My Worst MS Day. Ever. So Far.

My Worst MS Day. Ever. So Far.

Last Monday was my worst MS day. Ever.

I haven’t had a lot of ‘disease activity’ over the last year. Don’t get me wrong, Multiple Sclerosis affects me every day; but that’s old news, the stuff I’m used to. After coping with, and recovering from, a sudden decline in my mobility last Christmas, I spent most of 2018 feeling grateful for all the steps I’m still able to take, and proud of how I’ve been able to focus on what I can do, without obsessing over scary hypotheticals. 
It’s possible I’ve been a little too hasty in giving myself props. After all, I’ve had Multiple Sclerosis for a thousand years already; I should know a thing or two about living with chronic illness. MS is always going to be hard, but it’s relatively easy to keep your shit together when things are stable.
Of course, this is MS, and stable only lasts so long.
And so it was that last Saturday I woke up in New York City, in town for a Very Important Bestie’s Very Important Birthday, feeling only slightly rougher than usual. I blamed my heavy vocal cords on dry airplane air, a late night, and my attempts to channel Eminem at a karaoke dive-bar the night before. I didn’t have time to give my fatigue too much thought. I was in the Big Apple at Christmas-time and festivities were afoot. 
As the day wore on, it became harder to ignore the congestion that was building in my chest, but ignore it I did. There was no way I was going to be sick during a weekend in one of my favourite cities, to see one of my favourite people, at one of my favourite times of year. I threw on a red lip, shoved a wad of kleenex up my sleeve, and made the sign of the cross, before heading to my VIB’s VIB dinner at a legendary New York steakhouse.
What’s her secret? That wristlet is full of caths and there are 18 tissues up my sleeve.
We arrived at the restaurant, ready for good times. There were three or four steps into the dining room, because big cities haven’t gotten the accessibility memo yet. This was annoying, but manageable. As The Banker tucked Optimus Prime, my convertible rollator into a corner, a friendly waiter helped me negotiate the stairs down to the table where our friends were waiting.
We had an amazing meal, my last pleasant memory of the weekend that would be cut short. By the time dinner was over, I knew with a sinking feeling that I was, for sure, coming down with something. What I didn’t know was just how badly whatever bug I was battling was about to start poking the MS that had been relatively quiet this past year, with a stick.  
Enter the pseudo-relapse. 

Unlike a true MS exacerbation that happens when there are new lesions on the brain or spinal cord, a pseudo-relapse can be caused by things like infections, increases in body temperature, exercise, stress, lack of sleep, a butterfly flapping its wings. A pseudo-relapse wakes up old symptoms that may have resolved, or makes existing symptoms worse. And in my particular case, on this particular week-end, much fucking worse.

When it came time to leave the restaurant, those same stairs I’d negotiated with a cane and the arm of an anonymous man were suddenly impossible. In the span of a few hours I’d gone from prancing around Manhattan, shopping and posing for pics, to being carried up three stairs in a wheelchair by two burly men. Okay, one was a waiter, and the other The Banker. Neither were particularly burly.  
Though it was cold and drizzly and the hotel was 30 minutes away, I didn’t want to take a cab because I didn’t think I could physically get out of my chair to get into a car. So we walked. I mean, The Banker walked. And pushed. I sat, wrapped in the blanket I’d taken from the hotel, feeling defeated and small after the whole restaurant hoist, ready to sleep it off and start fresh the next day. 

But there was nothing fresh about the next day. 

As I lay in bed, flat on my back, my anxiety turned to dread when I realized I couldn’t sit up, turn over, or bend my legs. At all. I woke The Banker who pulled me into a seated position. As soon as he let go, I went crashing back down; both of us shocked to learn I couldn’t hold myself up. 

I knew I was running a fever, and figured I was getting the flu. I know what that can do to MS. But just because the pseudo-relapse isn’t a real relapse, doesn’t mean it can’t do real damage. Here’s something I just happened to have read on Bart’s MS a few days before my deep dive into a new level of disability.
“Every time you get an infection it causes your immune system to produce cytokines, or inflammatory messengers, that travel to the brain and boost(s) the activity of the microglia. The hot microglia then exacerbate the damage that MS is doing to your brain and spinal cord. This is why many of you tolerate infections so poorly and often don’t recover back to baseline after a severe infection.”
I’m not exactly a science girl, but it sounds to me like cytokines are Satan’s envoy, sent to provoke the hot microglia into a bar-fight in my brain. None of this is good. The possibility of not recovering back to baseline is what makes colds and flus such a freaking nightmare for people with MS. Like a real life visit from a very dark Dickensian ghost, for a few days this Christmas, I had a glimpse into a possible future where I am less independent (the gentlest way to put it). This past week-end, I got to try on what it feels like to have to ask for help. 

