The Darkest Places (So Far)

In other words, when you get a diagnosis of multiple sclerosis that you weren’t expecting late-ish in life and let those words sink in, you understand viscerally that this is definitely not a good development. Things are about to change from top to bottom and every where in between. You pretty much get that from the very beginning (for me, early December 2015). You have to tell people who love you, first. Those are dark days indeed.

As you read and do some early research and find some voices you rely on for reliable information you feel yourself wanting to be hopeful, wanting all of those voices to be true. The voices of the Societies and Foundations and all the rest. This whole MS thing will be bad for a good long while, but it WILL get better. You will find your legs (bad choice of words or the perfect set of words. Depends on how you look at it). Just believe it. Hang in there. MS doesn’t have you!

The lazy writer in me wants to use the eye roll emoji in this post at this particular juncture. You get on that “MS doesn’t have me bus” and you listen to friends tell you stories about their friends (or friends of friends sister’s aunt twice removed) and she runs marathons with MS. Surely you can do that too! Chin up, buttercup. Better days are on the way.

And I do know there are better days on the way. Currently, better days are in speedy delivery mode as I choked down the most bitter giant 10 chalky tablets of prednisone ever made this evening after a command performance today with The Great Scott.

When TGS calls you and says be here at 1:40PM well…you put on your best black yoga pants/tank top combination. You have 75 identical versions of each so it’s a complex decision making process. You run your lint roller over your freshly laundered daily uniform because with four felines running around, and over, every surface of every item in my home that I’ve not left all that much in the last 6 or so weeks, you can’t be too careful. You don’t want TGS thinking you’re that cat lady (even though you are much much worse than that cat lady…he doesn’t need to know that). You pop an antivert and you get your growing behind off the couch to see the wizard.

And that is exactly what I did.

The Great One himself had two new students, Kyle and another Samir but not the same Samir from the last time. This Samir had some shiny and very voluminous black hair styled in a casual, not-over-done hipster doctor pompadour. It was really something. I’m a hair girl! I can’t help it. Kyle didn’t have a chance. I was covetous of Samir’s hair. Samir’s hair should have an Instagram account because MS’ers all over would follow him.

When Samir was doing my visual fields test and I had to stare at his fingertip and at his nose over and over again, I kept finding myself staring at his hair and he would say, “Down here, Maribeth” and I definitely blushed.

But I digress. After we went through the whole visual field song and dance again, twice, with each student, TGS talks to all of us as if we’re buddies. I think I’m officially one of them, now, based purely on the volume of times I’ve had to be in there in the last 6 months. He asked Kyle what we learn from the visual field test (the whole follow my finger, look at my nose routine). It was almost like TGS knew I was about to blurt out the answer and he look at me and silently shook his head ever so subtly, “Don’t.” (So I didn’t.)

Poor Kyle whiffed on both of his quiz questions. The other one was, “Can you tell me what other drugs beyond meclazine we sometimes use to manage vertigo caused by brain lesions Kyle?” I knew! I’ve been a vertigo researching fool these past 6 weeks or so. I KNOW THIS ONE TOO…I got the look again. I kept my mouth shut, again.

TGS is not pleased that his students appear to be dullards on this subject. Kyle actually stuttered. Poor Kyle.

“Sometimes we use benzos for this reason and we’re going to try that here to help Maribeth out. Also, Maribeth, this drug may kill two birds with one stone because I’m putting you on another course of high dose steroids starting today,” deadpanned The Most Great of all Scotts.

NOOOOOOoooooooooooooooOOOOOOOoooooooo!

“Ugh.” I actually said this. “Isn’t there any other option? I mean MORE steroids? I’m kind of tired of the steroid effect TGS. I just am. I know that makes me a shallow asshole but there has to be another option.”

“Well, there’s plasma replacement blah-blahtity-blah but that is an in-patient experience, is not likely to work and is really a terrible idea so we can probably agree not to go there, can’t we? You have an aggressive disease. A lot more aggressive than we thought. You like being aggressive in treatment, right? We need to give you a chance. This should help you over this hump until your next Ocrevus infusion in early November. I’m still hopeful this drug is going to be right for you, Maribeth. But you do have me re-thinking the two month flush for patients like you. I may be changing my mind on the necessity of things getting this bad before they get better.”

He has a point. I’m nothing if not aggressive.

I do the walking tests. He continues to be concerned that I am back to pre-Tysabri levels of impairment (old symptoms have come back with a vengeance). Couple that with the vertigo that just won’t quit and he’s pretty sure I can cancel my appointment with the Hearing & Balance Center. (I’m kind of bummed. I was planning to go in costume since it’s kind of close to Halloween. I was going to dress up as a crazy old woman with a broken brain who’s lost her damn mind.) So, no Halloween fun for BethyBright. Boo.

I look down. I know I am beaten. He’s not called The Great Scott for nothing. I’ll take the fucking steroids.

Here’s the thing. I know some of you get this because you have been there. Hell. You might be there right now. You know what I mean. It’s a period of time so bad that weird shit starts to happen to you inside of your broken brain. You have thoughts that people like you just don’t usually have. You think to yourself, as you consider these random scary thoughts, “Huh. I don’t normally think things like this.” That’s another concerning relapse-associated “symptom” that the docs don’t talk much about.

You find yourself mildly afraid to leave the house. The outside world starts to represent potential injury and/or embarrassment or both, so you find yourself not wanting to go out there. At all. Ever. But staying in here? That’s another story entirely.

Staying in here is where it’s relatively safe (at least you can puke in private?). But staying in here sends a girl down some dark rabbit holes…

  • What did I do to deserve this? What am I being punished for? (I have some ideas, but I thought I was over all of that. Guess I’m not.)
  • Why do I live in this house that means I need help to do the most basic stuff? Why do I deserve to live in this happy place with so much freaking STUFF? I should give away all of this cursed stuff. We’re all under the same evil eye, my stuff and me. It should go, too. It’s cursed. I am cursed. We should all GO.
  • Why do I have so many damn cats? Why do they need so so much? I should never have been optimistic enough to get all of these needy, bitchy creatures. I should have known it would all go to shit! It usually does. Literally. Then I’ll need even MORE help to carry that shit out of the damn cursed house.
  • Why would anyone want to talk to me now? This utter nightmare is the ONLY thing I ever think about, let alone talk about. When I talk about it to my visitors, those kind enough to come to me for human contact, I find myself on my own damn nerves. There just isn’t a way to sugar coat any of this. I know if the tables were turned I’d leave your house feeling sadder than sad because we used to have so many other, more pleasant things to talk about. Now I have this. Only. This.
  • I’m alone. I rely on the graciousness of others. This is my reality. I am blessed (#blessed – few things irritate me more than #blessed I’m not entirely sure why but every time I see it, it sounds ironic to me). I have so many friends, family and buddies who help me in so many ways because they love me. Hell. They even help me by just giving me tiny little happy surprises! Like the card last week that I needed at just the right moment. But really how long can any of this last? People WILL get sick of me not getting better. It’s just inevitable. I’m so needy that there isn’t any realistic number of humans on the planet to fulfill all of my damn needs. It’s just not physically possible. I mean I am with me all of the time and I’m sick of me not getting better. What happens when I get worse? Or when I get MUCH worse…I can’t really think about that for very long or I go to darker places still.
  • Are there darker places than this? Oh I know there are. I have a feeling I might visit them before this is all over

I may have seriously entertained not taking the damn steroids. I definitely considered it, I may have come close to skipping my stop at the pharmacy. I’m so tired of all of the stupid side effects of fucking steroids! Why do I have to have a disease that makes me LOOK bad too. Why couldn’t I get a disease that makes you look scarily thin? Trust me. I know. These are idiotic, stupid pointedly indulgent obnoxious thoughts. I thought these idiotic thoughts the whole way home from seeing TGS.

