The blog post that almost wasn’t

Not my real desk. Not my real writing. I actually journal with an app these days. I’m so tech savvy.

By now, if you’ve read anything of this blog you know that I am a daily writer. I’ve written in a journal for over 20 years. I have stacks and stacks of paper books full of my scribbles. These days I use an actual app and I journal on anything – my phone, my computer and my iPad. Along with my Precious (aka my therapist Cheryl), I don’t have much hope of remaining quasi-sane without daily journaling.

Writing is cathartic for me. It’s something I do because I need to do it – not because I want to. I can’t not do it. So imagine how happy it makes me when you guys tell me you like reading something I’ve written. It’s beyond anything I could have ever wished for.

I started putting my personal writings on this blog because I needed a community. I needed to find people like you all that I could learn from. Real people with real MS who were bound to be so much better at managing this disease than I am at present. I have great doctors, I really do, but it shocks me to this day how The Great Scott, while clearly one of the very best among MS specialists out there, still doesn’t quite get it. I know this every time he asks me, “When did you last walk a mile, Maribeth.” I resist throttling him mostly because I like him and I need his big brain.

Unless you have MS, you can’t possibly understand what it feels like to have it. You can empathize and listen and love and help. I’m grateful for all of those around me who do these things consistently every single day. But you also need a community. So I found one. Props to http://www.trippingonair.com/ for being my original inspiration to take my writing public. You should check her out. She wins awards and stuff and is one of my personal favorite MS bloggers out there.

All of that said, I still write in my journal things that I need to deal with in writing first and foremost for myself. Things that are private (believe it or not, I do keep some things private. Not much! But a small few topics). After infusion #2 of the new goo (Ocrevus for the newbies) I found myself struggling to write Musions on My Newest Infusion #2, which would have been the next logical blog post. I went to bed, tired to the bone from the juice, but not able to sleep. So I did what I usually do when that happens. I wrote in my journal.

This morning, when I’d read over what I wrote to myself last night it made me realize that I needed to share it here with you all, as well. It was the best description I could give about how I felt about this infusion #2. So I’m repeating it here (verbatim, no editing so there’s probably a million writer mistakes included).  I should first apologize for this marathon long blog post. Folks that get through the whole thing might just be super human! People generally like short pithy posts, or tips or hacks or whatever. That’s not me. Oh well. Gotta be me.

So here it is:

It was infusion day today. Big number 2.

I haven’t blogged about it yet but wanted to talk about it here, with myself, because I’m already in bed too late for getting maximum rest before attempting to both shower AND get to the office tomorrow but my brain is in overdrive. (Probably that tiny pinch of steroids injected into my bloodstream today is making sleep elusive.)

It would be notable if I accomplished those amazing feats I mention above but I’d been hoping to get the same little boost I got from Ocrevus the last time (really the first time) and when I’m feeling unrealistically optimistic, I do stupid things. Things like emailing my entire staff and telling them I’m going to be focusing on getting into the office more after infusion day number 2 is in the bag. I may or may not have committed to being in the office tomorrow. The very first day after my big nearly 8 hour day at Allegheny General’s infusion center.

Not all that smart, am I? No you aren’t that smart, Beth.

I feel like I need to kick myself in the ass. Hit restart. I gave myself until this day, big infusion day number two, to stop believing this body simply can’t operate in the outside world as a regular, if slightly ability challenged, human. Today will be over in a few hours and I feel like I have to try harder to make it happen, to stop my brain from undermining every single little thing in my life.

The trick is, figuring out how to do that without trying so hard that I kick myself back into relapse again. Or fall (again). Or end up in the hospital (again). It’s really difficult to determine where that line is. My nose is still a bit purple! It’s literally as plain as the nose on my face, one might say, that pushing too far without realizing it can have dire consequences.

How far is too far? I honestly don’t know and that scares me. But there’s a feeling that comes over me. The feeling of a good day. I haven’t had one in quite a while but it hasn’t been so long that I’ve forgotten what it feels like.

It’s not specific to any symptom. It’s not just how I feel when my feet hit the floor in the morning and I walk a little easier. It’s not a sudden burst of energy. It’s not a lightening bolt when you look back on the day and realize you weren’t popping Advil like Skittles. It’s more like a slow realization that the pain suddenly is not quite as painful. It’s a feeling of lightness. A feeling of safety. A feeling of peace. It never lasts very long, at least not lately. But it’s the good place.

Those are the days when my MS is quiet.

The thing I always fail to realize on a good day is that the constant noise in my head is somehow not there. It usually runs on a loop in my brain daily. “I can’t I can’t I can’t I can’t I can’t…what if? what if? what if? what if? always always always always always… it hurts it hurts it hurts it hurts it hurts I won’t I won’t I won’t I won’t I won’t…” Repeat. That voice allows MS to put a veil over life that makes everything slightly less vivid. Slightly less clear. Slightly less appealing. Slightly less possible.