For Every. Single. Thing. 

My pseudo-relapse lead me to experience the uncomfortable dynamic of being dependent on my partner, of apologizing for things that are beyond my control, but I nonetheless feel responsible for. I felt the demoralization that comes with the constant please and thank you’s for things I never wanted to need.  

And I hated it.
Until this past week-end, I’d spent the past year feeling pretty kick-ass and mentally strong. I haven’t been wigging out over future disability day-mares. And now I suddenly find myself jolted back into consideration of a future that once again doesn’t feel so improbable. It’s a future that feels like it’s one step away instead of ten. And it’s just too hard to imagine. 
So I won’t imagine it. Or I’ll stop imagining it. Now that I’ve given voice to my fears, I must put them back in a box and light them on fire. As my flu symptoms began to resolve, my strength and independence blessedly began to return. I’m still recovering, and fingers crossed, I will get back to baseline. 
Today at least, I am okay. And that has to be enough. 

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44 thoughts on “My Worst MS Day. Ever. So Far.

  1. Your post voiced many of the things I've been feeling. I am still dealing with the emotional "_____" of suddenly being unable to walk. I was on a plane that required stairs… long story short, equipment had to be called to pluck me off the plane. Also, transferring from the wheelchair to the taxi? I'm surprised i made it. The whole thing was a shocking glimpse into my future. very traumatizing for both me and my husband.

  2. Happy to hear that you're feeling better. Hope the psuedo-relapse doesn't result in your baseline being moved.
    I wash my hands frequently ever since I was diagnosed. Also one of the first to get a flu shot. I avoid teenagers and young adults like the plague since they are more likely to have respiratory infections.

  3. Getting home by plane was part of this story too. I was strapped into that skinny wheelchair, my arms folded across my chest. It felt like it took a Seal Team to get me up and down the stairs. It felt unnecessarily dramatic and I felt sooooo many eyes on me at every step of the way. I was not prepared to be the centre of a freaking rescue operation.

  4. Yes, I'm with you on all these cootie-prevention strategies. I'm starting to think seriously about wearing a mask when I travel, but I'm so vain, and I already feel like people are staring. I have to get over myself.

  5. Thanks Jenny. I hadn't had a fever in forever, and I never thought it could be worse than what a bath or being out on a hot day does to me. What a rollercoaster this thing is.

  6. I’ve had that paralysis a couple times over the last 10 years and it’s very scary. It happened when I had a fever and tylenol 3 was my saviour. I keep them on my bedside table by my cellphone in case needed.

  7. My husband always says after a bath I am much weaker.I feel a bit like a noodle, but I keep having them..I love a bath and I’m not ready to give them up yet

    1. In the days before MRI, part of an MS diagnosis could have included a ‘hot bath test’. So, it’s true a bath can make you temporarily weaker, but I’m with you. If you love baths, keep having baths and plan the recovery time.

  8. I went through this last February after a particularly virulent UTI. I never did get completely back to baseline. It seems that damn baselines keeps getting moved like some demented football game. I hate the moniker “pseudo-exacerbation” there is nothing pseudo about it if you are the one going through it. It doesn’t matter if it is new lesions or old ones, the outcome is still the same…nothing works. It’s like the medical community can’t be bothered getting upset about something they have seen before, it’s got to be “new” to get them excited and treat you. Hugs.

    1. I didn’t get back to baseline either. I’m maddest at society tho, for our power-through everything mentality that leads to people showing up to work or wherever when they’re sick and spreading germs.

  9. GritandDetermination

    Powering through the day with a broken smile to crash into bed as soon as I get home from work, repeat 5 days a week sleep all weekend. Invisible illness is both a blessing and a curse.

    “I felt the demoralization that comes with the constant please and thank you’s for things I never wanted to need”.

    Such a true, raw statement, one I think often going through relapses (because thankfully I recover). No one wants to have their walker guided by their mother or be lifted to the toilet by their husband-but thank God I have these amazing people in my life who love and care.
    Love the article.

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