It’s not technically another two-month flush, but it feels like it is.

I went back into my own archives to remember what I’d written during the actual two-month flush between Tysabri and Ocrevus when I had to be DMD free for 60 days before starting the new drug. It’s kind of funny (not in the ha-ha way but in the other way) that it seems that I’m living my life on some kind of demented loop. You can read it for yourself here.

There are good things and bad things about writing this blog. The good thing is that it sometimes keeps me sane. Your comments, advice, support and overwhelming goodness have brought a sense of understanding to my experience with MS that I was beginning to fear I would never find. You, dear readers, gave that to me. Definitely a big upside. The downside is I am also painfully forced to acknowledge in very clear, distinct, excruciating and often funny detail that I’m living the definition of insanity. (Also, for those who care, it wasn’t Einstein who said those fateful words, but a fictional character in a mystery novel…or something, but interesting, right? )

But I digress.

It was the changing seasons that did me in again today. It was my front porch and the need to put away the spring things and put out the fall things, in this case my Halloween decorations that did me in (again). It’s funny. I followed the advice I’ve gotten over and over again to try and eliminate the things from my life that I expend energy on seemingly needlessly. I’m sure this exercise of porch-changing might seem like one of those very things, on the surface. After all, it will be Halloween in a couple of weeks and all of the little tchotchkes will need to be put away again, but I’ve also learned something about giving things up to make my life easier.

It doesn’t always make me happy.

In fact, this past spring when I wasn’t feeling all of the vim and vigor that springtime sends wafting through the air, I decided not to plant any annual flowers. It was just another one of those things, I told myself. I didn’t have it in me to do it alone. I didn’t want to have to ask someone to help me. And I reminded myself that if I didn’t plant the flowers then I wouldn’t need to stand outside in what would inevitably become hotter and hotter days to water said flowers. With the way I’d been feeling toward the end of last winter when Ocrevus turned out to NOT be the miracle drug I wanted it to be, watering the flowers would definitely be another thing I hated doing. Another thing to make me feel weak.

So I didn’t do it. I didn’t plant any flowers. It made me sad every time I walked by the front of my house over the last summer and saw my flower bed fill up with random ground cover and weeds. That weedy flower bed became a metaphor for my life now. Something that was supposed to look pretty and full of life was now full of weeds and bare dirt. It didn’t make me happy at all. Putting out the Halloween decorations became a thing for me this year because of my lack of spring flowers. I didn’t want to not do it because it would just become another example of something I used to do without thinking that I now could not do at all.

This year, my 78-year-old mother helped me.

I mean, this is both wonderful and incredibly upsetting at the same time. My mother has more ability and energy than I do and she literally gave birth to me, making her 27 years older than I am. We filled the wagon (again…I have a wagon and I love it…I’ve written about that wagon before too). I did the first trip with my mom but it was obvious how ridiculously bad my legs are today. After that first trip, she made the walk back and forth to the garage lugging the stuff in the wagon herself three more times. She threatened my life if I stood up but I did it anyway. I had to try to do what I could to help, no matter how pathetic it would be.

And that’s another thing that is repeating itself as my days between treatments get longer – I’m really not getting around all that well you guys. Not well at all.

I had a massage last week on Friday evening and Michael, my massage guy, noted that when his hands got below my knees on both legs my limbs turned cold to the touch. I understood why because lately I can feel them less and less. My feet are like useless cold lumps. My legs don’t want to lift off the ground or lift themselves up the stairs. I can hear myself shuffling around my house, dragging my feet and it’s not a sound I like to hear because I know it’s a sign that my legs are just not working that well at all.

