My Legs Hurt…Cuz I Ran Yesterday!

I ran like the wind!

(If the wind was a barely moving air current propelled by a broken, rattling fan missing 3 of its 4 blades, squeaking with every revolution then yes, I ran like the wind.)

But it doesn’t matter because I ran 5 intervals on the treadmill at 3.5 mph and it wasn’t FAST but it wasn’t a shuffle and it was hands-free. I didn’t look disabled. I just looked like the slowest, most out of shape middle-aged runner ever.

I’ll take it.

Yesterday I followed up most of my statements to my husband with, “…because I ran this morning” which I’m sure stopped being funny or entertaining after the first eight times, but he’s very tolerant of my shenanigans. I was very excited.

I spoke to some wonderful folks recently who are also members of this shitty MS club. Turns out I’m not the first or only person with MS to experience depression. I’m certainly not the only person to be depressed during the pandemic, either. I’m extremely introverted and I love staying home, but I’ve hit a mental health wall after a year of Covid. I can’t imagine how people who like leaving their house and being around other people have survived this long without going all the way out of their damn minds.

But I digress…

In true introvert fashion, I went to ground recently and mulled things over. Part of the problem for me is that MS is very unpredictable and inconsistent. I don’t like inconsistency or surprises. I like to plan things and now I have stupid MS that screws with my plans. Some days, I’m really symptomatic and I can’t get anything done. Other days, I do pretty well.

I never know how every day is going to be until I get out of bed in the morning, and I hate it so much.

I’ve been trying to recover my physical fitness for over a year, and it remains challenging and unpredictable. One day last week I ran for thirty seconds, one time. The next day, I couldn’t run at all. I could barely walk around my house. I’ve had days where I couldn’t use my left hand to hold a fork to eat, and if you’ve met me you know I don’t mess around when it comes to food. I hate all of it so much and my head is a mess.

I’ve been trying to find where the line is between determination and delusion. The line between belief and denial. Where’s the line between acceptance versus just giving up?

I tend to happily cross lines on the regular so how do I know when I’ve crossed those ones?

I’ve realized that I’m going to have to adjust.

The thought of making adjustments for this shitty disease galls me, but it’s either that or I spend the rest of my life exhausted and frustrated and railing against what I can’t change despite all my efforts.

I think I’m ready to stop pushing through the bad days.

In true Stephani form, I’ve spent the last 14 months trying, trying harder, pushing, pushing harder, and dealing with everything in my life falling apart. There have even been tantrums.

Oh lord, there have been tantrums. You haven’t lived until you’ve seen me have one of two kinds of tantrum. Picture this one first: 41 year old woman, too tall and broad to be considered cute while melting down, sobbing hysterically while drooling (the PoNs device causes a lot of saliva) and aspirating said saliva, nose running, diaphragm heaving, some sobbing about how I’m sick of everything being hard and my life sucks, has mostly always sucked, and will continue to get suckier from here.

I call that one the sexy tantrum.

We also have the scary tantrum: Picture a 41 year old woman, tall and broad enough to be really frightening when angry, screaming about how it’s not fair and I’m sick of everything being hard, but now we’ve added hitting walls and throwing anything I can get my hands on.

It’s rage. It’s awful to experience and it must be awful to be around, and I’m grateful the scary tantrum has only happened a couple of times. I’d be more grateful if they hadn’t happened at all, because the rage comes on like a switch has flipped. Each time it’s happened, I don’t even feel like it’s me. There’s just some shrieking psychopath standing in my place.

My husband has witnessed both types, but only the scary one once in person earlier this month. I’m not sure which bothers him more. He hates seeing my cry, but for a decade our house has been a very calm environment in that there’s no yelling, no conflicts. There’s very rarely any arguing and only once every couple of years do we fight to the point there’s even an increase in volume.

I hate that I’ve brought anger and yelling into our home.

It’s not at him, but it’s in his environment and that’s not fair.

The scary tantrums end up turning into an ugly cry while I apologize, and he tells me it’s okay. He probably dreads answering the phone when I call him at work, because I do it so rarely. It’s always an emergency or a meltdown. I’ve called him a few times, coming completely unglued and needing him to talk me off the ledge.

He’s my port in any storm and he’s able to get me back to rational, but I’m sure it’s not easy.

I feel like I’ve turned into my ex and I hate it. Things are fine, then I snap and turn into a crazy raging psycho and then I’m apologizing and promising it’ll never happen again.

My husband, who is the greatest human in the world, assures me that being angry about our new reality is okay, and getting loud about it is okay too. I’m not yelling at him, I’m not hurling insults or name calling, and I’m not physically aggressive. I’m generally on the floor. (I don’t use the word ‘tantrum’ lightly.) I have thrown a rug across the kitchen after I tripped on it for the 875th time, and I threw an agility ladder across my foyer.

Neither of those items were very aerodynamic, by the way. A complete waste of my ragey energy.

Cam says the rage comes when I’ve become too frustrated by too many hard days in a row. My coping abilities get overwhelmed and I come unglued.

If I’m being honest, I’ve always had an incredibly low frustration threshold. My threshold for frustration and uncertainty tolerance is about on par with my tolerance threshold for stupid people. Before my brain broke though, I could power through most things that were causing me frustration.