I don’t know how to stop that voice. I’m probably stupid to give myself some kind of clear line in my own personal sand to test myself. To force myself into action. To present myself with an actual date.

Take a shower. Leave the house. ON THE SAME DAY. Believe it works and it will work. Allow yourself not to be scared.

It all sounds so inspirational and like so much bullshit. It could actually BE too hard. I might get out of the shower tomorrow and feel like my limbs are suddenly made of over cooked pasta. I might fall down when my feet hit the floor when I get out of bed. The world around me could suddenly be spinning like a crazed whirly bird. I might throw up again. I might have something entirely brand fucking new like not being able to see right or one or the other side of my entire body suddenly going completely numb.

Any of that could happen. That’s what this crazy ass messed up disease actually does to our bodies. And it’s entirely unique and different for each of us. We can relate to each other (us who are in this strange club called multiple sclerosis most of whom are my digital friends, but not all). It helps to know that someone else had a similar thing happen to them that one time…but that only goes so far. Your MS is your MS and until you look it in the face and make some kind of friends with it, every day will be a complete and utter surprise. I literally have no idea from minute to minute, second to second, moment to moment what my central nervous system has cooked up for me with her girl Friday (my immune system). I have to just accept it. I am almost two years into this mess and I’m shocked that I still haven’t accepted it.

Listen. Here’s the bottom line. Every day is a complete and utter surprise even for people that don’t have MS. My unpredictability is almost better than theirs, all of those normals I mean, because mine has a name.

Theirs is just called “life” and holy shit that’s the scariest disease of all because it also changes moment by moment. I used to be one of them (a normal) and i know how I felt. I thought I knew how my life would change for a million different reasons…I had a plan. I was reasonably smart and I worked so very hard and made such important plans. I would tell myself that by being a good, kind, loving human being I would have my happy little place in the world. Things would go my way. They had, for the most part, so it was an easy myth to believe…But I didn’t know. None of us has the first fucking clue what’s going to happen on any day of the week. We just think we do. I know!

Maybe when I look my named disease in the face and accept all of that chaos I will begin to accept that disease isn’t always ugly. It has facets and eccentricities just like we all do. I think I know what it’s going to do. It’s going to destroy me. It simply has to. That’s why it exists! But maybe there’s more to it than that. Maybe disease can be a teacher. Maybe I can learn how to stop thinking the teacher is a mindless dolt, and start listening to her.

Or maybe I can’t. I honestly don’t know at this point in my own personal evolution. I have no idea what’s going to happen next. And neither does anyone else. This might sound crazy but that’s the part that makes me feel better. That I know that fact to be gospel-according-to-beth-truth. We never know. We never have known. It’s always been a complete crap shoot. And it still is.

Will I shower and go to work in the office tomorrow to triumph over the gauntlet I threw down for myself?

The truth is, I don’t know. I know I will try that’s all I know for certain.

Post Script:

My original plan was overly ambitious, after all. My day started today with phone calls at 7:30AM and then call after call after call until it was 3PM and I still hadn’t showered or brushed my teeth. I did make some important things happen with all of those calls so it didn’t feel like a failure to me. I just had to suck it up an accept that I was being overly ambitious.

It’s a good thing too. Because I did finally shower around 3:30 PM and that shower kicked my MS-having ass. I never would have been able to get done what I got done today had I attempted to go into the office after an early shower, as I so foolishly planned for the day after a rough infusion experience.

I know it will take some time before the new goo makes it’s magic. I’m there in my head now. But now that I’m finally physically clean? I’m going to the office tomorrow. Baby steps are still steps in the right direction. I’m giving myself a much needed pass on not holding to my commitment to be there today. In the end, I’m trying. I’m trying so very hard! That has to be enough.

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

 

 

The spaces in between might be the hardest

The bright…and the dark. I guess this post is mostly the latter.

Nah. That’s probably somewhat of an overstatement but it keeps occurring to me, in the last week or so, as I wait and rest and do everything I am told I should be doing to help myself get back to non-nauseous living that the spaces in between are the things we never talk about. I’ve avoided writing this post all weekend because I don’t find it very interesting reading, let alone writing.

When you have a flare or are in the thick of a relapse there’s something inherently interesting about that, even if you’re the patient. There are problems to solve. A thing that must be dealt with. Procedures to consider. Drugs to take. Hospitals to escape from. Information to share. All very interesting things to write about should you happen to be a blogger who writes about your life with multiple sclerosis. But once all of that excitement is over, there’s the rest.

