I’ve never been good at math.
I was a writing major in college. Even more, I was a creative writing major (with a minor in political science but who cares about that) and I was then and am now terrible at math. I can’t add numbers in my head. I can spin sensible words out of just about any old thing but math? Numbers? I’ve learned that’s what Excel is for. And that calculator app on my phone.
Here are the numbers that are currently important in my life.
I am currently in possession of exactly 4.6 white blood cells. Who knows? Since those labs were taken last Monday I might have 5.4 by now, but nobody will know for sure until my next monthly labs are drawn. I have 11 CD4 helper cells – sometimes called T-cells. A normal count in a person with a healthy immune system is anywhere between 500 and 1500. I have 11. Once again, though, who knows? I might have grown one or two more this week because my body had to be doing something pretty important to make me feel like such utter and complete shite.
It’s all the usual things, guys, nothing too exciting. Legs that are quasi-operational. Coordination and balance in the shitter. Weakness off the charts. I can’t keep waiting for it to pass. I have to try and live and participate in life while I’m in the middle of this biological whirlwind, so yes, I went into the office yesterday to get out of the house and to get some work done.
Yesterday my jaunt to the office was only a couple of hours. It might as well have been a couple of weeks. By the time I was walking to my car that happened to be parked on the street nearly right in front of my office building, I could barely move my legs. My best friend, co-worker and occasional co-pilot was critical to getting me safely to the car. It was bad. I probably shouldn’t have driven but I managed to get us both home in one piece.
The day didn’t start out bad, though. That’s what’s so confusing – the never knowing what’s coming next. I didn’t think my legs would be so bad when I walked out of the door to head to the office. They weren’t great, of course, but they were quasi-operational. I’ve been going to the office a couple of days a week not because there are things I can only do there – quite the contrary – I can do most of anything from my home. I keep telling myself that getting out, moving around, walking in places that are relatively safe and in controlled environments should be a good thing. That’s why I’ve been trying to go there. That turned out to be a really bad idea yesterday but I had no idea how bad of an idea it was until it was too late.
By the time I got home and got myself into my house (by some miracle) I had to climb the stairs to my second floor on my hands and knees. My legs – both of them – wouldn’t lift off the ground. The second floor was the best place for me to be where there was a bed, a book and a bathroom all on one floor. That might be the name of my memoir some day. “A Bed, A Book and a Bathroom,” by Bethybright. But I crawled to my second floor and stayed there until I woke up at 6AM to feed the kitties. I felt certain that today would be better. One really bad day is usually followed by a long rest and a not-too-bad day after due to the extra rest. I’m on vacation again before the holiday so I went back to bed and got even more rest. I was going to have a good day today. A quiet home day. A rest day. In my happy place.
I love to read. You guys already know that but you might not know how obsessed I am with books. I like the way they feel. I like the way they smell. I own an e-reader but it never took for me. I’m a book girl. I hope I’m always a book girl. I am surrounded by books in my home and I love re-reading books I’ve read before and passing along special books to friends to enjoy. When I do share a little piece of my library with another, I have this weird need for them to know, for always and forever, where that book came from so I had an embosser made to brand my books. Yes. I know. I’m weird but you also already knew that.
This morning (er, early afternoon who am I kidding) I decided to catch up on some new book embossing that had gotten away from me on my last couple of book hauls. I used Clara, my fancy Danish rollator, as a library cart and I toted books from the bookshelf in my living room to the coffee table where I would sit safely, in my home, and emboss some books.
All was going according to plan. I made several trips back and forth. I found little delights in my book pile that I’d forgotten about or hadn’t thought about in a while.
For instance, among my books on the shelf I found a dedication page from a former client that contained a message I really needed to see this morning.
This whole re-entry to the work thing whilst being severely under the weather has been tough for many reasons. Things change so fast in my business, dropping out for three weeks is like dropping out for three thousand years. I came back and had to remind people that I still exist. It felt…scary. It felt uncomfortable. I’m sure it wasn’t as bad as it felt to me but it felt bad, people. It felt really bad. Today, I opened the cover of a giant book sent to me by said client before things changed so much and before I was so…out of it…and it made me flat out cry. But in a good way not in the bad way I’ve been doing so much of lately. The book is called “Tools of Titans” and this is what my former client wrote inside:
Maybe I wasn’t paying much attention. Maybe my tears blurred my vision but on my next Clara cart trip back to the coffee table with more books to emboss, I must have got my slipper caught on the area rug in my living room, as I do, and I went flying. I fell into the wooden trunk coffee table, books went flying, a bottle of water went over and I crashed to the ground. I managed to prevent my face from hitting the wooden trunk but I fell sideways and banged my left forearm on the wood and tumbled to the ground. Right about here:
Gumby wasn’t much cushion for my fall but I managed to save my face from damage and yet I’m also certain there are some ugly bruises in my future. On the bright side, said bruises won’t likely be visible while clothed and I did manage to get myself up gingerly with the aid of various pieces of furniture. I didn’t even cry! Well, I didn’t cry over falling anyway. The fall is the + 1 in the equation above. The thing I didn’t need but happened anyway.