Then I thought about how I had a virtual anxiety attack over leaving my house today. I have never had a true anxiety problem in my life. Other problems, sure, but not anxiety. And how doing basic chores has me so exhausted that I think my entire life is going to feel this way. For all time. Forever and ever until I just give up and stop, stop doing all the things let it all go to shit and just sleep. Because I am alone I am and will always be…This, my therapy loving friends is what my precious Cheryl would call “catastrophic thinking.”

Then it hit me. Out of the blue in full-on pedal to the medal on my way to Catastrophy USA, I finally got my head straight. Like BOOM.

The disease is talking right now. Not me. The disease is talking stupid because it wants to win. Its only reason to exist is to ruin me. It wants me to be depressed, full of newfound anxiety, falling apart at the seams. It wants me to hate on this body it wants to feed on because it makes the whole process so much easier, more easily digestible. Like tenderizing meat before you cook it. Those are NOT my thoughts.

When I feel better, my thoughts will be my thoughts again.

I took the damn first dose of bitter pills. They won’t be my last. I need to accept this and I have. I’ll eat sensibly and try not to go on an ice cream binge (prednisone needs no assistance in achieving maximum bloat) but I will have a couple of spoonfuls every now and then if it will give me some much needed joy.

It gets really dark in this world. Scary thoughts can kick you right in the gut and have you questioning your sanity. Your fundamental worth. Then you get to that point where you start to realize that maybe a nice gentle marinade would be ever so much more appealing on the meat than all of that beating it with a spiky metal mallet has been.

(I know at least one of my blog followers read that last paragraph and giggled thinking, “She said beat the meat! Hee Hee.” You know who you are!)

I’m going to marinade in some prednisone and some calming benzos and let this thing ride. Cliches are a thing because most of a time, they have more than a little nugget of truth inside.

And you know when they say it’s always the darkest.

Relapse: the Post Script

The thing is it doesn’t really matter how fed up I am. When you go through something like this last relapse, you tell yourself that it’s a minor set back. It’s just a hiccup. It can’t last forever! But then 6 weeks go by and you’re still feeling it and you start to think maybe it will indeed last forever.

There’s a lot of waiting involved when one has multiple sclerosis, particularly if one is young in their MS. Like me. I’m about 21 MS months old. I’m practically a MS baby but I’ve had my share of waiting in those 21 months.

First I waited to get approved for Tysabri. Then I got approved and I was waiting for the 6th or 7th infusion when I was told I’d feel better…and didn’t. Then I went through the 2-month flush before starting ocrevus, two months of feeling like such utter excrement, I could barely get myself out of bed. But once again, I got through it by telling myself that this amazing new drug would be the one that gets me back on the road to feeling more like myself again, but the thing is, it didn’t. I had about a month of feeling suddenly energetic and it felt awesome. Then, out of nowhere, I had a relapse two and a half months after my first Ocrevus infusion. I landed in the hospital for four days. Then I was waiting again, entirely focused on when I could get out and get back home so I could feel better. Then I got home, finally. But the feeling better part didn’t really happen.

I mean, it did. It did get better but when “better” just means occasionally throwing up as opposed to every time I ingested food and feeling like I’m drunk only 75% of the time versus 90% of the time but you could argue (and you would be correct) that I am better than I was. But better, better? Nah.

I’m back to waiting for the next great hope. That would be November. I find myself looking forward to November when I get my second full dose of Ocrevus hoping that maybe that will be the magical dose that helps me feel better once more…But the little voice in the back of my brain whispers, “Then again it might not…”

This disease requires a long game that I have never developed. To have this disease you have to be OK with your entire life being turned upside down over and over again, with more promises of “better” that come and go without the relief you were told would be coming.

So you focus on the next milepost. The next thing that might get your “overly active” disease under control for the first time since this whole crazy ride started so you can maybe not get back to “normal” (normal is probably never to be again) but maybe establish some new normal where this disease doesn’t affect every part of my every breath of my every second of every day. I have the experienced MS-er friends. They, who are much older in MS years than I, assure me that this is coming. I believe them! But sometimes it just makes me feel stupid for believing in fairy tales.

I did make it back to work last week. I made it to the office two days in a row. It felt awesome to finally leave my house but I’d be a liar if I didn’t admit that it was hard as hell. I practically had to force myself out the front door. I don’t look like myself. I forgot how to wear real clothes. Putting on makeup (which I usually enjoy) felt like putting on a disguise, someone impersonating the old me, not me at all.

I was so very happy to be out there, I really was, but I was also scared to death. What if I’d used all of my good hours in those days getting myself out of the house and into the office? What if I ran out of good hours before I’d make it home again? What if I had to use one of my handy portable puke bags but this time not in the privacy of my own home but in public among people who look to me for leadership? I’m supposed to be inspiring, the inspiring leader of the office! I was afraid for every minute of every hour I was outside of my home. Who have I become?

I’m back home now for a week of rest taking a long-ago scheduled week of vacation because I think I obviously need more rest. Ya know what gets tiring after a while? So…Much…Rest. Rest is wearing me out. Resting a faulty body that never feels rested no matter how many hours I’ve been able to stay unconscious, though I know it’s the best and only thing I can do, it feels anything but restful.

Nobody is pressuring me. Everyone, from my peers to my team to my colleagues and bosses is being as supporting as you would expect them to be in a situation like this. The one person who isn’t cooperating is probably me. I have higher expectations for myself. I’ve not allowed myself to believe that THIS life is my new life. This is just one of those waiting periods, another thing that I need to deal with, wait out or get beyond. I tell myself that I love my quieter, slower life but much like anything else I’ve had imposed on me, I might like it but I don’t really want it. I only like being quiet and slow when I’m doing it on my own terms. These are decidedly not my own terms. I’m not sure who’s terms I’m working with but MS and its terms are not acceptable to me.

I struggle with the whole phases of grief thing. I remember it well from when I went through this after my husband died almost 20 years ago. It used to frustrate the hell out of me to realize, as I was going through it, that those phases didn’t happen in a nice, planned, consecutive order. They happen all at once. All at the same time, sometimes completely out of order. When you think it’s over, those phases start happening again all willy nilly. Once you’ve experienced grief, you know that nothing about grief is at all tidy. You cannot control it. You just have to let it do its thing and wait.

People will tell you that you will be able to see the other side when you’re grieving but you really can’t. When it has moved on and you have a new life, it’s almost like a surprise. When did that happen? You really can’t put your finger on it. Once it happens, you wonder how you never noticed it as it took over. The feeling of seeing grief in your rear view mirror is more shocking than that. It’s like an old childhood friend who suddenly moves away. You’re sad because you’ve spent so much time together that it started to feel comfortable, but you guys were never really very good friends. You know you won’t miss your friend, grief, not as much as you thought you would, but then again, it will never really be gone. You will always feel it. Lingering on the edges of your life that is mostly happy it will be back there to remind you that it could all go away. Poof. Just like it did once before.