The in between stuff is what really sucks because it’s really a whole lot of minutes that turn into hours that turn into weeks and then suddenly it’s been a month since the whole drama started that are full of a whole lot of nothing at all. All of the rest.

You fill the moments with email and conference calls and Law & Order reruns running in the background and talking to friends and being occasionally visited by co-workers, friends and family. You walk around your house seeing corners and details you never knew were there. But you don’t walk too much because you have to conserve your energy for exciting things like cat feeding and litter scooping before your energy runs out. You can’t quit doing those things because you are already so very weak! You need your “exercise” even if it’s just a few flights of steps in a day. You can’t give up your special work outs!

The days look alike because you’re wearing the same clothes (sometimes clean versions, sometimes not because laundry is suddenly like an Olympic sport) and you’re looking at the same face without makeup and without clean hair. The days go by and the nights get longer because even doing the very small things you are able to do leaves you physically exhausted and likely to be happily in bed before the sun goes down.

You read to keep yourself from thinking. So, you read a lot. You read so much you’re on book number 23 of 2017 and there’s no end in sight. You might break your personal annual book record. When you get tired of reading, you write. You write to help get bad thoughts out of your head and into the journal where they can fester without directly threatening your sanity. You journal about the things you could never write about on your blog. People would worry. You can’t have people worrying.

You are always waiting. The days and nights are chock full ‘o waiting.

You go to bed each night wishing and asking the universe to make tomorrow the day when you finally wake up feeling normal again. You get pissed off after you take a short trip outside and realize that the very most minimum of moving about in the outside world leaves you dizzy and eventually heaving into a portable puke bag that you stole from the hospital (I’m very slick like that). Every morning offers new hope of possible normalcy that is usually dashed by around 3PM when you frantically rinse out the stolen puke bag because you never really believed you would need so many of those damn things so you only stole a few.

Other moments are full of experimenting with medicines because in all of your alone time you’ve convinced yourself that you can manage this entire stupid situation if only you could figure out the right cocktail and timing for said cocktail. The drugs that help with the dizziness don’t help enough to make up for the horrible tiredness that they cause. The nausea drug added to that makes for an instant torpor that makes leaving the house out of the question. You aren’t sick when you take the drugs, but you are also pretty much a zombie and you need to function well enough to have all of those conference calls.

You begin to feel like a prisoner in your home. You convince yourself that mind over matter works with brain diseases and then you find out violently that you are terribly wrong. When you move around too much, you get nauseous. When you get nauseous you get sick. Repeat.

Yesterday I drove. My brother was my co-pilot for safety’s sake. I did OK. I walked around quite a bit. I didn’t feel dizzy. It was my experiment to see how I might get through a day should I decide to finally give in and make it into my office this week. I was initially jubilant because I felt like it was a good experiment. I got a little bit hopeful that I had finally come to be outside world friendly! I might be able to leave the house. In clothing that isn’t clothing I could and do sleep in.

Then around 4PM the dizzies hit. I was feeling very worn out. Food wasn’t even an option because my stomach was roiling. I desperately stumbled around the house looking for the clean, recently rinsed out puke bag and gagged into it for what felt like the millionth time in the last three weeks. Or has it been four weeks already? I think it’s been four weeks.

Going to my office involves a few really minor actions. Minor if you are a normal. I have to get dressed. I have to pack up my bag and get my computer in my backpack and get from my house to the car, from my car to my office and back again at the end of the day.

The thing is, before any of that happens I will have done two set of stairs down and two sets of stairs back up to my dressing room after doing my cat chores. So I’m already going to be worn out. Crazy, right? But even knowing that, I’m almost sure I could make it to my car once dressed without using one of my special portable puke bags.

But what happens once I get there? I’d have to walk from my car and into the office which involves actually going outside, carrying that backpack that holds my computer and my giant bottle of water, and probably using Stan, my new cane, to help make sure I actually make it from the parking garage to the building just across the street.

I’m not sure how long it would be that I was actually IN the office before I’d be desperately heaving into a portable bag but this time in public with people all around me. I mean, randomly pulling out a bright green plastic bag and hurling your guts into it at random intervals is often considered anti-social behavior in polite company.  Many of my closest work colleagues are traveling next week (to meetings I should be traveling to along with them but of course that’s impossible because I can barely drive or walk let alone fly) so I’d be forced to impose myself on people who maybe don’t know me as well or who I might not feel as comfortable with asking to hold my puke bag for me, ya know?

