December 2017 - Tripping On Air

It’s The Worst MS Symptom. Do You Have It?

48 Comments / Symptoms / December 13, 2017 September 4, 2020

It’s The Worst MS Symptom.

Two weeks ago, I had a really good day. Not just a good day, a good MS day. This was kind of a big deal, because for the past few years, almost all the fluctuations of my MS have been towards a worsening of symptoms; the pendulum almost never swings toward improvement anymore. I struggle to feel grateful for stability at the best of times, and for slower progression the rest of the time.

But then, two weeks ago, in the gym with my awesome physiotherapist, Megan, we were both pretty surprised at how my hip flexors were performing. My balance seemed better than normal too. I’d been intending to budget my energy in anticipation of a busier than average day, but suddenly felt strong enough to party like it was nine months ago. I powered through a full workout instead.

That evening, The Banker and I went to Toronto’s massive Christmas Market in the historic distillery district. It’s a popular place, with crowds and cobblestones to negotiate, but I was bent on sipping cider and seeing the 50 ft. tree. I wanted to wander through the light tunnel and see for myself what kind of people actually traipse around gnawing on massive turkey legs. We took Optimus Prime, my badass convertible rollator/transport chair, because my plan was to walk as long as possible, knowing eventually I’d need a push.

And then I didn’t.

With one little break to sit and look at the enormous tree, I spent the rest of the evening on my feet. And I was stunned and happy and hopeful about how much stamina I’d had. Was my ketogenic diet finally kicking in? Was my increased strength because I’d recently given up sugar and dairy? Has the biotin I’ve been shelling out for over the last year finally paid off?

I’m not one to find something where there’s nothing. At the end of the day, I’m a realist. But any little improvement when you’re doing everything you can just to slow down decline can feel like a massive win. And, I felt like it deserved to be acknowledged.

So I said it out loud.

Which was obviously a mistake.

Two days later, I tried to ignore the weird feeling I woke up with on my head. Like I was wearing a hat. And then, the burning nerve pain that usually hangs out in my feet, started showing up in patches on my legs, and my hip, even though I’d stopped eating gluten a full 6 weeks ago. In my experience, new patches of nerve pain are often the first sign that the beast is waking up. Still, I didn’t freak out.

Two days after that, it was time to check in with my physiotherapist, and do a timed, 2-minute walk test; a standard, if surprisingly unsophisticated, measure of worsening disease in the MS world. I gripped my walking sticks, and tried to go as fast as possible without actually falling. I was in a race against my own decline, and I was desperate to get even one step farther than I had during the last test. But nobody watching me lumber along would have ever guessed I was in any kind of hurry, let alone what felt to me like running for my life.

When Megan’s phone finally beeped to indicate my two minutes were up, I was nowhere near my goal. In fact, I’d lost about 20% of the ground I’d been able to cover since we’d last tested a few months ago. My heart sank with that familiar feeling. Progression.

Then, 3 days ago, I met a friend for lunch. The Banker dropped me off, and knowing I only had to travel from the car to the table and back, I opted to bring my cane rather than my rollator. I knew it would only be a handful of steps, and sometimes the rollator can feel like such a pain in the ass. My friend and I had a lovely, productive lunch. Afterwards, I almost made it safely to the car. In fact, I was so close to the car that as I went down, I really hoped it would be what would break my fall. Alas, it was the sidewalk that caught me. And my face.

Oh, hey, it’s cool. I’m just gonna hang out on the ground for a bit.

Since then I’ve been replaying the walking test and the stupid fall, over and over again in my head. What happened to my good day? Why are my hip flexors still kicking ass while my right foot has just decided to stop trying?

Is this because I forgot what beer is made of, and had half a bottle of Stella last week?

Last night I was more preoccupied than usual, thinking about this failing body, trying to be grateful for what it can still do. As I was rubbing my feet in my nightly attempt to get them to feel something other than constant burning, The Banker, seeing that I was in distress, asked me, “What’s your worst symptom right now?”.

I didn’t even have to think about it. “Fear”, I said. It’s always fear.