I’ve been working really hard lately, but I’ve been doing it at home. Again, I feel compelled to state here for the record how grateful I am that I am able to work very hard at home in the first place and still be effective. But after an extra long day at the home office last week on Friday (and Thursday…and Wednesday if I’m honest), I almost lost an entire day to sleep yesterday. I hadn’t even left the damn house! Usually that kind of exhaustion hits me when I’ve been forced to leave the house and drag my useless carcass around in the outside world but this time it didn’t even take all that. I felt physically spent after a long day…at home. (Insert eye roll emoji here)

I’m trying to do the things I know I have to do while I’m stuck at home. I’m standing, stretching, doing what exercises I can and massaging the parts of me that feel extra spastic and cold, drinking plenty of water, not eating too much sugar AND not pushing myself to do more than I think I can physically manage. That has meant I’ve been spending a lot of time at home alone.

When the weather finally broke and it was suddenly not 90 degrees and humid anymore like it had been Monday through Wednesday last week, I told myself, “This is going to be awesome! This is my kind of weather! FINALLY!” And so it has been. It’s suddenly absolutely chilly out there. It was summer one day and late fall the next. I had my central air conditioning and my furnace both on within the very same week. That is highly unusual in these parts. I thought for sure when the air stayed within my ten degree range of personal comfort – between 45 and 55 degrees, if you’ve forgotten what that range is – I’d be all out in the world, embracing life with both arms moving all about sucking the marrow out of life.

Or not?

I slept until 4PM yesterday and still felt tired when I dragged my cold, dead-feeling limbs out of my bed. I forced myself to go out to lunch with my mom today just to prove that I actually could move myself from point A to point B without terrible tragedy befalling my person. My feet don’t feel like they are attached to my actual body but I made it to our favorite Chinese restaurant in one piece. I stumble-dragged myself there but I did it. The porch change-over was next, after lunch, but you already know I didn’t do much of that at all. My mom did all the work. I did some foot massaging and a few exercises today to help remind my body that it’s supposed to be able to move around but it does very little to help. I’m physically exhausted by going out to lunch.

If I showed you a screen shot of my Stepz app from the last two weeks you’d probably laugh right out loud.

I officially got my insurance denial in the mail yesterday that I was expecting since I knew I had to get that HIV test and have TGS’s office resubmit the right predetermination forms but it irritated me anyway to see it there in writing.

I’m tentatively scheduled for Round 1 of Lemtrada the week of November 5. I’m told that the infusion week won’t be all that hard because of the helpful dose of IV steroids I will also be getting but the weeks that follow will be hard. As the dead immune cells die off and are released from my body and my bone marrow replenishes and starts to produce new cells, my body is likely to feel a lot worse before it feels better. I’ve been told to expect aches in my legs like the worst flu you’ve ever had. I’ve been told there might be rashes and fatigue to make MS-related fatigue look like child’s play. I’m told this drug is no joke.

In the back of my mind you know I’m wondering how I will claw my way back from this. Physical therapy will re-start and it will likely be worse than it was when I started PT the first time. I will improve by teeny, tiny increments mostly invisible to the naked eye, marked by hundredths of seconds on a timer. I will have to work my way back ever-so-slowly to a better place, hopefully a place that has me more able to be out in the world living among other humans. Having done some version of this once in the last year while I’ve been feeling so downright bad, I’m not looking forward to it starting all over again. I never got better enough from PT to be out there doing any marrow sucking kind of living, but I could see myself improving. I guess that means it’s reasonable to expect that I can improve again and maybe keep getting better this time. Maybe this treatment will be the one that keeps me from backsliding permanently. It could be.

Lemtrada is a two-round treatmnt. Round one is five consecutive days. Round two is 3 consecutive days one year later. Occasionally, if patient continue to relapse and backslide, people do three rounds before it really takes (if it does…I also know people who’ve gone through Lemtrada and not had good results). All of this is a total crap shoot.

Then again, so is life. Life is a total crap shoot for you. For me. For all of us. I will continue to remind myself of this basic life truth while I revel in the knowledge that my pumpkins, witches and lanterns are in their proper place on the front porch where they should be. Thanks to my mom.