It’s also still hot here in Pittsburgh. Above 80 degrees hot and that, on top of all of the little things that are involved with getting me from point A to point B is the perfect combination of factors to ensure that this imagined scenario will play out exactly as I’ve described here. I know the weather for the next week promises some relief from the heat and humidity so maybe I could plan my week around that to give myself more of a chance of success. I am an obsessive user of any and all weather apps that help me plan out days when I am less likely to feel like shit on a shingle. This is also completely normal to me. This obsessive weather watching.

Guess what? All of this thinking and planning and strategizing has me exhausted again. It’s only 4:20PM and way too early for getting back into the bed that I just dragged myself out of at 12:30PM.

There will be more waiting. More days of wearing lounge wear and sporting bed head as I take conference calls and respond to email. More days of being annoyed by my cats who I really love a lot but whom I’m not accustomed to spending quite this much time among. They are needy little jerks. Sometimes I forget I love them. Then I remember and I feel guilty.

This is all to say that when you have so much time to just wait and think and do nothing much at all you get a little overwhelmed with the idea of making your life even a little bit more complicated by trying to accomplish any of it in the outside world.

My new plan is to wait until Wednesday to head to the office. It’s cleaning lady day. I need to vacate the premises. It’s supposed to be cooler and not as humid by Wednesday. Another good sign. Maybe a few more days of resting and sleeping and waiting and nothingness will leave me feeling almost human by Wednesday! I can hope. I never stop hoping.

The image above is a self portrait I did probably ten years ago before all of this insanity started. I used to paint with oils. I used to love painting but I can’t really do that anymore because I don’t have a studio in the house where I can shut out the kitties from chemicals that could harm them. I used to paint on my front porch which involved carrying my easel, my canvas and my paints outside and then back in again once I was done for the day. I keep my painting supplies in the basement out of kitty reach. More steps. I haven’t painted anything in a really long time probably all because of those steps and that carrying and my literal lack of energy for anything other than trying to live the most basic kind of life.

The moments in between are when you start resenting the hell out of things like that. That’s why you don’t like writing about them. The moments in between are the things you would really like to forget but you cannot because there are so damn many of them!

I’m told it won’t always be like this. I believe that, I really do. But it doesn’t make you any less pissed off in those many moments in between. You’re only human and so am I.

Don’t call it a comeback

I got cocky again.

I know. Shocker but hear me out. I had a decent day yesterday. I got through the whole 8 or so hours of my work day without taking antivert. I participated in a day long training session that I actually enjoyed and felt included in even though I was on the telephone and all of my colleagues were together in a room. I thought it would suck and it didn't. I had a good day.

I went to bed super early after reading a few more chapters of my super scary book (another distraction technique). I had cranked the thermostat down to my usual nighttime temperature of 60 degrees and I slept like a damn baby.

But I'd gone to bed after putting the chain on the door – which was dumb because I should have remembered that Kathy would be coming in the morning around 5am and she'd not be able to get in the house. Sure enough my phone ringing at 5am alerted me to the problem. I stumbled down the steps to unlock the door and then stumbled right back upstairs to go back to precious sleep. I knew I was going to try day two without antivert and I needed the rest.

But when my feet hit the floor once my eyes opened for the second time today, I knew I wasn't all together steady. I still decided not to take the antivert. I needed to try. I had plans later that afternoon to go pick up some groceries I had ordered online. My mom insisted on coming with me – just to be sure I was ok. All I had to do was drive a few blocks to the grocery store, call the number and wait for the guy to come out and put the groceries in my trunk. Easy peasy!

As soon as I stepped outside I knew it probably wasn't such a good idea. It was muggy and humid today. The air felt thick. As soon as it hit my skin I shifted into super slow mo. I opened my car door, the car that hasn't been driven in over two weeks, and went to sit down when the wave of dizziness came over me.

"Do you want me to drive?" Asked my mom.
"No, I want to see if I can. It's literally like two blocks and we'll be going slow," I said.

She didn't love the idea but we were already in the car so off we went. It took longer than usual for the air to cool off the car that had been sitting in my driveway in the heat for two weeks. I felt like I was suffocating. But we drove super slow. Every time I turned my head to look at traffic or see if I could turn my stomach did a little flip. We got to the grocery store without incident. I drove through McDonalds so my mom could get her favorite treat of late (iced coffee sugar free vanilla) and I got a vanilla ice cream cone. Then we drove trough the ATM so I'd be sure to have some cash if I was gonna be home and taking deliveries and paying off helpers and such.

By the time we got home, I declared myself a failure. The dizzies were back. I felt like I could lie on the floor and sleep for a year. I had another meeting to get through today and a tentative plan to go in the office tomorrow for a quick company meeting I'd planned earlier in the week when I was feeling optimistic. But after my short foray into the outside world, I quickly realized that driving more than a couple of blocks would be idiotic. I'd be doing that meeting by phone. Goddammit.

