Day three of my confinement. I’m beginning to lose what’s left of my mind.

This is my first actual lab-verified experience with having a UTI while also having MS. This experience is not pleasant but you guys who are both older and wiser than me in MS years have told me this. I knew what to expect and yet this infection experience is still such a mega mind-bender that it almost overshadows the actual physical symptoms that have been intensified by the presence of the bacterial infection in my body.

Believe me, those physical symptoms are nothing to sneeze at as I have been quite literally unable to move my legs. Walking is always tough but this past ten days or so it has been all but impossible. Going up steps? This often requires another human standing behind me to physically lift my legs on to each step one-by-one while I use what’s left of my leg muscles to lift me up one step, then repeating this process for each individual step until I make it to the second floor.

On the second floor I have most everything I need to get through the average day: a bathroom, a couple of gallons of distilled water for refilling my water bottle (thanks Jennie for the home delivery), my computer, few wide open spaces without things to hold on to, a second rollator just in case wall/furniture walking becomes impossible (it has), two iPhones in rotation on my bedside charger/speaker set up, some shelf-stable moderately healthy food that I can shove in my face when I get hungry, a giant ass TV, a bed that is quite comfortable for any reasonably normal person (but not for someone in intense amounts of pain for a large percentage of both waking and sleeping hours) and various Rx drugs and non-Rx drugs (those sometimes help with the mind-fuck aspect of my confinement but at other times without any discernible reason whatsoever can also make things a lot worse depending on…well, depending on nothing at all really, go figure).

Here’s why the mind-fuck aspect is so intense.

I’ve been coming back from Round 1 of Lemtrada so slowly and painfully it was often hard to see myself coming back at all but I was really starting to have some teeny tiny flashes of actual hope creep into my spotted brain. I was up to 20 minutes every other day on my seated elliptical machine (almost 2000 steps in a day!) and I was secretly making plans in my head for how would use those 2000 steps out there in the actual world. I was showering twice a week, when I felt like it (not always, though, because one of the best things MS has done for me is proving how being clean is 100% overrated almost 100% of the time). I was making it into the office a tiny bit more – when the actual stress related to the reason why I have an office, that would be my actual job, didn’t also render me unable to walk very far. Stress is the devil, as you who have this affliction already well know, and stressing over losing your income AND your associated health insurance is one of life’s bigger stressors but I push those completely reasonable fears to the back of my mind because I can’t even get my brain around what would happen next. Thanks MS, one more time, for helping me achieve even higher levels of denial than I had previously thought possible.

The actual point is that I could finally begin to see a time when I might have gotten into the office a few days a week for a few hours. I was planning how I would use those few hours a day in the real world interacting with real people and it made me feel almost happy. Well. It made me feel happy-adjacent and I was willing to settle for that. I was allowing myself to think about actual air travel and being physically present in actual offices other than my own! Imagine such audacious positive thinking! From me! The dogged realist-pessimist!

I know. I let it all go to my head a little.

Then some microscopic bacteria took up residence in my urinary tract and laid me out like the old lady cripple that I actually am and POOF! All of those happy thoughts about being a functioning member of corporate society went bye-bye, not to mention thoughts of spending time with actual other humans having anything that resembled non-work-related fun with those humans who aren’t willing to be present in my actual home. I was really riding high on the hope generated by almost 2,000 steps a day.

Now I’m fighting the very real threat of allowing myself to be consumed by the fear that comes with not being able to move my limbs enough to keep basic blood flow moving let alone the idea of moving them enough to get stronger or stay flexible. I physically can’t exercise. I am limited to the kind-of-healthy food I can eat on my second floor that doesn’t require refrigeration or much effort to make or assemble. My ability to pursue my best possible life with MS by eating right and moving my body is extremely limited by those microscopic bacteria in my urinary tract. Do you have any idea how many messages one human can see in a day on both regular media and social media around how just making better food choices and doing moderate exercise can cure me of my disease-related ills? I’ll tell you: a whole fucking lot.

While I’ve been unable to participate in the real world, I’ve been keeping up with humanity using the tools available to me: text messaging, phone calls, regular media and yes, that evil of all evils, social media.

Do you have any idea how many messages there are in the media (and from actual humans who claim to care about me) about how pathetic it is to cling to social media for some semblance of connection to the world? I’ll tell you (again): a whole fucking boat load.

Digital friendships can’t be real! Get your head right, BBAD. Look into the mirror of reality! Except for the fact that I’ve gotten some of the most helpful, loving and non-judgmental support from these so-called pretend digital friends during this, my time of confinement, than I’ve gotten from any other corner of my “real” life. That’s just true. Maybe it is true that being there for a friend is just plain easier for digital friends who can’t actually be there for a friend in any other way but I’m here to tell you that without this form of connection, entertainment and just plain interaction I’d be right fucked. I mean, more so than I actually am right now thanks to some errant microscopic bacteria. The people who will come through for you in times of need like this are far fewer (and likely to be the least obvious choices) than you would believe. I’m not saying anything that any member of this exclusive club we all the Chronic Illness Community won’t back me up on. We get support from the place we’d never expect and lack of support from the places we do. It’s just the way it works.

I should note, at this juncture, that when one has spent more than a few days being restricted by her own actual diseased body, one can come off to the average reader as less than grateful. I’m incredibly grateful. I really am. I’m grateful for so many things there are quite literally too many to count. Yet here’s another sad fact of life: feeling overwhelming gratitude for many things doesn’t limit one’s capacity to be straight up fucking pissed off for what one has lost. There is no amount of gratitude that can balance out that kind of anger. Or maybe there is and I’m failing at that too?

So, there you have it.

The only thing that has made me happy over the last three days of my confinement is the weather has been rainy and overcast for at least two of those days. When the weather is nice and the sun is shining, it makes me borderline insane when I am physically unable to even sit on my damn porch, let alone go for a drive in my convertible (two of the things I do have in my life that give me joy that I am incredibly grateful for). When I’m driving with the top down, I can almost forget that I can’t freaking walk. When I’m sitting on my porch on a sunny day before it gets too unbearably hot to enjoy it, I can almost not care that I can’t walk very far (and that I never really liked walking very far even when I could). It’s supposed to be sunny and 75 tomorrow. I’m already dreading being cooped up on the second floor of this house.

On the upside, I’m guessing I might get some stronger antibiotics from TGS once we get the results back from the labs he ordered for me last Friday. Maybe I’ll be on the mend and on my way to almost being able to walk 2,000 whole steps again before I know it. Maybe I’ll feel well enough tomorrow to bust out of this mess and sit on the damn porch for a while before the sun goes down.

Maybe?