There is a silver lining to all of this. It’s a pretty obvious one, really. The silver lining is that I’ve done this before. I can do it again. I thought I’d never get any sort of normal life back after the one I had went POOF, but I did. I actually made a life that I really started to love. I just have to do it again!

We all have these transitions that we go through all through our lives where we are suddenly forced to acknowledge that having plans, being focused on anything but the moments, is really kind of a lie. “Nothing gold can stay.” Ponyboy Curtis taught me this when I was a pre-teen.* It might not be gold, anymore, but you learn to get great joy from silver and bronze. Sometimes you even get some platinum here and there. My slow, strange life might change or it might not. It might just one day feel like it should. Real. Until then, there’s always November.

Also, it’s not hot anymore. I can’t even believe I’m saying this but I almost turned my furnace on tonight! I thought better of it. But I almost did. It’s gorgeous sleeping weather. I better get to it.

 

  • “Nothing gold can stay” is an iconic line from one of my favorite childhood books, The Outsiders by S.E. Hinton who was referring to a poem by Robert Frost in 1923:

Nature’s first green is gold,
Her hardest hue to hold.
Her early leaf’s a flower;
But only so an hour.
Then leaf subsides to leaf,
So Eden sank to grief,
So dawn goes down to day
Nothing gold can stay.

-Robert Frost

 

 

When everyone else seems to be drinking lemonade.

I’m a member of many Facebook groups dedicated to the transition to the new goo, Ocrevus, because I was looking for any information at all from any source at all about what to expect from the very, very new disease modifyer.

Protocol seemed to be all over the place. Some people were forced to do the 60-day flush (like me), others were told to start the new goo immediately without a wash out.

Initially most of the posts were about what to expect during the infusion. I guess because I had been on Tysabri for 15 months before the transition, I wasn’t all that concerned about the infusion experience itself. I knew to expect it to take longer. I knew I would get Benedryl and Solumedrol prior to the new goo. I was fully prepared for the experience. I trust my infusion nurses. I was looking forward to seeing them, really.

What I was jonesing for in my social media trolling, were stories of how people felt after getting their first full dose. I was dying for any reason at all to feel optimistic. I needed to believe I could eventually feel better, that these persisting and worsening symptoms I was experiencing since the two month flush began would eventually get better. I wanted to believe, very badly, that I would get better. I’d heard stories. I’d heard people say they felt better almost immediately. I wanted to hear more of those stories and get an idea of what was really possible related to the very mysterious new goo that nobody seems to know very much about.

The two month flush was not a good thing for me. I got to the point where I was before I started any treatment at all. I could barely walk. I wanted to sleep 24 hours a day. The heat paralyzed me. After taking a bit of a nose dive that felt very relapse-like, The Great Scott put me on a three-day course of high-dose Prednisone. That was after my second 1/2 dose of the new goo. I was starting to panic. I really needed to feel better and I just kept feeling worse. I swallowed those bitter (literally) pills by the handful with joy because I was that desperate to feel better.

The Facebook groups that I joined to get information from other patients started to have the opposite of my intended effect, though.

In short, they really started to piss me off. Post after post of “I can walk again!” Post after post of people writing about regaining use of formerly useless limbs. Some no longer using previously necessary walking aids. Their hands and feet were no longer numb. Their vision was coming back in their eye they had trouble with for years.

People were feeling fan-freaking-tastic all over the internet and I’m over here taking a slow, infuriating nose dive into becoming a hermit who can’t walk more than a block because of the incredible weakness in my lower body.

I have new symptoms I didn’t even have before! I have trouble lifting my legs now. It used to be only my right leg, but then it was also my left. Putting on underwear, shoes and pants required sitting or holding on to something with one hand. My problem with my legs isn’t the mechanism of walking (this is kind of complicated) but I don’t have the feeling I used to have of my legs not knowing what to do when my brain told them to walk. Ampyra really helps me with that problem. It still does. My new problem is overwhelming weakness. My legs feel like they could go out from under me at any minute. I walk more like a drunk than I used to before the two month flush. I find myself holding on to walls, telephone poles and random strangers. I’ve finally opened my mind to the idea of getting a cane. It’s that bad.

The most noticeable new/old symptom I’m experiencing is pain – overwhelming pain in my back that makes me feel like I can’t stand up for longer than 10 minutes. I never thought Tysabri did much for me, but it must have been doing more than I thought because I haven’t had pain like this in a very long time. It’s what makes me need to lay down in the middle of sheet changing. It’s what makes standing up and socializing at a party virtually impossible. It’s what makes Ibuprofen qualify as one of my major food groups.

The steroids made me feel better for about ten minutes but then left behind their usual pleasantries – moon face, apple belly and camel hump. Yeah. You read that right. In my research about how long my post-steroid uglies might last, I found out that Prednisone at very high doses not only makes your face look like a giant pie, but it also contributes to the redistribution of fat in your body (hence the “apple” belly and camel hump at the top of your back).

I mean. If you know me in real life, you already know about my obsession with my hump. I could talk about it here, but suffice to say it’s a form of insanity resulting from a life-long posture problem and a collarbone not quite set properly from a childhood accident that leaves me with a sort of hump-like thing at the top of my back behind my neck. Most people who know me will tell you they think I’m insane. They will tell you they can’t see my hump. They are liars.

You might also already know that having a quasi-flat stomach was kind of my only feature I could generally embrace. I’m a hippy Italian woman. I have always been “thick” as the kids call it. But thanks to never having giving birth, and some good luck, I never really had a gut. I never had wash-board abs or anything even close, don’t get it twisted, but my entire wardrobe is built around not having a giant belly. That wardrobe is rather useless right now.

You might be laughing at the irony of how these particular side-effects would be so terribly bothersome for me. I’m eating vegetables and drinking water and doing all the things they say you should do…to no avail. I still have all three…the Prednisone trifecta of things to make me more miserable. The damn steroids didn’t even make me feel better long enough to make any of this even close to worth it.

I would tell you these things no longer matter to the newly not-vain me, but they do. I still hate that I can’t just throw on clothes and feel OK without thinking about it all that much. I still hate that my face looks like a puffy, giant, squirrel with cheeks full of nuts.

I really hate that my other more valid and important symptoms do not appear to be getting any better. Newly Nice Nurse Carol advised patience. She taught me about cytokines and what happens when you kill a lot of B cells in your body all at once (that would be a whole lot of inflammation). She advised me not to lose hope when I’m not immediately feeling all miraculously cured. She and TGS both believe if I give this time, this drug will help me.

I want them to be right. But patience is not my best quality either. Reading about so many people who feel so much better almost immediately almost makes me angry. It makes the following words swim around in my brain at the most inopportune times…

“What is wrong with me? Why can’t it work for me, too?”

I’m not giving up on the big O. I’m not throwing in the towel and accepting drunk walking as my new normal just yet. But damn. A little relief somewhere would be most welcome about now. I want to be one of those miracle post-ers! I don’t want to be mad at them. I want to share in their glee. I want to BE one of them.

This is to say that all of this just leaves me feeling like a bad person who can’t muster joy in her heart for others who are doing better than me. It makes me feel like I’m the only MS’er out here who has been given lemons but has not figured out just yet how to make the damn MS lemonade.