I've read all the articles and blogs and talked to all the smart friends and experienced MS'ers about how hard it is to come back from any setback when you have this disease.

I knew, intellectually speaking, that this would be the case after my short hospitalization. But in the back of my broken brain, I always seem to think I'm going to be special. It might be hard for other people, I'd think, but not me. I'm pretty stubborn. I can do things. Lots of things. MS is different for everyone! I could be an exception. I assumed I would be an exception.

I'm an idiot. As it turns out, the only thing about me that is exceptional as it relates to my multiple sclerosis is my incredible ability to deny what's happening right in front of my own two eyes. I didn't really believe I'd be going to the hospital in an ambulance (an ambulance for chrissakes!) until we were pulling into the ER ambulance bay and even then I was still in denial. Every night that I was in the hospital, I'd convince myself that tomorrow I HAD to be going home.

The depths of my denial are really difficult to grasp. I can be laying here in bed at 8:30pm, feeling my limbs give out and my back begin to ache and my head slightly spinning and still wonder if maybe I could be a-ok tomorrow and make it into the office for my little meeting anyway…

…yeh. Not gonna happen. I'm not outside-world-compatible just yet. I'm hoping that after (another) weekend of extreme resting and generally doing a whole lotta nothing, maybe I'll be feeling outside world ready by next week? Maybe?

I guess it's firmly in the wait and see camp right now.

Something knocks you down, in this case quite literally, then the ripples emanate outward into your life like rings in a placid lake hit by raindrops. They get bigger and bigger until they finally disappear and the lake is still, like a mirror, reflecting your own image back at you. The question is, what image is it that you finally see once the ripples stop?

Well. That, too, involves a whole lot of wait and see.

I've mentioned to a few people I've been in telephone meetings with this week how much I suck at patience. I'm not so good at the waiting and seeing game. I'm more the make it happen and change it if you don't like it kinda girl. Maybe that's why I'm good at my job? But this is one very clear example of a situation where taking too much action can put you right back where you started…and we've already established how I will not under any circumstances be going back to the hospital any time soon if I can help it.

Even if it kills me, I need to find my inner zen and wait this shit out. Then I need to take baby steps, literally, before I can really walk. Then I will start PT and little by little I will get stronger – but it will be little by little. That's just how this stuff works.

Sometimes I think this is happening to me because the universe is trying to teach me an important lesson. Slow down. Stop trying so goddamn hard. Just be. Just breathe. I wonder how dense I must be for the universe to think she needs to give me a freaking chronic illness with which to teach me these important lessons. Couldn't the universe have just made me like yoga?

Nah. I'm a "learn the hard way" kind of girl. I will be dealing with these particular ripples for as long as they feel like sticking around and I will just have to accept that.

On the upside…I can read a bit easier and also watch television. I bought some new sticky tread things for my death trap of a shower hopefully making getting clean not so much of a feat. I also have mini-hair and eyebrow day in my kitchen tomorrow evening because my beloved friend and hair wizard knows me well enough to know I need to be cleaned up a bit in order to feel closer to normal and going to the salon right now is also pretty low on the list of things I should be doing right now.

It will all work itself out. I will be ok. I just don't know when. And that just has to be ok.

Life on the inside, ep. 1

I have no choice but to laugh. Kind of.
So for those just catching up, I took a bit of a turn for the worst earlier this week. I woke up on Thursday to some significant vertigo that was quickly followed up by violent vomiting. 

I heard the MS Club rule book in my head, I forget which rule it is but it states that no new symptom can be attributed to an exacerbation of your disease unless it lasts for more than 24 hours. So I tried to wait it out. This may not have been the best choice. As the day went on I became basically bed-ridden. I couldn’t eat or drink without violently being ill. I called for help. Mostly because I couldn’t feed my cats or scoop their litter because stairs were pretty much out of the question unless I had a straight up death wish. Clearly, my priorities are straight. 

My mom and my sister came to my rescue. It was after a few more hours then watching me lay in bed moaning that we decided to wait it out. My sister came and slept on my couch (where she promptly was set upon by my very many felines who wanted to play with the new girl in town). When I woke up the next morning, I couldn’t quite believe it was possible but I was much worse. No food stayed down. No water even stayed down. After a call to quasi-nice Nurse Carol, we decided a trip to the ER was in order. I couldn’t stand up without vomiting or falling over, so we had to call a freaking ambulance. I mean…good gravy. A freaking ambulance. 

Since then, I’ve determined some important life lessons…

1. Ambulance guys know their shit but the journey getting this less than petite lady person out of the house felt nothing less than death defying. It’s humbling when it takes 5 grown ass men to move your limp self to a gurney. Ego hits! They just keep coming. 

