I’ve had a really bad couple of days. I could feel it coming in the parts of me that hurt worse when a bad day is looming. I could see it coming on both my handy dandy barometer app and on the local television news weather forecast that showed lots and lots of rain. I knew it every time I went to climb my steps to pee that a few bad days might be in my future. I know what it feels like. I’ve tracked the seemingly random occurrences long enough to know they are anything but random. I can tell when it’s going to hit. Most of the time. Other times it hits right out of the blue! And it’s what I’ve come to refer to as instant hot mess, but this wasn’t that. I could feel this coming in my very bones.

Today sucked y’all.

By the time Katie my PT showed up for our 2PM appointment I could barely stand up. When we started talking about my physical state of affairs it started before I could stop it. I cried my damn eyes out. I know! I know this is OK and totally normal and all of that but I really don’t like it when it happens. I don’t like it when I can’t psych myself out of feeling like a pile of actual shit on a shingle. It happens far too often lately. I was kind of happy it happened when Katie was here and not when my mom arrived about an hour later because crying in front of my mom is not a good thing at all. Crying in front of people who care about me especially much usually ends up making me feel worse because I know how hard it is for them to see me that way and know that there’s not a single thing they can do to help make it better.

I learned this lesson about crying when I was suddenly a widow at 30 years old. Crying in front of people makes them feel bad which makes me feel worse. So, I stopped doing it. Easy peasy. Except for now, in an entirely different situation, I can’t seem to control it anymore. I cry like a goddamn spigot turned on full force at the drop of a damn hat. I cry like the water flowing from an open hydrant on a hot city day. I cry like the torrential downpour that’s been going on all day today in Pittsburgh where I live. I usually cry in front of strangers. Like that time in the infusion room when I was temporarily paralyzed and I completely lost my shit. And today with Katie. Katie actually said she thought the crying was the kind of therapy I needed today which turned out to be a good thing because my legs are only quasi-operational anyway so therapy of the physical sort was going to be difficult.

I’m almost three months post-Lemtrada and I’m really starting to lose it.

I know it’s probably normal. I know some people have a harder time than others with this recovery. I know I’m supposed to give myself time and space to heal. I know this treatment wasn’t about getting better in the short term, it is supposedly about keeping me from getting worse so I can claw my way back to some degree of normalcy. I know all of these things but knowing even one of these things isn’t making me feel any better. It’s just not.

Today? Today I feel sorry for myself. Today I am horrified that by trying to make myself better I have somehow accomplished making myself worse. On some days, a lot worse. I am barely able to keep up with my life in the outside world. I’m barely able to leave the damn house. And when I do leave it destroys me to the degree that I probably won’t be able to do it again for like another week. Or maybe longer. Today I am sick in my heart that my body is failing me. My good attitude is failing me even worse. My ability to be grateful and look on the bright side is almost completely gone on this day. I just want to lay in bed and cry but I know if I do that for too long it will make my body operate even worse and how does that help anything even a little bit? It doesn’t. That’s the simple answer. So I don’t do it.

Katie was right. I did need to just sob today so I did and I almost didn’t even care that I did it. I feel like I might just want to cry and cry and cry and never stop for maybe a week or a month or until enough time has passed that I have something new to cry about or until my body has run out of actual tears. I just want to stop fighting how bad I feel. I am worn out from fighting it.

I’m not even sure why I’m writing this right now. I know you’re all going to come out of the woodwork to send me love, good vibes, healing light and just positive energy. I’m not doing it to make you feel bad for me or to beg you to make me feel any better. I’m really not. I think I’m doing it so you realize that I’m not really inspirational at all right now. I’m a hot mess. I’m falling apart. I’m incapable of taking good advice or looking on the bright side. I’m pissed the fuck off, if I’m totally honest. I don’t want to be inspirational. I just want to be better. I want to go back to writing about my latest work drama or the idiot guy who broke my heart most recently or that awesome pair of shoes I just bought or…anything but this. I want to write about the cool place I just visited or that amazing eye makeup I created this morning or the great drive I just took with the top down. I want to write about watching paint dry and cleaning the lint out of my dryer or listening to grass growing. I want to write about how I remember that I used to love the rain and being alone (because I wasn’t always afraid before this).

I want to write about anything but this.

But this is what I have to write about and so I am doing it. Maybe I just need to be honest about this side of things. I might need to be honest about how much it sucks to be an independent woman who is no longer independent and happy go lucky girl who is no longer happy or lucky (or a girl…I’m officially an old woman). I might need to be honest about how much this sucks right now and I knew you’d get it and not tell me to buck up and not try to smooth it over or do anything at all. You’d just listen (or read? That’s probably more accurate). You’d get it and I could stop feeling like a fraud for a few minutes.

The real truth is I’m writing this because I have learned that the act of doing so, putting into words how freaking terrible this is, will help me to remember how to be grateful again because I will feel ashamed of myself for forgetting how to do that today. I’m writing this because the exercise of putting this mess into words is the only thing I can do to help myself. It’s probably the most selfish thing I could do, putting this horrible awful time into words that people who care about me will read.

I will reassure you now, though, that once it’s out there I will feel better. You don’t have to worry about me really. You just have to let me do it and not feel bad about how it might make you feel. You cannot win with me right now, so it’s probably not even worth trying. Just let me spew today and tomorrow we can pretend like none of this ever happened. I would really like that.

There’s a fine line between inspiration and desperation.  I’ve definitely stomped all over that line today. Thanks for letting me do it with you knowing it would somehow be OK. Maybe tomorrow will be better but I’m not making any promises just yet. Sometimes tomorrow isn’t any better. And you have to be OK anyway. That’s what sucks most of all.