injury, when you have to stop waiting for recovery and realize this is it. My neurologist told me some people get some improvement in mobility within the first year after starting Ocrevus. My year is drawing to a close.

I always thought I could do anything. If I worked hard enough and tried hard enough and believed enough, I’d eventually get better. I could go back to long walks and hiking in the mountains, maybe compete in ballroom dance again, add the occasional run back to my fitness regimen…

Nope, that’s allllll over.

My neurologist explained to me recently that an earlier MRI revealed 13 spinal cord lesions. which I knew. Although the spinal cord does have neuroplasticity like the brain, it typically can’t use those properties. The spinal cord is such a compact space there are very few options for rewiring around a lesion.

I’ve worked my ass off to the point of exhaustion for nearly three years but this is as good as it gets. I’ve come a long way, but I likely won’t get any better.

According to the MRI in August, the Ocrevus is working just as it’s supposed to.

There’s no disease activity on the scan at all, and no new lesions. I won’t get any better from here, but I’m also unlikely to get worse, for now.

This summer, I went back to work a few days. I volunteered to supervise others because I can’t work alone anymore. One shift, I struggled to start an IV because I couldn’t control my left hand properly. IVs are a two handed task.

Another month, I did the longest drive to and from a shift that I’ve done in three years. One of my medics collapsed due to a previously unrecognized health problem. (They’re fine now, it was a minor short-lived issue and it’s completely resolved.) I was able to balance on the side of a ditch and care for them without falling into the ditch. I handled all the necessary equipment. It was hard, but it made me feel slightly less useless. Working regularly outside the house isn’t an option anymore, but if someone really needs help during an emergency I can probably keep them alive for awhile.

On a separate note, can I just say how annoying it is when I make a comment that my body hurts or that I feel old, and some well-meaning person chirps, “You’re not old!” or “43 isn’t old!”

Bitch, please.

Cute that you’re trying to be positive at the tender age of 27 or a healthy, able-bodied 50 but let me do the math for you.

I might be only nearly 43 chronologically, but in MS years I’m 72.

There’s a few positives about being in my forties with an incurable disease that makes my life stupidly hard. I’m kinder about other people, and more difficult when it comes to myself. I’m much less judgey over that last few years because I’ve come to realize that everyone is just doing the best they can with what they’ve got. Sometimes their best isn’t that great by some standards, but for them it’s probably all they’ve got at that moment. (I still think a lot of people are dumb. I’m not a new saint, I’ve just further lowered my expectations.)

I’m more difficult about me.

I saw a meme or a reel or some type of thing awhile ago that said, “I’d rather be difficult than easy to screw over” and that started a whole thing.

See, as we’ve talked about before, I tend to default to people-pleasing and over accommodating to make everyone else’s life easier. What would happen then is I’d be angry and resentful, and that combined with anxiety, would make me incredibly snarky and irritable.

I got a thick envelope in the mail from AHS last week. First, it was weird that my next brain and spinal MRI was booked for a mere 8 months after the one I just had. Then I noticed it was at a diagnostic centre in the middle of a city that I don’t live in.

A new place made me feel anxious since I have to be sedated to tolerate the claustrophobic and loud procedure. I was also anxious about new techs, because the ones at the place I normally go are wonderful. The last unsedated MRI I had years ago, the tech pulled me out of the machine without warning. He shouted at me as I cried and hyperventilated from being in the machine. He had other things to do that day. I needed to grow up and get it together. The reason he was shouting at me? I was moving too much (during my anxiety attack) and it was causing artifact. (More importantly, he was a bullying, unprofessional pr!ck.)

To this day, I deeply regret that I was so upset from the claustrophobia and the noise and the fear of potentially having something wrong with my brain as a single mom, that I didn’t get off that table and punch that weasily little f*ck right in the mouth.

But I digress…

I didn’t want to go to a new place with new people. They scheduled the appointment perfectly so we’d hit rush hour after the scan. It would take us about two hours to get home.

I glared at this stack of papers and catalogued the stress, the frustration, the aggravation, and the inconvenience.

This stupid disease that I didn’t ask for or cause makes my life really hard. I’ll be damned if I let anyone make it even more disruptive to my existence.

I wasn’t mean, or rude, or bitchy but I was firm.

When I phoned Central Booking, I first discovered they’d made a mistake by booking the MRI in April of next year instead of August. Then I politely but firmly said that I couldn’t get to the other diagnostic centre, it needed to be at my usual place because it’s the easiest for me to get to.

No problem, she said. How about 7 am August 3rd?

Absolutely not, I said. (That would mean I have to be up at five, on the road for six, and the level of sedation I undergo for a 90 minute MRI would mean my entire day would pretty much be a wash.) I have no problem with evening MRIs because I can just go home sedated and go to bed, and I said so, and I also said that I will never come into the city for an MRI earlier than noon if she wanted to put a note in my file to save the next scheduler time and hassle.

Long story long, I advocated for myself. No one was mad, the booker made it seem like no big deal, and I have my next MRI scheduled for the most convenient time at the most convenient location for my husband and I.

I might have to deal with MS for the rest of my life but the disease alone is hardship enough. No way I’m jumping through hoops to make other people’s lives easier. Especially if they’re paid to do a job.

Since my brain broke, I’ve unlearned so much that became detrimental to my existence, questioned everything I ever believed, changed most of it, and finally learned how it feels to not be living in constant fight-or-flight mode.

Here we are, three years later. I forever have MS. While I’ve recovered as much as I can, I’m stuck with permanent disability. I’ll never work as paramedic again, but it’s been three years and life goes on, I guess.

So now what?