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What You Need To Know About Colds And Flu With MS

22 Comments / colds and flu with MS / December 4, 2017 October 31, 2020

The truth about infections and MS.

*This article was first published in 2017. For official recommendations on Covid and MS click here.

If, by the time you’ve finished reading this, you’re afraid to come anywhere near me, then I’ve done my job. It’s not you. It’s your pathogens. Notorious germaphobe and paranoid recluse, Howard Hughes, was on to something with his habit of setting his clothes on fire after a brush with someone sick. The dictionary makes mysophobia sound like a bad thing, and okay, maybe Hughes was a teeny bit mentally ill, but seriously. If cold and flu season has taught us anything, it’s that the majority of the population could stand to dedicate a little more time to soap and water.

As a paranoid germaphobe myself, I spend the winter months nervously giving the side-eye to everyone with a bit of a red nose. I’ve perfected the art of opening doors and pushing elevator buttons without ever making contact with my skin. I wear gloves as much as possible, and never miss an opportunity to give them a swipe of hand sanitizer. I hate passing the peace, handshakes and hugs, free samples, and food on platters. When I hear anyone cough in public, I say a silent prayer that it was a smoker’s cough and not something communicable. I don’t care if it came from a ten-year-old. Ten-year-olds are first-rate germ factories.

I am straight-up annoying to everyone I know.

Annoying or otherwise, my fears have been validated by someone with a PhD. The last time I saw my neurologist we talked about how my MS is sadly progressing, despite my having had all the drugs. The big guns. There are no new DMD’s for me to try, and instead of leaving with a prescription, I left with strict instructions that the best thing I could do to prevent faster progression would be to stop getting UTI’s, and to avoid getting colds or flus like, well, the plague.

While nobody likes getting sick, the consequences of a cold or infection for someone with MS can be catastrophic. I know, you think I’m being hysterical. But here’s the deal.

People with MS already have out of control immune systems that aren’t good at multi-tasking. Exposure to immune-modulating therapies can make it easier to contract infections, and they can last longer and hit harder. When MS is already messing up your life, getting sick can be debilitating. While this sucks, it’s not even close to the worst part. I could deal with bedrest and Netflix a few times a year. It’s unpleasant but temporary, right? Wrong.

The scariest thing about these infections is that, the trigger-happy MS immune system might be well-intentioned as it seeks to destroy that which it thinks is threatening, but more often than not, it’s completely fucking wrong. Poking at it with a stick can prompt an actual relapse that has nothing to do with snot, coughing, or phlegm. The consequences of a relapse can be permanent neurological damage. Yeah. All because of a cold.

What do I know? I’m just a paranoid blogger.

You don’t have to take my word for it. In 2006, brainiac neurologist Dr. William A. Sibley won a fancy prize for his research showing the influence of infections on MS relapses. His work proved that up to one-third of MS attacks follow a viral upper respiratory tract infection (that’s colds and flus, bitches).

One-third.

When I think about the relapses that could have been prevented, I want to barf.

Colds and flus are a part of life. We have a whole season dedicated to them. But the situation doesn’t have to be as bad as we let it. We live in a culture that values work over well-being, and showing-up over shutting-down. Between our obsessive work culture and out of control FOMO, we’ve convinced ourselves there’s something noble about ploughing through when we’re under the weather, regardless of how this might impact other people. Are we insane?

If you’re coughing or sneezing, put on a Hazmat suit or stay home.

Obviously, the answer for me is to live alone in a castle with a moat full of dragons. But that seems expensive, and unlike Hughes, I have no desire to completely withdraw from society, cootie-ridden though it may be. It’s December. Party season. And I intend to make merry. In fact, The Banker and I are hosting a holiday bash next week. But there won’t be any making out under the mistletoe, and no, you may not have a sip of my drink. If you are lucky enough to be on the guest-list, there will be a bouncer at the door, disguised as a triage nurse, who will take your temperature and give you medical clearance before letting you in.

Protect yourself.

Consider getting the flu-shot. Wash your hands, don’t touch your face, and wash your hands again. This holiday season may the only things we spread be joy, love, and cheer. And if you are coughing, sniffling, or sneezing, please stay home.