2. The ER via ambulance plan itself was definitely the best option. No problem getting in and situated in my emergency cubby thing. One can’t quite call that a room. It was a cubby. With five other cubbies full of people at least as bad off or worse than me. 

3. The “bed” in the ER cubby was barely a cot made of royal blue rubber. It smelled like a new pool floaty when you take it right out of the package and you need to blow it up? It smelled just like that. It was extremely un-bed-like in any way. 

4. It’s a good thing I had that nice bed because I was to be laying on it for almost 9 hours. Apparently the hospital was “full to the gills” based on many heat related health issues all over town. Yet another reason to love the heat! My sarcasm skills are going to a whole other level around now, in case you were wondering. 

5. Because I’m a woman of a certain age with severe vertigo, they had to rule out stroke. Even though I have MS and it was a pretty good bet what was happening…CYA levels at hospitals are off the hook. So I had several very wild and wooly head manipulations by several different neurologists. Then a CAT scan (another first!). And still not admitted. Back to smelly the blue raft bed. 

6. MRI is scheduled, then, at 9:45pm. That appointment gets rescheduled no less than 5 times because of “lack of proper transportation.” Around 10pm, though, I am joyfully told I’m going up to a super comfy patient room. Finally! Some relief from the blue puffer bed. 

7. Or not. My hospital bed is also covered with the blue pleather-like material covered in a fitted sheet, a definite improvement, but it gets so hot in the night I seriously fear I may self combust in the hospital itself. 

8. I explain to the night nurse that I’ve not had food or water in my system for almost 35 hours and I’m feeling like I need both stat. “Oh…I’m so sorry but you’re on the stroke protocol and that means no food or drink tonight.” What!? I promptly lose my shit. “Call someone,” I all but bellow. “Im dying over here.” She calls. It takes three more calls to find out they’ve made a mistake. They can give me food. 

9. “Food” is a better term for the world’s saddest looking turkey sandwich and a cup of apple sauce. I haven’t eaten apple sauce since I lived at home and my mom made hers from scratch. I scarfed up that nasty purée faster than you could whistle Dixie. That’s how hungry I was. 

10. “New plan! No MRI tonight. But we’re gonna start you on Solumedrol tonight and start the drip at midnight. The neuro thinks this is more likely an exacerbation of your MS.” Omg, ya think?!? So they pump me full of crazy energy drugs at midnight. I asked for a sleeping pill. “Pharmacy never responded.” So yep. I was up pretty much all night obsessing about how horrible my “bed” actually is. 

11. I cannot get out of my bed without help. To pee even. I stand up? I fall over. The night time nurses aids each weigh about 75 pounds soaking wet. “Hold on to us,” they twinkle at me, “We have you.” Um…just. Sigh. 

12. Thursday, the day I took ill as they used to say in old school novels, was to have been a shower day. Chew on that for a moment. I’m officially categorized that thing that my dearly departed husband used to refer to as a “dirt pig.”

13. People keep complimenting my “awesome hair.” I am being punked because I am desperate for a hair cut. My hair is the shape and texture of baby doll hair (see number 11). And because of the Great Bleach Debacle of 2017, my hair is quite literally half dark brown (riddled with gray) and half bright white blonde. It is not nice to punk sick old ladies. 

14. Secret deodorant works for a really long time without reapplying. Pass it on. 

15. Hospitals have these amazing things called “bath wipes.” They are heated. They have soap in them. They require no rinsing. I am planning to steal many of these wondrous things on my way out. I feel I deserve them. Hell. I’ve earned several packs of those wonder wipes. Easily. 

16. Mostly because after my MRI at 8am this morning we’ve generally concluded that I do indeed have a new lesion on my vestibular spine where my spine meets my cerebellum which is where balance is controlled. Hence the general hideousness of the last few days. Hence the IV steroids. HENCE ALL OF IT. 

17. Nuerologist #5 tells me they are going to keep me at least a couple more days. More IV steroids. Then she asks me, “what is your living situation at home.” I didn’t even think before I answered, proudly, “Oh, I live alone.” 

18. WHY DIDN’T I LIE?!? “Oh. Well then. We will have to get you in some PT before we let you leave then. We need to be sure you can handle yourself at home alone.” I mean, if she could see me at home basically every day of my life they may have committed me to inpatient care a real long time ago. FML (to be blunt). Honesty is FOR SURE overrated. 

19. If you’ve ever had IV Solumedrol you know that shit taste it gives you in your mouth. I asked for something to suck on – hard candy, life savers basically anything to cover the horrible metal taste in my mouth. Guess what? Yeh. Exactly. In a hospital where they administer this stuff all of the time, they have nothing. Zero. Nada. 

