Before anyone gets too excited, I use that image above ironically at best. I mean, I’m not laying in bed moaning or weeping but I’m also not out skipping in the meadows with butterflies. First of all, it’s November in Western Pennsylvania. It’s goddamn cold out there, people. Or so I’ve been told.

Second, I never expected to be skipping anywhere in the second week post-Lemtrada infusions. I expected a lot worse, to be frank, some of that might still be out there waiting to pounce.

I still can’t walk for love or money. I mean, you could offer me money to walk and I’d sure as hell try but I’d not get any richer. I’m still in the house, mostly in pajamas, sometimes not but wishing I was. I’m still drinking water, stumbling up the steps, peeing, sleeping, not panicking and repeating. But there has been a decidedly unforeseen positive coming out of this Lemtrada adventure that I would have wished for if I’d have known it was even possible and that is…wait for it…

I remembered how much I love being home alone with not a thing in the world to do.

This might seem like an odd thing to love. I get it. Most people dread the idea of being alone. Most people put a ton of energy into the process of figuring out how not to be home alone for any amount of time, let alone all of the time. A lot of people would look at this life I live and love and think, “Aww, poor sweet lonely BBAD! If only she had someone who loved her! If only she wasn’t so desperately alone!”

In my old life, before MS, those people who thought that way definitely existed but somehow in the mayhem since my diagnosis, I forgot all about that. Even before MS, I was somewhat of an oddball as it relates to the way I live my very happy life. People would try to invite me places where I might meet someone nice. Or inspire me to go out more obviously thinking I just hadn’t tried hard enough to couple myself up. “You have to put yourself out there!”

Shudder. I didn’t feel that way then. I was steadfast in my confidence that even though most people couldn’t really relate to my life without a plus one, it didn’t matter one iota to me. I realized somewhere around the age of 42 that this life that I have that felt thrust unfairly upon me when my husband died so many years ago, actually seemed to agree with me. It took a long time before I got there but there I was and it worked for me. I had a rich life full of interesting work, interesting acquaintances, devoted family and life long friends and as much (or as little) social interaction as I needed at any given time. I did what I wanted when I wanted. A lot of the time, what I wanted was to spend my time home. Alone.

Then I got diagnosed with MS. I started on some kind of hyper-lapse, downward luge ride to relapse after relapse from cane to rollator, from rollator to transport chair…from out and about to in and secluded. I was (and am still) really pissed off at anything that thinks it can tell me how I should live my life, including multiple sclerosis. Multiple sclerosis, like the rest of the world, was not the boss of me. I was the boss of me. Until I wasn’t. While I was just trying to get through one set of 24 hours after another without maiming myself or collapsing from exhaustion, multiple sclerosis popped in and became the boss of me. And that bitch was relentless and brutal. She brought a friend with her too! That friend is my sub-conscious and she exists to torture me. Her name is Bethy Dark.

Bethy Dark makes me second guess every single thing I do, think, see or feel for every hour I am conscious in a day and even sometimes in my dreams. She sneaked in and started making me even more tired by second guessing literally every choice I made: go to sleep (you’re lazy), go out with friends (you can barely stand up, you idiot), go to work meetings (you’re more of a spectacle than anything, why are you even doing this? you’re making people uncomfortable), stay home and rest (use it or lose it, BBAD, if you rest for too long you might be resting forever get off your lazy ass already), go take a walk (jesus BBAD, what’s the point? you can’t go far enough to make any difference), back to rest (omg I already told you use it or lose it, you asshole!). My subconscious is a judgemental bitch. Bethy Dark will support the hell out of YOU, but she’s pretty reliably awful to me.

Then I went to a week of infusions to kill my immune cells and put my body at a severe disadvantage. By the time I made it home after my infusion each day, even when hopped up on steroids, I had no other choice than to do what my body was telling me to do. I didn’t fight it. I had a firm discussion with my Bethy Dark the night after my first infusion day where I became quasi-paralyzed for way too many hours. I told her that this treatment is no joke so get on the self-care bus and fasten your seat belt. Do not even try  to get off. You literally cannot do anything else. There is no other option. Lemtrada is in charge. It is the boss of you. Just roll with it.

And I did.