I’m more like sucking on lemons and feeling the heart burn and making funny puckery looks with my moon face all the while trying to hold my life together in some tiny semblance of what it used to be.

I think I’m starting to understand why people of faith benefit from their belief. It gives them something to hold on to when there’s not much left in this world to grasp. It gives them a way to keep believing in good and not giving in to their baser instincts. I am not a person of much faith. I guess life has shown me a few too many things that have led me to question the whole “benevolent master ruler who keeps us safe and happy” thing. But anymore, I get it. I find myself asking someone, (I’m not sure who, the universe maybe? The great goddess in the sky? The hippie Jesus I learned about in Catholic school in the 70’s?), I find myself asking something, anything, whatever it is, to give me the strength to not be discouraged by the good fortune of others. I find myself asking it to help me look at my moon face and say “You’re ok, kid, it was only a face. It’s not who you are. It never was.”

Don’t get me wrong. I know I am nowhere near as bad off as many of my fellow MS’ers. I still have so many things to be grateful for. I still haven’t had to have any discussions about catheters or wheel chairs and this in and of itself is evidence of how grateful I should be feeling. I still have a job that I’m still pretty good at!

I will be grateful. I will figure it out, eventually. I will remember how to make lemonade. Then maybe I will invite you to my chilly house to drink some, mixed with some raspberry vodka, to celebrate my discovery.

My new quest, my new thing to learn, is that life is not a competition. Having a chronic, degenerative disease is not a thing you can win. I might not see it, but we’re all dealing with something and you can bet it’s not something super fun. Being someone with a generally invisible disease, I should know this better than most. How could I have forgotten?

This good things that some of my fellow MS’ers are experiencing and posting all over Facebook about might be the first good things they’ve had in 20 or 30 years! I can see my silver lining immediately. I wasn’t diagnosed when I was young. I have done a lot. I’ve lived a lot and seen a lot before this hideous mystery took up residence in my central nervous system. I can still walk! Maybe it looks funny, but I can do it.

I’m only a year and a half old in MS-years. I’ve got a long road ahead of me. I better find that lemonade recipe fast. Anyone have Beyonce’s number?

 

Another day…another missive from The Great Scott

Last time, on bethybrightanddark.com, we found our heroine in some distress.

After a two month flush without meds, and the long awaited first dose of the new goo (aka Ocrevus), Bethybright was getting darker by the day. Body parts had stopped working as they should work. Pain was a constant companion. There’d been shaky legs, heavy legs and legs that didn’t really work like legs. There was some serious relapsing going on up in there at a terrible time for our heroine.

After another round of high-dose prednisone, with a face the size of the man on the moon, our heroine had one of the single worst days of her professional career on a day that should have been one of her best.

Poor Bethybright. She found herself dangling at the end of a very thin, very frayed rope and about to give up and let go (into bed, but that sentence felt more dramatic without that part).

In her anguish and professional shame, late at night while she lay in bed, Bethybright penned a lengthy email to The Great and Powerful Scott begging him for direction.

Dear TGS:

How could I keep getting worse? Was something terribly wrong? Did I need more steroids but what about my poor face and the fact that they didn’t really work last week? Is it time for me to give in and get a cane? See, calling on friends to walk you from the parking garage to your office and back again is somewhat impractical even when you have fantastic friends. Did I need a fallback plan until this new goo, which I’m starting to lose faith in, starts to kick in? I can’t just stay home until I can walk again, right? HELP ME TGS! HELP!

Signed,

BethyDesperatelyDark and Getting Darker

 

I waited for two days. Nothing. I called and left an irritated message. Nothing. I uttered the unspeakable words to my precious (aka Cheryl my therapist), “I feel like I need to start thinking about a new doctor.” And we both blanched and shook our heads violently, no, anything but that. Once you get to The Great Scott you don’t break up with HIM. You just don’t. It’s because of him that I got to be one of the first patients to get the new goo. He’s the man. He’s one of two men, really, but the other one is at UMPC and I can’t go there in-network, so TGS is the only man for me if I don’t want to go bankrupt. I knew I wasn’t ready to walk away. I began to hate him for it.

Three days later he called me. THREE DAYS.

“Maribeth, it’s Dr. Scott. Well, Maribeth, you fell off my to-do list last night and you are probably very irritated with me. I’m about to leave for a three week vacation, it’s a bit hectic here, but I want to get you settled before I leave. Please call Lisa in my office, she can talk you through some options. I apologize for my tardy response.”

He called me at like 9am, of course I missed the damn call. I was neck deep in conference calls at that time. But at my first break, I called Lisa and Lisa wins the prize for the most helpful member of the TGS team of not-so-great support staff. She was wonderful actually.

He gave me some options. He offered more steroids (I took a hard pass…not worth it, not even close to worth it). He said he’s gotten some anecdotal feedback that some patients who’ve slipped into relapse while on the two-month-flush have taken a little longer to start to see benefits from the new goo, but he still thinks it’s going to work for me.

He said he would support whatever I wanted to do. Steroids. Or wait it out. I decided to wait it out. But while I’m waiting, he’s sending me a scrip for physical therapy. This way, a therapist can help me determine if a walking aid would be helpful for me for the especially bad days.

I just said I might be getting a walking aid.

We’re not going to get into the fact that I just admitted for the first time that I need help walking on really bad days. It’s not a walking problem really – Ampyra helps my legs get the signals they need for walking almost properly. The challenge with my legs is that they are so weak that they threaten to go out from under me at any given, random moment. Part of the reason why the damn party was so incredibly hard for me was this issue with my ability to stay on my feet. It’s not so great right now.

But hey. If it’s going to take a while for the new goo to work it’s magic, a temporary cane is OK with me. It’s much more OK with me than rolling around on Sixth Avenue while attempting to walk into my office. That I am decidedly not OK with.

We’ll see. If I get a cane, I’m going to give it a name. I will know what it is when I see him. I already know it’s going to be a he.

I almost hate to say this, because it changes by the day, but I think I might be feeling a little bit better today. Ever. So. Slightly.

How do I know this, you ask? Well, I took a shower and didn’t feel like I was about to perish halfway through shaving my second useless leg. I’m also finding steps not quite so daunting today. I’m thinking about changing the sheets on my bed! If I have to lay down halfway through that chore, we will know I am full of crap and I don’t feel better at all. But at least I feel like TRYING.

Trying to try is a thing. I keep remembering that. I have to keep trying to try.

On our next episode, our heroine will attempt to make it into the office and do actual work in said office instead of in her living room. News at eleven.

Relapse: Part Deaux

If this keeps up, I’m gonna need a bigger nightstand.
He called me. He actually called me himself. He didn’t sic Evil Nurse Carol on me, The Great Scott all powerful and good called me back his very own self. 

I explained more about my situation. The intense pain. The inability to stand for very long (like less than ten minutes). The weird numbness in my hands. My fatigue hasn’t been bad at all and my walking wasn’t terrible (thanks Ampyra) but I was so weak I could hardly stand so that kind of prevented any distance walking right there. 

He listened intently. He explained his point of view, bestowed on me from on high, as he is wont to do. He believes I’m experiencing a relapse. He thinks the two month flush was the thing that allowed it to happen on top of the fact that we both thought Tysabri wasn’t really doing all that much for me over the course of 15 months I’d been taking it. Then he explained that the Ocrevus can’t be to blame, rather it was probably benefitting my fatigue levels a bit (he’s heard this anecdotally from the infusion nurses who report on patient response to the new goo). 