20. I’m gonna smash that chocolate pudding. Even if it does taste like bad metal. 


In short, I’m gonna get fat on fancy carrots, chocolate pudding and full calorie ginger ale for the next couple of days whilst being held hostage at Allegheny General Hospital. 

The one silver lining? I finally found a Law and Order channel on my tv. It’s not SVU, I couldn’t get that lucky.  But I’m learning to love Jack as ADA again. There really always IS a silver lining. 

(Sarcasm game? ON POINT).

Also for everyone who has reached out in so many ways, thank you. Every single one of you. This would suck even more without you. 

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.

New flash: I still have MS

The eye roll emoji has become my favorite lately.
Here’s the thing: If you’ve had MS for years and you’ve gone through these early years of highs and lows and more lows and lower lows before and you’ve come out the other side with a more even keeled way of looking at the world and your disease, I envy you. I envy you a lot.

Being on this teeter-totter of symptoms, emotions, life crises, lost days, quasi-hopeful normal days, more frequent ultra shitty-shitty days is not fun. It’s hard to know how to feel from one moment to the next. Because I had a decent couple of days this week (now I am realizing that were very likely caused by my hit of that magical substance Solumedrol and not some fast-acting miracle of the new goo), I decided to try getting back to my old routine.

I went into the office three days in a row. I moved around more than I have been able to do in weeks. I showered and got dressed and went into work with clothes and makeup on. I felt weird, but OK, so I went with it.

I packed up most of my office in preparation for our office move later this week. I took a few walks down memory lane, looking at old pictures and remembering my 14 years so far with this company, fondly. I went home at night tired. I went back in the morning. I managed.

Here I am at the end of the week realizing something pretty obvious. I don’t feel that much better at all. I just fooled myself into thinking I did because I wanted to so badly.

I realized this as a result of two things that happened today that are undeniable evidence that I do, indeed, still have MS:

  1. Evidence the first: I managed to get myself to my MRI appointment at 7:45AM this morning without incident. I had to get this appointment in before my next Ocrevus infusion as ordered by The Great Scott, and Saturday morning at the ass crack of dawn was my only option between now and my next infusion. I did fine. I listened to the banging and the humming and the thrumming of that horrible machine for half an hour and then I was done. I got myself a post-MRI souffle (my favorite early morning treat) and came home to climb back into bed. And then I proceeded to sleep until 4:30PM.  I slept all damn day. I struggled to force myself awake because I knew I should. I dragged myself to Target to get a few things I needed but mostly just to get myself out of the house before I fell back to sleep again. Halfway through my trip to Target my legs started to do that thing they do – that shaky, heavy, dragging thing they do – and I was grateful to have the cart to hold on to. I had to rest in my driveway before unloading. I felt defeated.
  2. Evidence the second: A little later, I was emptying the Litter Locker on the second floor because it had gotten too full and I needed to start a fresh bag. I began my descent down the steps carrying my big bag of kitty poo, my bottle of water (always in my hand) and my phone (also always in my hand) and stepped down the first step…and promptly fell on my ass. I fell backward. Back on to the hallway floor. I dropped the bag of kitty waste (thank the good lord above that the bag didn’t break). I dropped my phone and my water bottle and landed flat on my ass on the floor. I just had to sit there for a minute to collect myself. Then I grabbed the bag of kitty waste and proceed down the rest of the steps. I had to go back up for my water and my phone. I couldn’t manage all of those things at once. I did NOT get hurt. I have ample butt padding that I really just sat hard on the floor, not really a fall at all, more like an unexpected sit. I just hadn’t planned on sitting on the floor so hard in that particular spot at that particular time so I guess it surprised me.

I came down to the living room and realized, I don’t have any energy again. I slept all day. I did almost nothing. And I am about to go to bed again. I wanted to paint my nails. I don’t have the energy to paint my nails. Or watch television. Or do any other thing I was going to do on this Saturday night. I am going back to bed and I’ve barely been conscious a total of four hours so far today.

It gets demoralizing, all of the hoping and having the hopes dashed again. It gets exhausting pretending to feel OK when you don’t, and wanting really really badly to get back to your old routine and then realizing that your old routine wears you out to the point of falling flat on your butt out of nowhere sitting, stunned, on the floor beside a giant bag of poop.

I know there is hope. I know I’ve only had half of one dose of the new goo. I know all of it. I just felt good-ish for a couple of days and it made me really happy to feel like that. Going back again, so soon, is kind of crushing. Like I keep getting reminders that I do, indeed, still have MS as much as I would like to pretend I don’t. Nothing works that fast, nothing really works to eliminate existing symptoms at all, really. It’s only going to keep me from getting worse.

I wanted to feel better so badly!