Now my brain stem has its own ideas. Digging deep and powering through doesn’t work when your brain stem is the gatekeeper of which messages get to your body, and sometimes the gatekeeper is having issues.

I have to stop letting myself get that frustrated, for no other reason than I know what it’s like to live in an environment constantly walking on eggshells, wondering if there was going to be an explosion of temper and I can’t subject my husband to that.

I don’t think there’s any point in subjecting myself to more anger, either. I’ve been subjected to it enough from others in my lifetime, and yet I’ve been so angry for the last 14 months. My fellow MS club members tell me this is normal and okay, but it’s exhausting. I’m ready to move out of this phase. I’m not sure if I’m ready to hit acceptance yet, but I’ve definitely had my fill of depression, anger, and bargaining over the last 14 months.

People talk about ‘MS Warriors’ and ‘fighting MS’ etc but lately I’ve started thinking how that type of language doesn’t resonate with me anymore. Multiple Sclerosis is auto-immune.

It’s me, self-destructing.

My own immune system mistakes my central nervous system as a threat. It’s me kicking my own ass.

I know some people approach their disease like MS is the enemy, something to war with and fight against. That works for them, but I’m so tired of everything for most my existence being antagonistic in some way. I don’t want to feel antagonistic or look at something in a way that makes me feel hostile, or ready to fight. I default to ‘fight mode’ pretty easily and I’d like to not.

If MS is autoimmune, it’s my own body causing the problem. It’s not some outward foe that I need to fight off.

At this point in time, while I try to navigate all the mental health debris from the last few years, it’s not helpful for me to feel antagonistic about the MS and the damage my immune system has done to my brain and spinal cord. What, I’m supposed to be mad at myself? I’ve never been one for a lot of self-flagellation or derogatory self-talk so if I don’t beat myself up over my very questionable relationship choices in my twenties, why would I beat myself up for developing an auto-immune disease?

Following that logic, I should probably stop getting so angry when my body fails to do what I want it to do, when and how I want it done. That’s definitely easier said then done, but I’m trying to keep a few things in mind.

My brain and body are trying their best.

We have communication breakdowns, but we’re working on it. Sometimes there are, and will likely always be, miscommunications.

My immune system meant well when it ran wild all over my brain stem and spinal cord, trying to help. It was confused, not malicious.

Big shocker that anything related to me went at something really aggressively, right?

Now my brain and body have a harder time communicating when I’m tired, dehydrated, fatigued, over-exerted, stressed, too warm, too cold…Basically I’m now unable to ignore my basic human needs and comfort. I have to be fed, watered, rested, just warm enough, just cool enough, and unstressed enough in order to function, so now I have to take care of those things first.

If you knew me a few years ago, you’ll know what a change that is. When I was working and staying awake for 24+ hours at a time, I would drink just enough coffee to take the edge of the exhaustion but nothing else. I stayed dehydrated because I didn’t have time or opportunity to pee, and I can function without food for days if I have to. Working at night outside in the cold was the norm, and sometimes in the rain too. I was just used to being physically and mentally uncomfortable, and I just ignored any signals that I needed anything.

I can’t ignore signals anymore; falling over is a pretty good attention-grabber.

I’ve also stopped trying to power through when my body isn’t cooperating. It’s never worked since my brain broke but I can honestly say I gave it my best try. All it does is upset me, which makes things even worse.

I ran for 27 seconds today, and then that was the end of that. My brain stem was like

And that was okay, because I ran 5 little intervals yesterday.

That means I’m capable of running again, just not today.

Today after my morning Synaptic session, I fell asleep for an hour. I’m not mad that today I’m extra tired, because I ran yesterday. Good job, brain stem! You want a nap? You get a nap! Feel like a a litre of water and a snack? You get a litre of water and a snack!

I now have a whole list of things I can do when I have bad days. They include sitting on the couch with my favourite fuzzy blankets and an extensive list of things to watch on Netflix and Prime Video. I have a short list of movies I’m always fine to rewatch. If the bad day isn’t horrifically bad, I have a whole e-reader of books but on the really bad days I can’t read, either. Staring at Netflix is always possible though, even if I can’t really follow a plot. Napping is also on the list. On the really bad days where stairs aren’t my friend, I could spend a day in my comfy bed and listen to podcasts if that’s all I’m capable of.

It’s not a very extensive list but I’ve accepted that I can’t do much on the bad days. Cam says there are some people in the world without medical challenges that will spend a day on the couch watching movies just for fun, because they can.

Weird, but ok. I suppose it’s not really a terrible thing to have movie days a few times a month. Cam will have to bring home dinner because I’m unable to stand in the kitchen and make food but I suppose the world isn’t going to end. He’s probably not going to bemoan his lousy wife because he has to bring home take-out from time to time.

Something just occurred to me as I type this. I wonder if I stop trying to force myself through the bad days and rest instead, if I’ll have fewer bad days? Wouldn’t that be a kick in the head.

Cam reminded me that at his jobs, he’s entitled to sick days. I can take sick days too.

I ran myself ragged for 40 years, and then my luck ran out and my brain broke. He figures I have quite a bank of days off accumulated.

Today isn’t a stellar day, mobility-wise, but it’s okay. I’m catching up on the PVR and there’s plenty of leftovers to reheat for dinner.

Tomorrow might be better, or it might not. I won’t know until tomorrow.

But yesterday I ran a little, and it was splendid.