“Well, Maribeth,” TGS said to me in the dulcet tones of the expert, “I had hoped to avoid this but you keep giving me new challenges so I think we’re going to give you a little hit of steroids to help cut this relapse short. You’ve done well on them in the past. We need to get you feeling a bit better don’t we?”

I really give TGS a bad rap. He’s really quite wonderful when he’s not arguing with me and my well-researched points of view. 

I’m on low dose steroids (50 mg once a day for ten days). This means stomache drugs to ease the side effects of the Prednisone and a sleeping pill to make sure I’m not up 24 hours a day. My nightstand medical drawer runneth over but if this gets me through my eventful next week of work, it will be worth it. 

It will be worth the bloated face and swollen feet and hands. It will be worth torturing my liver for a little longer. After all, didn’t we just learn that I have a crazy healthy liver thanks to that awesome Hepatitus B scare? Why yes! Yes we did. My liver can take it. 

I’m praying this little boost juices me up enough to get through two big days next week. Client dinner on Wednesday night with visiting dignitaries. All day office festivities on Thursday culminating in the official Grand Opening open house at the new and improved Moxie Pittsburgh offices. I’m not even being remotely sarcastic when I tell you I’m really looking forward to both! I honestly wasn’t sure how I was going to pull it off with the shape I’ve been in lately. I might have been able to fake one day, but both was an exercise in magical thinking even for me, the High Preistus of Magical Thinking. 

I’m hoping Vitamin P doesn’t let me down. I know so many people who hate being out on the steroids. I personally wish I could take them all the time. I’d get used to having a giant fat face and swollen body parts, I really would. Just to not be in pain for a little while and to be able to function almost like I used to is reason enough to put up with a little bloaty mcbloat face. I’m losing my death grip on vanity, it would seem. 

And who am I kidding? I can’t come close to anything near what I used to do. That ship has sailed, thanks to my busted central nervous system. But I can come close to being enough. Enough to feel happy and confident that I did a good job. I guess I never realized before how important that is to me. I guess I just took it for granted. 

So, if I do anything terribly inappropriate at the big office party I can always blame it on roid rage. If Vitamin P isn’t enough to hold me up and I take a fantastic tumble or have to sit all night, I can blame that on my stupid disease but I’m really hoping to feel well enough to actually have fun. 

Remember that? Having fun? I used to be pretty good at that. I hope I remember how. 

I think the thing about The Great Scott that I love the most is how he always manages to give me that other thing I seem to run out of a lot lately. 

That would be the most elusive drug of all. The one that doesn’t fit in my nightstand. Hope. He gives me hope. That’s what makes him truly great in my book. 

Drunk Texting, MS Edition

Names have been eliminated to protect the innocent. And the not-so-innocent.

Another shit body day. Pain everywhere. Legs whack.

Before I went to bed last night, I sent a lengthy email to The Great Scott (TGS) inquiring about this whole thing we call a “relapse” and telling him I think I’m actually having one. New symptoms that last longer than 24 hours? Check.

As soon as I hit send I got that same feeling I used to get after finally giving in and sending the text to the boy I shouldn’t be texting after a few too many glasses of wine. I’m referring to that nearly instant desire to somehow physically enter the internets or the airwaves and pull those words back. No sooner did I hit “send” on my email, I felt this horrible regret. Like I just admitted something embarrassing by admitting that my body isn’t working properly. Maybe he will wait a day or two to respond, just like the recipients of drunk texts of yore, just to leave me hanging in angst for a few more hours. I anticipate his answer being the usual “Well, Maribeth, that’s just your MS suck it up buttercup.”

Well. He wouldn’t say it quite like that but his dry tone and sardonic twinge will feel like he just said that. Truth is, I really like The Great Scott. I feel lucky to be in his care. He is the great and powerful, of course, and somehow the universe delivered me into his care. The universe knew I needed this neurologist, one who would be willing to listen to my endless arguments about science and his lifelong specialty and not just dismiss me. He argues with me.

Ask anyone who knows me. I need to look at every topic (good or bad) from every angle. Maybe it’s the writer in me, this obsession with motives and reasons but whatever the reason, there it is. TGS has lively discussion with me even when he vehemently disagrees with me.

I also worry, though, that he just wants me to shut up and accept things. I know evil nurse Carol certainly does. I know I’m projecting. I know they probably never think about me at all until my name appears in the list of unread messages and one or the other or both look at it and sigh and think to themselves, “Jesus. She’s still trying to understand the un-understandable” before typing a polite (TGS) or a terse (evil nurse Carol) reply. I know this is their job and I’m kind of like their client. I sometimes shudder when I get certain emails at work. I know how they feel.

I just don’t know if they can possibly understand what it feels like to go to bed so many nights in a row (at least a week) wishing and hoping and yearning to wake up and feel not quite as bad as the day before. I’m not even asking for feeling good like I felt before all of this shit hit the fan. I just want the regular bad. Like the pre-two-month-flush level of bad. I’d take that.

Now I lay me down to sleep, I pray the universe my pain to keep. If I should fall when I get up to pee, I pray the universe sends someone to help me (who doesn’t care about my mismatched pajamas).

That’s not how that prayer goes. But it’s what I got right now. I wish TGS and Evil Nurse Carol (suddenly she deserves capitalization to me for some reason) could know how much I want to help them understand what this is like each night. And how it feels to wake up another day with numb hands, weak legs and a back that feels like it’s on fire knowing that the universe has said “sorry sunshine, this is what you get” yet again.

It’s so much like the drunk texting the wrong boy feeling that it’s almost uncanny. That feeling of, oh shit! I shouldn’t have done that. Now he knows I care. Now he knows I’m not strong and mighty and over the whole thing, especially over HIM.

NOW HE KNOWS.

And I’ll be on those same pins and needles tomorrow checking my email with numb hands waiting for the boy’s response.

Or will it be from Her. That’s kind of like old times too.

Maybe I have unrealistic expectations

The stairs of death and the sorting chair.
It always comes down to this. The most basic things are my undoing. But when I thought about it more, I am starting to realize something that is probably painfully obvious to everyone but me.

And that is the simple fact that this might be as good as it gets. I keep hoping to somehow feel better. But maybe this is feeling better! Maybe this is it.

I remember when I first went on Tysabri and The Great Scott explained to me that it might help me to feel a little better but it could take up to 6 months before I noticed anything. He told me that disease modifying drugs (DMTs for those in the know) are primarily intended to keep your disease from progressing, not to undo existing symptoms.

Even knowing that fact full well, with every passing month after that 6th infusion I got more frustrated. It wasn’t helping me. Other people in the infusion room got 20-22 “good” days a month. I got no good days a month. It was frustrating but I hung in there. I knew I only had a year of safely taking Tysabri because of my JC positive status. I was on month 15 when Ocrevus was beginning to get a lot of buzz.

