When I started to write this post, it went sideways. I wanted to be honest about the way I’m struggling, all the times I cried, how frustrated I am by my slow recovery and how much I miss my life in the Outside world but I quickly realized that I’ve written a version of that post almost every week since Round 1 of Lemtrada was complete on November 9, 2018.

I’m tired of writing that post. So I decided to take a look at the past few days through a different lens. Was I really being honest with myself? Was I really as miserable as it seemed or was there a different way to look at the things I did this weekend?

Why does the loss always seem to overwhelm the little victories?

I think this might be the ultimate lesson of my multiple sclerosis. I look at my life through the lens of what “healthy me” used to be able to do and not through the reality of how much I’ve lost since this journey began. It’s hard to see myself as anything less than what I once was, but don’t most people feel that way as they age? Don’t most 85 year old women walk around in the world outside feeling the same as they did when they were 25 in their heads, but find themselves “suddenly” in a body that is far less able? I’m sure it feels to them like a surprise too. I’m sure the losses of time feel much like the losses brought on by chronic illness.

These losses of my chronic illness happened over time, of course, so they often felt so gradual as to eventually appear surprising when I found myself struggling with basic tasks of living. Things like going up and down steps, getting myself dressed, moving about in my home (let alone in the Outside world), taking care of my feeding, hygiene and basic life maintenance – these things became impossible. Overwhelming. Just too much.

Then I chose to see what Lemtrada could do to help stop my downward spiral and found myself inexplicably worse than I’ve ever been before. Outside is too much. I can barely handle inside. Snow, which is falling outside as we speak, filled me with dread. Rollating in the snow? Forget it. Pajama days increased. Home days became the norm. Life seemed to have come to a screeching halt while I was sleeping off the chemical that wiped out my body in an attempt to allow it to rebuild itself but maybe better this time.

I instantly hear the opening credits to The Six Million Dollar Man in my head: Bethy Bright. An advertising executive. A woman barely alive. Gentlemen, we can rebuild her. We have the technology…Bethy Bright will be that woman. Better than she was before. Better. Stronger. Faster.

Better, stronger and faster than what? That should be the question.

Not better, stronger and faster than Old Me! No way. Old Me would kick New Me’s ass in an instant. Old Me is gone. She was gone even before I was diagnosed in December of 2015. I have to admit that to myself finally and I’m not sure it’s such a bad thing. I think Old Me makes every tiny step I take feel less than. Old Me is constantly judging New Me to be lesser: less important, less valuable, less worthy.

Old Me needs to finally be put to bed so I can start feeling proud of my tiny accomplishments because they are proof that I’m coming back. Those tiny accomplishments are the building blocks of what New Me will become. New Me is also 52 now, people. She is dealing with life changes right along side of MS changes. She’s resisting all of this with all of her might because the idea of becoming something new is scary. I want to be what I was! Yeh. And people in hell want a popsicle. It’s just not a good goal.

I knew going into this treatment that the come back would be slow. My aggressive disease would have it no other way. I knew in my heart that I’d be broken down to my most basic parts. I knew it! I just didn’t really know it the way I know it now.

So on to this weekend. With my new lens.

I did laundry this weekend all by myself. That giant blue bag is my clean laundry, nicely folded and ready to be carried up to my second floor. Of course, I didn’t do that part! No way I’m close to that big task quite yet but I did do three loads. I did sit while I did the various parts of the task…the sorting, the folding, so I’d be better able to handle climbing the stairs in between each step. I struggled on those steps. I really did. But I did them. And the laundry got done. By me.

In between laundry loads, I decided I was tired of my OPI Bubble Bath pale pink nails and was ready to go dark again for a spell. I did my own nails with dip powder and a clear shiny gel polish top coat. I’m getting really good at this whole doing my own nails thing. I mean, I could do that before too, but it didn’t feel as important when it was on the list of all of the many things I did to present a glamorous face to the world. Now that my routines have been stripped back to the most basic requirements (skin care, microbladed brows, all black wardrobe) having my nailS done gives me a weird kind of satisfaction. I did that. They look great. I don’t care if I’m the only one who sees them. Now, you see them too! See how that works?

I took a shower on Friday so I would have clean hair for a planned hair cut on Saturday, but my hair cut got canceled. That shower seemed like a waste of precious energy. But it was still good that I didn’t try to shower and do the laundry on the same day. Somehow my spoon management plan worked in my favor even with a last minute change of plans. I had energy to do my PT exercises and do the laundry. I still get completely wiped out by anything more than about 800 steps. But I did them. I did those steps and I did my nails and I did my laundry. There are two “ands” in there that I haven’t had in my life for months now. I thought ands would take longer to come back. They’re not the big ands yet. I’m still waiting on the day when I can type: I got dressed AND I left the house AND I spent a few hours in the office AND I made it home again without falling down.

Those ands will come eventually. I just have to believe it.

What did I do with my time this weekend after all of those ands? Well. I laid in my extremely comfy bed with my extremely needy and affectionate cats. We got a cozy new blanket that arrived just in time for what I am hoping is the last ten days of really cold winter weather forecasted in my town. We watched some Netflix. I read some books. In between doing those things I also scooped our own litter and fed the beasts all on my own.

Don’t get it twisted. These are not the ands that make me feel super accomplished. These ands aren’t all that impressive at all. But I couldn’t do them before. I needed more help. I started to worry that my days as an independent woman living alone might be numbered. I’m not sure right now that they aren’t, but those small ands are a good step in the right direction.

I don’t know who New Me is going to be yet. But I am going to try and give her a chance to find her place in the world. Old Me had almost 45 years to get her act straight. New Me deserves more than three to get her shit together. Until she does, I’m going to try to focus on the little victories a little more.

It’s MS Awareness Month.

Much like I felt last March, I am still rather tired of being so goddamned aware of my own MS. This year during MS Awareness Month I am going to try to remind myself that the little victories, the little ands, are important to be aware of. Maybe some day I’ll even remember to celebrate them. Until that time, I need to let the little ands count. I need to give them some room to breathe and feel good about themselves.

That is my pledge for this MS Awareness Month. Will you celebrate the little ands with me?