I thought by staying home I was safe. As it turns out, there is no place in the world right now where me and my ridiculous cell counts and inability to stay on my own two feet are not in extreme danger at any given moment. It’s just reality for me right now no matter how hard I try to deny it.
This is the part of the marathon where I want to quit. I have no energy left. I can’t do the tiniest of tasks without bashing myself on furniture and rolling around on the floor. It can happen at any given moment and happen it does. Whether it be dragging my legs to my car to drive myself home from a questionable trip to a germ-infested office or figuring out how to hoist myself up off the floor after doing an artful nose dive into a wooden trunk – something seems to happen to remind me that this marathon feels like 2,600 miles and not 26.whatever real marathons are supposed to be.
Then I get pinged with a text. I’m supposed to be in a meeting someone forgot to invite me to (yeh, that’s super awesome…omg now do people understand why I never take time off? This business is brutal). I quickly dialed into the conference line, did my work thang and made some progress. I have a presentation deck to prep that is due on January 4 so I have some work to do over this ‘vacation’ and I like it that way. Maybe I’ll stop worrying about people forgetting to invite me to my own meetings?
Anyway, this Lemtrada journey is not for the weak that is for sure. I’m being pushed to my limits and the only support I’m getting from The Great Scott and crew is another script for more physical therapy that I would love to take advantage of but I’m wondering where it will be safe for me to do said therapy until my cell counts get a bit higher? Who knows?
All I know is, marathons suck. The reason most long distance runners look like they’re about to die while they are in the midst of a particularly long run is because marathons suck. (Ok, Ok…I know it’s not that simple…people love running! They just rarely look like they really love it while they’re actually doing it. Give a bruised gimp a break).
It will be OK. It will all be OK. I am reminding you of this almost as much as I’m trying to get myself to believe it. I’m running one hell of an ugly marathon and things like this are to be expected. I will get through this because I have to. In the meantime, I’ve had some amazing nice holiday surprises delivered from a very special reader. I’ve made plans for home visits this week with three actual friends in town for the holidays none of whom mind being sprayed with Lysol when they enter my home. Look at me! Being festive!
It will all be OK.
Vikki Thornton
December 19, 2018 12:51 pmSweet Bethy…you are a inspiration…your courage and unending determination are very encouraging!! I have a friend with M.S. that is also a inspiration. I myself have been sick for going on two years, and have not received a official diagnosis. I know some of having your body going crazy and symptomatic in all kinds of ways, the frustration and emotional drain of not only the illness but the unknown as well. So I just want to thank you for your sharing and being very candid with your obstacles and emotions of your delima through your battle. I recently obtained a treadmill that I have began walking on to help my body and regain some strength. I know it may sound crazy to some…but as I walk I pray…for not really myself but others and my friend is one of my peeps…she has days her legs decide not to cooperate, so as I walk, I pray for her legs to gain strength with mine. I hope you dont find it to strange, but I am gonna add a sticky with your name as well to my treadmill. I hope that you may find a solice in knowing someone, (as another with many others I am sure), is praying and sending request of blessings for you. I am actually very thankful that I stumbled across your Facebook sharings!!! Like I said you encourage us to not succumb our attitude and will to whatever battle we are fighting in our own life and even sometimes bodies. You sweet lady are Awesome and very much a Blessing to the world!!! Much Love 😍
bethnigro0212@gmail.com
December 19, 2018 2:57 pmVikki I am so lucky to have a sticky on your treadmill. I am sincerely touched. Your kind words are so amazing. You don’t sound crazy to me at all. And believe me, I know crazy. 😉 sending you much love! 💕
Jennifer Perkins
December 19, 2018 2:46 pmOh Bethie sorry to hear about your fall. 😓
bethnigro0212@gmail.com
December 19, 2018 2:58 pmThanks Jennie. All in all it wasn’t too terrible of a fall. I’m almost getting good at it. At least I’ve learned how to protect my face! 😬
Candace
December 20, 2018 10:19 amHi there I was diagnosed in 2015 and it has been a miserable road. I finally had to quit the job that I loved at the hospital because I was to sick and weak. I just want anyone struggling with this ms monster to look up lions mane mushroom extract. I heard about it at a health food store and gave it a try it has helped me a lot with my weakness and fatigue. I’m still off balance and have foot drop its not a miracle but it has helped me a lot. I didn’t realize it was helping so much until I stopped taking it and all my weakness and fatigue slowly started coming back. I’m not saying it’s a miracle or that it will help everyone but if it can help anyone to not feel so terrible it’s worth a try.
bethnigro0212@gmail.com
December 20, 2018 11:11 amCandace we’re diagnosis sisters! It’s been a miserable road for me too. I will look into the supplement you suggest. I’m in the boat of trying just about anything to feel better. Haha I’m sending you big love and support. 💕