The thing about being tested is you can prepare all you want but the Universe probably has her own ideas about how things are going to roll.

You’ve probably gone through times like this. You probably have gone through even worse times, too, times where you had to re-learn to walk or rebuild your life or plod through a trial that seemed without end. You’ve had to struggle through years of symptoms without anyone figuring out your personal mystery and slogged through years where you lost more than you gained. You’ve lost love, found love, lost it again and found it again in the most unexpected places. You’ve felt alone when surrounded by people and fulfilled while completely alone. You’ve also spent a lot of time at home, sometimes even in bed, sometimes for days on end (or even longer). You get it when I talk about a shower like it’s the event of the year.

I know you have because I’ve spent the weekend reading about you. I’ve dived into your Insta head first, dropped by your blog, sent you a desperate message on Facebook or blew up your phone with a million book-length texts. I may have read your book, even! I’ve read a few MS’ers books this past month searching for inspiration, validation, illumination or desperation. Yes. Reading about your desperation helps me to put my own version into perspective so thanks for doing that, that whole pouring your soul out to the world on the page thing, because if you did that you helped me get my head back on a tiny bit straighter.

I had my last in-home PT session this past Friday and it freaked me out. I’m on my own again, you see, with my sheets of paper full of “exercises” that are really just teeny tiny movements that are often too much for my poorly adjusting body to execute. We worked on balance on Friday. Katie was really excited by how well I did. (I’m getting so much better at the sarcasm in writing thing.) I think she was just relieved to get out of the house before I started to cry again but she acted excited by my amazing balance. She walked out the door after giving me her personal cell phone number and a nice hug and reassurance that I am getting better and I will keep getting better even if it’s so subtle sometimes it’s not possible to see it using the naked eye let alone measure it in seconds, minutes, ounces or pounds. I missed her the minute she was gone but she’s just a text away?

I guess so.

This long winter of my discontent continues while my body spasms its way through days and nights, flashes of hope dashed by struggles that start before I’m even out of bed. MS has officially ruined one more thing I used to love, namely my bed. If I listen to my overwhelming fatigue and lay in the bed for longer than a normal 8-ish hour night my entire body rebels by cramping, spasming and jerking around in a painful manner and that’s when it moves at all because sometimes it won’t and that freaks me out almost as much. Maybe more?

Today when I woke up for the second time at 10:30AM (after feeding the kitties earlier around 6:30AM) I forced myself out of my warm cozy bed because the spasms were starting and would only get worse the longer I stayed there. I forced my stiff legs to the steps and down to the kitchen to try and console myself with coffee. I haven’t been drinking much coffee because I’m not usually up early enough for it to really work its way out of my system before I have to try to get to sleep again because holy mother of Jehovah, fatigue has never truly been defined for me before this Lemtrada recovery.  So, mornings are for coffee! I had coffee and it was morning. Hooray!

Kind of.

I plodded through 8 minutes on my mini-elliptical that felt like 8 hours. I got “dressed” which much like “exercise” is a word that probably doesn’t mean the same thing for me as it does for the rest of the world. For me, getting dressed is slowly, awkwardly shimmying out of my pajamas with extreme caution and squeezing myself into other clothing that actually looks like pajamas but is black and technically acceptable if I actually get a visitor or was forced to actually walk out the door (in the event of something dire like a fire or earthquake or to make a run to the ATM which was actually the biggest accomplishment of the day after those 8 minutes on the stepper).

The thing is, this is the thick of it.

These are the times that stretch our limits. Times like these make you re-evaluate everything you’ve ever thought about life, love, work, the pursuit of happiness and the state of humankind. Times like these make you want to rise above but somehow keep pulling you back in to a Monday that feels like Thursday because Thursday felt like Sunday and wait a minute, what day is today again? Times like this are the things you see other people go through and you think, “Wow I could never handle anything like that.” But then you are, even as you exist in complete denial of the reality that is staring you in the face every hour and every minute of every day.

Then smack you remember.

It’s Sunday. It’s supposed to snow later and you need some cash to get through the week of potentially having to pay people to do things for you like snow removal. You remember this isn’t a movie of someone’s pathetic descent into disability but it’s actually your real life, tomorrow is Monday and you need money so, yes, you can leave the house to get as far as your car (such a short distance it’s almost laughable) to get to the drive through ATM to get what you need for survival just like a real girl.

I even decided to brave the adventure without a rollator because it just felt like way too much effort to drag an actual machine with four wheels such a short distance and deal with the trunk and all of that hoo-ha just to walk maybe fifteen feet. I braved the distance with my trekking poles. Look at me go! Actually, I was really hoping there wouldn’t be anyone out there to look at me go because if someone spoke to me or made a noise that made me turn my head too quickly I could have gone down like a lump right in front of my own damn house. But there wasn’t anyone.  I got to the car, to the ATM, home again and back into the house without killing myself or any other life form.

These are the successes that are important to me these days. That’s just the way it is. Getting to the ATM. Giving myself a little pat on the back for my 458 steps today (stop laughing, that’s actually really good, I’m totally serious). Gearing up for trying to do it all over again tomorrow, grateful for every step I get to take that might be one or two more than I took the day before. Or something like that.

Is this the longest winter in the history of time? Asking for a friend.