I agonized over writing this post. See, I realize that I only a week or so ago published a post wherein I was feeling moderately optimistic and upbeat even about the great progress I’ve been making in my recovery. I agonized over that post, too, because it almost certainly falls into the category of thinking that I refer to as “loving my life out loud” and I try not to ever do this.

The reason why I never like to love my life out loud, let alone in writing, is because it’s historically been what I’ve done right before things fly to shit. I’m trying not to be that old realist, borderline pessimist, version of me but she’s been in control for quite a long time now and that bitch is relentless. But I want to be more of an optimist. I really do. I want to be happy and grateful and upbeat and in control of my destiny.

That kind of person probably wouldn’t give this situation the energy required to write a blog post about it,  but here we are. Oh. And while we’re here I should note that I might be a tad more negative than even I usually am because I’m irritated and my arm hurts (BADLY) and when I started to type this post I accidentally hit the wrong keys on my stupid MAC laptop with the idiotic keyboard before I hit “save” and I lost everything I had just painfully typed out.

Because that’s just the kind of thing that would happen in this situation, amiright? So what is this situation, exactly, you might be asking…

I’m not going to make you guess what the question is. That would be irritating and I’m already openly irritated enough so I’m just going to tell you what the question is and save us all some precious time. I am struggling with the age-old dilemma facing many progressive MS’ers wherein I find a question flying around my head, a question that I know has no real answer, specifically:

Am I just having a few bad days or is this what progression looks like?

Let me start by saying that I know you don’t know the answer because you can’t know. Much like none of my esteemed medical team can venture a guess nor will I frustrate myself further by sending yet another panicked email to The Great Scott when I know even he cannot help me. Nobody can. And it pisses me off.

I’ve had about four consecutive days wherein I find myself bellowing, “ WHAT THE ACTUAL FUCK” into the atmosphere at random times when shit just doesn’t want to work. I’m talking about shit like my legs (and my back and my hip flexors and my core) and did I mention my LEGS? Rest assured I only bellow these words into the air when my mom isn’t here because, 53-years-old or not, that woman would attempt to wash my mouth out with soap and in my current condition, she might actually be able to catch me to do it. Trust this.

It started Saturday. I woke up feeling weak and wonky. Legs not wanting to move very well. Tired from just washing my face and brushing my teeth. I told myself, “Don’t panic, self,” I said. “You had a tough workout on Friday that involved working your lower body to the point of exhaustion. This is just the typical day after situation. You’ll be fine.” I took it easy on myself. I didn’t stress. I thought a rest day was just what the doctor ordered and rest I did. I decided to push my weekend shower to Sunday, even, to accommodate this whole commitment to rest. Can you guess what happened next?

I’m not going to make you guess again because I’m sure you already know.

I woke up Sunday with a wonkier body, legs still quasi-operational and to make matters worse it was a beautiful 74 degree day in Pittsburgh and it practically begged me to at the very least go out and sit on the porch after my shower and by god, I would do that if it killed me! But see, my shower almost killed me first because once I was all clean and shaven and scrubbed and rinsed, my legs wouldn’t move much at all when I attempted to get myself from my shower to the rollator a few feet away where I could sit. The floor was slightly wet. My mom was there to make sure I didn’t actually go down but it wasn’t pretty. I just made it to the seat before my legs would have given out. I rested after that (again) while I got dressed at a leisurely pace and took my good old time drying my stupidly long pandemic hair. I moved slowly. The window was open and there was a lovely breeze. I got myself downstairs once I had clothing on and proceeded to go sit on the front porch and do NOTHING but sit. I did NOTHING BUT SIT.

But when I had sat long enough and it was a little chilly signaling time to go back inside I could barely make it back up the little threshold ramp to get me back inside. I resisted yelling WTF this time because my mom was holding the door. It wasn’t easy to resist.

Monday comes along…and legs are still not working well but I allowed myself to sleep in until like 1:30PM. It was OT day and I had every intention of doing my core and upper body workout with Lauren at 2:30PM but I got a disturbing phone call about an hour before she was set to arrive. My nephew was calling to tell me my mom had fallen. She was vacuuming her basement steps when she somehow lost her footing and fell backwards down a flight of stairs, landing on the concrete floor below. She was on her way to the hospital in an ambulance. She seemed OK – she was able to walk outside to the ambulance and was talking and acting fairly normal. But that was a huge fall and my mom is 80. I was instantly sick to my stomach. When Lauren walked in I was in tears and we decided not to exercise because I was obviously concerned and not in a good way physically.

I went ahead with PT with Aaron yesterday at 4PM after another restful day where I did next toi nothing but my legs were still wonky. We did my lower body work out and some less than successful balance work. My sister was on hand that evening to help me get dinner etc so she was here in the event that I couldn’t get myself into bed but I did it. It was ugly, but I did it. And today I again canceled my OT appointment and decided to stay in bed as long as I wanted to get yet more rest because I am still not moving well at all.

This pajama day didn’t really help at all, though. I can still barely stand up. My walking is atrocious. I had groceries delivered today and I needed help putting them away. I feel like shit. Haunted by the question, that unanswerable question, how can I have this many bad days in a row when I had been doing so well! It must be progression!

Is all of this work futile? Should I just say fuck it and give up on the idea that I can somehow get stronger if I just work hard enough at it? Is this what progression feels like or is this just a fluke? Yes, my mom getting hurt is stressful and incredibly upsetting but I was feeling like week old ass before she even had her fall.

I know there is no answer. I know I will keep working at this no matter what because I am not ready to give up just yet but four consecutive days with a body that won’t cooperate at all has given me some serious pause.

I don’t have PT again until Friday so I have yet another day to rest. I’m almost afraid to wake up to see how my legs will be operating tomorrow. A fifth bad day has to mean something, doesn’t it?

I think I’m sharing this here just to get it out, to be honest, because allowing these very bad, no-good thoughts to take over my brain isn’t helping anyone, most of all me. I know this by now. I know how this MS thing works. I shouldn’t let it win. Sometimes, though? Sometimes you just find yourself shrieking WHAT THE ACTUAL FUCK into the air and writing a painful blog post just to attempt to get yourself back in control.

At least I’m not getting my mouth washed out with soap on top of everything else.