TGS told me he thought I’d be a good candidate for the new goo, as he called it. He said it might help me feel a bit better but more importantly it might help stop the progression of my symptoms that seem to have just kept getting worse and worse as time went by. I know I have relapsing/remitting MS on paper but I’m telling you here and now, if I’ve ever had a remittance, I sure as hell didn’t notice it. Each passing week there were new and ever more frustrating symptoms. My walking got worse and worse. I finally started the walking drug – and that helps, but it only helps. It doesn’t fix me. It merely makes me able to walk very short distances. I was all about jumping on the new goo bandwagon.  Hope is another drug I can’t resist.

That’s the thing about us early diagnosis people…you can’t quite give in to thinking that this is what it’s going to be like now. You can’t quite stop waiting for the miracle that’s going to mean this whole hideous experience was just a bad and very long dream. You grasp at straws.

So I went off Tysabri for the famous, more like infamous, two month flush. I felt horrible. I barely left my house for two months. I could barely muster the energy to get through 3 or 4 hours a day completely conscious. I managed to work. I managed to get into the office every now and then  but it was ugly. I felt horrible.

The thought starting sneaking into my broken brain…maybe it had been working all along. If this is what I feel like without it, it had to be helping more than I believed. I just didn’t know how bad things could get. I wouldn’t allow myself to go there. I had to believe it wasn’t working and my struggle was all Tysabri’s fault and not the fault of my broken central nervous system. I had to believe that because the alternative wasn’t palatable to me.

I pinned my hopes on the new goo. When I got approved for Ocrevus I did a little happy dance. So it made me more likely to get cancer. So what? I would be less likely to get PML and that’s nearly always deadly so…winning! I can look for cancer. I can prevent it or treat it. That was much more appealing to me than a deadly brain virus. Sign me up.

I had a few really great days after my first infusion where I got the first half dose. I did then and I do now chalk this up to the hit of Solumedrol they give you with the Ocrevus. It wore off and I kind of went back to before (I couldn’t let myself call it normal…I can’t accept this as normal yet). This time, though, I had some lingering post-two-month-flush things going on, things like terrible back pain, weakness in my thighs and really bad headaches the kind I’ve never had before in my life. I might have felt a little less fatigued but not much. I focused my hopes on the second 1/2 dose. I mean, how much could a 1/2 dose really do?

I made myself feel better. I allowed myself to believe there was hope to get back to “normal” by focusing on the magic that would happen after my second half dose. I had a crazy busy work week and I made it through somehow so that’s a good sign, right?

Well, you probably know already what I’m going to tell you. I had my second dose on May 23. It’s almost a week later and I’m here to tell you that it’s been a tough week. I’m struggling. I remembered I took the week after Memorial Day off from work on Tuesday morning after Memorial Day and I was beyond relieved. I didn’t feel strong enough to shower AND go into work. I knew it was going to be a day of “or’s.”

My legs are still weak as hell. I’m actually having pretty severe balance issues, which is new for me. The headaches continue. I’m not feeling great. I keep trying to pretend I do then I do something that should be easy, like taking a shower or changing the sheets on my bed, and I have to hold on to the bed or the walls of the shower because I’m trying not to give in and simply go down because the pain in my lower back is so sharp I feel like I’m being cut in half.

There are a few things I need to do this weekend before I go back to work on Monday.  Changing the sheets was one and that almost did me in. I did what I’ve been doing during the two month flush – I laid on the bed for half an hour after I finished and waited for the pain to go away. The kitties have come to really love this tradition. They walk all over me purring and head butting and being generally lovable but that really only helps a little. I feel pathetic. I had the thought I have so frequently lately, “This has to get better at some point. It HAS to get better.”

The other tasks on my list are just as boring. Laundry, because when I’ve run out of pajama bottoms that I haven’t accidentally peed through at some point or other during the last several weeks, it’s time to do laundry. First I had to sort. My back was throbbing so I realized quickly that I had to sit. Hence the chair you see above. I sat in front of my giant laundry tub and I sorted. It reminded me of how I put my clean pillow cases on – while seated on the bed. It’s what I have to do. For now, is what goes through my head as soon as I type those words, but is it really only for now? Or am I being delusional?

I know there will likely be four trips up and down the stairs while I switch loads, carrying laundry up and back down, you know the laundry drill. You probably do it without even thinking. You are probably annoyed by it but it’s nothing more than that, an annoyance. I feel like I’m doing a triathlon. FOR NOW, I think again.

But is it?

Maybe the new goo is only capable of doing so much. Maybe this is it and I should stop thinking about for now and start figuring out how to accept this reality. I need a chair to sort laundry. I need to sit while putting pillows in pillow cases. My pain is almost constant and also makes me feel very tired. This is just what it’s like now. Things like this will happen to all of us as we get older, it’s inevitable. We will all slow down. Age isn’t really avoidable. I’m just getting it all at once. It isn’t like losing a limb. It just makes little things big things and fast things impossible. It is what it is!

The other things on my list for today – grocery shopping, pet store and a shower – those will wait until tomorrow. They will have to. I’m tired of thinking of a time when “this” isn’t going to be like this. It’s probably not going to change and I need to accept it. It could be so much worse! I have happiness in my life, in spite of it. It probably looks nothing like your vision of happiness or even my own vision of happiness from two years or so ago, before my diagnosis. But I’m not unhappy. I’m just annoyed.

So I think my new quest, since I always seem to need to have a quest, is to figure out how to stop waiting and hoping to feel better. My new quest is to adjust my thinking (again).

I need to stop being disappointed when the pain comes, or when I have to sit down, or when I can’t do things I wanted to do. It is what is is. We all have our things to deal with in life. This is mine. This is my latest, I should say. There will likely be others to come cause hey, I have a chronic disease! That’s chronic degenerative disease life, man, it only gets worse.

The real truth is that I won’t be able to stop hoping. I know myself too well. But I am hoping that I do better at not beating myself up for my failings. I need to stop feeling like I’m failing because I’m not getting better. Maybe I will get better! Maybe that day WILL come. But until it does, I have to just live and stop waiting to live.

I have joined a few Ocrevus support groups today on Facebook that have already been helpful. It helps to hear about others and their experiences with this brand new drug because so little is known about how or when or if it works. Just knowing that I’m not the only one who is on the new goo who isn’t feeling all better yet makes me feel better. Just knowing that there are others who are waiting, waiting, waiting to feel better and getting frustrated that it hasn’t magically kicked in just yet. Reading one woman’s comment about waiting it out, not expecting miracles after one dose made me feel better. It might mean nothing, but it made me feel better.

I’m going to cultivate patience and peace. If it doesn’t get better, I will learn how to be this new me and not be miserable. I know I will. Because I have to. This new life is different, so different than what I expected to be living right now, but it isn’t terrible.

Gotta go now and switch loads. It’s almost bedtime and I need clean jammies. Clean jammies and clean sheets. See? Life isn’t bad. Life is just different.

Meet my little friend

These things are supposed to be good luck, right? *shivers*
My post-Ocrevus experience continues this week in the days leading up to my next half dose on May 23 and I have to tell you, it’s been full of interesting little experiences.

I started out feeling pretty fantastic. I feel I should thank my good friend and reliable juice, Solumedrol. It makes some people feel like they’re possessed of a devil. It makes me feel like Wonder Woman. Go figure.

After that wore off, I was still feeling better than I had been during the infamous two-month flush so I talked myself into the value of trying to get back to something close to my “normal” routine. Mind you, I meant my normal post-MS-post-two-month-flush normal but still. I made it into work pretty well last week. I had kind of a slow and sleep filled weekend but I expected that after two days of playing a Normal in Real Advertising Life.