And that’s why I envy you, mature-in-disease-years MS people. I envy your level headedness and your long view. I envy your earned ability to take all of this in stride because you’ve been dealing with it for so very long, it’s just normal to you now. I envy your ability to frankly accept that no good day means ALL good days (just like no bad day means ALL bad days). I envy your ability to manage all of this and not let it get you down. You accept it. It just is.

My old life is too close in the rear-view mirror for me to accept all of this just yet. Objects in mirror are indeed closer than they appear.

I still fight it. I resist it. I don’t want to believe that this is just how it’s going to be now. Forever. It’s just how it’s going to be. No highs will last and no lows will be always. The teeter-totter is life. There is no adjusting. There is only accepting your complete and total lack of control over just about any little thing.

Sometimes I can. Sometimes I look at this and think…Well, we all have to learn this lesson in life somehow. I just have a disease to force me into it. Other people will have to learn it too because all control is an illusion. There is no control. I learned this once before. I am learning it again. They (the normals) will have to learn it too, someday, it just might not be as obvious to them as it’s happening, like it is to me. This is the single lesson of life none of us can avoid.

Taking the high highs and the low lows in stride is the secret to life. It’s definitely the secret to successfully having multiple sclerosis.

I am looking forward to being a sage old MS’er some day. Where I will look fondly at newbies like me and think to myself, “Ah! I remember when this was so hard every day. Thank god those days are over.”

 

 

 

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.

The Home Stretch is Rough

I’ve been holding it together. Mostly. The two month flush is for real, though, and I’m back to that place where I feel like my body is just out of fuel.

I’m off work today. I scheduled a bunch of random vacation days, now known as days that look like most other days but now with less guilt, so I planned to take it easy. I was going to allow myself a bed day. After the busy pace of the last week, I needed it. My mom, though, needed to get out of her house so I rallied to meet her for lunch. And by “rallied” I mean I got out of the bed, put on yoga pants and brushed my teeth. I didn’t even look in the mirror. My bedhead today is epic.

We had a lovely little lunch. Nothing too taxing. My mom saw me struggling to get across the parking lot to the restaurant and she said, “Shake it out. Get some movement in those bones. That’s what I keep telling your dad.”  I smiled at her. If only she knew! There was a time that shaking it out and getting moving really did help. That time seems to have passed. Now, literally nothing helps.

Late last week, my new primary care doctor was talking me through my medical history. What a walk down memory lane that was. I remember her saying to me, “So you don’t feel rested even after a good  8 or 9 hours of sleep?” I kind of laughed at that thought. “I never feel rested. I pretty much never feel rested at all. Nothing helps.”

Exercise might help, everyone says it does. How do you do that, though? When do you do that? I sincerely can’t figure out how that would work. I can barely drag myself up and down the steps to do the laundry. How funny…I’m out of yoga pants and pajamas so I am currently doing laundry. Very slowly. I make it down the steps long enough to sort, toss a load in and rest. I make it up the steps to rest long enough for that load to get clean before I have to climb down and back up again another time. Parsing out tiny pieces of the day between times when my body tells me it has to stop for awhile before parsing out the next tiny window of activity.

I tell myself to stop it. I have to get through this, this super shitty very long several weeks where my body has hit “E” and is literally trying to operate without fuel. It’s almost over. It’s only another week. A little over 7 days, actually, where I can give myself a pass and just try to keep up with what life I can until the day comes when I get juiced with something new. I have no idea what the new goo will do or how I will feel once it travels its way through my bloodstream, but I have to believe it will help me feel better than this. I’m kind of over this, to be really honest.

I was told to prepare for a long day at the infusion center on May 8. I have my ride lined up. I’m all ready in every way possible. Now I just have to look these next ten days or so in the face and keep moving from point A to point B even if I have to rest a really long time in between.

Get your bones moving, she said. Shake it off. Damn. I wish it was really that simple. Ten days seems like a lifetime right now. An unending span of tiny tasks and small sets of stairs that will feel like running marathons and climbing mountains to me. Ten more days of opening my eyes in the morning and immediately wishing I could close them again for at least another 8 hours (or maybe another day or maybe another week). Ten more days of stumbling around like a drunk woman who hasn’t had a drink in months.

But it’s just ten days.

 

 

We’ve set a date!

Or, more accurately, so happy for ME!

I am running on fumes people. FUMES. Each day further away I get from my last Tysabri infusion gets a little worse. There are a few less hours in every single day that I can function even remotely like a human person.

On the upside, I received the news today of my date for my FIRST Ocrevus infusion. It’s gonna take 7 hours. But it’s on MAY 8 and I cannot wait!

It better freaking work. Or…
#itbetterfreakingwork #thecountdownbegins