Now I’m coming up on two weeks since my last infusion day ended and they’ve been two weird, long weeks. Some days I feel so bad that I briefly allow myself to go to Bethy Dark’s favorite place which is the land of self-doubt. Other days, I feel pretty OK. I mean, not running around taking showers and getting all dolled up, better. But better. Not terrible. I get up when I wake up naturally. I stay in bed when my body tells me to stay in bed. I move around (carefully) when I feel like doing that. I go to bed without feeling guilty about anything. I wake up feeling no pressure to achieve a single thing beyond doing what my body is telling me I need to do.I wear pajamas for days if I want to. I am allowing myself all the room I need to work through this kind of big thing I just did to my body.

As I get deeper into week 2 of this business, my subconscious is really trying her hardest to push herself back to the front position. Bethy Dark is no slouch. She knows all the tricks: It’s been too long, now, you need to try harder. It’s almost two weeks now, you lazy ass, at least try to leave the house. You showered like three times last week! What’s with this descent into hygiene hell? Get your shit together! Holy shit, BBAD, how long do you think this can go on? Try harder you loser!

I’m ignoring her. And as I actively do ignore her every minute of every day, I am realizing how much I don’t hate being home these last few weeks. It got really cold really fast here in Pittsburgh which is not shocking at all since we seem to have two seasons now: hellfire hot or arctic freeze. Nothing in between. It’s rained a few times. Even a few flurries. My house is comfortable, cozy and truly the only place I want to be. MS took this joy away from me temporarily. It made me hate the things I used to love because it made me feel like I was being forced into a life I didn’t choose. Maybe even a life I didn’t want.

MS ruined my happy place for me. It made me hate being home. Lemtrada is giving me that love back.

Well. I know it’s my dedication to not letting the dark side of me take over and not the drug at all, but the choice to try this treatment was a deliberate one. I chose this and I am committed to letting it play out. I will not sabotage myself this time. I won’t let it happen.

I’m not going to forget who I am anymore. I love being home. I loved it before and I love it still. I love being alone. I loved it before and I love it still. It turns out that I’m rather delightful company when I’m not being such an asshole to myself. I know there will be many days in the coming weeks while I am awaiting the regrowth of my cells where I will feel trapped in here. I know those days are coming but when they do, I’m going to come back here and read this post and remember who the hell I am. Again.

The post-Lemtrada madness has begun. I will be tested. It’s going to try to make me forget who the hell I am again.

Yesterday, I felt pretty OK. I actually left the house to make a desperately needed dispensary run. About ten minutes into my journey I was ready to be back home again. Outside world life, as it turns out, involves irritating things like other drivers (gah, people are terrible drivers), unseasonably cold weather and so many, many other people. People. Everywhere. Shivers.

I needed the magical capsules I buy at the dispensary that get me through a night without massive full-leg muscle spasms. It’s a new thing, post-Lemtrada these horrible leg spasm/cramp things. Some nights, I am awakened by my legs feeling as if they are being forcefully ejected from my hips after being made ramrod stiff from hip to toe but then they are stuck in that position for what feels like hours and is probably seconds. That isn’t fun. I needed my capsules. I was in and out of the dispensary without touching anything or anybody in about 15 minutes, then doused myself in hand-sanitizer immediately upon exiting the building.

Today I woke up with ram-rod stiff and cramped legs once again but this time it was 4AM (guess who got the magic capsules and promptly forgot to take one last night?). I woke up not because of the muscle spasms but the intense head ache that reminded me it was there once my legs would move again…that was what really woke me up. I’ve never had a headache like that in my life. I gingerly got myself down the stairs on spasmy legs to take my 800 mg of Motrin and prayed that it helped. I also took two Benadryl, per TGS’s instructions, which helped me go back to sleep. The kitties thought it was awesome being fed at 4:30AM. I hope they don’t think this is going to become a regular thing because…just no.

I don’t feel great today but I have been happily holed up inside all day, where no rogue germs can do me in. I had a visitor today! Jennie came by and we chatted, swapped books and talked about the joy of daytime pajamas, living alone and the end of daylight savings time. It was lovely.

I also did my nails yesterday in a lovely navy blue that happens to match my favorite fuzzy pj bottoms. Since nobody but Jennie and Alex has seen them, it might seem like a dumb thing to do but it makes me happy so I do it.

When Bethy Dark comes back to try to mess me up before this post-Lemtrada cell re-growth period business is over, I will come back to read this post and try really hard to remember who the hell I am. As many times as it takes. Then I will do my nails. Again. As many times as it takes.

Happy Thanksgiving, American BBADdies, and others who celebrate other things or who just happen to like turkey or elaborate, awkward family dinners. Tomorrow and every day I will have so many things to be thankful for – including all of you. Gobble gobble.