I knew I had to prepare both mentally and physically for The Great Office Move of 2017 where myself and my team will move to some pretty swank new office space, a few blocks away from our existing office. We’ve had such an amazing couple of years that we outgrew our existing space. Yay, us! We can talk another time about the irony surrounding the fact that two of the worst years I’ve had in my personal life have somehow resulted in two of the most successful years in my long (almost 30 year) career in advertising.

How does that even happen? Clearly, I have no idea.

This week, I raised the stakes on my return to normal. I made it to the office on Monday AND Tuesday before 10:30AM. I have been a whirling dervish of activity. Packing. Dealing with client emergencies. Packing some more. Attending big important meetings by phone. More packing. More functioning as a Normal Ad Executive would function. More packing. Repeat.

Today was especially full. I burned through the charge on both of my cell phones because I was on one or the other of them all damn day. I got a lot done, for sure, but at 6PM I still had three things on my “before end of day on Tuesday” commitments that needed to be done. And remembered I somehow ran out of dry cat food this morning. What kind of self-respecting crazy old cat lady runs out of cat food with every damn home delivery service known to humankind at her fingertips!

I almost can’t even.

So I take my last call of the day from the parking lot at my local Petco. I realize that I desperately have to pee (and for any of my fellow MS’ers out there you know that when you have to go, you really have to go). I walk awkwardly into Petco because I have to pee and because it’s hot. Also I’m tired and I forgot to take my second dose of Ampyra today. But I walk slow and pray the lady dam doesn’t let loose on the way.

I wheel my cart to the back of the store where the Petco has it’s rest rooms. I lurch into the handi-stall because I have the world’s largest backpack since I now have to carry all of my items on my back for ultimate balance and it sometimes sticks out far enough to make closing the bathroom door problematic. I hang my backpack on the hook, barely get my undies down (thank god I’m wearing a dress) when the stream flows like the mighty rapids of Ohiopyle flowing from my very person. At least I assume that is a fast-running river as think I remember being told by several outdoorsy people, of course, because I would never go rafting.

I’m looking down at the floor thinking how I might not stop peeing before the store closes and I STILL have three things to do “before end of day” and it’s now 6:20PM and that’s when I notice him. That guy! The one in the picture up there. He’s staring at me from between my Adidas cap toes.

Then I notice that the floor is moving. The floor shouldn’t be moving but it is because a previous customer in a damn hurry dropped an entire box of crickets on the bathroom floor. The box that contained said insects was on the floor thus setting its contents free. Previously doomed to be reptile food or something, these happy recently freed crickets were scampering all over the floor, willy nilly, trying to escape their cruel fate. Running their tiny cricket legs over my cap toes. RUNNING. ALL OVER THE BATHROOM AND MY FEET.

At this auspicious moment a friend’s voice came to me, in my mind, he came to me and said these words of warning: “You best get your white ass up and out the door of this bathroom. You’re gonna have crickets in your drawlls, sure as your sitting there taking the world’s longest leisurely lady squat.” (I don’t have to name this friend. You will know who I refer to because he’s famous like that.)

I wildly shook out my drawlls, gathered my belongings, hastily washed my hands and fled that horrible room flooded with tiny fleeing vermin to get my damn cat food and go the hell home.

By the time I got home, I realized I could barely walk.

My body had that “alive in my mind but dead in my limbs” feeling I’ve come to know so well after a long day of Provigil fueled speed thinking. I’d hit the wall. There would be stair crawling in my future. I could get the giant backpack and my Petco bags in the house, I could feed the cats. But I knew there wasn’t much more in me and I had downstairs litter AND upstairs litter to deal with. And three more things to do before end of damn day.

Crawling up and down stairs it would be!

This is all to say that even when I feel quasi-OK, and I fully intend to give my new-normal routine my well-intentioned all, I still have MS. I still run out of steam. The whole “mind over matter” thing only works for so long until the broken central nervous system says, “Um, nope” and your limbs just stop physically working as limbs should work. Possibly while being set upon by vicious crickets.

The silver lining here is obvious. I no longer have a fear of being attacked in close quarters by creepy crawly tiny critters who threaten to take up residence in my under trousers.

I also know I like feeling a little bit better. I like at least trying to try. I did a lot this week and yes, I realize that it’s only Tuesday but I did a LOT this week. This means a couple of new things in my new life…

  1. I will be working from home tomorrow. I know it’s not ideal. It’s move week. There will be visitors in from offices near and far to assist in the moving effort but I won’t be there in my physical form. I can’t do it. There. I said it. The world didn’t end.
  2. I will also be cranking down the central air in the Aspinwall office of Moxie, since it is supposed to be a balmy 90 degrees tomorrow with much sun. Since I can barely walk as it is, walking through the outside atmosphere, that to me feels like quick sand, is definitely not a good idea.
  3. It’s going to be OK. The world won’t end if it takes me a little longer to get back to my version of normal. I might never get back to my version of normal and for today, that feels OK. I can’t promise I will see it quite the same way tomorrow, but that’s just the way MS life is.

I learn slow. But I learn. I fully expect to have a cricket filled nightmare tonight. That might be the thing that actually does me in.

Greetings from the Inside

The view from the inside on a prettier day.

Here’s some news.

On what is usually my favorite day ever, that would be hair day, I experienced the first bleach disaster I’ve ever had while in a professional’s chair. My hair was flying off of my head like feathers in the wind. I could see it coming off on the blue towel I was using after my hair was washed and rinsed. Not good. Not good at all. Even my hair stylist was almost speechless.

I reviewed every medication I’m taking (no connection). Did research on autoimmune disorders and hair issues (no connection). We did nothing different than we do at every other hair appointment for the last three years! It’s like a goddamn mystery.

I guess it’s a good thing I like my hair short? I guess it’s a really good thing I like my hair really short. I’m going to be really sad if this is the end of my platinum blonde phase. I know my magician of a hair girl will not let that happen. But that whole thing was traumatic for both of us. I hope we both can get over it.

I purchased an industrial sized bottle of Olaplex #2, the stronger kind that they use in the salon, and I’ve been dousing my head in it since this morning when I woke up and realized my hair was still falling out. I plan to reapply all night and tomorrow until I shower for pre-infusion preparation.

Infusion is Monday morning at 8am sharp.

I have to eat breakfast, pack a lunch, drink tons of water and maybe bring a blanket. I’ll be there most of the day. My friend Michele is driving me and picking me up because I’m getting Benadryl first to avoid any infusion reactions. Another friend from the infusion room had his first infusion last week and he said he felt like shit after and pretty much slept all day (probably from the Benadryl). I’m hoping to be back to closer to normal by Tuesday, but Wednesday is probably more likely.

I also found out that I need an MRI to establish a new baseline based on my JC virus status. I thought this new drug wasn’t a risk for PML but I guess they’re being better safe than sorry since it’s so new and they probably have no real data to say whether or not it’s actually safer for me or not.

I’ve been sleeping a lot this weekend. After a client meeting and a disastrous hair day yesterday I felt like the walking dead by the time I got home from the salon. I went straight to bed. I read some and surfed social media some. But I also slept a whole lot. It felt good. The weather has turned cooler again (like the universe knows I can’t bear the heat on top of everything else right now).

I feel like I’ve dropped out of life in the outside world for the last ten days or so. I guess that’s because I mostly have.

Maybe it takes dropping out of your life for a spell to actually make you want to live it again. There’s some logic to it. Dropping out of your life makes you miss things. Like people. And clothes and outside and driving with the top down. It makes you feel disconnected from the things that make you you so you find yourself wondering who you are now.

I’m starting to feel better about trying to drop back into my life outside once this treatment gets up and running. I’m so afraid of feeling worse. I might feel worse at the beginning, that’s just a fact. It might take a while. But it should ultimately make me feel a bit better.

Maybe once I’m feeling better I’ll be ready to drop back into my life again. Walk out the front door (even if I have to walk slowly or even give in and get a cane), but I could walk out the front door and see what’s what out there. Maybe plant some flowers. Or go out and have a drink with friends. Go back to the office and see actual people and do work in the actual world instead of doing work from my actual living room.

When I’m feeling better maybe I’ll reach that point other more “mature” MS’ers always tell me about, the point where this disease isn’t the first thing I think of when I open my eyes, the only thought behind every other thought that goes through my mind every minute of every day and the last thought I think whilst swallowing my handful of nightly meds before I go to sleep every single night.

The people who’ve had this disease for awhile tell me everything I’m going through right now is perfectly normal. They went through it, too. I appreciate them sharing that perspective with me more than anyone can really understand. The thought that this might always be the way I feel is not a pleasant one.

Maybe when I feel better I will remember how to enjoy things again, including myself. That’s what I’m really wishing for.

Less than two more days. Two more sleeps before the next seesaw of hope and fear starts up all over again. I hope this one is the one that takes. I’m really wishing that hope wins more often this time.

Moods

A few weeks ago when I looked down at my hand while I was typing some email or other, one of approximately seventeen thousand email I send in the average day I noticed this. This is my mood ring. And it is quite clearly 100% black. 

I made a joke about it. I may have even posted something witty on Facebook about it at the time but the memory keeps coming back to me on this the seventh day from the day I will be getting my first Ocrevus infusion on Monday, May 8th. My mood is rather black and I’m having trouble shaking it. 

This is always hard. Having MS is hard. There is no way around that simple fact. It’s hard to have your life all of the sudden feel nothing like your life. It’s hard to feel trapped in a body, and sometimes even in a mind, you have so little control over. It’s hard to watch other people who have this disease speak of their daily run or their upcoming plan to climb a mountain when you’re over here trying to figure out how to climb out of bed. It’s all hard. I knew it was going to be hard. I didn’t expect having a chronic disease to be fun. 

This is so much less fun than I ever expected it to be. I feel like the hours in each day where I am conscious and useful and enjoying life get fewer and fewer by the day. That’s because they do. Today I was awake a total of 8 hours. I will be asleep again soon in hopes of making it out of the house tomorrow to get to work. I can’t even begin to tell you how much I need to go to work. Not for the work. I can do the work anywhere. I need to go to work to see my people. The people who remind me why I can’t give up. That’s why I need to get to work. 

I knew this was going to be hard but I didn’t expect how afraid I would be of the concept of hope. I have been playing around with hopeful thoughts all day, dancing around the edges of my broken synapses, luring me into their grasp with stories of fatigue relief. “I felt like a new person!” Said one woman in one article. “I felt my steady downhill regression start to reverse,” said another lady who’s story sounded a lot like mine (diagnosed as an older person, not having experienced what felt like a real remission since diagnosis). Other articles spoke of improvements in walking! Nobody ever talks about that getting better. These aren’t quacks or some crazy web site shilling bullshit stories – this is coming straight to my email box from MS News Today, a reputable source with scientific back up and links to papers only my new friend Alicia maybe could understand. 

I have no idea what’s going to happen or how long this will take to kick in. I just know how utterly, completely and totally dependent I feel with each passing day where my hours in a day get shorter upon the idea that I just have to feel better. I just have to. This is no way to live. I can wait it out. I can do positive things like read and rest and listen to my declining body in order to give it what it needs at any given moment – but I am utterly desperate to feel even a tiny bit better. 

One night of super hot temperatures in my house reminded me of the long, hot miserable summer I have ahead of me. The summer that seems to start earlier and end later with every passing year. It took one night of that feeling of oppressive suffocation for me to think, “sweet Jesus. I won’t be able to leave the fucking house for months when the real heat kicks in.” How will I get through that? I will get through it but what will I be like on the other side? Who will I be after more time in my house alone and more inability to even play along anymore. 

The best most ironic thing? I love being alone. And this disease is ruining that for me too! I read articles that tell me I’m wrong for my love of my solitude. I read about how too much screen time is ruining my happiness and how I’m doomed, doomed, doomed unless I figure out how to get out there and live my life! What if you can’t make it out there? What if you don’t even really want to most of the time?

Seven days to go and I’m overwhelmed with the fear of being hopeful. I want to hope that this is just what it is, and just what I expected it to be…a super shitty time between meds where things were gonna get ugly and I was aware of it, I am aware of it and that’s all it is. When you’re in it, though, when you’re in your fifth consecutive day of sleeping more than 10 or 12 hours out of the day and resting the other hours that you actually are awake because it feels like your body has been up for weeks and weeks running consecutive marathons – you start to get a little wonky. You start to think, “Jesus Christ. What if it’s always like this?”

What if I’m never a marathon running, mountain climbing MS-er who posts shots of her Fitbit on Insta celebrating how many miles she got in today and how many cups of vegetables she’s eaten or how much she’s out here sucking the marrow out of life because, goddammit, MS doesn’t have her! I’m starting to feel like I’m failing at this too.  I’ve failed at being a healthy person and now I’m failing at being a diseased person. 

Stop right there. Don’t panic. I know what you’re thinking and I want to put your mind at ease. Rational me, the one who knows better, knows this is just the bad part. This disease is full of bad parts and this is just another one. They come and they go and then there are the times in between when you just get on with it anyway and that’s how it goes.  

Irrational me, though, the one who gets really pissed off when I can’t keep my eyes open during the day but I’m wide awake at night or gets super overwhelmed when one hot day makes me feel like actual piles of crap or who gets really fucking pissed off that my accomplishments for the last few days – my “vacation” days – consist of actually showering one time and doing three loads of laundry that were mostly pajamas and yoga pants…irrational me is just so over this! 

Irrational me is just over the whole goddamn thing. Because she can’t stop thinking, “Oh my god, but what if it doesnt get better? What if this isn’t just the worst seven days? What if it’s just how it’s going to be?”

Rational me will tick one more day off the countdown. Tomorrow it will be 6 more days in the two month flush – one more day closer to something new and hopefully something if not great then at least better than THIS. 

Six. More. Days. Six more days of moods that swing from black to blue to bright green and back to black again from minute to minute. They’re just moods. They’re not going to kill me. I’ve been through this before. I can do this. It’s ok to have hope that things will get better. 

In fact, it’s important as hell to cling to that hope no matter how silly you feel doing it. Rational me is a smart cookie. I should listen to her more often. 

(On the upside…my nails look a lot better than they did in that hideous pic above because I did them myself this weekend and I freaking love my mood ring! Sage Fox Jewelry on Etsy creates cool stuff that gives me joy – even when it tells me I’m in a very black mood. I am a child of the 70’s after all.)